We have the results...

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!!

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

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!!

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

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

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

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