A rainy day in Richmond

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

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

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

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

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!

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

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

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

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!!!

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!

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!

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

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

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