The Wheelchair Saga, An End in Sight!

If I were to have one piece of advice to give to any parent, whether parenting a special needs child or not, it would be this: If you believe, deep in your heart, that what the experts are telling you is wrong, you need to listen to your heart.

When we first started looking into getting "medical" help for Nappy, our youngest daughter who happens to have arthrogryposis in all her limbs, we were steered in the wrong direction. I'm not blaming the doctor, at least not completely, and I'm not blaming the system. Neither is perfect, so in the end, you need to rely on the Holy Spirit to lead you down the right path.

About this time last year, a doctor who had only spent about 1/2 an hour looking at our daughter's arms and legs, made the decision that she would not be able to work a manual chair, and therefore, in order to "keep up" with her peers, needed a powerchair.

This doctor had no idea how this would impact our family.

First of all, it would mean changes to our van. If we wanted to cart the chair inside the van (which is what the salesman told us we would need to do), it would require purchasing a new vehicle. To transport our family of 7, would require a 15 seater van. Then the van would have to be customized to the lift/tie-ins. The estimates for that were anywhere from $15,000 to $65,000.

Then we learned that we could cart the 350lb wheelchair on the back of our van. A lift and installation would be anywhere from $1,500 to $10,000, depending upon who you talked to.

Then, there was the question of where she'd use this 350lb behemouth. It wouldn't work at home (not safe for the other children or toys), and she couldn't use it in a her Sunday School class or Co-op class -- again, for safety. She would need direct supervision, so she couldn't play with it outside unless I was with her. So, again, when would she use this chair? In therapuetic preschool. That would mean she, who only just joined a family one year ago, would be separated from us about 40+ hours a week (including transportation).

There was the cost of the chair, too, a $3000 co-pay (in addition to all the house and van work). So, this chair would have easily put our family anywhere from $5000 to $85,000 into debt.

What would that mean for our children? A total lifestyle change. Gone would be the days of relaxed homeschooling, time with mom and dad and opportunities to pursue their talents and interests. To pay off all the debt, I would have to go back to work full time, and, chances are, one of us would have to work a second job.

What would all that mean for their relationships? Certainly there would be resentment on that part of the other children -- they lost their beautiful childhoods because of a wheelchair. It would also teach Nappy that our family revolves around her needs. There's a great lesson.

Long term, what would that have meant for Nappy? Well, she would've never learned that she could work a manual chair. She would have never learned that she could climb into and out of a manual chair. She wouldn't be able to climb steps. She wouldn't have such a strong cardiovascular system. She would think that her enviornment must always be adapted to her, rather than she conquering her enviornment.

Now, if she wasn't able to work a manual chair this would all be different. For someone who's not able, a power chair is a liberating and beautiful thing, and I am so thankful that they have been invented!!! But the thing that was crazy is that no one checked to see if she could, it was just assumed she couldn't. The number one cardinal rule of working with the disabled was broken: NEVER ASSUME THAT A PERSON WITH A DISABLITY CAN'T DO SOMETHING!

So, now here we are a year later, and I have been proclaimed "right." Several days ago we ordered her a manual chair, under the direction of her doctor and a PT, that is fitted perfectly to maximize the workings of her unique body. Through out the entire wheelchair evaluation, the same people who, before, were telling me that I was in denial over her disabilities, that I was holding her back, that I was denying her the chance to keep up with other kids, were now telling me that I was "right." "This is the best situation for her." "Working the wheelchair will help with building the muscles that might help her to walk."

So, all of this is not to say that I'm really smart, or the doctors are really dumb (the vast majority of arthrogryposis patients cannot work a manual chair), but to just say that the Holy Spirit can convict and encourage you to see what the experts can't. Through this entire year, I had a weight on my back about the power chair. I knew it wasn't right for her. I knew it wasn't right for our family. It stunk to disagree with the experts. It really did. I had my ability to parent her questioned, and I'm sure, behind my back, my sanity questioned. But, I really believe God used his spirit to convict me that I needed to listen to Him and to do the unusual, and I'm so thankful that I did.

Ultimately, as parents, you're responsible for your child's development. The doctors and therapists can guide and direct, but they only get a small snapshot of your child's life. It's up to you to advocate, to follow God's lead, and to stand up for what you know your child needs.

In the end, our daughter has no clue of all the controversy that's surrounded her. She is, however, really happy that her new wheelchair will be purple with blue and silver accents and front wheels that light up.

Karen McCarron

As I write this blog today, my five year old daughter is quietly sitting on the floor sewing pretend dresses onto a wooden bear. Her work is occasionally interrupted by some whispered singing and pretend conversation between the bear and his "little pet lizard" sitting next to her. Her missing fingers and arm bones never even cross her mind, or mine for that matter. It's all peaceful, and I just can't understand how it can be any different. Yet, for many parents it is.

Several days ago a friend forwarded me an email that was disquieting to me in a way that probably no one else noticed. The family was begging for help from anyone who could advise them. Their daughter had been born with the same leg condition as our oldest daughter (although not as severe as what we deal with), and their insurance had denied their claim for a surgical fix. The insurance problem aside, what stood out to me as a problem was the perspective of the parents. For some reason, they were sure that their daughter's life was over if she didn't have this problem "fixed". Her only hope in life was to be made "normal", as though having something physically different or out-of-whack would mean that life had no value. Where did this idea come from? Who told them this lie in such a believable way?

And yet, today, I saw the same idea again. Karen McCarron "fixed" her autistic 3-year-old daughter, Katie, by suffocating her to death in a plastic bag. By taking her life, McCarron stated that she was sending her daughter to heaven in order for her to finally be complete and whole. Obviously she didn't understand that none of us here on earth are complete and whole, but all of us have a purpose here. The defense argued that she was depressed and insane at the time of the murder. I would argue that this former doctor had become so caught up in what could be done to 'remedy' her daughter that she never took the time to find the eternal qualities there that reflected the glory of God. That's enough to depress anybody (although few would take it to the extreme she has).

Then, not much later, I received a letter from a friend of mine overseas. Our family had been praying for a boy in an orphanage there, and she wrote about him in the letter. We had prayed for a family to adopt him, and the story turned out to be that his birth family came for him. What was sad, though, was that he was ever separated from them in the first place.

This little boy was born missing his fingers, and fairly severely near sighted. For some reason, his birth parents thought he was dead. I can only assume that the doctors at his birth predicted such a grim future that they never believed he would live, and they turned him over to the state, believing they were unable to handle his medical issues.

However, as the lawyer for his orphanage began to work on his paperwork to free him for adoption, they made one last contact with his birth family. They were shocked to learn that he was alive and well, and came to see him. Now he is a happy healthy kindergartner whose disabilities are but a little bump in the road.

Then I think about my beautiful daughter who's quietly playing next to me. She was tagged with so many problems: heart problems, hand problems, developmental problems, depression (even though she was an infant!). Now she's a happy, healthy and silly 5 year old girl.

So, I ask myself again, how does this happen? How does a being that was made in the image of God, a being that reflects his eternal goodness , come to be seen as something so bleak? The only answer I can come up with is that too many people have listened to the Father of Lies. Satan can whisper the negative and we believe it so readily, and so quickly.

To quote Helen Keller, "It is a terrible thing to see and have no vision."

I've begun to believe that humanity no longer has a vision.

Be Careful When God Kisses Your Hand

Public life can be very interesting when one of your children is missing body parts that people don't think can possibly be missing. Quickly we learned with our oldest daughter that questions and comments would arise, and, thankfully, we had 6 months or so to fumble through our answers as she was still learning English.

There were, of course, rude and insensitive questions. Those, thankfully, have died out, and I can only assume that as she grew older and more out spoken people became ashamed to ask such questions. However, there's one assumption that continues to drive me nuts, and that is the assumption that because I am a Christian I believe that "God made" my girls "that way."

First of all, I might ask, what exactly is "that way"? Of course, people debate over how much of our bodies are currently personalized design and how much is part of the greater design pattern that God set in motion when he created life. But even if you subscribe to the idea that God is personally designing each and every individual at the point of conception, then doesn't "that way" seem somewhat derogatory?

In addition to that, if I believe that life begins at conception, then how is a disability that forms after conception different than something that happens to a person's body after birth? And if I believe, in my far-out radical thinking, that my children existed in the eternal before their genetic material came into being then wouldn't any genetic disabilities, once again, be something that happened after creation?

There was a woman whom I "met" on an e-list who had a daughter with cleft hands -- hands that are missing three fingers with the remaining two forming a "v" shape. She loved to talk about how she would tell her daughter how special she was because God made her hands so special. That in itself bothers me because I don't like defining my girls life and purpose by their disabilities. But, she went even further. Those clefts were where God kissed her hands.

Okay, so did He nibble the fingers off when he kissed? Eek. I don't want him kissing me if that's the case! Or perhaps on the grand reunion day I should ask if he's eaten lunch before allowing myself a hug and kiss.

Another one that drives me nuts is when well meaning people tell my daughter that "God needed her arm in heaven." Was there something He couldn't reach on a really high shelf? Did He lose His? And, if so, wouldn't it have been better if He kept the arm of a really tall guy with long arms rather than a little girl? Considering the vast number of people missing various limbs, if you follow that thinking, then He's got himself quite a collection up there.

It amazes people, but we tell our daughters they have different bodies because, well, sometimes that happens.

Sometimes people are born with 1 arm
Sometimes people are born with two different length legs.
Sometimes people are born with 4 fingers and missing radial bones.
Sometimes people are born with arthrogryposis.
Sometimes people are born bald (but not my kids).
Sometimes people are born with blue eyes.
Sometimes people are born ornery (not naming any names).

It just happens. What you're born with or without is neither good nor bad, it's just simply the way it is. God allowed them to be born with the disabilities they have, yes, but he didn't create those disabilities. He's far too good to purposefully strike any innocent child with something that is such a great loss. But He didn't just stop with allowing the disabilities, He allowed them so He could use them to make something beautiful and good. So, now where people saw a thorn bush, a sweet myrtle tree will grow.

God did knit together our daughters in their birth mothers' wombs. He knit their delicate minds, their inquisitive thoughts, their insights, their humor, their gifts and talents. He created beautiful beings that were designed to glorify Him, then he placed them into a creation that was long ago corrupted by sin. That sin began to effect their lives before they were ever born. And, the pain from the corruption didn't stop with birth, it was compounded when they were abandoned and placed in state-run orphanages.

But then God redeemed what the corrupted creation had done to them and made it beautiful. He sent loving caregivers who prayed for them, and saw the eternal value He had created in them. Then He called us to be their parents and to nurture and love that eternal value until that, not the disability, began to show. In what was a beautiful act of creation, He turned those disabilities into monuments of His Glory, differences that they can be proud to display.

I just don't want to short-change my girls on the truth, because the truth is just so good, so much better than answering them with some kind of Hallmark sentiment that doesn't even begin to address the deeper questions.

In the book "Disabling America", author Greg Perry, born, inexplicably, with "a total of 3 fingers and 1 leg", describes his conversion to Christianity and his view of his handicap:

"Growing up, I was churched but never saved which is somewhat like going to public school but never getting an education. One night I accepted Jesus Christ as my personal Savior. What a waste my life would've been without Him: full of success on earth, overcoming perceived odds, all to be counted as loss in the end. When the children of fellow Christians ask me why my hands are the way they are, their parents tell them, "That's the way God made him." I gently correct those adults and say, "Actually, it's due to man's sin that these kinds of problems exist, but someday I'll have a new body." (That's a promise hat no governmental regulation can provide, especially those that offer people false salvation like the ADA)."

Now that's hope, and hope is much better, in my ever-humble (not!) opinion, than sentimentality.


Isaiah 61:3

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.
They will be called oaks of righteousness,
a planting of the LORD
for the display of his splendor.

Rise Up and Walk!

The first time I ever really contemplated talking to our youngest daughter about her legs was when I was sitting in a crowded waiting area of the London Heathrow Airport, on my second trip to Ukraine in order to adopt her. All of a sudden, it hit me like a brick: Someday I am going to have to explain to her that she isn't going to walk like other children.

I tried to imagine what that would be like, and it filled me with so much sadness that I began to cry. People probably thought I was either mad a my husband, or upset I missed a flight. Or perhaps a bit miffed at the prices atHeathrow's duty-free shops. But whatever people thought, the reality of her disability hit me right then.

The thing is, that we've been through some similar things with our older daughters. It takes time for them to understand that their bodies are different. For instance, our middle daughter had been home for over 2 years, and was over 4 years old (and just really starting to learn how to count) when she made a mighty announcement at the dinner table.

"Oh my! ******* has only got 1 arm! There's only one, not two!"

We all just looked at her like she was a bit loopy.

"So," our oldest daughter replied nonchalantly, "It took you this long to figure it out, huh?"

Even with our oldest, we watched her go through the phases: thinking she would grow an arm, thinking that all children were born with a big leg and a little leg and that her little leg would start to grow at some point. She had even had the misunderstanding that we had an arm waiting for her at home when she left the orphanage. It's really hard to watch as they process the loss, especially as they don't begin to think of it in terms of a loss until they're older. Then, mix in the fact that it isn't a total loss because there is so much good that God redeems from disabilities, that in some facets it's actually a blessing, and it's just a lot for one little mind to process.

But what I should have remembered when I was in Heathrow Airport was that I didn't' know the future. I only have an understanding of what's happening now. In fact, according to I Corinthians 13, I only have a dim understanding of now, not even complete. So, there's no point in worrying how things will play out, when they never play out how you expect them to.

Take, for instance, our oldest daughter. From birth, it was expected she would never walk. She was born with absolutely no hip on her right side, a twisted hip on her left, no femur (thigh bone) on the right, and no fibulas (the smaller shin bone) in either leg. She's also missing a myriad of other bones that I won't bore you with, but suffice it to say, there was enough missing that she would never walk. She was also in a place where there was no medical intervention or therapy for her at all.

She was, however, in an orphanage where she was loved. The ladies who cared for her loved her, prayed for her, and decided that her best chance in life was to learn to adapt to herenvironment . So, they taught her, and she learned to do everything her peers did -- except to walk. Then one spring, only a couple months before we met her, her orphanage began preparations for the Easter program. She was told that she could sing in the program, but, since she couldn't walk, not dance.

That was enough for her. She was so miffed about not being able to dance in the program, she decided that that would never happen again. She created her own three-year-old physical therapy program that included lots of falling and bruising, I'm sure, but several weeks later was walking.

The orphanage staff in Ukraine told us that it was amazing she could walk, but since she was walking when we met her, it didn't really sink in. However, after arriving home and having many doctors tell us that, not only was it incredible that she could walk, but that they couldn't even give us a medical explanation for why she could walk, it began to really sink in!

So, I should've remembered that with our youngest daughter. However, she came home unable to walk, and her legs and body were limp with atrophy. For the first few months home she was so weak that her favorite position to play in was laying on her back on the floor. Doctor after doctor told us that the surgical options for helping her to walk were too extreme and we should just train her to using a wheelchair. There would be no walking in her future.

We began to work toward that goal, and since her doctor was recommending that we fit her for a power wheelchair, we began to work towards accommodating that. We had her feet surgically unclubbed so that she could wear shoes, but not thinking that she could ever bear weight or walk on them. Then a funny thing happened.

She began trying to stand and walk. While wearing her braces, she learned to balance on her feet while holding herself up on a step stool. Then she began trying to walk on her knees. Then she began trying to walk while holding our hands.


'


While this is a long way from walking, it is amazing nonetheless. And, I am reminded that we really don't know the future, and we really don't know what God will do. It's easy to forget that with God, all things are possible.

Each night when we tuck the girls in bed we pray, sing and read the Bible with them. Our daughter's favorite song is based on the miraculous healing Jesus worked through Peter and John, and every night she asks to sing it (and also a song about being quiet, which is really funny because she is never quiet, and she actually shouts the song).

"Peter and John went to pray.
They met a lame man on the way. (side note, I hate this line --what, was the guy boring?)
He held out his palm and he asked for some alms
And this is what Peter did say:

Silver and Gold have I none (amen to that brother!)
But such as I have I give thee
In the name of Jesus Christ of Nazareth
Rise up and Walk!

And he went walking and leaping and praising God!
Walking and leaping and praising God!
In the name of Jesus Christ of Nazareth
RISE UP AND WALK

I'm left wondering if God is actually going to let us witness a miracle with our own eyes. But until then, I pray that we can be content with whatever His plan is to reveal his glory in her life.

A Big Ugly Dog and Forgiveness

Several years ago, I was the victim of a crime. The event was perpetrated by a dog, but the crime was really the ignorance of its owners. They bought a dog (in a city, where it is statistically likely to have been bred from fighting stock) that was known for its power, strength and aggression, and then they never bothered to put the dog in obedience training. Instead, fairly ignorant of dog behavior, they kept the 80+lb dog in their home, letting it interact with guests and children in their neighborhood.

I met the dog when it was only about 2 or 3 years old, and within seconds of the meeting it ripped my nose and lip nearly off. The owner drove me to the hospital where I had my face pieced back together by a plastic surgeon. I was terrified, my husband was terrified and my children (who stood next to me as the dog attacked) were terrified. I spent the next week drugged in order to cover the pain which was not only in my face but entire body which had bruises, scratches and teeth marks from the dog jumping on me. With that attack, nightmares, a constant sense of shock and fear became ingrained in me.

On the way to the hospital, I could barely talk and I was praying that my lips were still attached to my face. I also begged Jesus to just get me through this ordeal and help me to use it for his glory. I held the towel over my mouth (to catch the blood) and looked at the man who owned the dog.

"I just want you to know that I forgive you for letting this happen." I said, "I understand that things like this can happen and I just want you to know that I forgive you."

He responded with some apologies, and I thought that this was going to be some great thing that God would work for his glory. Well, it was, but not in the way I thought.

The next day the owner and his wife came over to see how I was. I was still drugged and terrified, and I appreciated their concern. But then, the owner said something that made it feel like the attack was happening all over again. He implied it was not his fault or the dog's fault.

"I don't know what happened. I mean I don't want to make this matter smaller than it is or anything, but this he's such a good dog that I just have to think that this was a playful nip that just went too far."

A playful nip that went too far???? I had over 54 stitches in my face!!!

On that day, I couldn't deal with the guy anymore, so I just smiled, told him I appreciated his visit and secretly hoped he would leave.

Several weeks later, though, I got a call from him. He had talked to his vet, and his vet had suggested that the dog (because he was such a great dog -- or perhaps because he helped to make the vet have a successful practice?) not be put down. Instead, they suggested dog therapy.

Yes, I know it's really really really stupid. But what came next was even more incredible.

"See," he told me, "Sometimes a dog can misinterpret your motions and think you are being aggressive. Your body language told our dog you were a threat, so he bite you."

Oh my, I thought, he's really telling me that this attack was my fault! Instead of the victim, I was the instigator!

Let me stop here and explain just what it feels like to have a crime committed against you, to be brutally attacked and then have the perpetrator suavely explain that it was your fault. There was nothing, nothing that could've hit harder. My face was still ripped up. I had a son who was showing symptoms of PTSD, it hurt to move my arms, I was scared to take walks outside, I was scared to go to the park, I was scared of my own dog, I couldn't sleep at night without nightmares .... and he sat there and told me that it was my fault! Even now as I write about it it raises up anger, guilt, fear and shame.

He went on to ask me for my blessing on his idea to forgo terminating the dog and putting it into therapy.

Obviously, I made it sincerely clear that I thought that was a irresponsible idea. Then I hung up the phone, and really let my husband know just how irresponsible and selfish I thought it was!

Over the course of the next few months I really processed all that had happened. I couldn't believe that that guy would value his dog's life over my face, the safety of his neighbors and wife, and all rational thought. That dog could've easily killed one of my children! Thank God it attacked me and not them! But, still, he did value that dog so much more than human life and health! To my knowledge that dog is still alive today. It did help that their home owners insurance (as well as the laws of Ohio) didn't agree that the attack was my fault! And, God did use this to his glory when we were compensated for the attack and able to pay off adoption debt.

However, there was another lesson in it that came to mind again the other day when I was reading in Colossians.

'But now He has reconciled you by Christ's physical body through death to present you holy in his sight, without blemish and free from accusation." Colossians 1:22

I was thinking about what a tremendous gift this is. Christ suffered so much on our behalf, took our punishment for our sins and then just simply forgave us. For those of us that recognize the gift, it is the most wonderful thing. Similar in some ways to how I suffered through the dog attack, taking the brunt of the dog's aggression because of the owner's incompetence in dog behavior, training and handling. Then I forgave him -- something that should've been so freeing to him, and truly given by me as a valuable gift.

But just like the dog owner, there are people who don't recognize the gift. I forgave him. I'm glad I did. I'm glad that I chose to do what Christ wanted me to -- even though it fell on deaf ears. His actions showed that. My forgiveness didn't matter because he was certain that he (or his dog) had done nothing wrong. So, he threw it back in my face, almost to the point of trying to manipulate me with it.

I realized how much that is a picture of how people reject Christ. They take his forgiveness and throw it out. There is no gratitude for the blood that was shed, there is no sensitivity to the losses he faced, and there is no real acceptance of the forgiveness because they believe that they have done nothing wrong. Through this dog attack, I was able to have a tiny understanding of how Jesus feels at this rejection.

That perspective is another way that God redeemed it. Now when I look at the thin scar running across the top of my lip, or when I feel how my left nostril is blocked with scar tissue, it isn't a reminder of how I suffered. It's a reminder of the gift that Christ gave me when He took the punishment for my sin.

I also now understand that nothing, not even all the money an insurance company can throw at you, can replace the lost relationship that happens (even with a mere acquaintance) when a person refuses to accept forgiveness because they refuse to acknowledge the wrong that they've done.

I've wrestled with the question of whether or not I have truly forgiven him. Up until the night of the phone call, I felt that I had. But that phone call was so difficult to get past, that I do still question it. I can honestly say that I don't harass the guy, I don't gossip about him, I haven't made any mean websites about him, I pray for him and his family (especially their safety since they still have the dog), and I don't think mean thoughts about him. I actually don't think about him much at all. I still trust that God can redeem his way of thinking, and that God will righteously judge this incident as He will all others. So, from my human perspective I think I've come as close to forgiveness as I can, and my prayer is that I will continue to live in forgiveness towards him in whatever God calls me to.