Saturday, September 27, 2008

Our Little Miracle

The story starts that we adopted this little girl from Ukraine, and decided that we needed to plan that her disability would never change. We decided this because after adopting our oldest daughter, Swimmer Girl, we dealt with the grief of realizing that her disability would never change. It was extremely painful, and neither of us wanted to face that kind of disappointment again.

Realize, of course, that once we got past that grief, Swimmer Girl has been a great joy. How can you be nothing but proud of a child who so gracefully and faithfully rises above such severe physical disabilities? I often think of her like a modern-day Elijah, when he, by the power of the Holy Spirit, ran faster than King Ahab's chariot. How does she do it? How does she swim like she does? How does she walk? How does she play the piano so beautifully?  How does handle papers and books and opening packages?  How does she manage to carry so many things?

Still, that grief of dealing with the finality of her situation was something I just didn't want to face again. So, we went into Nappy's adoption with the mindset that she was not going to change. Once we got her home, three different doctors agreed with us. We were okay with that because we had seen how God's Glory was revealed through Swimmer Girl's life, and it was really really good.

So, we became comfortable with life as it was presenting itself. Then a doctor ordered a 350lb powerchair that we just simply couldn't accommodate in our lives, and began to push us to put her into therapeutic preschool 5 days a week. None of it made any sense to us. People were jumping the gun, telling us that she couldn't do things that she had never even tried to do. Why would we take on the financial burden (which was huge) of this chair, and rearrange her life and our family life around her disability when no one had even bothered to see what she could do?

So, we bought a manual chair off of eBay for $100. It was the wrong size, way too big, and yet, she was wheeling around in it on her own from the first evening we had it.  I guess she had no clue that she couldn't operate a manual chair. 

It was then we began to realize that maybe there was more than one way for God to reveal His Glory in the life of a person with a disability. So, we ditched the therapists that were offering adaptive devices, therapeutic preschool and other stuff and started pushing for therapies and interventions that would actually make a physical difference in her life. We found a doctor that would accommodate us.

Several months ago, that doctor ordered Nappy's first round of serial casting to stretch her legs straight. We had botox injections done in her right thigh to weaken the constricting muscles and then 3 weeks later started the therapy. Our doctor warned us that Nappy needed to gain over 60-degrees of flexibility in each leg to walk, and that that was really out of the question. The most gained in one round of serial casting recorded was 30-degrees. About 15-degrees was much more typical. She doubted, because of the tightness, that we could gain even that.

We began the process of serial casting. Every 1-2 weeks her leg was stretched a bit more and a new cast was placed on it to stretch the muscles and release the joints. Each week, the therapist would record the changes, and it was like watching a slow motion miracle. After 7 weeks, Nappy had gained almost 70 degrees of flexibility in that knee!

At the same time we were working on her leg, God sent us the perfect occupational therapist.  From the start, she said that she believed that Nappy needed to gain more flexibility in her shoulders, elbows and wrists in order to achieve the goals that we had for her-- goals of putting on her own shirt, buttoning and zipping jackets and drinking from cups without straws.  Those may seem small, but try to do all those things without bending your arms.  

So, we took measurements of her flexibility in those joints and then began the therapy.  I won't bore you with details, but will just say that in the course of this therapy, we've seen our second slow motion miracle.  Her rehab doctor claims that Nappy has gained more flexibility in her arms than she had hoped she could after a couple rounds of botox and serial casting!

In fact, her doctor said that there is only one word to describe the changes in Nappy's body.  One word she doesn't use lightly:  miracle.

We really are witnessing a miracle.

As of now, it really looks like our little girl is going to walk.   And, while we have medical science to thank for it's help, even the doctor knows that this is happening by the hand of God.

In the past month I've really tried to process what we're watching.  I have always believed in miracles, but have never actually witnessed one.  What has overwhelmed me in these past few months is this:  God loves me enough to allow me to witness this miracle.  Watching His healing hand change these joints is the most incredible thing I've ever seen in my entire life -- so much more valuable than any thing this world can offer.   I feel like a little kid who's parents have just given me a gift that I wanted so desperately but was afraid to ask for because it was so lavish and immense. 

Through out this process, as I've prayed with Nappy, we've talked about what God is doing.  Before she'd tell me, "I'll walk in heaven."  Now she'll tell me, "I'll walk in this room.  I'll walk on oaf (earth!)".  Then I'll tell her, "It sure does look like you will walk on earth, but even if you don't....

And, she'll finish it for me, "GOD IS GOOD!"  


Mrs. C said...

God truly is good. I am having a hard time remembering that because more and more, it's becoming obvious to me that J is probably more than mildly autistic. And I feel I can't do ONE. MORE. THING. than I am already doing.

But I never want to sell him short and say well, he will be severely affected forever. I sure hope your little brave girl is able to walk on oaf. What a wonderful testimony to God providing for all your needs.

Anita Ann said...

What a powerful testimony.The Lord is am amazing. It is sad though when others offer up defeat to us and it enters our hearts. I have an Autistic son, he is now high functioning and we prayed and did what we thought best, and still do. He is six, in 1st/2nd grade and is doing awesome. We homechool our kids.

val said...

Thank you for reminding me of what God has done and continues to do for my 9yr old daughter with arthrogryposis. With occasional trouble with friends at school, and feeling a little left out when eveyone is involved in sports, I sometimes start feeling sorry for her. But she is SO amazing! She has a relationship with God that is so incredible. She is so loving and compassionate.

When Mattie was born her pediatritian told us not to limit HER by what OTHERS could or could not do.

Thank you for being a devoted, christian, driven, undaunted, relentless mom for your kids.

Jenny, Doug and Lanie said...

I sit here with goosebumps as I read what God has done in your lives! There are many people who walk thoughout this world and never see a miracle, what a blessing to see this miracle each and every day. Thank you Jesus for the world can be in wonder we know that it is only through you that these miracles can happen!
Thank you for sharing this wonderful story and I will pray for you and your wonderful family.
Thank you God for your blessings as they continue to overflow.
Miss you,
Jenny Burwell

Jenny, Doug and Lanie said...

Hi Debbie,
I have goosebumps after reading your wonderful blog. Thank you Holy Spirit as your miracles overflow for this family. There are many who walk through this world who NEVER see a miracle and through God's love you wake to one each and everyday.
You are an excellent mom and a great example of a woman who follows the Lord. Thank you for sharing this joyous news.
I will pray for your family and can't wait to see you soon.
All of our love,
The Burwells

screamofcontinuousness said...

What an amazing little girl you have. God is so good to let you into the lions den to witness the actual act of the angel shutting the mouths of the lions.