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!"  

More Thoughts on the Healings

I was thinking, again, about the miraculous healings found in the New Testament. The Lord has certainly changed my perspective on many things over the years, but my perspective on the healings are going through a most radical change. Perhaps other people have always had this all figured out, but I haven't (I've been too busy figuring out how to solve America's problems, I guess...).

Anyway, the healings have always been presented to me as acts of Jesus kindness and compassion. Teachers would point out that Jesus would choose to give his time to the "the crippled, the sick and those 'tormented by evil spirits' ". "Tormented by evil spirits" could mean almost anything depending upon whatever church I happened to be sitting in. To some it meant demon possession, to some it meant being tormented by illness and to yet others it meant mental illness. To me it shows that the concept of grouping all disabled people into one big "group" rather than seeing them as individuals with very unique needs can be seen even in ancient times.

The teaching tends to focus on the fact that Jesus was always willing to give his time to the "least of these", to the outcast, the people who no one valued. The thought being that if Jesus was willing to love even them, then certainly he would love me. Before my days as a mother of special needs children, that explanation was enough for me. Jesus did seek out the broken, there certainly is truth and insight in that interpretation.

However, once I became a Mom, I realized that there are some concerns with that interpretation. It began when I started reading children's literature about disabilities. I noticed a subtle attitude that would often come through the text: we should have compassion on them.

I freely admit that I am a curmudgeon, and that I often read through things looking for unspoken attitudes and cheap imitations of the truth. However, take, for instance, one children's book I read where a child and grandpa go to the zoo for the day. While out, they don't just look at the animals, they also look at a myriad of people with disabilities. "Look a monkey! Hey, Look at deaf girl!"

Albeit that was a wee bit of hyperbole, the feel of the book was simply that. The perspective it was written from was a "us looking at them". Even at the end of the book the kid writes a letter to a disabled kid saying, "I know your just like everybody else." Of course, if that's so true, then why did he have to write and tell her in the first place?

It's all so pedantic.

I started to think, "How would I feel to be the subject of a book like that?" "How would I like it to be labeled 'the person we're supposed to have compassion on.' "

Maybe it's just pride... but maybe something is there. As a child, how would I feel if someone wrote me a letter saying, "Really, I believe you're just like everybody else?" Well, I would be pretty concerned as to why a person would feel the need to say that to me.

So, does this apply to the miracles? I think so, because maybe, just maybe, the only point wasn't that Jesus was just compassionate, but that Jesus understood the value of people with disabilities, and that those who have a disability don't have to be on the margins of society. With Jesus there wasn't a "we" and "them." He didn't need to tell disabled people "you're just like everybody else." He knows it and He knows they know it.


Think, again, to the story of the man by the pool of Bethesda. Jesus asked him if he wanted to be healed. Our presumption is, of course, that he would want to be healed. The most common explanation I've heard for that question is that Jesus is asking him because maybe "he wants to be disabled, he wants to have an excuse for not working." But, perhaps Jesus knew that not every disabled person desires healing.

"Do you want healed?"

There's an option. Jesus understood that abundant life was available to the man whether or not his body was healed. Perhaps one of the points is that either way it's okay. It's okay for a person with a disability to want healing, and it's okay for a person with a disability to not want healing. It's a message of reassurance to disabled people. At the same time, it's a message of perspective for those of us who don't have a disability: don't presume just because someone has a disability that they wish they didn't have it.

Give compassion where compassion is due. Give respect where respect is due.