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!"  

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.

Another Great Video

Deb Fixes the Myths of Therapy

Our oldest daughter came to our home, despite multiple handicaps and a life spent in an orphanage, completely able to keep up with her peers. She could dress herself, feed herself and even handle the bathroom on her own.

So, of course, nearly every medical professional, teacher and child "specialist" we met with encouraged us to place her in therapy.

"You know, she would be able to have free occupational therapy through the state -- part of the early intervention program. Your public schools would have to pay for it." One well meaning teacher told me.



"Why?" I asked. "She can do everything at an age appropriate level."

"Yes, but, it's free and would help."

Now, I should've asked, "Help with what?" but I just let it drop.

Another problem that occurred to people was the fact that our daughter spoke "Russian". That's in quotes because she actually spoke Ukrainian, which is a different language than Russian, but I could never convince people of that.

So, people kept telling me (despite the fact that she was picking up English so fast she was speaking in full sentences within a couple months of coming home) that she needed speech therapy. Of course, our insurance didn't agree, so they weren't willing to pay for it. I ended up calling our local public school to see what speech services were available for 3 year olds.

"Oh yes," the school system lady told me, "she certainly needs therapy! You need to enroll her in our preschool and then she'll get the services she needs."

"What services?" I asked.

"She can be a part of our class which has a focus on language development."

"So, all the kids have language problems?"

"Most of them."

Okay, so to learn English, I am supposed to take her away from her well-spoken older brothers and immerse her in a classroom full of kids who have language problems? Oh, that's logical!

Incidentally, 5 years later, our daughter took the Stanford Achievement test and tested at the 95th percentile and higher in her language abilities. Drat! I wish I had taken them up on that "speech therapy"! Maybe she'd actually be equal with her peer group rather than ahead of most of them.

Thankfully, our next daughter avoided all that junk, probably because her differences are not very noticeable to onlookers since it is just some missing hand and arm parts.

But our youngest, the one that can't walk, she's gotten the fullest treatment. Not just therapy, not just intervention, but a life that should be structured around therapy: therapeutic preschool.


Now, apparently, our daughter "should've" been fitted for her power chair at 18 months. She wasn't adopted until she was nearly three (what can I say, we're slackers), so she was already "behind schedule". So, to really help her catch up here was the plan:

1) Have her fitted for a 300 lb power chair that she can use no where except therapeutic preschool
2) Enroll her in therapeutic preschool so she can use the chair


Now, I love the idea of taking a child out of an institution, putting her into a family, and then placing her in an institution! That's just great for promoting healthy attachment!


Not all therapy is a hoax, of course, but I am just amazed at how quickly these professionals are willing to categorize my children. Our middle daughter provides another example. When she was originally assessed after her adoption, upon looking at her file, the first thing the occupational therapist said was,

"Well, she's from Kazakhstan so were definitely looking at fetal alcohol syndrome."

Not, "there's a chance for fetal alcohol syndrome" or "she's at risk for fetal alcohol syndrome" but, "she's got it". How's that for racial profiling?!

By the way, she doesn't have Fetal Alcohol Syndrome. Perhaps her birth family, who were Kazak, not Russian, were Muslim and didn't drink? I don't know, but I do know that I could've started years of therapy for a disability she didn't have because someone made a judgement about her based upon where she was born!

Intervention, where needed, is a good thing. Intervention, when inappropriately applied, robs my children of time they should be spending having a childhood.

Are my husband and I the only people that are really looking out for our girls?

Of course, any intervention we seek for them doesn't line our pockets or give us job security... so perhaps that's why we question more.

A Beautiful Heart

Sometimes I ponder what our oldest daughter's future would have been if we had not adopted her. While the information is always sketchy, there are some things that I do know for sure. One thing is that her caregivers were terribly worried that she would not be adopted before she turned 4. At age 4, the children are evaluated and sent to various orphanage boarding schools (rather than a baby house, which will house any baby). If there is any defect detected by this very subjective evaluation, the child is then sent to an institution for the disabled. There, she would face not only a future with no family, but with no education, near starvation and no stimulation at all. (See Abandoned to the State, Cruelty and Neglect in Russian Orphanages to get a taste of what life would be like -- these aren't photos that you would want a young child to view. ) Another thing I know is that although most people in the Former Soviet Union don't talk about it, enough have for people to know that this type of institution is far too common. Of course, even just one institution like that is far too many!

But, today, our dear little 8-year-old is not tied to a chair, or left sitting in a dark room or forced to lie in a bed all day (unless she gets in trouble, and then it wouldn't be all day, just for a while). Instead, she's out in our front yard, playing in the snow, pretending to be an Inuit foraging for food for herself and her sled dog team.


Minutes earlier she was inside, reading through a box of prayer cards that we had received from Operation Christmas Child.

"Mom, what's a refugee camp?"
"Why would we need to pray for children that are in a war? How can a child be in a war?"
"Why would a child have AIDS?"
"Why are there so many children living in sewers?"
"Why would children live in garbage dumps?"

Such hard questions to answer to a child who doesn't even really remember her life in an orphanage! All she remembers is the security of having our family, a family that is far from perfect, but much better than no family at all. In an odd twist though, she does know something about that part of her life... She'll tell people that she knows that she would have a different life in Ukraine. She does know that she would not be reading, swimming or playing the piano if she hadn't been adopted. She knows that she wouldn't know about Skyline Chili, Mexican food, or Cream of Wheat. She knows she wouldn't have her beloved service dog or a family that loves her.

Of course, that doesn't mean she's not a kid. She still disobeys, she still makes mistakes, like flushing when the plumber's working on the pipes, and she still has times where she covets what other people have. But, we never expected her to say, "Oh thank you, Mom and Dad, for rescuing me and giving me life!" any more than we expect our boys to say, "Thank you so much for birthing me and giving me life!"


Her musings, today, touched me because she does, obviously, feel a connection to suffering children. None of our other kids pay attention to those prayer cards. She studies them. She remembers to pray for them. She talks about them.

So, today I didn't ponder what her life would've been like if we hadn't adopted her, I pondered what my life would be like if we hadn't. Taking her suffering and making it mine has been one of the most defining and life changing things I've ever done -- and the most rewarding. On the day we met her, there was no question in either I or my husband's mind that this child was ours and that any of the details of her disabilities would pale in comparison to the joy of having her in our life. She sparkled like a jewel among all the adorable children in her orphanage, always a gleam in her eye. Although, I might say that sometimes that gleam is more of a spark than a gleam!

I've learned so much from her (the least of which is probably what I can do with 1 arm, making me much more efficient at many physical tasks!), that I can't even count the ways it's been a blessing. The courage that she showed during her hip surgery and recovery was far beyond anything that I could muster. Her ability to deal with the indignity of having to use a bed pan and have her parents dress her for weeks after her surgery astounded us. It was like the harder something was, the higher she rose. But, it's her unyielding belief that God is good and loves her unconditionally, despite what life has thrown at her that astounds me the most.

So today, as she innocently flipped through the cards, I was blessed once again by the fact that the Lord chose me to be the mother of such a beautiful little heart that sees past the pain and loss in her own life and desires to bless others.

Now, if only I could get her to clean her room with a good attitude!

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.

An Equalizer Has Arrrived

The playing field has been levelled! Well, maybe not as much as we'd like, because we've learned that even the tiniest change in incline is noticeable in a wheelchair. However, as far as our daughter goes, things are looking much more accessible now.

Before adopting our youngest daughter, I never knew how much controversy could surround something as simple as a wheelchair. All the view points are amazing (this includes what seems like a thousand different perspectives and philosophies about when to introduce a wheelchair and what type to use, what brand, what home environment -- more on that in a different blog!), and can really leave a parent feeling like their head is spinning. Perhaps the biggest contrast though has been between our youngest daughter and our oldest.

As the photo indicates, our oldest daughter loves to stand. She loves to walk even more. Running is her favorite, besides swimming, at least. For her, the past few months using a wheelchair have been like a prison as far as the restrictions go. Part of that is certainly due to the 6 weeks she spent in a body cast. But, also, that is just her perspective. She wants to walk, she wants to run -- a wheelchair, to her is representative of a disability. And a disability is something that she, despite missing an arm and having severely deformed legs and hips does not believe she has. Honestly, though, if life with a disability is as she lives it, then disability is a misnomer and life is just life. I suspect that she's right.

Anyway, for her the idea of using a wheelchair is outrageous and she has worked so diligently on her rehab that she is up and running on her new prosthetic leg much earlier than predicted. Although, a lot of progress, I'm sure, is due to the hand of God directing her and healing her. But, the fact does remain, that if she didn't really want it, it wouldn't be happening as fast as it is.

But then our youngest daughter enters the debate. To her a wheelchair is the single most exciting thing she has ever seen. The very first time she ever tried a wheelchair, it was all she talked about for days. When she'd see one while out in public, she'd squeal with delight:

"Look! A WHEELCHAIR!"

I'm sure we offended more than one wheelchair user in the past year as her delightful squealing probably made them think, "Man, that family never gets out! Those kids have never seen a real wheelchair!"

But to her, that wheelchair represents freedom. The very night my husband assembled it and set her in, she began wheeling everywhere on the first floor of our home. She was unstoppable chatter for 2 straight days as she learned to maneuver over bumps and corners of her home environment.

"Now, I go to the table!" "Now, I go to the piano!" "Here, I'll throw that away for you!" "I GO!"


Two totally different perspectives! One child sees the wheelchair as a symbol of restraint and one sees the wheelchair as her liberator.

Of course, over the years we have worked with our older daughter to change her attitude. She now knows the proper words about wheelchairs, but I doubt that her heart-attitude has changed. She pushes herself with incredible fortitude in order to avoid something she thinks makes her look disabled. Our hope is that her seeing how it benefits the younger one will, over the years, help her to see just how liberating a wheelchair can be.

In all actuality, though, the wheelchair is really simply a very valuable tool, and a prosthetic leg is the same. Neither thing is what defines a person, and neither (as well as regular old boring walking) is morally or physically superiour. They level the playing field, and both help my daughters run the race set before them.




It's a race they both run with their own unique grace and beauty.

Nope, Not Dolly Madison, but Some Cute Dollies!

Two cute dollies creatively playing in their thrift-store ballerina dresses. Although I do have a suspicion that they would love a nice tea set.