Daily Learning to Walk

A gift on Sunday

2011-03-02T09:07:00.002-05:00

I wish that I could print pictures from my brain. If I could I would play back my church service from this last Sunday. Let me try to describe it for you.

In our church there is an area between the back row of seats and the back wall. It's open and carpeted and perfect for a little guy who likes to walk around, read a book or snack on cookies during church. It's where we usually make camp on Sunday mornings. So when I stepped onto the platform in the front of the sanctuary with the choir I looked for my men in the back. Neither Dave nor Aiden were there.

Our choir director was sharing some scripture that had really spoken to her and was talking about the song we were going to sing (Never let Go). I have to admit that I wasn't paying as much attention as I should have because I was still looking for Aiden. That's when I saw him. He had walked down the side aisle and was peeking around the front pew.

Aiden did the rounds; he visited with Pam as she spoke, visited with the pastor's wife, the elder and his wife. He walked to the other side of the sanctuary and looked at the kids sitting in the front. He walked over to one of our exchange students who promptly scooped him into her lap where he stayed until the song was over and then he returned down the center aisle to visiting on his way back to Dave.

"Yeah, that's cute Christa, but what's the big deal?" you may be saying to yourself. Well here it is. Firstly, I had just shared with the congregation what you read in my last blog...that I had been questioning God's wisdom in placing Aiden with us and that I realized that I needed to rely on the Lord's power for my strength. Secondly, God, in His grace and wisdom, has placed us in a church family where Aiden, instead of being seen as a problem or a distraction, is seen as a gift and a miracle. The elder or his wife, the choir director or the pastor's wife could easily have whisked Aiden back to Dave and rebuked us later for allowing our child to wander in during the service. Instead, I was encouraged to remember that Aiden is not only a miracle to my family, but also to our collective church family; that he is a blessing and reminds people of God's faithfulness and love. Finally, I was reminded by Aiden's walk around that God has allowed me to have some part in this child's progress.

I cried as we sang "Oh no, You never let go through the calm and through the storm. Oh no You never let go in every high and every low. Oh no You never let go. Lord you'll never let go of me." He won't ever let go. I can trust that even on the days when I feel like I have totally blown it and I want to hang up my mommy crown He will carry me; even in the middle of the night when I can't figure out why my son is running a fever or my older kids refuse to comply I can trust that He will guide me (if I listen). He'll never let me go.

Blessings to you all on this day.
Christa

So you think things are under control

2011-02-26T11:12:00.003-05:00

You know how sometimes you think that you have everything under control; the clothes are washed and put away, the dishes are done, the toilets are clean and the kids are behaving? Everything seems to be in order and life is good. Then the dam breaks and all of the under control things become the out of control things! This has been my life for the last several weeks (actually since December 27th). "What in the world happened?", you may be asking yourself. Well, I am going to give you the short (though not sweet) version of the last 2 months.

The evening of December 27th Aiden did something to his foot/ankle. We really don't know what happened, but suffice it to say, we ended up in the ER with Aiden unable to take weight on his left foot. He was put into a splint to immobilze his knee (because that was where we thought the injury was) and we headed home. Turns out the reason that he whimpered all night was because the injury was to his foot/ankle and it was totally unprotected!!! So to the orthopedist we went the next day where Aiden was put in a walking boot.

I thought that all was well until Friday (Dec 31) when the skin on Aiden's ankle showed some blistering. Because of the way his ankle rolls in it was rubbing on the metal brace. Skin break down is a really bad thing so the splint had to be changed. (Just for fun, let's see how many of you know how many doctors are in the office on New Years Eve day?) I spent an hour on the phone trying to find the ortho on call, have him call me back, etc. Finally, we ended up in the same ER having them build a posterior splint. We had difficulty two more times with his splinting. It was so bad that at one point during the five week recooperation time Aiden had to stay strapped into his stroller to keep him off of his foot.

January 25th provided us with a clean bill of health from the orthopedist!!! Aiden was released to walk to his heart's content (and he has)!

Just over a week later (8 days to be exact) Aiden began vomitting (and vomitting and vomitting). He vomitted 18 times in 2 hours. It was like a massive barf-a-rama! Turns out this was the start of influenza; you know the respiratory thing! He ran a fever of in excess of 103 without ibuprofen for 8 days. It took another 4 or 5 days for him to start feeling like himself again. Although Addison and I managed to dodge the influenza bullet, Dave and Aaron succumbed to the virus. It was miserable around our house; hacking, coughing, snot everywhere. We went through 5 or 6 boxes of tissues in 4 days! ( I should buy stock in Kleenex!)

As everyone began showing real signs of recovery I drew a deep breath of relief; finally we were all healthy. I should have waited just a couple of days. This past Wednesday I woke up exhausted. Aiden had been whimpering all night long. I knew that something was wrong, but he was never awake so I just listened; all night long. I got him up early and we went down stairs just in time for the vomitting to begin. ("Not again", you may be saying...imagine what I was saying :) Seems that Aiden, almost over night, became constipated! Ughh!!! Just when you think things are smooth sailing (there is no sailing). Two enimas and three doses of Miralax later and things are finally moving normally. I never thought that I would be so glad to have to change a poopy diaper.

Last night, as I pondered all that has gone on over the last two months I came to a conclusion. I have been working this program on my own. I have not been trusting that the Lord has things in His control. When we started this cycle in December I was just stunned and I could feel myself loosing the battle over despair. I wanted to know how things could be so hard for Aiden and why I wasn't able to protect him. (What a defeating feeling to not be able to protect your child.) The feelings only got worse with each time the splinting didn't work. Once the flu started I was not holding on to the hand of Jesus; it's hard to hold on when you're hiding your face in your hands. My heart was so defeated that I could only hide. Unfortunately, I was not hiding myself in the Lord.

I would love to say that I saw the error of my ways and turned to Jesus for His help, forgiveness and strength. Actually, I grumbled, complained and agrued with the Lord. (Really mature, huh?) Needless to say, it was ineffective. I think the Lord let me wallow so that I could realize that it could be worse, and I was powerless to control it. (Enter the constipation issues!!)

Since this last hurdle happened just this week, I am not beyond this struggle. I am right in the middle and praying that today will bring me one step closer to walking beside my Savior. I know that right now I am being carried since I am so unable to move forward on my own power. I want to find rest, solace, and refreshing in the Lord.

But those who wait on the Lord [who expect, wait for, and hope in Him] shall change and renew their power; they shall lift their wings and mount up like eagles; they shall run and not be weary, they shall walk and not faint or become tired. Isaiah 40:31 amplified

I want that to be me; on wings, not tired, finding victory over the day to day events that can drag me down. I am waiting on the Lord for guidance and healing.

Thanks for wading through all of this mess. I am sorry that it was long and drawn out, but it has been two months. Please pray that I am able to spend time with Jesus daily and that health descends on my home!

Blessings to you all,

Christa

Christmas morning...thoughts of Mary

2010-12-25T11:35:00.003-05:00

I promise that later in the day (or maybe tomorrow) I will have a brighter outlook on this day of days, but right now I am really struggling; with the celebration, the beauty, the uncertainties, the ultimate loss. I look forward to my Christmas miracle and I have ever since we knew that Aiden was different. I haven't seen it yet, but I still hope.

As I await my miracle I realize that this day is in essesnce the celebration of a miracle. More than 2000 years ago a young woman (much younger than me) was entrusted with the responsibility of firstly accepting the fact that she was pregnant, unmarried and still a virgin. Then in the midst of the whole thing was carrying the child that would be the savior of the world; the messiah. I cannot imagine being required to wrap my mind around all of that, much less grasp the enormity as a teenager! (Remember that Mary was probably only 15.)

But this morning, as I have been sitting and really struggling with what I see as the probable outcome for my littlest one, the son of my heart, I wonder at Mary's ability to "treasure" the things that were said about Jesus in "in her heart". Did she truly understand the end result for the child she would raise as her own? Did her heart break a little each day as she realized that with each day that Jesus grew into a man he was walking closer to the end that would ultimately be required of him?

I cry, sometimes daily, for the possible outcomes I see in the future for our Aiden. I cry for myself because it is sometimes so difficult to face each day knowing that "normal" will never be normal for our family. I cry for Aiden because he may never understand; how much we love him, what he could become, what the world holds. Then I cry again because I am so small minded that I don't regularly see what blessings I have been given in the fact that I am priviledged to parent such an amazing child; one who works so hard everyday, who loves as much as he can and gives freely all that he has to give.

All this to say, Thank you Lord Jesus that I am not faced on a daily basis with the fear that my son's ultimate end will be an early death. Did Mary know? Did she know?

Today as you and your families give gifts and enjoy eachother remember how blessed you are. I don't say this because you may be a family with children facing no challenges, I say this because no matter the challenges we are blessed; all of us.

Pray with me today: Thank you Lord for the blessing of all children. Give us eyes to see the gifts that we have each been given; life, love, opportunities to bless others, family, the privilidge to praise and worship the God who created the universe. Show us your will for us this Christmas. In Your name Jesus, Emmanuel, God with us,
Amen.

Blessings to you all this Christmas day,
Christa

A Christmas tradition

2010-12-22T17:46:00.012-05:00

Christmas is a very sentimental time for me; not only is it a special holy time in the life of a christian, but it is also my birthday. Therefore, I attempt to keep my focus on the reason we celebrate instead of on the busy-ness. One of the ways that I try to do this is through books; Christmas books and lots of them!

I have repeated several this year: Shepherds Abiding (Jan Karon), Christmas in My Heart (Joe Wheeler). My devotional this year is a repeat too; The Power of a Christmas Prayer (Stormie Ormartian). Of all of the Christmas books that I have read this season this devotional is hands down the most amazing. It puts you in the middle of the lives of Elizabeth, Mary, Zacharias and Joseph. You are able to feel the excitement that Elizabeth and Zacharias felt upon hearing that they would be parents. You are put in the place of a young unmarried woman who finds herself pregnant and you struggle with Joseph to do the best thing in their situation.

I am a little behind in the reading ( I should be somewhere closer to the trek to Egypt). Today I was with the shepherds on the hills outside of Bethlehem. I saw the heavenly hosts, heard the angels as they sang, fell to my knees with wonder that the Lord God Almighty would find me worthy to hear such an announcement. I was (and am) amazed.

The shepherds were lowly people in their society. They were not important to anyone (except the owner of the flock). They made little money, had little power and little significance. They were nobodies. Honestly, there are days when I can relate.

But you know, God found them important enough to hear His heavenly announcement. He saw them as worthy enough to seek out the baby and his parents; to be among the first to worship the Emmanuel, God with us! Their job was to go and see without asking the reasons why. They were blessed because they went. This gives me great insight into the way God sees us. There are no lives without significance in the eyes of our Heavenly Father. We are precious to Him and of great value.

In our home, where we live daily with a child who is different in the eyes of society, we are faced with the chance that someone will look at our little one as less than worthy; insignificant. I have to be reminded that it was to the shepherds angels announced Jesus' birth; through the shepherds that news of Jesus' birth was spread; that shepherds were the first to humbly approach the stable to worship. These lowly men were granted the blessing of all time and through them others were blessed with the news.

Aiden is our shepherd!

I have heard the news that God loves even the lowly. I am seeing that I can live the life of a patient woman. As a family, we are learning to see miracles in the small things daily. I can see the face of Jesus in Aiden's eyes daily.

Friends, as you celebrate the birth of the Son of God, Emmanuel, remember that no one is outside the hand of God; not even the lowly. And on the days when you feel like you are lower than the shepherds remember that God uses the humble and gives them grace for everyday.

O, Come let us adore Him, Christ the Lord!!

Christa

My baby is growing up

2010-11-23T22:15:00.005-05:00

I remember sitting on the couch, bloodpressure 159/99, waiting for the doctor to call to let me if I was going to be induced. I was miserable and definitely ready to have the baby who was making me feel so bad.

I had been on bed rest for about 6 weeks before Aaron was born. I was seeing stars, had carpal tunnel in both hands, was gaining weight daily, and had been attached to the stress test machine so many times I could hook it up myself! I was ready to be done.

An early morning trip to the hospital set me up with medication to induce me, glucose and because of my preeclampsia, magnesium sulfate. Apparently, Aaron was not quite ready to be born. There was no baby that day (what a disappointment).

So after a restful night in labor & delivery(oh I am being so sarcastic right about now!!!) (No disrespect to any OB nurses out there; I love you!) my doctor decided that my bag of waters should be broken. This certainly moved things
along. Aaron was born 5 hours later.

What a change this spectacular event has had on my life. November 14th 1997 was not only the birth of my son; it was the birth of our family. Dave and I let go of the freedom of being a couple and gratefully (and fearfully) took up the mantle of parenthood. I have never truly regretted that choice.

The blessings of parenthood have and continue to be overwhelming; hugs and kisses everyday,

laughter and smiles regularly, an opportunity to see childhood through someone else's eyes and to

even have the chance to do some of those things

again.

To Aaron I am forever grateful. He made me a mommy. His birth showed me that I could love someone with my whole heart in minutes. I grew up the day Aaron came into the world. Through him I have learned that you can "make bread" in the sandbox, "nakes" from the birch tree aren't really scary, and everyday can be my "shining time".

We celebrated this birthday with a camp out at the house. Five guys outside with fire, hobo meals, and s'mores. It was a coming of age activity for Aaron and a getting old activity for me. But honestly, I am so proud of the young man that he is becoming.

Blessings to you Aaron. I love you so much.

Mom

A SCARY DAY!!!

2010-10-29T23:58:00.002-04:00

I feel like for the most part I am a level-headed person. I have handled some pretty serious emergencies in the past; bloody noses, bloody lips, broken arms, etc. As well, for the most part, I try not to live life in fear of the bad things that could happen on a daily basis. I have to admit, however, that since Aiden was born my level of anxiety has been higher. Still, I do try to keep things in perspective. This having been said, when we got a call from Aiden's attendant Tara on Tuesday last week I was a little scared.

Dave and I had gone out to have a quick cup of coffee before he had to go to work last Tuesday. Let me tell you, it was a quick cup of coffee! We had only been in the restaurant for 15 minutes; just long enough for the waiter to put the coffee on our table and for me to get my requisite 5 creamers and sugar in the cup. With my first sip (and my last) my phone rang with the message that Aiden was not acting right and we should come right home.

Dave and I sprang from the table, paid for the coffee, cancelled our breakfast order and headed out to our cars (we had driven separately so Dave could head to work). I have not driven that fast in a long time!!! On the way I was talking to Tara about the incident and calling the pediatrician's office. We were advised to bring Aiden to the office immediately.

I would guess that by this time you are wondering (especially after the lego choking incident) what was happening. So here goes. Aiden had been running a fever since Sunday morning. By Tuesday morning his fever seemed to have broken and when Dave and I left he was fever free. Apparently, between the time we left and the fifteen minutes to the call from Tara his fever went up, rather quickly. While standing watching TV Aiden started to shake (the doctor thinks that he was shivering). He was also grinding his teeth (perhaps because he is unfamiliar with the way chattering feels). He did not; however, loose consciousness, become rigid, fall, drool or loose control of his bowels (bladder is up for grabs).

We have been told that if Aiden didn't have seizures by 3 he was not likely to have them. I do not want to think that this was a seizure, but it scared me like I haven't been afraid in years. Now when Aiden yawns or his eyes begin to cross a little or he looses his balance I feel fear begin to grip my heart. I feel like we have seen so much progress; so many steps forward. Seizure activity would be a gigantic step back. My heart breaks with the thought and I cry out to God, "Lord what are you doing?"

I am doing my best to step away from the "what ifs" and focus on the facts. God is good all the time. He loves Aiden more than I do. He loves me more than I do! :) His desire is for our good. Finally, because I am a God's child fear has no control over me.

Please pray for us. Pray that Aiden has no other incidents. Pray for me; that I am able to rest in the Lord daily. Thank you all so much for remembering us.
Blessings,
Christa

Another first for Aiden

2010-10-18T13:49:00.003-04:00

I have really been struggling with the best way to provide Aiden with the best education possible. Don't misunderstand; I am not interested in the least in sending Aiden to public school. I am convinced that they would be unable to provide the protection that he requires and as a result, I would either feel obligated to be in attendance or I would have daily anxiety attacks worrying about him. This having been said, homeschooling is the best option.
So the job of finding the right program for Aiden became my focus. I haven't been putting it off.

I have actually been looking for programs for him for over a year; hours on the internet searching.....phone calls, emails. It has been consuming. I believe that I've found a good option, but I really want Aiden to have the opportunity to be with other kids; to learn to play and maybe even have a real friend someday. (What mommy doesn't want that for her child?)

So how do I make this happen for Aiden? Firstly, we have been working on attending some part of Sunday school weekly. I go with him (I get to play too!) usually for snack and praise time. (This Sunday he made it through the puppet program.) As well, Aiden is attending the Messy Class in our homeschool co-op.

The Messy Class is all about getting your hands dirty. Aiden attended his first class 2 weeks ago Friday. He got to play with homemade play dough. They had primary colors: red, blue, and yellow. They got to mix secondary colors: green, purple, and orange. Aiden squeezed the dough, patted the dough and pushed the dough. His favorite colors were blue and green. (He picked them every time!!) I think that he had fun!

I know that it is not rocket science or medical school, but for us it is a step forward in providing Aiden with options for his future. We will continue to do our best for Aiden; to reach beyond what we or anyone else may think limits him in order to seek God's best for him. It is a challenge, sometimes moment by moment, but one that we will do our best to meet.

Please continue to pray for us. Pray for Aiden to continue to make steps forward both in fine motor skills and in communication. As well, pray that Dave and I will have the wisdom to do what is best for our family.

Blessings to you all,

Christa

There's a reason for the age warning!!!

2010-10-15T18:06:00.004-04:00

For those of you who may not know these are Legos. There are thousands of these little multicolored blocks in my house. They range in size from quarter inch rectangular and round blocks to three inch rectangles; from wheels to miniature guns. We have storm troopers, Darth Vader, C3PO, and even Princess Lea and Luke Skywalker; all in Legos. These toys have provided hours of really good imaginative fun for Aaron. But there is a warning; a safety warning, on the box. It says something like "not safe for children under the age of three". It should include children of any age who chew on non-food items!!

Yes Ladies and Gentlemen, Aiden found several of Aaron's Legos on the floor last Friday night. He put them in his mouth and chewed them up. In the process he got at least one block caught in his throat. What followed is the worst case scenario for lots of parents; Aiden began to choke.

I wasn't at home but Dave is pretty level-headed and keeps his wits about him. He gave Aiden a couple of really good thumps (didn't work), flipped him over (didn't work) and called 911. While waiting for the EMTs (who by the way went to the wrong house) Dave swiped Aiden's mouth. We aren't sure if this pushed down what was stuck or whether Aiden was able to move the Lego, or if there was supernatural intervention, but Aiden swallowed. By the time I got home, totally oblivious to the whole thing, the EMTs were gone and Aiden was fine. (Dave and Aaron on the other hand were both a mess.)

I am happy to say that there are at least two positives that have come out of this situation. Firstly, Aiden's fine motor skills (his ability to pick up small objects and his ability to feed himself) have clearly improved!!! (Yeah, it's ok to laugh...the day after it happened I did.) As well, it seems like for the most part his digestive system is working well. (Can you guess where this is going??? :) Aiden has passed several Legos, yeah!! So as you can see, everything has "come out in the end". :) (It is really hard to be the "butt" of all of the jokes.)

We feel so blessed at the end of this situation. Aiden is ok, Aaron knows why we are so adamant about the Legos being upstairs, and EMS knows where we live. We are thankful that it was only pooping Legos versus having to say good-bye to our precious child.

Thank you all so much for your prayers. They were definitely felt last Friday evening.

Blessings to you all,

Christa

A view from my window

2010-10-09T10:55:00.008-04:00

So many mornings I am in such a hurry that I don't pay any attention to the view from my kitchen window. What a foolish thing to do! The view from my window is beautiful; a pond, the sun glinting off of the water, ducks swimming and trees beginning to change colors. By not taking at least a minute to look I miss the gift the Lord has to give me in the beauty of my surroundings.

How many times have I done the same thing with my husband and kids; with friends and other family? In my busy-ness how much beauty have I missed? I am sure that I have missed much. I will not be able to recapture those moments no matter how much I would like to.

So what do I do now? Well, for starters, I am going to pause at my kitchen window, drink my coffee and thank the Lord for the gifts that He has given me: my husband, my children, my friends, the priviledge to live in such a beautiful place, my adoption into the God's family. (The list could go on and on!!!) As well, I will do my best to recognize the opportunities that are given to me each day to extend grace to others (that grace truly is a blessing). I hope that you will take a minute to catch a "glimpse from your window" and embrace the beautiful blessings you've been given!

Thank you all for your thoughts and prayers. We value them greatly. I will give an Aiden update soon.

Blessings to you and yours,

Christa

A summer picnic

2010-09-07T12:26:00.015-04:00

I was recently reminded by a friend that I hadn't updated my blog for a LONG time. She was right. I have to admit that although we were without internet service for 2 1/2 months (the joys of rural living!!!) I have not really made the time to let you all know how we are doing. I am sorry that I have been so lax. It wasn't that I wasn't thinking about it; when I did it was usually midnight (or later!) and I was dragging my behind!!!! I will do my best to be more disciplined and atleast keep you posted weekly. Yeah, if I were you I would be thinking "Right, I'll believe it when I see it". Don't worry, the skepticism doesn't bother me:)

So here we go....

This Saturday Aaron, Addison, Aiden and I went to Augusta Springs and had a picnic! For many of you this will not seem like a big deal. For us however, it is huge. Not because we have a hard time making sandwiches or because there aren't any places to picnic close by, but because ususlly Aiden doesn't tolerate them well.

I was skeptical as to whether or not we would even get to eat lunch, but Aaron and Addison have hope that springs eternal---Aaron even brought his net to catch minnows and crawfish.

I packed Aiden's books and some goldfish crackers and off we went! (I did make sandwiches:) The drive was beautiful, the weather was perfect and Aiden was in a great mood. Once there we had a little grumpiness, but once the Maisy books (still the perinal favorites) came out of the basket all was well.

After lunch we headed out for a walk on the handicapped accessible trail. The clack-clack of the boardwalk under the stroller's wheels seemed to be just what Aiden needed to relax into a peaceful mood.

Aaron and Addison were able to check out some of the information on the trail because Aiden was happy in his stroller. I have to be honest, I was just waiting for the meltdown to come. I am happy to say that I was completely surprised and greatly blessed by Saturday's outing. I should know that the Lord can use any situation to bless.

I have said on more than one occassion that I am often surprised by how the Lord blesses me. From the blessing of our new home where I am hopeful that others will find grace, mercy and blessings to a quiet Saturday picnic I am amazed by the depth of blessing that has been poured out on me. Am I only seeing them because I am in the unusual position of being a mom of a special child, or is it because I am slowly but surely learning to look at each day; each situation; each moment as a blessing?

I am hopeful that it is because I am learning to see the possibilities for blessing in all things. We do have to face things that many families will never have to face, but situations should not be what determines attitude. I could allow that to happen (and honestly I have), but that would leave me helpless. The Bible says, "For God did not give us a Spirit of timidity but of power and of love and of a calm and well balanced mind and discipline and self-control." (2Tim 1:6-8) By succumbing to that helplessness I give up the power and choose the timidity; I loose the character that I have been given through Jesus. I don't want to be afraid; I want the power not the timidity!!!

My friends if you find yourself choosing the fear or timidity over the power; if you're loosing sight of the blessings ask the Lord to redirect you. Our loving Father wants to bless us and He does daily. Open those boxes of blessings and enjoy them!
Thank you all for your continued prayers. We appreciate them and are so grateful for your support.
Blessings to all,
Christa

Would you like a sneak peek?

2010-03-02T23:32:00.027-05:00

There is nothing like being blog illiterate, but it seems I am once again struggling to figure out how to get pics in the right places on this page!!! I wanted to post some pics of the progress on the house, but they didn't line up like I thought they would, so I'll just go through the ones that posted like they are, so here goes :)
The picture to the right is of Dave's and my bedroom. It is painted with really warm contrasting browns. We're doing all of the trim in white. I was really unsure of the colors. My sister Jennifer helped me pick them out and if the truth be told, she did a great job (but DON'T TELL HER!)

This is the room that the kids will share to begin with. Addison is a little scared to be in a room by herself, so Aaron and Aiden will share with her for a while. Aiden will always be in a room with one of the other kids, so for right now it will be Addison. In a couple of years (probably less time than I would like to imagine) we will move Aiden in with Aaron because Addison will need girl space. (I hope the Lord gives me a few years to prepare!)

These are of the downstairs bathroom. It has been renovated to accommodate Aiden; a bath with hand rails, a new toilet, no tile, a detachable shower head. We will have clothing and other things for his use here to make it as easy as possible. I really like the tile accent. I think it looks pretty!

This pic is especially for my mom. The new counter tops were installed yesterday and she wanted to see them right away!! Here they are Mom, aren't they beeeuuteeful? Last night after they were finished putting them in I got out the mop, cleaned the floor and stared. I know that sounds silly, but I wanted to see how pretty the kitchen would look when it was finally done. (We do have a slight technical difficulty that will take some fixing...sloping cabinets :( )

Hope that this finds all of you well. We are actively working to finish this project with a hope to getting moved sometime in March. Pray to this end for us if you can, please!!

Blessings to all,

Christa

The twists and turns often surprise me

2010-02-23T21:32:00.006-05:00

Isn't it amazing the way our lives take twists and turns?? This last week has been totally strange and unexpected. Here in Virginia we have a new governor. As all politicians must do, Governor McDonnell has been given the unenviable job of balancing the budget for our state; a budget which dare I say is horrendously out of control. In seeking to make the changes that are required to make the state finances more equitable, he decided to make some cuts to Medicaid waivers. For those of you who are unaware (and to be honest, I was unaware just over a year ago) these waivers provide opportunities for individuals with disabilities to have care provided in their own communities; allows them freedom, independence and support. As well, for families with disabled children the waivers provide assistive care (attendants) in the home. For us this has given me the chance to spend more time with my older kids, my husband, and take some personal time. It is also providing Aiden with a special helper; someone who works with us in reaching Aiden's goals in speech, physical and occupational therapies.

The proposition was to remove what is called the "consumer directed option" from the waiver provided services. For us this would mean that we would no longer have the choice of attendants; we would have to accept any person who was sent to us by an agency. We would not be able to interview the attendant; not be able to asked questions concerning the person's background; not be able to fire the attendant if the fit was not right (or if heaven forbid something terrible were to happen). I am not willing to give up that much power to anyone; especially a stranger and especially with my littlest baby. This cut would effect not only children with disabilities, but also disabled adults and elderly.

So how have Governor McDonnell's proposed budget cuts caused twists and turns in my life's road? Well, as you can imagine I was a little shocked and lots concerned. I appreciate the help that we receive. I have seen improvements in not only Aiden, but in my older kids as well. I knew that they were in need of my time, but I have had so little to give them until the waiver gave us help. I was also angry....Why should the people who have so little be responsible for carrying so much of the burden? So when I was asked to contact some people about the cuts I jumped in with both feet.

Let me start by saying that I have never seen myself as a crusader. Although I chose a career in a field with children who usually lacked care or who were shuffled around because they were unwanted, I did not see my advocating for them as a crusade. I also thought that I understood the importance of the parent advocate. Now I truly understand; if I don't stand up for Aiden and those like him; if I don't encourage others to do the same; if I do not try to change the system so that things are better than I have no one to blame but myself. Conversely, my children would have no one else to blame but me.

So I made call after call, forwarded every email I received, printed multiple letters to as many politicians as I could. How did it turn out? Yesterday we heard that the Senate and House here in Virginia decided to remove the consumer directed options from the chopping block....for now. The actual budget in it's final form will not be looked at until the end of April so I will continue to work towards better treatment, better care, better options for children with disabilities.

I had no idea that some day I would be called on to "rally the troops" (small though they be), or that I would be interviewed by television reporters as if I was someone with a worthwhile opinion. On some level, I believe that I had something to do with the decision to leave funding in the budget for these services. Could it be that this is a new path for me; that I might be in the right place at the right time? Maybe it is just that I want to feel that I am destined for greatness; or maybe I just need to think that something not just good, but great will come from the struggles that we've encountered with Aiden, or maybe I just want to feel like the dreams that I had for Aiden won't go to waste. Maybe it is all of the options. I will wait and see. I hope that you will wait with me.

I will keep you posted as to how this works out, and if you can be helpful by contacting your delegates. As well, I cherish your prayers.

Blessings to you all,
Christa
To see Aiden's interview go to
www.whsv.com/video/?autoStart=true&topVideoCatNo=default&clipld=4560206&flvUri=&partnerclipid

(Ok, so if that doesn't work you can go to whsv.com. When the home page comes up go to the video search engine and type in medicaid waiver. The search engine should give you several options. The picture w/a little boy wearing a blue pullover is Aiden. ) :)

A move date is on the horizon!

2010-02-10T19:29:00.004-05:00

Hi Friends.
I am so sorry that I have not checked in for such a long time. It has been a crazy several weeks. After closing in mid December, all of our family contracted what we think was H1N1; followed by concurrent strep throat (Addison), sinus infection (Aaron and Aiden) and pneumonia (Dave). This was topped off with a Christmas Eve/Christmas morning visit to the ER with Aiden for a possible concussion. (Fortunately, a false alarm.) Thus bringing us to our Christmas holiday. (And I say that with a note of sarcasm in my voice!!:)

Our contractor has been juggling our renovations and at least one other job over the last several weeks. Needless to say, this has pushed our move date back several weeks. We were hoping for a move some time mid to late January. The most recent snow storm has helped us significantly. Because of the snow, our contractor has more time for indoor work (exactly what we need) so we may see a completion of the project within the week. We will now be expecting a move date for the end of February!! YEAH!!

I will do my best to keep you all posted. Take care and blessings to all.
~Christa

We're moving up!!

2009-11-28T09:40:00.006-05:00

Hi friends! It has been so long since I've let anyone know how we are doing. I am hopeful that after the first of the year I will be better able to keep up better than I have. I suppose hope springs eternal so we will see how I do. This quick post is to share some photos that I took yesterday...of the house that we are planning to purchase in mid December. (Yeah!!!)

For the last 15 years we have been blessed to live in a little craftsman type cottage. When we first moved in the 1100 square feet seemed just perfect. It held our kitty cat and our dog and our stuff with no problem. After Aaron was born it still seemed just right for us. And after I left my teaching job to stay at home it was a blessing to have a house payment that we could easily handle on one income. Add in Addison and then four years later Aiden and all of the equipment that goes along with a child with a disability (oh and somewhere in there we got a 2nd dog), and you have a rather crowded 1100 square feet. (Actually, this is a significant understatement :) )

Three years ago we began looking earnestly for a new home. It has been an up and down search taking us through several contracts (that were not fulfilled), long nights staring at the Remax website, and many visits to houses that were not for us. I am so glad that this process may finally be over. We have waited on the Lord to direct us and feel that this is the house. Yesterday our hopes were confirmed by our home inspection. Our friend and contractor, John, went through the house with us and said that he would not be afraid to move in to this house!! So we are preparing to move!

I took pictures yesterday and would love to share them with you. I have included pictures of the house from the road, the livingroom, the kitchen, the upstairs hall ), and the view from the porch. We will look forward to having visitors after the first of the year!

Blessings to you all,

Christa

It's been a long, long time....

2009-10-05T21:40:00.003-04:00

Dear Friends,

I don't even really suppose that there are any of you still checking; it's been so long since I blogged, but I find that maybe I have some new interesting news! So here goes with our latest.

Over the last six or seven months I have really felt called to create a group for moms with children with disabilities. As some of you may know I have attended a moms' group in Richmond, and found some great support, information, and friendship. I spent time praying about the possibilities; I sought wise counsel from people who know me and who I trust, and I waited. Right before we left for our family vacation the beginning of September Bethann (our PT) and I decided that the time was right. That having been said, Valley Moms was born!!!

As a result of 12 fliers placed around Staunton and Augusta county and a couple of friends spreading the word, six moms and one dad made their way to Ciro's in Verona for the inaugural meeting of Valley Moms!!! (I was thrilled that anyone showed up at all.) We ate Italian and sat around and chatted. It was great to be able to share information and make new friends. We will meet the 3rd Thursday of each month (with exceptions for holidays). Our meetings will be informal for this part of the year. It is our hope that in the spring we will be able to provide some more informational type meetings. If you know any moms who are caring for special kids and may need an hour or two of pizza and soda send her our way!!!

A quick update from our home...Dave is maintaining things at the golf course. He is looking forward (as he always does this time of the year) to the possibility of snow (and lots of it he would say). Addison, Aaron and I have finally started at the ACE co-op. They are each taking some classes and I am co-teaching an art history and techniques class to 2nd/3rd graders. I am looking forward to the kids making many new friends and I am enjoying being a teacher again. Speaking of teaching, I completed both of my graduated classes and am awaiting my renewed teaching license. Finally, Aiden is doing well. What is well, you may ask? He is continuing to walk well unassisted. Things that I thought that he would never do (squat to stand, tricycling, walking at the park in the mulch, etc) he is doing. Stairs are still a challenge. Going up is improving much faster than going down, but at least we have the chance to practice. We are still looking for some really good reliable regular attendant care so if you know anyone let me know:). I am truly blessed.

Please pray that we will find really good people to work with Aiden. It is difficult to find someone to trust with your child. Also, pray that we will see changes in Aiden's ability to speak. We are trusting the Lord with this daily. Finally, Shann0n and her family have had some very serious challenges recently. Please pray that they would have wisdom and peace in the midst of difficulty.

Blessings to you all.
Christa

A week-end to remember

2009-06-04T21:17:00.008-04:00

Like I've said before, I have trouble with the picture part of this blogging thing. So these pictures chronicle a small part of our week-end adventure.

Mom, the kids, 2 cousins and I headed out Saturday afternoon to the Louis Ginter Botanical Gardens. It was a beautiful day; perfect for being outside in a garden. Besides, they have a live butterfly exhibit that is really cool. (Thus the picture of the butterfly above.)

We walked, saw butterflies and in the children's garden we got wet! Aiden has never been in a water park or in a sprinkler for that matter. It has really only been just a year that he has tolerated being in a bath tub, so this

was an experiment for us. To my joy and surprise, Aiden really liked the water. He stood with me and got his hands wet. He let Aaron help him while the sprinklers got him. He even laughed and when I put him back in the stroller, he chose to get up and get wet again! It was a fun and peaceful day.

Unfortunately, it ended with Aiden sick. It would be lovely to say that the picture of him sleeping was the result of being tired at the end of a special day. Actually, it is a picture of Aiden Sunday asleep on the floor in the living room with a fever of 101-102. This is also after the vomiting and being awake off and on all night.

We missed Monday's therapy, but that worked out well because Addison started with the virus on

Sunday night. Both of them ran fevers on Monday
(Addison's up to 103.5). I took Addison to the emergency care center Tuesday to have a culture done. It turns out Aiden was exposed to rotavirus; hand,foot and mouth disease; and strep throat!!! I decided that if Addison had strep then I would have Aiden done; otherwise I would save him the trauma (and myself honestly) of a throat culture. The quick strep was negative. We're waiting on the culture. At this point I think that the virus is totally unrelated to our exposures!

We missed a total of 2 days; yesterday was our first day back in therapy. Aiden was a little weaker than usual, but he worked hard. Today was even better. He is showing signs of really improving in his upper body strength. I am excited to see the results even this early.

Please pray that Aiden remains healthy and hardy for the remainder of our stay. Also pray that I am healthy. As self-important as it sounds, we really can't afford for me to be sick. Finally, thank the Lord for His faithfulness in this adventure!!!

Blessings to all,
Christa
PS. As I was writing my mom took my dad's temp.....101!!! :( Pray for him!

I have pics!

2009-06-02T17:43:00.008-04:00

Greetings from Richmond. I hope that this finds all of you well and enjoying the beautiful weather. We are doing our best to get our week started. But more about that later.

I have finally gotten a card reader so that I can share some of the pictures of Aiden's first week back in intensive. Aiden started off with a bang. He showed off for Shannon; standing up and walking independently. His evaluation went well and Shannon has set some rather exciting goals for this session:

1. Aiden will pedal his tricycle independently with assistance
steering.
2. Aiden will pay attention to his surroundings so that he can safely navigate up and down obstacles of up to 2 inches.(I think that this is how it should read!!)
3. Aiden will walk up 4 stairs independently with close guarding.
4. Aiden will walk independently over uneven surfaces (grass, playground,etc) for 3 minutes.

For many of you these may seem rather simple goals. For us, they will be miracles of the most precious kind. As well, for Aiden to reach them he will have to work hard and long. It will require much focus and specific intent to motor map his brain, and this will come from practicing over and over. I thank Shannon in advance for the energy and discipline that will go into my son.

Now to the pictures. Some of the faces may be familiar. Shannon and Lindsey are in the pictures at the bottom. Aiden is suited up and ready to go. As you can see, Maisy is not

too far away. Aiden continues to love to be read to. I brought several new Maisy books so that we can rotate them and not get too bored. In the bottom picture Aiden in wearing the complete suit and is squatting down. The knee section of the suit makes bending very difficult--it is taking quite an effort to squat!

This session Aiden met Miss Cindy. She and Aiden took a walk outside for our first full day. He was a little unhappy when we walked past our van (his DVD player is inside), but he still worked hard. He was pretty wiped out that first day, but he didn't fall asleep this time. It just shows that
he is considerably stronger now than he was 7 months ago.

The pictures that are left (I still have not really gotten the hang of this blog thing and so the pictures that should be at the bottom are at the top.) are those of Aiden with a less than happy face. Let's face it, usually he is a happy-go-lucky guy who is content to have a sippy cup and a good movie on the DVD player. Well, Friday that was not the case. Shannon wanted him to pay attention as he stepped over hurdles. Aiden---not so much. There was screaming and fussing and (guarded by Shannon) some falling. Surprisingly, no tears. He was just mad, and didn't want to do what he needed to practice.

I know that it may seem silly or cliche for me to find a paralell between my son's unwillingness to work on what he needs to do and my own spiritual walk, but I can't help it. As a parent I want my child to work to be the best he can be. How much more does my heavenly parent want that for me? (or for any of you!!?) I kick and scream (and may actually have tears), but that doesn't change the fact that in order to grow I am going to have to work; practice being more like Jesus, work to love my family, exercise my faith to see it grow, discipline my heart to maintain an attitude of prayer. My tantrum will not change the fact that true growth is hard work.

Please pray for Aiden's hard work. Pray that the adults in his life will know how to motivate him. Thank God for the miracles that He is doing.

Blessings to all,

Christa

Getting back into the swing of therapy

2009-05-27T21:27:00.002-04:00

Sometimes when you're not looking forward to an event the time leading up to it is really rather unpleasant. I have experienced some of that over the last several days. I have feared the unknown; what should I expect; would this time be successful; are we chasing after outcomes that are unrealistic? I have been facing down this particular spirit of doubt for the last several weeks. The thing is that I know that this is a particular attack aimed at bringing me down and directing the focus away from the miraculous.

I realized as we entered the center yesterday for our evaluation and the beginning of this new session that I have no control over any of this. It is not my situation. I can try to control the therapy, the child, the outcome (the traffic, the way my dad makes coffee.....) to no avail. It is a "Christa's hands off" program. I am not in control.

I have a hard time letting go. In much of my life things feel very out of control so I hold on to what little I can to find a sense of purpose; to have a focus. (I find it really funny that I have been trying to control the outcomes of Aiden's therapy when Aiden himself is what makes much of my life seem out of control.) I can no more control the sun rise or the rain fall than my life. If I accept that then I would be able to truly rest in the Lord. Oh to learn to rest in the Lord.

These personal issues aside, Aiden tolerated the eval yesterday and his first session today very well. We are six hours down on the 45 that we will ultimately complete by the 12th of June. I am encouraged by the eval. Aiden has definitely come so far in such a short time. Shannon says that she thinks that he's done amazingly well in the time since his 1st intensive. I am excited by his attention to tasks today. He seems more able to pay attention to what he's doing. As well, he was not combative or fussy during therapy. I was concerned that this would be a problem.

Please pray that I am able to rest in the Lord as He works in Aiden through therapy. Currently, I am taking a graduate class on line; pray that I am able to keep up. Finally, pray that Aiden responds well to therapy; that he is willing to work even when the work is hard.

You are all such a blessing to me; knowing that there are people faithfully remembering us as we embark on this leg of our journey is such an encouragement.

Blessings to all,
Christa
PS. I have left my card reader at home so pics will come soon.

We start back to intensive on Tuesday May 26!

2009-05-24T22:19:00.002-04:00

Hi Friends,
This is just a quick message to let you know that we will be heading back to Hope therapy for our 2nd intensive. We will complete another 45 hours of PT in 15 days in hope that Aiden will respond to the work positively.

I am a little nervous about the process. I believe that there was less stress with our first intensive because there was not any expectation for success. This time I have ideas of what could be, and am afraid that perhaps this will not be as significant for Aiden. Also, as a family, we pretty much put our lives on hold. I don't want to feel like we have "wasted" the time. There is always something riding on an experience like this; I just don't want to feel like everything is!!

Please pray that all of us make the transition from our regular schedule to the "camp Grandma" schedule. Pray that Aiden is strong and willing to be directed in his PT activities. Finally, pray that I find encouragement and hope in this process.

Thank you all and blessings,
Christa

Please forgive me!!!

2009-05-10T16:29:00.004-04:00

Dear Friends,
I am so sorry that I have been so unfaithful to keep up this blog. I have let life and busyness keep me from taking the time to put my thoughts and feelings, as well as Aiden's on-going progress, down in print. Keeping this journal has been so very helpful in allowing me to plot Aiden's progress and my own personal growth.

To catch everyone up to speed I'll let you know where we are today! (By the way, it is Mother's Day :) Currently, Aiden is walking with great ease and with relative fluidity. He is not using his arms to turn/rotate his trunk as much as we were seeing several months ago. As well, Aiden is successfully able to push himself up from the floor to a standing position. When we left RHTC in November he was only able to get himself up if he had the assistance of a 3-4 inch platform. So being able to "Dog,Frog and Up" is quite an accomplishment!

Communicatively speaking (is that an oxymoron or is it redundant?), Aiden is still not speaking at all. It has become very obvious to both Dave and me that Aiden is very frustrated with his inability to successfully and easily communicate with us. This having been said, Aiden had an assistive technology evaluation done at Children's Hospital in Richmond last month. I thought that this would provide access to some of the voice recordable switches (like the easy buttons but different) like we tried in November. In reality, it was assessing the plausibility for Aiden to learn to use a computer. Guess what.....he can!!!!!

The assessment gave me the opportunity to see Aiden's little brain at work. I have wondered (and perhaps all of you have) whether or not Aiden had cognitive issues along with his physical limitations. When given the opportunity to identify pictures of objects with a touch screen computer, Aiden was able to successfully choose 8 of 10. In the world of education (especially special ed), 80% is great!!
To say that I was surprised is an understatement. We will be looking forward to getting a touch screen monitor and software to support Aiden's cognitive growth.

We are continuing to encourage Aiden to use hand over hand signing, PECs (picture exchange communication), allowing him to take us to what he wants, and we will try not to anticipate his needs so that he is forced to communicate.

For me personally, I have felt a lot like a desert recently. I have had to continue with graduate classes on line. I successfully completed on in April and began another one the same day. My new class will also focus on the processes the brain goes through while learning. (I am hopeful that maybe I will learn one or two things that will help me understand Aiden's learning process, or will help us to make more neural connections.) The classes, although not terribly taxing, still require time and thought, both things that I feel lacking at this time.

I was diagnosed with a thyroid disorder recently. Hashimoto's thyroiditis is the leading cause of hypothyroidism and is linked to a gluten sensitivity. The thought of taking on living gluten free is overwhelming, so I am attempting to work through this with supplements, and if that is unsuccessful, I will take some form of thyroxin. I mention this because it does help to explain my overwhelming exhaustion, foggy brain feelings and weight gain. (I would love to blame all of my weight issues on Hashimoto's, but I am sure that the 1/2 lb of chocolate yesterday didn't help!!) :)

I thank you all for your continued prayers. I believe that there are probably days when you think of us and pray without knowing why. Bless you for those. We will be embarking on a second intensive therapy session beginning the 25th of May. This will continue through the 12th of June followed by a dental procedure (requiring general anesthesia) on the 16th of June at MCV hospital. I will do my best to keep you all informed and up to speed.

As in other posts I have asked for your prayers for others. Our friend Shannon (Aiden's therapist in Richmond) is having some serious health concerns. She was diagnosed with Celiacs disease about 4 weeks ago. Shannon is feeling terrible with joint pain, brain fog, insomnia and nausea; she needs significant prayer support. Please pray that she will begin to find relief from this illness.

Blessings and peace to you all,
~Christa
PS. For all of the people who bless children (moms or ladies who are like moms--have a great day!!)

We have the results...

2009-03-03T22:13:00.005-05:00

I am not a morning person. I took this picture so that I could prove that despite my reputation as someone in need of serious coffee prior to a good morning conversation I was chipper and ready for our trip to MCV for Aiden's MRI. (It was a little depressing to go to the car for a drive and still see the moon though.) As most of you know this MRI was a follow up. It was scheduled to make sure that the initial diagnosis, PVL, was truly the diagnosis. I was apprehensive. If the results showed something different, what? If the results were the same then why was Aiden's speech effected? The waiting is truly the longest part of much of the medical process.

But we headed to the hospital, found our way to the radiology department (which by the way, at 6:30 am on a Monday is completely deserted---the receptionist wasn't even there!!!), and prepared to turn our youngest child over to complete strangers. Strangers who we knew were going to poke, prod, stick and tape our child; give him medicine that we knew would make him sick, all in the hopes of making him better.

Aiden's procedure (funny how they refer to anything medical as a "procedure" like we couldn't understand or pronounce what was happening anyway so the medical profession decides to save us idiots) went well. He was returned to us in the recovery room about an hour after we left him. He was crying as he came out of the anesthesia; then he was vomitting. But all in all it went well. We got a copy of the MRI on CD and headed home.

We were all rather exhausted when we got home. Dad sacked out on his bed to catch some zees and Dave and I flopped out watching TV. Aiden took a good nap after lunch and a good dose of Curious George. Needless to say it was a draining experience for all of us

All of this is to say that I called the doctor's office to get the results: nothing has changed, nothing new to be seen and nothing was missed the first time around. In one sense of the word this is good news. Aiden does not have a degenerative brain disease that will render him unable to function in 10 years. He is not suffering from tumors that will slowly take my son from me. On the other hand, we have no new information to help us help Aiden. There isn't an explanation for his lack of speech or refusal to sign. There are no answers except this:

Aiden is who he is.

I cannot change this and it is obvious to me that the Lord did not want to change it for me at this time. I know that my Heavenly Father does not desire that I hurting or am disheartened. He does, however, desire my faithfulness and trust. He wants me to rest in Him. I must admit, I am a fixer; the kind of person who wants to make situations right. I need to have the answers or at least a plan. Well, here is a news flash---the only answers leave me with more questions and I don't have a plan. Truly, I am doing alright with this today. (Tomorrow maybe not so much.) So for today I will leave Aiden at the foot of the cross.

Please continue to pray for us. We are heading into a time when we will have to make decisions concerning the hiring of care providers to help with Aiden in our home. We want to make good choices for our family. Thank you for your support and encouragement.

Blessings to all,

Christa

Aiden walks!!

2009-02-21T23:19:00.005-05:00

Hello Friends. I am so sorry that I am having a hard time keeping up with you all. My class is taking longer than I expected and I am working hard to organize some help for our family. This all having been said I do have a couple of updates for you.

First and foremost, Aiden is walking. He's not just using his gait trainer with great agility. He's not cruising around the living room. He is actually walking; on his own! Seriously, he stands up (still using a chair, couch,etc. to get up) and he goes. Sundays are probably his favorite days. In church we have a wide carpeted area with lots of room to walk. Thus his love for Sunday. Aiden just goes and goes. This past Sunday I had to grab him several times as he headed down the center aisle. A friend teased, saying that maybe Aiden was heading up to give his testimony. I believe that in truth Aiden is a testimony of God's faithfulness.

We took Aiden to MCV on Monday for a second MRI. I have not yet gotten any results and our expectation is that nothing will be different from the first done in April. However, since we are considering adult stem cell therapy it is imperative that we make sure Aiden's problems come from brain damage, not genetic difficulties. (We have also been to the geneticist to have a more in depth gene test done.) Aiden did very well with the actual test process. He had to be anesthetized (that makes me terribly nervous), but they did not have to intebate him to insure an airway.

I brought home a CD of the MRI scans. It is rather amazing to look at the inside of my child's brain. Through my class I have looked at brain research and the areas of the brain. This information has definitely come in handy in the last week. In looking at the MRI I was able to identify several of the internal parts of the brain. It was really neat (for lack of a better word). This having been said, I really don't know what I am looking at, nor do I know what I am looking for in terms of Aiden's brain damage or functioning. We will have to wait for the doctor to let us know what the results are. (Just so you know, I don't wait well!!)

There is still no speech from my little man. I am struggling with being very negative and frustrated about this. It is not just that Aiden is not speaking, it is that he seems unaware of the process of language. He does not seem to understand that either sign, pictures or vocalizations equal a response. I have certainly cried many tears wondering if my little guy will ever really get it. But this week speech therapy was different. Usually I put Aiden down and he immediately heads out the door. This week he took his therapist's hand, walked into the therapy room and found the toys. What a difference a day (or a week) makes.

For me, speech seems to be the next big step; the next developmental milestone that we need to pass. To long for the sound of your child saying, "I love you", and not knowing if that will ever happen can be heart breaking. I realize that there are others, parents of children who are much more involved than Aiden, who will never hear those words; for them my heart hurts. I have learned, however, that in the grand scheme of things, those words are not the most important. Instead it is the state of the heart of the child and the love of the parent that really matter.

I do question when I will get to the point when the love I have will override the worldly expectations in my heart. It is ultimately unfair to Aiden and the rest of my family for me to focus on my own desires for him. I am learning to focus on the blessings.....Dave who supports me with both Aaron and Addison and with Aiden.....Aaron and Addison who (mostly) bring great laughter, fun and joy......Aiden who's smile lights up the sky and who teaches me about hard work. Please continue to pray for this work in my heart.

Thank you all so much for the prayer support that you provide. Your prayers are being answered!!! Aiden is walking!! I am learning!! We are growing as a family in our understanding of each other and the Lord!

Blessings to you all,
~Christa

A walk in someone else's shoes

2009-02-11T22:00:00.008-05:00

I had the priviledge and honor of sitting to eat with some rather amazing ladies last night. I met with a moms' group that gets together in Richmond monthly to chat, eat and maybe drink a margarita (or 2)!! What do we talk about? Well, all of us have children with disabilities.

Some children are extremely involved; some children are not. Some have of the kids have disabilities that you've heard of; some are so rare that only a handful of people worldwide are effected. But all of these children have something in commom; they all have moms who love them and are dedicated to providing the highest quality of life possible for them.

Sitting with these ladies last night reminded me that we all wear different shoes. Some are comfortable and easy to slip on like old tennis shoes; the kind that you're comfortable wearing when your best friend comes over. Some are black and shiny; the kind you put on when you want to make a good impression. Some are tight and really squeeze your toes, but you wear them because they're what people expect (and you wouldn't want to disappoint anyone). And there are the ever present work boots; the ones that seem to get the most wear, but are the least stylish; definitely not fashionable, but servicable.

Last night I met ladies who have been wearing their work boots for years. They have seen their kids through orthotics, walkers, feeding clinics, physical therapy, speech therapy, surguries, genetic testing, MRIs, etc. (There are procedures that I can't pronounce much less spell, and the list seems to go on forever!!) Some moms are new to the wearing of the boots; they are working them in so the fit is liveable. But, no matter where they are on the road to providing for their children, there is a camaraderie that can only exist because of the journey itself. (my work boots :)
So, what kind of shoes am I wearing? I ask myself that all of the time; what am I willing to show people around me today. Am I willing to be transparent enough to wear my work boots all of the time? Honestly, there have been times when I would rather wear my black patents because I would like to be someone else; change the road that the Lord has placed me on. But I have found that although they are beautiful on the outside, they are not the best fit; not all that comfortable. I have delegated them to date night. (You can imagine just how seldomly I wear them!!!) On those days when I can manage to spend the day in my 'jammies I wear my comfy shoes (and if you really know me you realize that I wear them with my comfy pants). These days also are few and far between. I have boxed up my toe squeezers. They're on the top shelf of the closet and may even end up in the give away pile. (I don't have time to live up to someone else's expectations of me.)

That only leaves the work boots. So I don them every morning before I head out. They are actually not too bad to look at. (They are pictured above! :) They usually fit pretty well. Its ok if they get muddy they can be wiped off. They're waterproof and have steel toes so they provide some protection. I am actually learning to enjoy wearing them. I may even be able to pull them off as a fashion statement one day. But whether or not that happens, I will walk in my work boots on this road well travelled by other moms. And just like they have paved this road for me, I will do my best to do the same for others.

Thanks for reading. I would like to ask that those of you who pray continue to do so for Shannon and her family. They have had a terrible season; sickness around every corner. RSV is in their home again. Pray that Makayla does not contract it again. Blessings to you all,

Christa

I have not fallen off the face of the earth!!

2009-02-04T21:49:00.002-05:00

This is just a note to let you all know that I have not fallen off the face of the earth. Actually, I have started a graduate class on line in order to maintain my Virginia teaching licence. That having been said, you can imagine that with our therapies, home schooling and laundry (the never ending chore), I am finding it hard to make time to blog. I will set aside time this week to fill you all in on what's happening with us.

Hope that all of you are well. I continue to pray for you as we brave 2009 and the challenges that seem to be on the horizon. Know that we appreciate your prayers and I will do my best to keep you all better informed of Aiden's (and my) progress.

Blessings to you all,
Christa

A quick update

2009-01-23T23:25:00.003-05:00

I really haven't given you all much information concerning Aiden's progress recently. I decided that tonight I would give you an update. He has definitely had some ups and downs.

So here we go. For those of you who are interested in Aiden's physical therapy it is actually going well. He is stepping up well, using both his left and right legs. He still shows a preference for the left, but repetition with the right leg is helping. He is also getting the idea of how to step down. Until recently, when he stepped down his supporting leg would collapse. This week he was able to step down 6 out of 10 times without collapsing.

Aiden's therapy typically begins with weight lifting. Since our time in Richmond we have struggled to get Aiden to use his ABductors (the muscles that allow you to side step). He could get a little hip movement (hip hike) but mostly he was squeezing his gluties. This week we achieved not only hip hikes but actual movement!!! You may be sitting there thinking "Big deal, so the kid can move his legs in and out." But for those of us who have worked so hard for this, it means that another motor movement has been mapped and he is able to differentiate the between his glutes, hip flexors and abductors.

I am having to leave much of my work undone (not that I really mind or that anyone would really notice) because Aiden is now doing a lot of independent walking. He is standing himself up (usually from a chair or a stool) and going. I am having to follow him around to make sure that if he falls he falls forward. Actually, he has fallen backwards several times in the last several weeks, and he is definitely bending at the knees! This is a huge relief for Dave and me. It means that Aiden is learning to protect his head; no helmet for us right now.

Finally, Aiden is beginning to play; really play. No he isn't putting puzzles together and he isn't playing Candyland, but he is finding enjoyment in toys. He is sitting and using toys. He is interacting with us as he plays, and he is taking turns with me. Aiden is also learning to kick a ball (on purpose). It is exciting to watch as lights begin to come on for Aiden.

He is still not signing at all. We actually are not encouraging any signing in order to cause Aiden to stop using the juice sign for everything. His use of the single sign has decreased to almost nothing. This is a good thing according to our speech therapist. She feels that perhaps we pushed Aiden expressively. I am not 100% sure that I agree, but at this time I will follow the plan. We are working on Aiden's receptive language skills and he seems to be following more and longer directions. I asked him to come to me and sit down in his little chair the other day. He totally followed the directions. I was really surprised and thrilled.

There are some really good things happening right now. I continue to struggle with the speed of his development and with the fear that he will always struggle to move and communicate, but the Lord is faithful to move us to places where we can receive His healing. (Guess I'm going to have to make many moves in my future!)

Blessings to all and continue to pray for Shannon and her family. Thank you for all of your support and encouragement.
Blessings,
Christa

Into the new year

2009-01-21T22:28:00.012-05:00

We are blessed to have a rather large extended family. Many of them we see throughout the year, some we only see on special occasions. We decided to begin the new year with a visit to Gran.

Gran is my very special grandma thus making her Aiden's (and Aaron's and Addison's) very special great-grandma. Gran lives in Richmond, but because of the nature of her health issues and the institutional setting in which she lives it is a treat for her to see Aiden. He was actually really excited to visit because Gran's nursing home has long tiled halls. We
brought his gait trainer along for the visit, and he was off like a shot. It was unfortunate that the resident in the room next to Gran really liked to watch TV with the volume up. Aiden heard the sound of the police show that was on and made a bee line to the gentleman's door. It was like taking candy from a very angry baby when we moved him back to Gran's room.

This aside, Gran was able to see Aiden and watch as he traveled the halls. There have been times when they were both in physical therapy at the same time, and Gran has called to encourage Aiden to keep up the good (hard) work. I miss the days when Gran was able to do those things, and despite the fact that at this time she may not always understand what is happening, I know that this woman; one who traveled weekly to see me in NOVa when I was a child, would do the same for my little one if she could.

My family continues to be a great help and support for me. We stayed through the new year with my parents. During this time Aiden decided that he would no longer use the signs that had become common. He just stopped signing everything but juice. I was devastated. I realize that we will come up against obstacles on this journey, but this did not seem like an obstacle. It felt to me like I had come to the edge of a cliff and just stepped off. I cried and cried; simply curled up on the floor and wept.

So what, you may be asking, caused this apparent lapse in Aiden's

communication?
Why did he stop signing everything but juice? I don't know; our therapist doesn't know; the people who answer questions on the Internet don't know. My tears were my only option; my only release.

Honestly, I cried out to the Lord. I cried and cried out to Him. I felt like I was in a box and I couldn't get out and God couldn't get in. (Logically speaking I know that my emotions are really not to be trusted. God on the other hand, is always to be trusted.)

So how do you get beyond the feeling that you're praying to the ceiling? I began to focus on the blessings that I do have. Yes, things are not exactly as I had imagined they would be. Sure I expected that my son would not face the challenges that we see everyday. Of course I would like our situation to be different. Still, I am blessed with a child who faces each new morning with joy. He smiles more than he cries. He finds humor in little things. He brings me new understanding of my own purpose in this world. Aiden is teaching us all about acceptance and grace.

Yes, I had a bad couple of days. Yes, it is just another step on the path that we are taking on this journey to become more like Jesus. Fortunately there is hope for the future. In Isaiah 61:3-4 the prophet speaks of what Jesus will do for God's children; for me, for my family, for those who love the Lord:
" He has sent me to bind up the broken hearted, to provide freedom for the captives and release from darkness for the prisoners, to proclaim the year of the Lord's favor and the day of vengeance for our God, to comfort all who mourn and provide for those who grieve in Zion-to bestow on them a crown of beauty instead of ashes, the oil of gladness instead of mourning and a garment of praise instead of a spirit of despair..."

I want to wear that garment of praise and my crown of beauty. I want those of you who read to do the same. We have been given a blessing in those gifts. They remove the world's hold on us and free us to live for the Lord. Live with that freedom.

Thank you all for your prayers. I sincerely covet them. They get me through the days when I am standing on the edge; when I can only see the ashes. As well, I have spoken to Shannon recently. Please pray for health for her household. Both Makayla and Ariana have strep throat. It is the 3rd(?) major illness in her home since November. Also, continue to pray for marriages.

Blessings to you all,
Christa

A word on marriage

2009-01-11T16:09:00.007-05:00

Marriage can be difficult; taking two completely different and independent people and placing them in a relationship that requires give and take, self-sacrifice and compromise. How in the world does it work? The reality is that sometimes it seems overwhelming and not always worth the effort.

The first several weeks of Dave's and my marriage threatened to be the only weeks of our marriage. Due to excessive stress, Dave's 80 hour a week work schedule, and other health issues, I was not happy about being married. I remember sitting down with Dave and telling him that marrying him was the biggest mistake of my life and I was stuck with him forever!!! It was terrible. (It was only 3 weeks into marriage!)

I know how distressing it can be to feel like you are sinking in a swamp of discontent and misery. I remember how depressed and lonely I felt. It was as if God had called me into a relationship that would never succeed. (Actually, I have called this the Prozac period in my life, despite the lack of pharmaceuticals!!) Fortunately, both God and Dave are faithful.

I believe that marriage it ordained by God; that it is a blessing and a gift, but I know that it is also hard work. I know that there are days when Dave and I each wonder exactly what it is that the Lord wants us to learn through our marriage. Let's be honest, it is a difficult course with a hard teacher in a tough school. (But I like to think that I am an over achiever and will eventually make a decent grade!!)

Right now in the lives of many married couples there are difficulties. Marriage is under such attack. If the family is destroyed than despair rules and trust, love and security are broken; the ability of children to see a loving heavenly Father is obscured. Hopelessness becomes the norm.

In the last several weeks I have watched a family fall apart. The wife cares for 3 small children; one child with a disability, the husband is in a high stress job protecting the public. Maintaining a marriage is challenging. Add in a child with a disability or a high stress job and the challenges multiply. Both in a marriage---overwhelming. I don't know if this couple will be able to overcome this damaging situation.

Please pray for marriages today. Pray that couples will communicate honestly and lovingly. Ask the Lord to provide understanding. Pray for marriages that are in crisis; for healing and renewal. Finally, if you know families with challenging situations: spouses in the service, fire fighters, police, children with disabilities, long-term illnesses; be available to help. Be aware that they may need someone to talk to, a couple to come along beside them and mentor them.

Thank you so much for your prayers.
Blessings to all,
Christa

All I want for Christmas.....

2009-01-05T16:10:00.003-05:00

Sometimes children have the ability to tell you exactly what will thrill them on Christmas morning. Sometimes what they tell you would be the perfect gift turns out not to be what was expected and there is much disappointment and disillusionment. As a parent you would like to give your kids what they want (within reason of course), but that does not always happen.

It is an extra challenge with Aiden because he cannot tell us what toy would make his kid dreams come true. So we searched high and low looking for a toy that is action packed, brightly colored, easy to operate, very sturdy, and won't break the bank. This Christmas we got him a little train.

It runs on it's own track or runs on floor. Having both options is super because the likelihood that the train will eventually be on floor is great. It starts up by either pushing on the head of the engineer, or
by pushing on the button the engineer sits on. It has 3 figures, a monkey, an elephant, and the engineer. They are rubbery plastic and can be chewed on if the desire over takes you. (This desire overtakes Aiden on a momentary basis.)

The whole set is compact for storage and small for playing. It was relatively inexpensive, and not too difficult to find. Mostly, though, Aiden seems to really like it.

Last Christmas Aiden was really not very interested in any of the festivities. He was still not very mobile and if it wasn't TV he just couldn't focus on the gift. It was a little disheartening to watch. As a Christmas baby, I usually find much excitement in the process of Christmas as well as the joy of giving gifts. Aiden did not find the joy in the process.

Perhaps that is why I had such a hard time entering into the Christmas spirit this year. I know that I blamed it on Thanksgiving two weeks ago, but maybe it was an attempt to guard against being disappointed. (OK, so I sometimes over-analyze things. Who really knows what my subconscious is thinking??)

Thankfully, this year was a little different. Aiden did enter into the excitement more. He at least acknowledged the gift, if not the excitement of receiving it. And he did actually play. It is not typical for him to play for any extended period of time. Christmas day he did.

I continue to learn from Aiden. I am personally blessed to have such a dear little teacher. (In all actuality, it could definitely be less pleasant.) Jesus said that His yoke is easy and His burden is light. (Matthew 11:30) I am choosing to accept the yoke and the burden from the Lord. I will allow Him to carry the things that I am certainly not able in my own strength to carry. Those things only weigh me down and steal the joy that I can hold on to in order to get through each day.

I am also learning to accept the gift(s) that my Heavenly Father has given me. Matthew 7:11 says, "If you then, evil as you are know how to give good and advantageous gifts to your children, how much more will your Father who is in heaven [perfect as He is] give good and adventageous gifts to those who keep on asking Him!! I have been given good gifts. It is imperative that I remind myself of this when the voices of discouragement try to convince me otherwise. It is not only important for me personally, but for all of us, and in any situation, to find the blessings of the "good gifts". So, keep your eyes on the gifts. Remember that they are given by the One who can only give good gifts.

Blessings to you all.

~Christa

PS Notice the last picture. Do you see anyone familiar (other than Aiden)? Yes, it is Girlfriend!!! (If you don't know Girlfriend, check back to late Oct.)

Twas the night before Christmas...

2009-01-04T15:09:00.014-05:00

I've mentioned our friends at Pufferbellies Toys several times. They have been an encouragement to us as a family since they opened their doors. As well, without any real explanation from us, Susan and Erin Blanton were willing to donate to Hope Foundation,and follow Aiden's progress during intensive.

Unfortunately, with the busyness of this time of the year, Aiden and I had not been in the shop since we returned from our adventure in physical therapy. So on the 24th of December (thus the title:) all of us headed downtown. We didn't have any real shopping to do. It just seemed important to see the ladies at Pufferbellies.

It is always a treat to visit because there is such an air of love for both children and the toy business. The store is packed with great games, toys that encourage imagination, old favorites and books to entice even the most uninterested reader. There is a train table, a library nook, art and craft supplies, legos, playmobil and dollies. (Can you tell that I love this store?!!) And this year, the windows are so enchanting. I was raised on the windows at Miller and Rhodes and Thalhiemers in Richmond. Not quite Macy's in NY, but in my mind, close!!

We walked in with all of the kids and were greeted by the ladies behind the counter. Whether they know us by name I'm not sure, but they welcomed us graciously. Aiden and I walked to the back to see the train table. A former Lee High student (I am so sorry to
have forgotten her name because she is so sweet) hugged me and let me know how wonderful Aiden seemed to be doing. She must have gone to get Susan because she came out of the office to see us.

Susan watched as Aiden played and walked around the table. He was doing his best to set little wooden cars on the track while keeping his balance. I think that she was impressed with the improvement that she saw in Aiden.

Erin met us as Aiden was heading up the ramp (towards the front door!!). She sat down with us as Aiden grabbed her thumb and walked up the ramp. He pulled her to go with him. With a great feeling of gratefulness I watched my son. He was working so hard to have some independence.

Erin and I stood up to accommodate Aiden's trek to the front door. I caught her eye as we moved forward. As I have been in the past, she was moved to tears. I don't know if it was because of the sheer effort that Aiden was exerting; more likely it was wonder at his determination, joy in his accomplishment, and maybe a little sadness that it seems so difficult. I am continually amazed at the range of emotions that run through me at such times. I could only reach forward and hug Erin. No words (except, "don't you do this!") would have been truly appropriate.

We left shortly after this encounter. The store was closing early and Aiden was ready for a nap. I was glad that we had stopped by. As we were driving out of the parking lot I watched Susan take in the giraffe and the open sign down. I mentioned that I was glad that we had stopped in. Dave said, "As I was walking out Susan stopped me. She said that bringing Aiden had really made their Christmas." What a blessing that we have such encouragement in our lives.

Thank you to all who are doing their best to encourage our family or other families like ours. Your love and support are truly appreciated, even if you are not thanked enough. We appreciate your prayers and would continue to ask you to lift us to the Lord.

Blessings to all,

Christa

Merry Christmas!!

2008-12-25T17:29:00.002-05:00

Merry Christmas!!

I just wanted to take a minute to let you know what a blessing each of you have been to me these last few months. Your encouragement, prayers, and support have been priceless. As well, having the opportunity to freely express my struggles and victories as they pertain to Aiden, and to my personal walk of faith, has been therapeutic.

I will continue this process throughout the new year and hope that you will continue to follow, pray and perhaps grow with us as we seek to help Aiden to gain his independence and as I seek to gain in my dependence (on the Lord).

Thank you all so much.
Blessings to each of you during this season,
Christa

Some good stuff in PT

2008-12-23T00:09:00.005-05:00

Since returning from Hope Therapy in early November, I have felt terribly unable to really provide the kind of PT that Aiden needs. I am not knocking my good helper and friend Tara. She is doing a great job. Unfortunately, this has not been a stellar health month for her. Taking into account the Thanksgiving holiday, her falling off a roof and a respiratory virus/ear infection, daily PT has been solely my responsibility.

We were going through the motions; exercises, practice up and down, sit to stand, step up step down. Was Aiden really getting anything, or was he just following the physical cues? I couldn't answer the question.

On Wednesday (12/18) Tara and I decided to make things a little more difficult; Aiden had to stand from a box 2 1/2 inches tall. I didn't think that he'd be able to do it. Surprise!!!!! He did.

The pictures are of Aiden going through the steps to standing. He had a couple of wiggles in the middle, but on the whole, he was steady and eager to succeed. Grant it the TV remote was the "carrot on the string" for him. Still, it was a small victory for us.

So Friday Tara and I decided to change things up a little. We loaded all of the kids into the van and headed for church. We used the fellowship hall for PT. Aiden was able to walk using his gait trainer for 20-25 minutes. He maneuvered around tables, chairs, into and out of the kitchen, around counters, through doorways, on tile and over carpet. (sounds a little like an overland expedition doesn't it?)

Once Aiden tired of that we loaded him onto his tricycle. Around and around he went. He was not doing a lot of the pedalling, but he was at least getting the idea of what he should be doing. We gave him about 5-10 minutes to ride before we headed to the steps.

I should have known better than to wait to the end to tackle stairs, but I will remember for the next time. That having been said, Aiden did not enjoy the down of the stairs. On the up, however, he surprised us both by moving fairly quickly right,left, right, etc. without using his arms to pull.

It is not rocket science. I am well aware that for most kids his age this is no big deal, but on Friday my son walked up stairs like most 3 year olds do. He did something typical. Perhaps his brain is beginning to realize more of what it should do. Maybe all of the motor mapping that we've been attempting is paying off. Just maybe we are seeing a bit of a miracle.

I am choosing to believe that this is a small miracle for Aiden. I am also believing that there will be more. I am storing up in my heart those things that people have said to me over the last 4 years; those words that I believe have come from God, and I will remember them. I will be encouraged by them when I am sad. I will pray them over my child and I will remind my Lord of His promises to me and to Aiden.

Dear friends, thank you for your faithfulness to us as a family, and to me personally. I covet your prayers and thank God for you. Please know that my prayers are lifted for you as you enter into this holy season. Be blessed remembering that the Lord of love came into this world to save us, not to condemn us. What an awesome gift! Pray for miracles for us. (I am believing for a special gift this year.) I want to hear my little son's voice. (I feel like Shadrach, Meshack, and Abednego. "If we are thrown into the blazing furnace, the God we serve is able to save us from it, but even if He doesn't, we want you to know, O king, that we will not worship your idols." Daniel 3:17-18. I will expect, and I will not choose disbelief.)

Blessings to you all for Christmas!

Christa

The signs of the season

2008-12-19T17:43:00.002-05:00

While at church two weeks ago someone said something about trusting the Lord and being willing to move forward with whatever step He had planned; to expect that the Lord had great things (this is all Christa's paraphrased). I sat there and wondered why I stopped seeking other options for Aiden.

Over the last several weeks I have been thinking about my position on Aiden's future. Prior to our visit to Richmond I had been actively seeking information about adult stem cell therapy and I was seeking out programs that provide such treatment. Once we decided to follow through with the intensive therapy I let my search fall to the wayside.

One could argue that I had done so because I was so busy with the therapy program and then with the follow up; that I was focusing on the immediate issues and could pick up with the research when we were finished. I guess that could be the case. It could be that I am still trying to work out the kinks in our schedules here; that to regain some balance and stability I am putting the research off. Reality---I am just a little scared.

To go to China to have adult stem cell therapy would mean a cost of tens of thousands of dollars. It would mean an investment of 20-30 days abroad. It would mean putting my life and the lives of all of my family on hold. It would mean trusting foreign doctors and hospitals. And to expect positive results would be to expect a miracle. I am not sure that I have that kind of faith. I don't know if I could put the life of my child in someone else's hands; let him go.

During this Christmas season I have been focusing on Mary's role in the life of the Savior. I can imagine the confusion and amazement she felt when she realized that she was going to be the mother of God's son; that she was miraculously pregnant. I can only imagine the weight she carried as she contemplated the responsibility of raising such a child to adulthood. And then to hear godly people talk about His future in terms that included rejection and pain; how unbearable for a mother's heart!

But I do understand some of her situation. No, Aiden is not the Messiah!!! He is simply a little boy. I don't have the pressure of raising God's son. I have, however, been engaged to care for and love a little boy who is significantly different. I cannot see Aiden's future, not even a part of it. Fortunately I know who sees it all. Like Mary, I am not alone in caring for Aiden; the Lord God of Israel holds us in His hands.

I want to be like Mary and believe in the miraculous. However, in my heart I am struggling to believe that the Lord has miracles for us; that He wants to "provide a hope and a future" for us. (Actually, I am also a little afraid that His ideas for our future will not be what I want!!) (This is funny when you consider what the Lord has done!) So today as I sat down to have some quiet time with the Lord He gave me the low down on the whole "future" and "miracle" thing.

No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love Him. I Corinthians 2:9

This Christmas season I want to believe in miracles. I want a sign, a sign of the season. I want to believe that Aiden will walk and talk, laugh and tell jokes, have friends and one day be in love. I want to know in my heart of hearts that all of God's plans are the best. I believe that today the Lord gave me that verse to remind me of His faithfulness to care for my son and my family.
Thank you Father.

Please continue to pray for our family as we seek to do the best for all of our children. Praise to the Lord as we enter this week before the celebration of Jesus' birth. Praise the Lord that we are almost finished with the therapy room. (As we head towards Christmas I am also thankful for another year personally--my b'day is 12/25). Continue to lift Shannon and her family. I pray that this would be a restful and healthy season for them.

Thank you all so much and blessings to all,
Christa

A trip to the mall

2008-12-15T22:47:00.006-05:00

This time of the year a trip to the mall is a busy and sometimes overwhelming experience. People searching for the perfect gift; just the right things for friends and family. The mall decked out in lights and greenery. The sounds of familiar carols mixing with the ringing of the Salvation Army bell ringer outside. We did not head to the mall for any of these things. We headed there for space!

I am sure that I've mentioned that our home is rather "space challenged".
I am not exaggerating when I say that there is no need for Aiden to use his gait trainer in the house. Firstly, the space is so small that he can knee walk with less effort than it would take to stand up. Secondly, there is not enough room to maneuver the thing!! Therefore, we decided to go to the mall.

I am so fortunate that Aiden likes to walk. Tara and I barely got the gait trainer set up before he was ready to take off!! Aiden's loves to walk and be independent. It's good to be in a place where he is able to go and do. ( So often I feel like he is hindered by our lack of space.)

Aiden did really well. He spent 45 minutes walking the mall. We also spent some time on the little playground climbing up the stairs and sliding down the slide. Aiden maneuvered around tables and chairs in the food court and was able to steer the gait trainer with much less intervention than I've had to use in the past. ( Actually, I used to use a golf club to direct the trainer. It kept me from having to bend over so much. This time I didn't even take it.) Right before we left Aiden rode on a little carousel. He laughed and held on tight! I think that he enjoyed himself. I had a great time watching him, and trying to get some pictures of him on the ride. I knew that it was time to go home when Aiden started dragging his feet. After 45 minutes he was pretty tired so we headed home. It was a really good session. I was so proud of my little guy.

I have tried to be very transparent with all who read this blog. What you see is what you get with me. I really have no hidden agendas; I don't have time to play games with people. (That's not to say that I don't have fun!) As you know, one of my big projects has been to complete a room make over; changing a storage room to a therapy room. The pictures here are of some of the contents of the room and the room itself after Dave and I worked on it for six hours.

I wish that I could give great news.....The room is done! but I can't. As you can see, we have a significant amount of work to do. There are baby clothes to sort, golf clubs to pack up, educational supplies to go through, and tons of other things that need new homes. I am not opposed to throwing things out so that is not the issue. The issue it the sheer volume of stuff. Where did it
come from?? I blame the grandparents:)!No matter the source of the clutter, it all has to be dealt with in order to gain some kind of balance in my home.

For many of you this time of year is a struggle with balance; how to spend your time; where to spend the holidays; how to spend your money and on whom; how to keep the focus on the reason we celebrate as opposed to the busyness. I have struggled this year with the overwhelming feeling that we need nothing; that to give would be out of obligation, and to receive would be the same. My gifts to others would not be like those given by the Wise men. Those men brought gifts that were precious, timeless and useful.

That is the kind of gift that I would like to give all of my family this year. There is only one gift that truly meets all three of the criteria: Jesus. He is the same yesterday, today and forever (Hebrews 13:8); He never leaves us (Deuteronomy 31:6), and His gift, eternal life, is just that - eternal. I am blessed to be an adopted child of the heavenly Father (Galations 4:4-5). As you seek to celebrate this season, I pray that you do so as a child of the one born to save us all.

Blessings to all who are reading. I hope that you find some encouragement and I hope that you know what a blessing you are to me. Continue to pray for our progress. I am struggling with maintain a schedule with Aiden's PT. Also, our project-the room--seems to ebb and flow. I would like to have it done this week. Shannon let me know that Makayla had a good week. She seems to be recuperating well, and is sleeping better. Your prayers are certainly helpful.

Thank you all.
Christa

So, how many shoes does it take to fit one pair of orthotics???

2008-12-09T14:57:00.005-05:00

This may seem like a strange question to many of you, but for us it's like the old "How many licks does it take to get to the tootsie roll center of a tootsie pop" question. Finding shoes that will fit over Aiden's orthotics is really not that difficult until you consider that he wears a size 5 1/2 shoe and his orthotics require about a size 7. They aren't actually that much bigger than his feet. It just requires that much extra space to maneuver the orthotics into the foot opening.

So I embarked on "The Great Shoe Search". Because kids out grow shoes so quickly, and because the likelihood that I will have to cut them is great, I started at Wal-Mart. No luck there. Apparently, Wal-mart has decided that there isn't enough money in children's' shoes so they are only carrying a small selection. Next, I headed to Target. Addison and I looked at shoes for 35
minutes trying to find the right style and size. We came up empty handed. It was pretty discouraging.

It's not like Aiden is running around barefooted. We do have shoes to fit Aiden and his orthotics. The only problem is that they are sandals!! If we lived in a warmer climate I wouldn't worry, but we live in the mountains. There might actually be snow at some point. Therefore, the search had to be continued.

In a last ditch effort to find shoes for my sweet little guy, Dave and I headed out to the Target in Richmond. I was not very optimistic about finding anything, but I went hoping that maybe we'd get lucky. Surprise, surprise! We came home with 9 pairs of shoes.

Not all of them fit; actually only one pair could be effectively disassembled to accommodate his orthotics. But one pair is better than nothing. They are similar in style to the shoes we used with the therasuit; wide heal, wide toe, fabric. I was concerned that the only way that we could get them on would be to "hinge" the backs again. Instead, my mom noticed that the tongue of the shoe could be loosened to allow for easier entry.

Finally armed with a new pair of shoes, we headed to our orthotist today. Marvin trimmed and sanded the orthotics a little and that made getting Aiden's shoes on even easier. YEAH!!!!!

I am convinced that much of my life is like our shoe search. I have to try on a lot of shoes before I find a good fit. Translation: I have to try alot of ways to do things; organizing my house, motivating my kids, scheduling our therapy, etc. , before I finally find what is best for us as family. For much of my life I have felt that I had to do things well all of the time; had to be the best that I could be, and live up to all of the expectations that people had of me. (What a very constraining life to live.) I now know that there is only one person who's expectations I have to fill; the Lord.

God accepts me as I am; a woman who loves her family, does her best as a wife and mother (most of the time), tries to be a good friend, and falls short of the standard of perfection all of the time. I am ok with not reaching the standard. Trying to be "perfect" all of the time was tiring and demoralizing. I could never quite measure up and felt bad about it all of the time. The life that I have as a forgiven child of God provides me with freedom from a standard that I can never achieve.

The birth of Jesus freed us all from having to live up to perfection; He gave us the option to have "the peace of God, which surpasses all understanding"...guarding "our hearts and minds in Christ Jesus." Phil 4:7
As we head into the Christmas season I hope that you will learn to live in the place of peace that the Lord can provide.

Thank you all so much for you prayers. Aiden was exposed to RSV over the Thanksgiving holiday and Addison required a quick trip home from Richmond on the Tuesday before Thanksgiving because of an ear infection. Once we got home both Dave and I developed some nasty respiratory virus that has us blowing noses, drying eyes and coughing to beat the band. (At one point over the last week we ran out of paper towels, napkins, tissues and we were down to one partial roll of toilet paper all because there was so much nose blowing going on!!) Thankfully, Aiden has shown no signs of RSV and the rest of us are rapidly on the mend.

Continue to pray for Shannon and her family. I believe that Makayla is continuing to improve. Shannon is concerned about the rest of this winter season. I would ask that you pray for good health for them along with peace for Shannon's "mother's heart". It is sometimes hard to find rest in the Lord when your kids are involved. (I am sure that there are moms who know what I'm talking about:) )

Blessings to you all. I won't let so much time pass next time.
Christa

A rainy day in Richmond

2008-11-30T21:24:00.003-05:00

It is a rainy day in Richmond. Most of the time rainy days don't really get to me, but today was different. I have been close to tears off and on several times.

I am not sure exactly why. Maybe it is because of the season. Some people do get a little melancholy during the holidays. Usually that is not me. I really love this time of year. I was born on Christmas day and entering the Advent season is typically a joyous time for me and my family. Maybe it is because of the kids all having one kid ailment or another over the last week. Really that is no excuse either. My kids have been sick before and I've not been deeply sad.

If I am truly honest with myself and seek hard enough for the source of my heart ache I am able to pin point something. In stating this fact I hope that I will not hurt feelings. (It is certainly not my intention.) So here goes. I believe that I am once again grieving for the son that I have lost.

That sounds rather ominous. So I will explain myself. Over the last several days I have come face to face with a precious little
one named Max. He is my 11 month old nephew. Max is beautiful; soft and cuddly and starting to walk. Actually, today I watched as he stood himself up and walk across the living room. Things that Aiden should have been doing years ago--literally!!! It is hard to watch and be excited, as I truly want to be, when my own son works so hard to simply stand up.

This sounds like a pity party and I am sorry. Honestly, I am having a bit of an emotional day. (I have tried very hard to be transparent in my writing so there will be days like this.) I want to believe in my mind that things will work out; that Aiden will be ok; that someday it will be easier, but my head really gets in the way.

In my life there are days when I feel like I can conquer the enemies that loom on the horizon of the future; like they will fall at my feet because of the power that is at work in me. Today, I am struggling to see beyond my circumstances. So what am I supposed to do? What are you supposed to do if you are in the same place?
I think that my focus for the next several whatevers (days,weeks, months, whatever it takes) will be Psalms 46:10, "Be still and know that I am God." I will find the peace that passes understanding (Phil 4:7) because I know that God is faithful to His children; me and Aiden.

I have included rainy day pictures of Aiden today because he got to wear his jammies all day. He also got to do two of his favorite things: read books and watch some TV. He has run a fever and had a stuffy nose for the last several days so a pj day was a good thing.

Please continue to pray for us as we try to get back into our PT schedule. Also, as we head into this week, I would really like to complete the therapy room. That would be a great answer to prayer. Thank you for your involvement in our lives through the blog. Comments are great and let me know that I am not just writing for my own sanity (although that is actually true). As well, continue to pray for Shannon and her family. I haven't heard this week-end, but am hopeful that they are well into the recuperation process.

Blessings to all,
Christa

A note of thanksgiving

2008-11-28T20:09:00.002-05:00

Once again, I come to you all at the end of the week. It has not been bad mind you, only filled with traveling and the unsettled feelings that too many miles in a mini van can yield!! I will have pictures tomorrow, but I wanted to give you an update on Makayla, and give an insight into my Thanksgiving state of mind.

Firstly, thanks to all who have prayed and continue to do so for Shannon and her daughter Makayla. I had requested prayer for her hospitalization from RSV last week. As of Monday this week, Makayla was recuperating at home. Her oxygen saturation was considerably better, and although her lungs were not completely recovered (air sacs were deflated), she was doing well enough to be at home. I believe that Makayla is being treated with steroids to manage inflammation, but I am not positive about it. As well, Shannon's dad was going to be able to come into Richmond to provide some much needed respite for Shannon and her husband.

This is definitely an answer to our prayers. Please continue to pray for Makayla's recovery and progress. I believe that she is a blessing to her family, although, at times, like our Aiden, a challenge that is stretching and strengthening her family's spiritual muscles. For some this could be overwhelming. In Shannon, I see love, devotion, compassion for others and a calling to serve. I am thankful to be able to be used as a prayer warrior. Thank you all for being involved also.

Now for Thanksgiving. It is strange that there has to be a specific day for giving thanks. I know that there are days when I am less than thankful; I'm tired, my head aches and I can't decide what to fix for dinner, or I feel overwhelmed by the enormity of the commitment I've made as a parent, etc. I get grumpy and irritable; not just with my family, but with the Lord. Perhaps it is because of these days that it is a good thing that there is a day for thanksgiving.

Or maybe there is a day to remember to be thankful because we are not born with the inclination. How many times do you hear the parents of small children remind them to say "Thank you"? (Or please for that matter) How many times do I forget to thank the lady at the check out, or the mailman, or the guy who holds the door open at the mall? We are not naturally grateful people.

I wonder why that is; why are we not more thankful? Maybe it is because generally we have so much. Or maybe it's because we believe that we deserve all that we have (and more!). (So much for that "you have a low self-esteem" theory!!) We often take for granted the bounty that we have. For me and my family, I would like to change that.

The Psalms are full of songs of thanksgiving. Then the people knew that their blessings came from the Lord Almighty, not from hard work, a good education, or the right connections. And they expressed thanksgiving with gusto.....

Enter His gates with thanksgiving and His courts with praise.
Give thanks to Him, bless His name.
For the LORD is good; His lovingkindness is everlasting
and His faithfulness to all generations. Ps 100:4-5

Thankfulness should not be based on how I feel, what has happened during the day, or the price I had to pay for a tank of gas. It should be based on the fact that the Lord is good and not just for today, but to all generations. I will strive to be thankful daily.

Blessings to you all and I will post tomorrow.
Christa

So here's what's been going on

2008-11-23T22:57:00.008-05:00

Earlier today I left a prayer request for you all. Now I can take some time to let you know what's been happening on the home front. Because as you all are well aware, there is seldom a dull moment at our house!!

Last Sunday we had a wonderful day at church. Aiden spent most of his time walking. He was on his feet for almost 2 hours. It was wonderful to see him moving independently. Unfortunately, when we got home he took a spill backwards. I know that it sounds dramatic, but the floor shook when he landed. And, as has been his habit in the past, Aiden fell like a tree in the forest...stiff and straight back. He hit his head so hard. I just couldn't look. (And if the truth be known, I cried.)

Aiden did a silent scream thing and got a little dusky around the mouth. There was a huge knot on the back of his head. He did not, however, lose consciousness.
All this is to say that come Sunday after nap Aiden was none to eager to walk independently.

He reverted back to some of the anxious behaviours that we were seeing before intensive. Needless to say, I was discouraged and distressed. How could this be happening after Aiden had come so far???

In my mind I decided that after a little PT on Monday everything would go back to normal. (That's a lot of eggs in one basket let me tell you!) Monday rolled around and PT was tough. Aiden held onto any part of me that he could reach; leg, arm, hand, hair. We toughed through, but it wasn't pretty.

I didn't have time to wallow, we were celebrating Aaron's 11th birthday and a very important Cub Scout award ceremony (Arrow of Light award). I was doubly encouraged at the ceremony. Aaron did a great job reciting his part, and Aiden (pictured in red) decided that walking with his gait trainer was OK.

Tuesday my friend Becky and I started cleaning out what will become the therapy room. (I will include a picture of the before eventually, but I don't want to hear any large inhalations of air once it's on here!!) We got about 1/3 of the way through so it may take a while longer to complete that job. But that is a totally mundane kind of topic. Let's get to the good stuff!!

Here it is, the most bizarre thing that happened this past week (I hope that I won't regularly have such a strange thing to pass on). Tara, our PT helper, called me Wednesday morning to let me know that she would not be coming for our workout. She had fallen off of a roof!!! Yes, I said a roof. She had been helping her dad with a project (obviously a roofing project) and she slipped. Fortunately, she was tied to her dad when it happened. Tara bruised her behind; slipped a second time and bruised her knees; sustained bruises on her torso from her bottom ribs to her armpits where the rope caught her. It was definitely not what I expected to hear on a lovely morning. Maybe "I've got a cold." or " My car broke down." , but certainly not "I fell off a roof."!!

Tara is ok, still bruised, but ok. She did come for PT on Friday, and surprisingly enough, Aiden was better. Not back to his (new) normal self, but not back to the child who would not make a move without a hand. I am sure that he will continue to move forward, but the days that seem like setbacks will still be difficult.

We met together as a family to celebrate Aaron's birth and his achievements in Cub Scouts on the 17th. That gave us a chance to honor him, and it gave Aiden to gain some confidence in his walking again. If we had not been in that place would there have been that opportunity? I don't know. What I do know is that God's timing is perfect. It is never too early or too late.

I was reading today about Abraham and Sarah and their wait for Isaac. How crazy would God have seemed if He had said, "You're going to have a son, but you won't have him for 30 years. I know that you and your wife are elderly, but trust me, it will happen for you." If it were me, I would have laughed and walked away. Instead, the Lord simply says, "Give thanks in everything; for this is God's will for you in Christ Jesus." (I Thes. 5:18) So no matter how many setbacks or surges forward, I must give thanks. (Just so you know, that verse seems to be saying that the part that is God's will is that we give thanks!!) I don't know if I could handle what lies before us if I saw it all at once. It is just too big. I can, however, allow God to deal with the future while I give Him thanks.

Thank you all for your faithfulness. Know that you bless me with the knowledge that you read and pray. (Comments just let me know who's there!) I will do my best to have an update on Shannon and Makayla tomorrow or the next day.

Blessings to all,

Christa

A quick update

2008-11-23T12:24:00.003-05:00

Hello again. I am so sorry that I have been so lax in writing this week. It is not because I haven't thought often of doing so; simply that life seems so much more involved at home. It's really no excuse, but it is the truth.

I am back in Richmond with the family this week-end. The men in the family are heading out to do some fishing so Aiden, Addison and I are here with Grandma. We will head home on Tuesday and then back again on Wednesday or Thursday. (I wish that I could get frequent driver miles!!)
It's a crazy schedule, but at this point it is not worth worrying about.

Actually, this will be a rather short post today. I wanted to let those of you who read and pray about a prayer request that has been given to me. Shannon, our PT here in Richmond, has been staying in the hospital with her daughter Makayla since Wednesday. Makayla has RSV and atelectasis (a collapse of lung tissue affecting part or all of one lung). In an uncompromised child these are difficult. Makayla has some respiratory difficulties normally so this could be more dangerous. Shannon is hopeful that Monday will be their release date. Please pray that this is the case. Please pray for Shannon, her husband, and their other daughter; for rest and peace. Please provide doctors with knowledge and compassion. Finally, pray that the Lord would use me in this situation; whether it be preparing a meal, sitting with their youngest, or doing a stint at the hospital.

I truly appreciate the freedom that I have to come to you all and ask for prayer. It is a blessing beyond compare. Thank you to all who take these and all of my requests before the throne with confidence. You are a blessing.

In the love of the Lord,
Christa

PS. I will blog tonight once I've gotten a card reader for Mom's computer!

The "prodigals" return

2008-11-17T00:16:00.001-05:00

We returned to church today after being away for almost a month. When they asked if there were any first time visitors I felt like I should raise my hand! It was a happy and very welcoming return for us.

As is our family's habit, since having Aiden that is, we sit in the very back of the sanctuary. There is about 10 feet between the back wall where the back pew is located and the next to last pew. So in the past we've sat in the back to let Aiden crawl around. Today he didn't crawl. Today he walked. And as he did, the faces of those precious people who have been praying lit up with true joy.

Our church family is thrilled to see Aiden's progress. Not only are they excited to see his success, but because they have loved us through all of the stages in Aiden's life, it is in a way their success also. Not to mention the fact that as they have prayed and continue to do so, they are seeing God's hand at work in Aiden's life and in the life of our family.

I am struck by the difference being in the right place can make in any situation. We went through a period of several years when we were not attending any church regularly. It was a very spiritually dry time for Dave and for me. During that time Dave had a very serious head on collision while I was out of town with the kids (Aaron-4 1/2, Addison 2 1/2). If we had been in a good church I would have called to have someone stay with Dave until I could drive the 4-5 hours from the beach. As it was, I felt scared and alone, and I wished for a church family. How fortunate we are now.

That really scary time drove home what Hebrews 10:25 states so clearly, "Let us not give up meeting together, as some are in the habit of doing, but let us encourage one another—and all the more as you see the Day approaching." So when I saw tears in the eyes of several of my dear friends this morning, I knew that they were tears of joy, happiness, and faith in what the Lord is doing in our lives. They were encouraged to see God working and answering prayer in a real way; and they were encouraging me by pointing me to the One who is doing miraculous things in Aiden.

Thank you for reading tonight. I appreciate your time and comments. Please continue to pray for us as we head into a new week of therapy. Pray that I am able to balance Aiden's needs with those of my other children. Praise Him for Aiden's progress. Also, continue to pray for Shannon and her family. Pray that Shannon is able to get help from the NIH.

Blessings to all,
Christa

PS. Sorry there are no pics tonight; batteries died in my camera!! :)

It's all about being creative!

2008-11-15T16:52:00.006-05:00

We have completed our first week of therapy at home. It was both exciting, challenging and frustrating all at once. (Mostly, it was exciting and challenging.) Aiden was able to tolerate 3 hours of directed PT and many other moments that "just happened".

One of the most challenging situations stems from the fact that we don't have all of the equipment that I feel like we need.
I would love to have a therapy cage, a suit, a room for workouts, a therapist on call, but I don't. So we have been forced to use lots of creativity.

Firstly, I couldn't find ankle weights so we're using wrist weights. (They do have thumb wholes that make for great hand holds!) Next, it is really hard to do abductor/adductor exercises without knee immobilizers, so with a couple cardboard folders and therabands we have
insta-mobilizers!! The ankle weights also work well as a body/waist belt. Finally, I enlisted extra help. My little helper, Addison, is really becoming very adept at keeping Aiden on the peanut. She is very willing to be helpful and nurturing with Aiden. It is a special blessing to see her with him.

Speaking from a strictly therapeutic view, Friday's session was much better. Tara and I realized we had not been following the routine that Aiden was used to. We started Friday with massage, then weights and finally the other exercises. Although we had to use motivators (TV and Maisy books), Aiden was much more willing to complete his workout, and responded much better to having Tara and I giving him cues. I was very encouraged!
I'm relieved that this week is over; not because it has been a bad week. I've learned that, although we are not able to recreate the marathon experience at Hope Therapy, we will be able to maintain more PT time than in the past. Aiden will learn to work with Tara and me, and the more we practice the techniques the better we will be. We will grow in our abilities to help and Aiden will grow in strength.

Much of our focus over the last several weeks has been on increasing Aiden's physical strength. It is, without question, a requirement for his mobility and ability to function in this world. I have felt that the Lord has prompted me to share, as well, my own personal quest for strength; spiritual strength. As I try to get back into the swing of things here at home I am reminded that I am not strong! Honestly, I'm ok with this because I realize that by admitting my own weaknesses I will begin to be able to gain strength from the One who created me.

Second Corinthians 12:9 says, "But he said to me, "My grace is enough for you. When you are weak, my power is made perfect in you." So I am very happy to brag about my weaknesses. Then Christ's power can live in me." I won't list my issues right now, but I will say that currently the Lord is allowing me to practice humility. I am learning to admit that I need help; to accept it when it is offered; to be gracious in circumstances in which I never thought I'd find myself. Despite public opinion, we are not self-sufficient and we were never intended to be.

This week I have been given a gift; a gift of grace and humility. It is precious and it's giver is a blessing. Take the gifts that are offered this coming week, and thank the giver and One who provides all things.

Thanks to all of you who are continuing to pray. Your gift is priceless. Please continue to pray for Shannon and her family. I believe that they may have had some help this week and therefore may have been able to rest. Pray that this continues. As well, praise the Lord for His faithfulness not only to us but to all of His children.

Blessings to all,

Christa

PS. If you read this Shannon, the abductors were in the house Friday!! YEAH!!

Our first day at home

2008-11-11T22:55:00.005-05:00

So, we began our first day of home therapy today. It's not like we haven't been involved in therapy in our home before. For the last 3 years Aiden has received PT right here in our living room. Only today we were implementing some of the new exercises and routines. As well, Tara started with us today. It was a whole new ball game!

You may be asking yourself, "How did it go?" "How did he do?" Well, here is the answer. In a nut shell, Aiden did not do as well as I had hoped, but he did not revert to his old routines either. He seemed tired and not as focused as I had hoped. There was some disappointment

on my part and some frustration on his.

Then I decided to look at things from his perspective. Aiden is a little boy. He can't necessarily transfer information from Hope Therapy to another location with ease. Honestly, it was difficult for me to make the transition from therapy center to living room. Also, I am not Shannon and neither is Tara. We are both learning the ropes for home therapy with Aiden. Knowing how to hold him; knowing how to facilitate weight shifts; motivating him; I am not proficient yet. Finally, Aiden is smart enough to know that he is at home and I don't really know what I am doing.

This all being said I don't think that today went as poorly as I think that it did. Aiden tackled sit to stand, tall kneeling, trunk rotation, sit ups, bridges, weight bearing on his arms, balancing and bouncing on the peanut and squatting in his mid range. We also did some exercises like one we did in the cage; triple flexion, hamstrings and today, we actually got to abductors!!(hope I spelled that right, it's the muscle that lets you side step, and to this point there has been little action there.) Today, Mr. Lefty gave us 3 good ones! It's the little things in life, right!!:)

I feel like our lives with Aiden have been a journey. Until April we lived our daily lives as if things would change miraculously; hoping beyond hope that maybe there wasn't something really wrong with our son. We carried on with therapies at home believing that they would facilitate the his return to normalcy.

In April that hope was shattered. His diagnosis of CP, although not completely surprising, slammed a door on the dreams of retiring from parenthood when my dear Aiden turned 18 and moved on to a life of his own. I wanted to know what I had done to deserve such a terrible fate (pretty self-centered, huh?). I wanted to know why my God; my heavenly Father, didn't change things when I know that He could.

As we move into this new place on the map of Aiden's life, I feel like Hope therapy was like a cruise in the sea of therapy. We took 3 weeks off from our normal routine (kinda like a vacation) and visited with friends (the ladies and clients at the center). While on the "cruise" we hiked (gait training), mountain climbed(stairs), took long walks (treadmill), took a spinning class or two (tricycling), spoke a new language (the big mack switch) and ate exotic foods (pirate booty and cheerios). But now-it's back to the grindstone.

We will see how it goes here at home. Tara and I will continue to work with Aiden several times weekly. Our home therapist, Bethann, will be back with us tomorrow. We will be returning to speech on Tuesday, and to hippotherapy soon.

One of the verses that Dave and I have held onto throughout our marriage is Proverbs 3:5-6, "Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge Him and He will make your paths straight." I will continue to trust that we are in the right place; doing the thing that I have been called to do. Maybe I may even get the chance to encourage or help someone else as I go.

For those of you who are praying for us, please continue. I am in need of stamina to carry on this task. My major obstacle to date is creating a space specifically for therapy. Pray that this is accomplished quickly. Also, pray for Aiden to transition into home therapy. I have not talked to Shannon about their nighttime situation, but continue to pray for her family.

Thank you all so much for keeping up. Keep the comments coming.

Blessings to all,

Christa

Our last day at Hope Therapy Center

2008-11-08T23:30:00.016-05:00

Yesterday was our last day of intensiveat Hope Therapy. I am at a loss for words. For those who know me, that is surprising. So I will take this time to reflect over the events of the last 3 weeks. Maybe I'll come to some conclusions, maybe I'll just ponder, who knows?

(Aiden jumping for joy on his last day!)

When we first started 3 weeks ago I was skeptical to say the least. The day seemed long, the suit was strange and Aiden did not like it at all, it was difficult work for Aiden, and on top of everything, I was sick. I was so uncertain that we were going the right way with this therapy. I wasn't scared; I was doubtful.

(He was being so silly!)

But the next day was better. Aiden did better with the suit. He didn't fall asleep right after the session. He seemed to be responding to the routine much more quickly than I had expected him to. As well, Shannon was encouraging and supportive. Actually, she was also open and forthcoming about her own life. It made me feel comfortable and not quite so lonely.

Week one went off without any major problems. We began to see behaviors at home that seemed different from what Aiden had been doing before. He was more confident on his feet. He seemed to want to be moving. And he was doing a lot of up and down on his toes. I had hope.

We were warned that often times the second week was the most difficult for the children. I steeled myself for crying, screaming and tantrums. It didn't happen. For the most part, Aiden was content and happy. (It didn't hurt that on occasion I brought the DVD player in to the center!!) He rode a tricycle, tackled steps and began to show signs of improved strength.
I had more hope!

So we began week three. Aiden was a little more grumpy this week, but he still pretty much followed the program. Although we were following the same basic routine that we had followed the 2 weeks before, Aiden was showing more progress. The exciting thing is that we saw a lot of that progress at home. He would just show up in the kitchen. He would walk independently across the room. He managed his gait trainer in the yard outside. Amazing!!

That brings us to today. It is Saturday, and today we celebrated Aiden's and my graduation from the Hope therapy intensive program. Our family has been very supportive throughout
this process, and in true goofy family fashion, had a graduation dinner for us tonight. (Aiden's graduation)

Before we ever got to this point; before there was ever the hope that this would be remotely successful; before we read about the fire at Hope therapy; there was a bigger plan, a purpose. There was someone who knew what was going to happen; someone who saw the big picture.
I have often questioned that someone and have railed at Him about my situation; about Aiden's situation. I have asked why!

I have not heard the voice of God or of angels. I have not had any prophetic word as to the reasoning behind my baby's disability, but what I do have are God's promises. Firstly, He says that "In all things God works for the good of those who love him and have been called according to His purpose". I can be sure that Aiden's birth and placement in my family are purposeful and good. Secondly, I have a promise directly from Jesus' mouth, "I am with you always, to the very end of the age." This doesn't really answer the questions, but brings to mind the fact that at no time am I ever alone in my struggles.

( Aiden at the family celebration of our completion of intensive.
Boy does he look pleased !)

I look into the eyes of my precious son and I see the heart of a child; full of laughter, games of hide and seek, tears over broken toys, love for Mommy and Daddy; trusting and sweet. In those eyes I can't see his future, but I can and do see hope.

Thank you to all who have continued to read and to those prayer warriors who have stormed the gates of heaven on our behalf. The Lord has been faithful. Please pray for our plans once we return home; that I will be able to organize enough to maintain a more rigorous PT schedule. Also, praise the Lord for the seed of hope that He has planted in my heart. And big huge praises for the progress that we have seen in Aiden. Pray for Shannon and her family. ( I had the opportunity to meet both of her daughters and her husband. Her family is very sweet, and now I can put faces with the names.) Continue to pray for them to have restful nights. Finally, pray for the staff and clients at Hope Center. They need to know that they are being lifted up.

Blessings to all,
Christa

PS. I have decided that I will continue to maintain this site to chronicle the return home and Aiden's continued progress. I will not blog everyday, but will try to at least 4 times weekly. :)

We are almost to the end

2008-11-06T21:49:00.010-05:00

I can hardly believe that our time here in Richmond is almost over. It seems like the time has flown by, and in spite of the hard work, challenging schedule and being separated from Dave, it does not seem as if we've been here for 19 days. We have been treated with such care that in all honesty, it has felt like home.

No matter how short the time has seemed, we must now decide how we will handle our return home. I am excited to say that our return will not be as scary as I had originally thought. Actually, our prayers (and the prayers that our team is praying) have been answered! Let me explain.

About 10 years ago I began tutoring a student in Language Arts. She has since grown up and has over the last several years trained and worked as physical therapy tech. Currently, she is available to provide me with help in carrying out Aiden's extra therapy. I didn't come up with Tara's name on my own. Just like many of you, I have been asking the Lord to guide me into a place of peace about our return home. As I was driving in to the center 2 days ago, Tara's name came to my mind and I called. I was excited when she called and seemed interested, but when she offered to come to the center to see what Shannon needed her to do, I cried.

I realize that this is just one more time when the Lord has provided for us or given guidance in this situation. Truly, I am stunned by His faithfulness. And the thing is I know that I don't deserve it at all. I have been reminded so many times during Aiden's life that God has chosen us to be his parents. There have been days, (and may be more in the future), when I questioned God's wisdom; when I was angry and resentful. And no matter my behavior towards Him, God has remained; faithful. Psalm 86:15 says, "But you, O Lord, are a compassionate and gracious God, slow to anger, abounding in love and faithfulness." I don't want to make this sound simple; life can be hard and heartbreaking and back breaking and sad and lonely. But there is hope and peace and grace and healing in the arms of the Lord; because He is forever faithful.

I will end here and again extend my thanks and gratitude for the prayers and praises that have surrounded us through our therapy. Continue to pray for our progress tomorrow, and at home. Also, continue to pray for Shannon and her family. Sleep would be a blessing!

Blessings to all,

Christa

PS. This last picture is of Shannon putting Aiden in a harness for balance and bouncing in the therapy cage. Today, my son jumped for the first time!!!!! He bent his knees and his feet came off the ground! Needless to say, we "jumped for joy" and cheered at the top of our lungs, and maybe even teared up a little :)

We finally got the videos!!!

2008-11-05T21:49:00.020-05:00

Drum roll please......the videos are here! As you can see in the picture, Aiden is all ready to watch his movie star debut and I am so excited for you all to see some of the therapy sessions in action. Both of these videos are from earlier in therapy, and Aiden has progressed since that time, but it gives you the opportunity to see Shannon and Aiden in action. The first video is from our first week. Aiden, as you can see, is in his therasuit and using his gait trainer. The suit provides an extraordinary amount of resistance and pressure. We'll never know just how heavy those shoe are for his little legs!
In the second video, taken a week ago, Aiden is working hard to tackle the stairs. This is a skill that he has certainly not mastered, but his strength has so increased that he is able to stabilize his trunk more and is learning to properly place his feet on the steps independently. He still needs lots of help, but his gains in the area of mobility have been impressive.
Today in our most recent session we began the process of preparing for discharge. I am here to tell you that I am not thrilled to be leaving. Firstly, I am concerned that we will see a regression in Aiden's skills. As you well know, an exceptional amount of time has gone into this therapy, and although I would certainly do it all again, I would hate to see him lose skills. Secondly, our home is not necessarily equipped to handle the therapy stuff. We live in a small house that is filled with people (5), pets (2), and stuff(a ton). We have gotten rid of stuff, but people and pets stay. Lastly, and this is my own selfish reason, I will miss the company and friendships that I have established at Hope Therapy. I have had 15 hours a week to be with people who share a love of special needs children. (Ironically enough, I am a licenced Special Education teacher, so I have always felt a calling to special needs kids!) I am able to be silly. Cheer for the underdog. Dance if I feel like dancing. I have been able to feel at home. Bottom line, I will be lonely.

Also, I look at the amount of work that it will take to juggle everything; homeschooling, therapies, extra curricular activities, advocating for Aiden, having 5 minutes to myself (and not taking it in the bathroom with the door locked!). It all seems like a rising river, one that my little raft may not navigate. So, as the time nears for our departure I am trying to take my life one day at a time. Jesus said that we shouldn't worry about being fed or clothed; that to God we are so valuable that He'll take care of those things. Then He says, "Who of you by worrying can add a single hour to his life?...Do not worry about tomorrow, tomorrow will worry about itself." (Matthew 6:25-34 condensed) Therefore, I will seek daily to learn to walk in a place where I look to the tasks of the day, and let the Lord take care of my future (and that of my family).

We have 2 more days of intensive and I am so grateful for the prayer support that we've received from you all. Please continue praying that Aiden has a successful completion of the program and that I begin to know that the Lord is in control of our return home. Thank you all.

Blessings,

Christa

Today Aiden got his voice!

2008-11-04T22:16:00.020-05:00

For those of you know us well you know that at age 3 Aiden is completely non-verbal. He makes noises and he definitely has inflection and volume, but to date no words. This inability to communicate has certainly been a difficulty for us as parents, and a source of some frustration for Aiden. It is unfortunate that most children in his situation either become agitated by caregivers' inability to understand, or they simply settle for whatever is being offered. This is the case with my little guy. Instead of getting mad he just takes whatever you offer or

he hands over the remote control in hopes of having the TV turned on.

Today we entered a new and exciting era in communication for Aiden; assistive communication! (I don't think that's the official term but it's late and my brain is in a holding pattern.) I am sure that many of you have seen the commercials for the "Easy Button". Well, this device looks much like a really big easy button. It has a recorder built in to allow a single word, command, need, etc. to be taped and replayed when the button is pushed.

We put a picture of Maisy on the button, taped the word "Book" and tried it out. Aiden got the idea right away. He pressed the button, it said book and someone would read to him. Then the book would disappear and he would push the button again. He repeated it over and over! He really got it.

At snack time we used a picture of cheerios and taped the word "eat". He would push the button and hold out his hand for me to give him a pizza puff (we didn't actually have any cheerios, but he still got the idea). Truly, I was amazed. Once again, I have underestimated my sweet, very quiet little boy.

I believe that this is just one more opportunity for the Lord to say to me, "Christa, I am much bigger than you think I am. I don't fit in your box, and neither does Aiden. Let us out!!" I am ready to open that box and let God be God, and let Aiden be Aiden. What a blessing he has been to me so far. Why would I expect anything less?

As parents of children with disabilities, I believe that we can become so wrapped up in the syndrome that we sometimes miss the beauty and blessedness of the child. With the demands of therapies, feedings, schooling, insurance and medical issues it is easy to lose perspective. And yes there can be heartache and difficulty, but there is also personal growth.

Thank you all for reading tonight. Please let me know by leaving comments. As we come into the home stretch, I am in need of some personal encouragement. Pray for our final 3 days, and my ability to translate this into a do-able home program. Please continue to pray for Shannon. She is a dear person and someone who I would consider a friend at this time.

Blessings to all,
Christa

All the practice is paying off!

2008-11-03T23:26:00.007-05:00

They say that practice makes perfect, but I guess I didn't think that applied to our situation. Yeah, I realized that the more we repeated an action with Aiden the more likely he would get it, but coming into this marathon therapy setting I wasn't thinking about what he might actually get.

Today I watched Aiden really begin to get the idea of kneeling to stand and putting his hands down to push to stand. You can see on our faces that we are just thrilled to see him succeed at this activity. You don't think about the mechanics of this move, but it is pretty involved. For Aiden it is even more of a challenge because of a disconnect that seems to occur between his brain and legs. His legs say, "We will not bend no matter what!" Not that he is particularly stiff otherwise, it's may be a muscle firing problem; I don't know. But now, after 33 hours of up and down, bouncing on the trampoline and using the bungies in the therapy cage, he is finally getting it!!!!!

It seems that the more he learns the more hesitant I am to return to our hometown. I question my ability to help Aiden to maintain the momentum that we have managed here. To be perfectly honest with you, I am a little scared. To have spent all of this time and lose ground would be disheartening to say the least.

So for those of you who wonder what we'll do and how we'll do it, all I can say is, "I'm not quite sure yet." But I am praying for the creativity that's required to complete such a task in our home.

We are very fortunate to have a very supportive family (some pictured below) and a supportive church family as well. Now, however, comes the really hard part; asking for help. It is easy in this day and age to begin to feel overly self-sufficient. And to actually feel proud of that fact. In the past it has been difficult to ask because I didn't want anyone to know that I was less than able to handle my situations. At this point in my life I am smart enough to know that this is not true. I am unable in many cases, and need help. My learning to humble my self and ask for assistance will not only make me more open to the Holy Spirit, it will also benefit my children as they watch me practice humility; and as others practice the gift of service.

Thank you all for your continued prayers. Aiden is still feeling under the weather, but managed to tough it out through PT today. Please pray for a successful conclusion to our therapy. Also, pray that the Lord gives us clear vision for our return home plans.

Blessings to all,

Christa

The Other Woman

2008-11-02T23:27:00.017-05:00

As a mom you want what's best for your kids. You pray that someday they will meet the right people; the people that the Lord has especially for them. I thought that I would have a lot more time to prepare for this particular eventuality; especially with Aiden. (He is my youngest!!!)

Surprisingly this is not the case. Aiden has a very special friend, a girl friend if you will. And she is very important to him. My son has a thing for blondes, as you can see. He loves her sense of style, primary colors and all. He accepts her despite the fact that she always wears the same clothes and her hair style stays the same.

Girl friend, as we like to call her, is always there for Aiden. She is quietly encouraging through her availability. Girlfriend never complains, but is steadfast no matter how many times Aiden drops her. (I mean that literally not figuratively!) She has many qualities that I would want for this son of mine. (Except, she's plastic.)

With Aaron and Addison I have always had some sort of picture, or dream for their futures. I can envision Aaron and Addison grown up. I can believe that they will marry, have children, and be happy. My visions include spouses who are chosen by God to be helpmates; jobs that are precisely suited to the gifts that they've been given; deep and lasting friendships.

For Aiden I struggle with these dreams. Can he grow up? Will he ever have good friends? Is marriage something that is a wise idea, much less a possibility? Will he ever be able to have a job? Will my son know the his creator in a personal way, and if he does will his circumstances make him angry towards the God who made him? I bring myself back from this kind of worry fest with a promise that the Lord made to His children; "For I know the plans I have for you (and for Aiden)," declares the Lord, "...."plans to give you a hope and a future." Jer 29:11 Although, I'd really like to have control of the situation, I choose to once again step back and sit at the Father's feet, remembering that He loves my children more than I do and will care for them in ways that I cannot.

So in a strange way, girlfriend has given me a peace about Aiden's future. She may not be in his life for very much longer, but her influence on his life will be lasting. And hey, I've got some truly embarrassing photos to show his next girlfriend ;).

Hope everyone had a great week-end. Aiden was feeling a little under the weather last night and today. He ran a fever for some time last night. Please pray for complete healing and rest so that he is prepared to complete our last week at the center. Praise the Lord for our good steps forward so far. Also, continue to pray for Shannon. (Her daughter does not sleep well due to apenea, therefore, making sleep for the family difficult.)

Thank you all so much and blessings for a great Monday,

Christa

Taking a break for Saturday

2008-11-01T23:02:00.002-04:00

Decided to take a break for Saturday, but tomorrow I will have pictures of the second most important woman in Aiden's life. :)

Hope to hear from you all soon.

~Christa

The end of our second week

2008-10-31T23:48:00.016-04:00

As we come to the end of our second week of intensive therapy I feel the need to take stock in what we've accomplished. We have filled our days with gait training, superman swinging, tall kneeling to standing... the list goes on. But in the grand scheme of things what does it all mean?

For us it means that today my son showed his Uncle Chris that he could stand himself up and (almost) sit himself back down again safely. It means that today my son decided where he wanted to go, and was able to steer his gait trainer without running into walls, chairs, etc. Grant it, today was a day that required some video assistance, but it still was a day of accomplishment for Aiden. (He's watching Curious George the movie.)

I attended a ladies' retreat several weeks ago. The theme was "Having a Mary heart in a Martha world". I am learning to have more of a Mary heart as a result of our time here in Richmond. Yes, I am still rushing about to get people to their assigned places. Yes, I am still feeling pulled in many directions, and wonder if anyone notices. Sure, I want to be acknowledged for my contributions to the family (not much feed back in the domestic engineer field!). But, for three hours each day I focus on the important thing. Like Mary I can hear my heavenly Father's voice as He beckons me to wait; as He entreats me to rest in Him; to allow Him to do the work that I would take on myself. I hear the still small voice reminding me that Aiden is safely in the palm of his hand.

Instead of worrying about how Aiden will learn to read, or where he'll get a job (or who will care for him if anything happens to Dave or me), I watch in wonder as he scoots across the room with "the greatest of ease". I believe that this is what I was supposed to see today so that I would remember to choose the things in life that are "better" (see luke 10:38-42).

Aiden is pro gress ing. He may not be run ning any mara thons tomorrow (that is saved for next week) but I have hope that some day he may run. This is more than I could say when we began this adventure. And only time will tell where this one will end up!

Many thanks to all who continue to pray. Aiden has been a little more fussy this week. Please pray that he is able to maintain the schedule for our remaining week. It is very rigorous and he is tired. Praise God for the work that I feel He is doing in me. I am grateful for a change of perspective. I would continue to ask on behalf of Shannon and her family. They need good restful sleep.

Blessings and peace to all,

Christa

PS. Thanks to our friends at Pufferbellies in Staunton. Aiden is sitting on an orange Rody that was generously donated by Pufferbellies to replace one that was lost in the Hope Therapy Center fire. THANK YOU!!

Standing in the gap

2008-10-30T22:40:00.013-04:00

Over the last two weeks I have seen many parents like me; they are doing all that they can to improve the quality of their children's' lives. They are in essence
"standing in the gap" for their kids. This phrase comes from Ezekiel 22:30 and references God's search for "a good man" to intercede for the nation of Israel. This is what I have seen over and over again at Hope Therapy; parents, grandparents, friends, other family members, therapists and staff "standing in the gap" for children who are unable to do so for themselves.

I know that for me the idea of standing in the gap meant that I would take the place of someone who couldn't do whatever it was that they were to do. But after some searching I realize that perhaps it is more the act of interceding for another person. I believe that as the parent of a differently abled child I do that everyday (and not just on a spiritual level). I am right there arguing with his little muscles while he learns to use them. "Come on little hamstring. You know what to do. We're not taking that half way move. Give it to us!!" I am standing in front of him as he uses his walker pleading with him to "come to Mama". And on a spiritual level I beg the Lord for an even playing field, for accepting friends, for an independent future.

The parents and care givers that I have had the privilege to meet or even to just observe over the last 2 weeks have been a blessing. It would be my prayer that as we work with Aiden others would see and be encouraged also. I do not know everyone who has been chosen as parents to children with such extraordinary needs, but there are a few things that I do know: You were chosen for a reason. Your child was chosen for a reason. You can stand in the gap. The God of the universe knew what He was doing!!

Maybe Aiden will never be able to do everything that I would want him to do, or maybe the timing isn't my choice, but I will believe that he will do what God has gifted him to do. Until the time comes when he can do that on his own, I will stand in the gap!

Thank you all for your praises and prayers. I am in awe that you continue to stand with us in this endeavor. Pray for Dave as he finishes up his 2nd week separated from us. Pray for Aiden's stamina. As you can see in the 2nd picture, he got a little fussy about having to work today. Lastly, praise the Lord for Aaron and Addison. They have been awesome kids through this. Continue to lift Shannon and her family. Restful sleep is a real need. :)

I thank God for you all daily. Blessings to all,
Christa

I am exhausted!!!

2008-10-29T22:48:00.002-04:00

It hit me like a ton of bricks, and maybe it's because I had to go clothes shopping, but I am tired. I thought about using the word exhausted. So, in the spirit of keeping this interesting and improving my vocabulary, I decided to use a thesaurus. The entry for exhaust reads; drain, tire, empty, wear out, use, finish, fatigue. Yeah, that sounds like me, but I really don't have a reason for such feelings. I am not doing the hard work. Aiden is.

Each day my little guy joyfully gets up, eats breakfast, watches Curious George in the car on the way to the center and then lets us poke, prod and push him. I look at his little face, and see a contentment that I so often do not have. Today I saw much of that as we went along through his daily work. Despite the work, he seems to be happy and rested most of the time. I have no excuse for being exhausted (except maybe staying up late to write).
But the word exhaust is right above a word which really does apply to our situation. That word is exhaustive. Exhaustive means comprehensive, thorough, extensive, complete. That is truly what this experience is for us. It is a comprehensive look at what might be possible for the future. Aiden will be thoroughly evaluated and will undergo an extensive physical therapy program. When it is complete we should be able to have an exhaustive plan set for his return home.

As I make my comprehensive plans, I think that the Lord listens, and chuckles to Himself. "Funny girl," He says. "Don't you know that my plans are better than the best thing that you can imagine?" "Just wait and see. I'll surprise you with exactly what you need, exactly when you need it."

This program is just like that. I would never have imagined that it would be this good for Aiden. I think that had we known about it, we would have brought him earlier, but the truth of the matter is that he may not have been ready earlier. Or maybe we would not have been ready earlier. We are seeing Aiden do all sorts of things that he was not doing a week ago; lift himself up and down on his tip toes, cruise around the living room, clap his hands instead of patting his lap when excited, making lots of eye contact, steering his gait trainer, trying to get up on the furniture. To those of you with typical children these things seem rather mundane. For us these accomplishments are steps towards God's exhaustive plan for Aiden, and we are thank God for these little steps.

Thank you all so much for your prayers. I believe that you are a special part in this process.

Praise God for His faithfulness to us. We are grateful for progress. Also for Aiden's toleration of the process. Pray for our continued good health and strength. I also thank you for your continued prayers for Shannon. Pray for sleep!

Blessings to you all,

Christa

PS. Thanks to those of you who have been leaving comments. It really is very encouraging :)

Taking the stairs

2008-10-28T22:15:00.015-04:00

Today we worked on stairs again.

I don't think many of us think

about all of the coordination that is

required to actually keep your body

upright and then to move it forward.

The fact that babies learn to walk so early says something for the amazing creativity that went into humans. Well, today we worked on helping this little creation take another step forward in his quest for more independence.

When you look at the pictures that I've included today you can see the amount of concentration that Aiden puts into his work. His little tongue gets to going and he forgets to swallow (that's a nice way to say that he drools:). But stepping up doesn't just take concentration, it takes preparation. Firstly, Aiden had to get himself up. Shannon had him coming to stand from a platform that was about 6 inches high.

We have been working on patterning over the last week, and today some of that seemed to kick in. Aiden, once his hands were planted (and sometimes held in place) he seemed to understand that he needed to get his feet under him in a deep squat. At that point he was able to push to stand. I make it sound so easy and quick, but sometimes he has to really work to get his feet in place, and often he struggles to get his second foot on the ground. That having been said, once he was up he was ready to step. Hooray for repetition!!

A couple of times today Aiden was ready to step before any of us were ready for him to step. He really wants to move and to be more independent. Dave and I both believe that through the work we're doing now Aiden will be able to achieve some of that independence.

As we worked today, my little man showed great patience and great perserverance. He keeps on most of the time with little to no complaining, and he does so with a sweet spirit. I am really proud of him.

Some day Aiden will be able to stroll down the streets of our hometown, maybe by himself, maybe with his mom on his arm :). Either way, I will look back on this time with fondness. Our experience at Hope Therapy to this point has been wonderful. I feel in many ways like I have come home. That says alot about the quality of the people who are caring for my son. And in many ways they are caring for me, too. What a gift I've been given.

Dave was with us today for therapy, and I believe that he was really surprised at the skills that Aiden has started to grasp. But for him I think the best part was seeing the smiles that lit up Aiden's face. Sometimes they go hand in hand with realizing that he has done what he wants to do; sometimes they come with the cheering that we give him; sometimes it's the pleasure he gets from a good book, but no matter why he flashes them, they melt his dad's heart.

Thank you all for your continued prayers and comments. I really covet them. I believe that we are seeing some of the fruit of that prayer in Aiden's progress. Please continue to pray for stamina and strength; and praise God for His faithfulness in all situations. He is good to us daily. I continue to ask for prayer for Shannon and her family. Good restful sleep is a great need for them. Please pray.

Blessings to all,
Christa

Another Monday at Hope Therapy

2008-10-27T22:41:00.010-04:00

Mondays have the bad reputation of being a real drag. People are always really thankful (TGIF) it's Friday, and as the song says "everybody's working for the week-end". Poor, sad Monday gets a raw deal. It is the start of the new week; the opportunity to do better than you did did before, the quintessential fresh start. This having been said, welcome to Monday (a second Monday) in our marathon PT experience.

Honestly, we did have a hard time starting this morning. Aiden had a couple of bad dreams last night and he was really not ready to get up. He was one sleepy-eyed boy. But per his norm, Aiden, once awakened was a smiley boy. Dave is here so he was able to care for Aaron and Addison, and my mom (pictured in maroon) was able to come. She was really excited to visit and watch Aiden doing his stuff.

We started with our usual routine; heat, massage, stretching and exercises. Today Aiden was using 2.5 lbs. weights with his leg exercises. I am surprised at how quickly he has gotten the hang of using the pulleys. He's a pretty smart guy.

After a snack of "pirate booty" , one of Aiden's favorite snack foods (kinda like white cheddar cheese puffs), Shannon strapped him into the suit. In order to keep him happy when loading him in, I usually read to him. Today, Granma got the chance to do it. Aiden really loves books, especially Maisy books. It's a blessing that he likes to be read to and we're taking advantage of that.

Mom was really astonished at the amount of work that goes into this therapy. During our sessions Aiden is moving most of the time. He may not always be moving his whole body, but some part of him is moving. Today, for instance, he was working on deep kneeling and deep squating to stand. And he didn't do 5 reps or even 10 sometimes he did maybe 15. That's on each leg with the kneeling!!! For those of us over 3 years old, consider doing 30 lunges and 15 or 2o deep knee bends when you haven't exercised forever. All I can say is that my glutes and quads would be screaming! That's just a part of his 3 hour work out (or work over depending on how he's feeling about things).

Once the suit is on Aiden is squeezed and pulled by the bungies. In the bottom picture you can see the pile of bungies that go on the suit. They hold it tightly on and provide resistance for muscles that I can' t work. Mostly, Aiden tolerates the suit pretty well. I am not sure that I would be nearly as cooperative.

As well, I think my mom was surprised by the extrodinary amount of work that Shannon puts in to motivating Aiden. She cheers. She sings. She encourages. She hugs. And she does it with love for both Aiden and for the job that she is obviously called to do.

Thank you all so much for reading today. I hope to hear from you soon. It helps me to know that people are reading and praying. Based on what Shannon has told me the 2nd week is often really hard. The kids are usually tired from the prior week. Please pray that Aiden will

"soar on wings like eagles"; that he will "run and not grow weary"; that he will "walk and not be faint" and that HE will "renew his (Aiden's) strength."
Isaiah 40:31 (modified)
Blessings to all,
Christa

A quiet Sunday

2008-10-26T23:35:00.002-04:00

We are having a very quiet Sunday. No therapy, no exercises, no work. But tomorrow it's back to Hope Therapy for more suit therapy.

Hope to hear from you all soon.
In His care,
Christa

A little light reading for the week end

2008-10-25T23:14:00.006-04:00

I realize that I don't have any therapy news today, but I wanted to fill you in on the way we found out about Richmond Hope Therapy Center. So here it goes.....
In July of this year, Hope Therapy's building burned down. My understanding is that renovations for expanding the center at the original building were almost complete when the fire occurred. It was an accidental fire, but I can only imagine the disappointment that the staff felt when they found out. I am sure that it was heartbreaking for them.
Fortunately, they were able to find a new location that was similar to the size that the old building would have been after the renovations. And they were open for business again in early August. I am sure that the therapists and the clients of the center were thrilled.
So here's where our story begins. Needless to say, the fire provided a lot of publicity for the facility. It was the cover story on a magazine that is published for an area Innsbrook. My brother-in-law Chris works in Innsbrook, and for some reason he had a copy of the magazine. He brought the magazine home and my sister who is a physical therapy assistant saw the cover. I did not see the cover, but I think it had a picture of a little one with a gait trainer (walker) similar to Aiden's ( or the one the little girl on the cover of the brochure is using). Jennifer found the picture interesting, and read the article.
I got a call from Jenn and she told me about the center, the fire, the little girl with the gait trainer and urged me to look into the therapy offered. Neither of us had ever heard of "suit therapy" and to be honest it sounded a little strange. But I love my little guy and so I looked.
I looked at Hope Therapy's web site (http://www.richmondhopetherapy.com/) and found a picture of the same little girl wearing this thing that looked like it was from outer space! (You all have seen Aiden in the suit-it's not what you expect to see.) I also looked at the actual "therasuit"web site, and read their information. I was skeptical, but honestly, Jennifer kept bugging me and so I just called RHTC.
I made an appointment to visit the center in early September. The therapist who I spoke with said that someone could evaluate Aiden and let us know if he was a good candidate for the suit. So we went; Aiden, me and Jennifer. (Ironically, the center is 10 minutes from my parents' home in Richmond.)
Shannon did the evaluation and really put me at ease. She was knowledgeable, kind and encouraging. Before we left Shannon gave me some advice concerning community organizations that could help us help Aiden. Then she said something that really surprised me, "Even if you decide not to come here for therapy, please don't hesitate to call if you need help getting benefits for Aiden."
Okay, that may not seem like a big deal to anyone else, but since Aiden aged out of his community program I had been flailling around like I was drowning. I guess I really felt like she cared, not because we might come to the center, but because she knew what I was going through and wanted to help. (As I type this, I'm tearing up.) I felt like someone had thrown me a lifeline.
Jennifer and I discussed the visit on the way home, and then again with my folks and Dave. It was not a decision that we could make immediately. The intensive therapy is very expensive so money had to be available. In order for our insurance to reimburse anything, therapy had to be completed before the end of the year. Finally, we had to work out a plan for Aaron and Addison.
I prayed alot. I am not one to jump too fast. And honestly, I know how people look at parents of children with disabilities. If you choose to do something that is remotely outside the parameters of traditional medicine or therapy, they think that you are desparate. Maybe I am a little. But my time with the Lord yeilded a "go".
After our vacation at the end of September, I called to schedule Aiden's first intensive therapy session. Despite the center being one therapist down (labor and delivery), they were able to fit us in before the end of the year. The Hope Foundation is providing us with a scholarship towards our tuition. My parents have been able to care for Aaron and Addison during treatment, and house all of us. Our insurance will reemburse some of the cost of the treatment. And God provided the finances for this adventure in a the form of a pay out for some stocks that Dave had from Massenutten!!
I know that this has seemed like a long drawn out explanation, but I truly feel that God has had His hand on this whole endeavor. Don't get me wrong, I don't think the center burned down just so Jennifer would see that article. What I do mean is that I know the God of the universe used a seemingly bad situation to bring us (and maybe other families) to this place. We had to be willing to go; to follow His lead, but there is peace in obedience.
I had been praying for God's direction; for Him to show me (actually, I believe that I really wanted Him to answer me out loud!!) what to do for Aiden. My mother's heart was crying out for some small sign of hope. For right now, that has been provided. In this moment I know that I am right where the Lord wants me; in the palm of His hand.
Thank you all for reading this epistle. I wanted you to know that we are not in a place of desparation in our lives. Quite the contrary, we are "standing on the promises of God".
Your prayers are such a blessing. Please continue. And if you can, thank Him for His faithfulness to us and to all of His children.

Blessings to all of you,
Christa
PS. If you are interested in more information on RHTC you can find them on the web
at http://www.richmondhopetherapycenter.com/ Please comment if you read-the settings are changed so you don't need a gmail account!! :)

We've done the first week, yeah!!!

2008-10-24T22:51:00.017-04:00

Aiden is learning to climb stairs! Most parents are concerned when their babies start climbing, but not me. Today I was ecstatic to see Aiden going up and down in the therapy room. It was a beautiful thing to see.

The pictures don't do justice to the amount of hard work that little guy did today. Not to mention the hard work

Shannon put in to get

Aiden firstly to a point

where his body understands better what to do, and secondly, the work she put in to get him to put it into action. I am exhausted at the end of our 3 hour session. Shannon does this every day. I will continue to be amazed by her energy and ability to get the best out of my son.

By now you all realize that we did not start out taking the stairs. We changed it up a little today and after the heat and massage, Aiden practiced his bouncing. He is belted into a harness and attached to the therapy cage (I'm sure that's not

the correct term for it , but I do my best) with really long bungee cords. These allow him to bend and bounce to strengthen his legs and hips. Aiden did kneeling to stand (kind of like lunges for us grown ups) over and over so that this action will become a pattern that his body remembers.

He also bounced with the trampoline under him. Despite some resistance he is really starting to get the knee bending thing.

I am encouraged today by Aiden's progress. He is not resisting the therapy and seems at times happy to be able to do more independently. At home we are noticing that he is more vocal and more animated. He is clapping his hands together instead of patting his legs when he is excited. He is even trying his luck with climbing on furniture. For some this last would cause much concern, but for us it means that Aiden is learning to balance on one foot while lifting the opposite knee onto the cushion.

I thought that I was doing pretty well learning to "be content in all circumstances", but I am being taught that I can find contentment in the really small things. Even something as seemingly insignificant as learning to bounce can bring excitement into my heart. I can be content with the quality of work that we've done this week. I don't want anyone to think that I am through with learning this concept, but this first week at Hope Therapy Center has helped me to see just how blessed I am.

Thank you all for your prayers. I would continue to ask you to pray for Aiden's progress. The second week of therapy is often the most difficult because of the rigorous schedule and fatigue from the first week. Please also praise the Lord for His faithfulness in allowing us to have such a successful first week. I miss home and look forward to seeing all of you upon our return in November.

In the love of the Lord,

Christa

PS. Since I can't figure out how to line up pictures and captions I'll let you know that the last picture is of Aiden having snack today. So it's not all hard work, we do take some time for eating and reading a good book or two. :)

Our first Thursday at Hope Therapy

2008-10-23T22:46:00.000-04:00

This is a happy boy in a therasuit!

When we started our therapy this week I didn't know what to expect; Would the staff work well with Aiden? Would he adapt well to the rigorous schedule? Would he benefit from this therapy
program? It was with trepidation that we walked through the doors on Monday. Today, I have a different view of the whole process. I am amazed at the way Shannan our therapist works
with Aiden. I am amazed by the lengths to which the staff is

willing to go to in order to get the best out of Aiden. Finally, I am amazed at Aiden's ability to persevere through what for some of us would be an overwhelming physical routine. He truly is my hero.

We started our day with Aiden doing some knee walking and walking independently. Shannon used the time to video his movements for evaluation. So today Aiden started his day at the center as the movie star. (I knew he was a star all along.) This was followed by "the routine" (heat,

massage, gym exercises) and the superman swing. Aiden is working on strengthening his arms and upper body strength (in the picture to the left of this paragraph). It will help him in all of his mobility issues and I believe in the long run it may also help to improve his fine motor skills and maybe even some language issues. You don't really think about how interconnected our bodies are until they don't work right. Who knew that having good muscle tone in your trunk would effect your intestinal track, but when you think about it, it makes sense. (I'm glad the job of creating the human body wasn't mine!!)

All in all it was another good day. Aiden worked hard. He is beginning to really understand what muscle movements are expected from him. He still needs the prompts and honestly it seems to depend on the day as to whether or not it's the glutey or the quad or the hip flexor that he doesn't want to work. But, hey, he's three. He's suppose to start making some decisions for himself, right?

I am proud of my little boy. He is a sweet, dear child. Yes, he is different than most three year olds, but I am deciding to look at him as an individual and I am not going to compare him to anyone else. This is sometimes a challenge for me. When I was pregnant with Aiden 2 very good friends were also pregnant at the same time. We all delivered within a week of each other. (Aiden was first.) I see these other children either in photos or in person and I cannot help myself. I think of them walking, talking, running. I compare. But this is going to stop. Aiden is Aiden. He is a blessing that I could never have imagined that I needed. The Lord has chosen me to be his mom and He has chosen Aiden to be the softening agent for my heart; the builder of my character, and the one who I believe will teach me about true joy.

For those of you who are praying, continue to pray for Aiden's stamina, his perserverance and his progress. As well, pray for all parents. It is a really hard job. We all need the help.

Thanks,
Christa
PS. Continue to pray for Shannon and her family. She really appreciates it (she told me so!) Also, if any of you are interested, I would love to know that you've been reading (or just looking at the pictures). Please use the comment option. Thanks.

What a great day!

2008-10-22T22:19:00.000-04:00

Here we are again, and what a good day we had today. Aiden really turned on his little motor! I tell you, it was like night and day compared with Monday's experience in the therasuit. I was, to be quite honest with you, astonished.

For those of you who don't know me very well, I have difficulties with time management, so when I realized that I had to drop both Aaron and Addison off at different locations. I was afraid that I would be really late to the center. Surprisingly, and through God's grace, EVERYONE was on time. Actually, Aiden was early for his session (only by 5 minutes, but I take victories as they come). This started the day off on a really positive note.

After the routine; heat, massage, exercises with weights, and the superman swing, Aiden and I both took a snack break in preparation for the suit. As I read Aiden a book, Shannon started fitting him into the suit. He was ready to go before he realized what was going on. What a blessing; no screaming or crying. It seems that the shoes really were the issue. I was able to get a pair exactly like the ones you see him wearing in the picture to the right. I cut slits on either side of the heel so that his orthotics (SMOs) would just slip in. It really seemed to do the trick.

So, today not only did Aiden he use his gait trainer, walk on a tred mill, and walk independently, but he took his first shot at riding a tricycle!!! And he did it with a smile on his little face.

I cannot express the feelings that this day has birthed in me. Friends, I guess I never thought that I would see a day when my child, who can't walk independently, was on a trike. Imagine your greatest wish for someone who love, and believing that it would be just that, a wish; one you didn't think would come true. This is how I felt before today. My visions for Aiden were limited by his limitations. (Wow, that is a hard thing for this mom to admit.) My vision should only be limited by God's ability to complete a good work in Aiden.

In reality, I was not only limiting Aiden, I was limiting God. Yes, I put God in a box and I stuck Aiden (and his future) in there with Him. How easy it is to underestimate the Lord because of our own limited vision. Continue to pray that I learn to know what I know: God is good and wants good things for His children; as well, the Lord holds Aiden (and me) in His hands. What a good place to be. Also, our therapist, Shannon, is in need of uplifting prayer. Please remember her. God knows her need.

Thank you all so much,

Christa,

PS. What you see in the pictures is as follows: Aiden on a tricycle!!!Yeah! A view of his shoes attached to the therasuit, and lastly, some of his independent stepping. BYE:)

Two down and three more this week

2008-10-21T22:48:00.000-04:00

Greetings from Richmond,
I'd say "another day another dollar", but the reality is that no one could afford to pay me to do what I do. My current job, Aiden's PT coach, is exciting, exhausting and challenging all at the same time. What other job provides you with all of the above, and the hugs and (sloppy) kisses of one such adorable little guy? Daily, I am amazed at the obstacles that my little one approaches with joy. Sometimes he overcomes sometimes he doesn't but there are few that he won't atleast try.
Today was no different. We arrived at the center at 9:45am ready to get going. (Actually, Aiden was ready to go; I on the other hand was feeling a little bit under the weather. I have a sinus infection, but saw a dr. tonight and got an Rx.) Miss Shannon met us and Aiden got to relax with some heat on his little legs; followed by a foot and leg massage. Sounds nice, huh?
The routine seems to be : heat, massage, gym-type leg exercises and then the superman swing. Aiden did really well with the exercises. He's learning the routine - up, kick, down - pretty quickly and responding to some of the verbal commands. He does seem to have an ornery left glutiusmaximus (known at the center as a "glutey"). Aiden does not want to use that little muscle despite the poking that he gets in his little behind! The superman swing went really well today. He was able to keep his head up for 5-10 seconds at a time. I'm prety sure that this was because of his pt tech helper today. She is a pretty blonde. (My son really loves blondes:) )
Suit therapy went much better today. It is obvious to both me and to Shannon that Aiden's issues yesterday stem directly from the shoes. I am not sure whether or not it is the pressure that is required to get his feet into the shoes, or if it is a feeling of being squeezed in the shoes, but he just was beside himself yesterday. Today we strapped him in with his sandals on, and despite a little complaining at the very beginning, there was no screaming. It was quite a relief.
For those of you who continue to pray for us as we embark on this journey, thank you. I believe that you were a part of the "mercies that are new every morning". I really didn't think that I was going to be successful in getting up. I continue to learn. Today, it was something small, a thought about a friend and brother in Christ who has gone to be with the Lord. I remembered floating with him and his sister in a lake in Maine. I remembered the beautiful day, the cool water, the way the balsa fir smelled in the heat. And I remembered that he took each day as it came, appreciating the gifts of the day. I am remembering right now the gifts of this day, and you all are in my thoughts.

Thank you,
Christa

PS. I'm just learning to use the picture thinggie, so the blog looks a little off balance. I'll work on it! :)

Our first day at Hope Therapy

2008-10-20T20:36:00.000-04:00

Hello all,
Our first day at Hope Therapy was relatively exciting. Aiden realy put on the charm for the ladies at the center. His therapist Shannon seems to connect well with him and she was given more than one of Aiden's sparkley smiles. Shannon seems to love her job and the children that she works with.
Aiden started his session today with a full evaluation. His flexibility and joint mobility were checked along with strength levels in his extremities. Although these were not the easiest activities for him to accomplish, Aiden completed the exercises with good humor.
When the evaluation was completed we got out Aiden's gate trainer (a modified orthopedic pediatric walker). He absolutely loves to cruise around. It's funny to watch him go. The look on his face as he takes off is priceless. (It is obvious to both Dave and me that Aiden so wants to go independently. )
Aiden was worked out on a resistance machine. You know those gym machines that work your aductors and abductors, well, they have one just for the little ones. He also got to "fly" today. They use a pulley and rope system with harnesses that suspend Aiden. Let me tell you, hanging from the harnesses really make you hold your head up. I don't think that I realized that his neck and shoulders were quite so weak, but honestly, I don't know if I could hold my big old noggin' up for very long in this fashion either. We will hope that by the time we're through he'll look like superman in the harness.
After about 2 hours of work, Aiden took a break and had a snack. It 's really important to keep him fed during the sessions because he's working so hard. Just so you know, the first 2 hours were the easy part. Once he snacked it was time for the "therasuit". (I won't try to describe it at this time, but I will post pictures tomorrow. ) It is rather binding, and the shoes are tight and uncomfortable, pair that with exhaustion, and you reach maximum overload. The last 40 minutes were difficult at best. That having been said, he still tolerated it.
It was difficult to sit and watch my little one scream and look at me for help. I left the center with a huge headache, and a completely exhausted baby. (Once we took him out of the bouncing harness he fell asleep in less than 30 seconds---no exaggeration!!!)
Please continue to pray that we are in right place and pray for our stamina in therapy. More tomorrow. Thanks for reading. -Christa

PS. I realized after naming this blog how truly appropriate it is..... I am learning to walk daily just like Aiden. My journey is moving me closer and closer to becoming the woman, wife and mother that the Lord desires for me to be. So, your prayers are not only sustaining us as we complete therapy daily, but are also sustaining me in my walk with the Lord. Thank you.