Our daughter, Anna, made the news, talking about Paddy Rossbach Youth Camp, a camp for amputee children held here in southwest Ohio at Camp Joy. Anna was able to go because of the generosity of the Cincinnati Dreams Come True Foundation, and many other kids were able to attend because of men like these in the video and sponsors like them. Children come from all over the US.
Years ago our family took a trip to the Outer Banks. While there, we visited the site of Orville and Wilbur Wright’s first historic flight at Kitty Hawk. On display in the museum there was the famous NASA space pen. Until I actually saw the space pen, I had thought it to be an Internet myth. While perhaps all the details of the story that pass around the Internet are not all true, the truth is that Americans did indeed spend thousands of dollars developing an anti-gravity ink pen during the height of our Cold War with Russia…while the Russians quite simply and thriftily used a pencil. Call it ingenuity, or call it reinventing the wheel, but either way, suffice it to say we might have a tendency to make things a bit more complicated than need be!
The space pen came back to my thoughts again as we get ready to finally allow a multi-thousand dollar wheelchair, that also happens to weigh three hundred plus pounds, into our home. The first time we were the unintended victims of wheelchair salesman enthusiasm, our youngest was not even three years old. Having already found the myth of therapeutic scissors, therapeutic knives, and therapeutic chairs – an overpriced beanbag chair—quite easy to debunk, but only after spending a nice sum of money on them, I was a skeptic about the chair from the start. Especially as it came with a $35,000 price tag, not including the $60,000 van we’d need to cart it and our family around town.
Then there was the safety aspect of having a three-year-old drive a 300 lb wheelchair around our home. No question that there would be lots of broken toys and toes in her wake. So, we informed the “team” we were working with that we believed the power chair was unnecessary at that stage of life, to which we were branded, “parents who did not want their child to keep up.” The pressure put on us was enormous, yet I knew we would not use that expensive behemoth that had been deemed “medically necessary” despite the fact that she could maneuver her manual chair around her environment perfectly well.
Now, though, she is in second grade and enrolled in our local public school. She survived those years without the chair, in fact she’s even flourished. Her world is larger and I am willing to give this chair a try, as, despite what had been said of us earlier, we really do care that she can keep up with the other children. Her reality is that, in a room she can, on the playground and around the building she can’t. However, I just can’t help questioning the wisdom of a 300 pound, battery operated (i.e.: cannot get wet) power tool in the hand of an active seven year old.
I don’t doubt that medical professionals mean well and want to help. However, I also know that I can mean well and want to help, and yet often my form of help is anything but that. I am constantly reminded of the fact that I am the one living this life, day to day, and I am the only one who can evaluate what will work or not work in my context. And, I should never be hushed or shamed if my opinion doesn’t match those who are “experts”. They see one part of the child before them and I, as her mom, know the whole.
I just can’t help but think I’m trading one set of problems for another with this chair. It turns out that the space pen wasn’t even needed. A regular ball point pen works just as well in space. I’m hoping I won’t find this wheelchair to be a $30,000 space pen….
2 Peter 3:14-15a “So then, dear friends, since you are looking forward to this, make every effort to be found spotless, blameless and at peace with him. Bear in mind that our Lord’s patience means salvation…”
When I was a young parent, I followed the many books that said, “If you ‘a’ then ‘b’ will happen.” Daring to Discipline, we had our “consequences charts”, and we and our Home Grown Kids knew What to Expect at every stage. While there were some great nuggets of wisdom to be mined out of many child-rearing books, the message was clear: you can nip any problem or misbehavior in the bud and all your children can be little Laura Ingalls Wilders and Opie Taylors. While I do treasure those that are sweet little Lauras and Opies, either there is something not formulaic to life, or my children are profoundly disturbed. I prefer to believe the former.
One “if then” that I bought into was that of vegetables: Only feed your babies veggies, not even fruit, and then they will like veggies all their life.
When my oldest, Ben, was an infant we started rice cereal when he was 4 months old. He nursed and ate rice cereal, nothing more. We cautiously introduced peas, nervous because after all, they are a starch and starches are really sugar and we might ruin his palette. The peas didn’t cause him to reject his other food for Hershey’s bars, so we made the bold move of adding carrots – no juice, no sugar, no fruit. Sure enough, he was quite a healthy and voracious eater, until when he was just over two, came the day of reckoning. He sat in his high chair happily eating away at a plate of chicken breast, banana and broccoli with carrots. After finishing his chicken and banana, he looked at me, batted his Bambi eyes and said, “Memmie no eat! Yucky!”
Drat! I knew I shouldn’t have ever introduced fruit or put sugar in his first birthday cake! I blew it!
Following the advice of Dorothy Moore, I simply smiled and took the plate away, excusing him from the table. Then when he was hungry, offered him the broccoli and carrots.
“Memmie no eat! Yucky!”
For two entire days, whenever I put the plate in front of him that is what I heard, and the boy did not eat. Not a bite. Finally, I caved and he happily ate oatmeal while I pondered my failure. Soon followed the systematic dropping of all veggies, many fruits, and the emergence of the world’s pickiest eater. A couple years later, we adopted our first daughter. At the orphanage, she had eaten, in her own words, “kasha just only kasha”, although we knew that candy was often used to illicit good behavior and was a cheap and well-received treat to the children. So, no variety and lots of sugar. After her adjustment to our culture, she ate anything and everything we put in front of her, with veggies, even salad, topping her list of favorites. In fact, she is our most adventurous eater!
I started to understand the Dobsonian “nip it in the bud” attitude wasn’t entirely right or entirely wrong. I was “nipping in the bud”, it was just that the “bud” wasn’t the first three years, it was the first twenty-five (as we now know that brain development continues until age twenty-five).
2 Peter 3:8 But do not ignore this one fact, beloved, that with the Lord one day is like a thousand years, and a thousand years are like one day. 3:9 The Lord is not slow about his promise, as some think of slowness, but is patient with you, not wanting any to perish, but all to come to repentance.
The Lord’s “slowness” is not about filling our children with skills or purpose, no matter how valuable those things might be, but about God’s patience, “not wanting any to perish, but all to come to repentance.” Whether we get our children at age one or age thirteen, our joy can be in the journey of watching them develop that relationship with God, coming to repentance. Along the way, they will thoroughly embarrass us with their sinful nature that reflects our own, showing us that we don’t hold the formula for success. If the joy of the Lord is our strength, though, perhaps we can laugh at ourselves in the process. If we allow them room for error, trusting that God is at work in all things and at all times, they, like us, will be able to “work out their salvation with fear and trembling”.
Where I’m From
by Anna Amend
I am from a quiet street
That most people overlook.
The street where you can feel the gentle breeze
And can smell the freshly-mowed lawns.
I am from the hard pavement and dirt
That my and my sibling’s bare feet walked on.
I am from the sweet-smelling kitchen that my mother’s
Expert hands made her tasty foods.
I am from a family that has a peculiar fondness over animals,
I am from the late nights we spent
Filling our heads with movie mysteries.
It is the family who loves one another and accepts differences.
I’m from me and my two younger sisters
Who became a part of the family at a young age.
Though my family is different in looks, acts, and voices
I am proudly a part of it.
I am from his love endureth forever.
I am from the house we just moved into.
To the happy laughs from my sister’s room to the barks from our dogs.
From my Grandma’s careful stitching
To my Grandfather’s naps every day.
I am from my Dad’s hard-working mind
To my mother’s firm but kind teaching.
I am from the pages that my Mother wrote
And the wagging of a tail when I come home
In an old scrapbook I can see
A lot of pictures with faces I know.
The faces of those who have changed so
But I wanted to capture you in one moment we’ll both remember.
From my best friend’s rare smiles to my parents radiating laughs.
It is from those memories that I know and love.
It is from those memories that I am from.
For about 3 months, our youngest daughter walked. The three months started out beautiful. However, it quickly turned to sorrow as her pain from walking overshadowed the act itself. Her corrected arthrogryposis, which had locked both her knees at 90 and 100 degree angles, had done what it so typically does: clubbed back to its original position. By the time we came to the point of understanding she will never walk, the wheelchair was a welcome relief over the clumsy and heavy full-length braces that were necessary to hold legs without quad muscles in a position to walk.
There is no question that she and we faced a loss. Not being able to walk, along with having arms that are not fully functioning, is extremely limiting. However, it is, ultimately, one loss in a life full of gains. While, it is hard to keep up with a wheelchair, and the rest of us do routinely get our toes run over, life moves on and life is good.
That is why I struggle with the stories of the healings in the Bible. Or rather, people’s understanding of the stories of the healings. There is so much presupposition that I believe we’ve only begun to understand the depth of why the narratives contain these stories.
One of my favorites has always been the story of the paralytic, told in Luke, chapter five.
The story begins by setting the scene with Jesus, full of God’s healing power, teaching people, including a group of religious leaders. A man who is paralyzed is carried in on a mat by his friends, or at least they try to carry him in, without luck. We don’t why he is paralyzed, if it is from birth, an illness, or the middle eastern Bible-times version of something as ridiculous as getting drunk and driving a motorcycle into a brick wall. As he has friends caring for him, rather than family, I tend to believe that this paralysis was a recent thing in his life, and quite possibly from an accident of some sorts. As with far too much of history, people born with disabilities were most often outcast and had only family involved in their lives, if even that.
These friends were tenacious in their belief that Jesus could make this right, and after their failed attempt at carrying him in, they carried him to the roof, ripped a large hole in the thatching, and carefully lowered their friend down to Christ. Interestingly enough, the Bible doesn’t say that the friends were looking for Jesus to heal him. They probably were, especially as the scripture refers to Jesus at the beginning of the story saying, “the power of the Lord was present for him to heal the sick.” I tend to think that their deepest desire was for Jesus to make it right, and in their limited understanding, like ours, that would mean healing his physical body.
Jesus sees the paralytic lying there and then does something that no reader of the story would expect. He forgives the man’s sins! Some of narrow scope of thought are reading this story are thinking and thinking, What kind of sins can a paralytic possibly commit? He’s just lying there. But we are all capable of the same sin that traces itself back to the garden: the sin of wanting to be God rather than being like him. This man’s life is bound up in sin that will continue to destroy him no matter what physical healing happens, sins that will continue to send him careening into brick walls and finding himself lying on a mat, paralyzed.
Years ago, when I first read this story, long before any practical understanding of disabilities, I used to question how Jesus could just look past what so obviously needed healing on this man. I didn’t doubt that Jesus was compassionate; I doubted His ability to understand what earthly life would be like when you didn’t have supreme powers. Now, perhaps, I have a bit more understanding than I did then.
I think we who don’t have a physical disability approach these stories with some serious presuppositions. We presume that the most important part of the story is the physical healing, because we presume that any person with a disability would desire healing more than anything. From the start of the story, in fact, Jesus had a different view of what needed healed.
I also think of this in connection with the time that Jesus healed the blind man in the pool at Bethesda. Before healing the man, Jesus posed the question, “Do you want to get well?”
Most of the teaching that I’ve heard on this passage leads us to believe that Jesus asks this question because he wanted to see if this man truly wanted healed. Obviously this is a legitimate interpretation, however the most popular reason given is that the man wanted to continue a life of begging rather than take responsibility. An attitude of “it’s his fault” being projected all the way back to Jesus. No wonder such a small percentage of the disabled population attends church!
Perhaps Jesus asked this question because He understood the greater truth that life isn’t over just because you have a disability. That understanding came through in the question to the man at the pool, and it comes to light here. Jesus went straight to the real issue, the sin, because He knew what could be redeemed from a life with a disability. The disability didn’t have to be removed in order for the man to live as a son of God. His life could still have purpose, and his eternal reward would stay the same.
So, He healed what really needed healed. “When Jesus saw their faith, he said to the paralyzed man, ‘Son, your sins are forgiven.’ “
I’ve often found the next part to be one of the best parts of the story. The religious leaders question, in their minds, who exactly Jesus thinks he is to forgive sin. Luke 5:22, “Jesus knew what they were thinking and asked, “Why are you thinking these things in your hearts? Which is easier: to say, ‘Your sins are forgiven,’ or to say, ‘Get up and walk’? ”
Then Jesus goes on to heal the man, just to show evidence of his authority to forgive sins.
It strikes me that the stories of the healings have much more depth than we realize. The recorded healings were just some of the miracles he performed, so obviously there must be a reason that these particular ones were chosen. Perhaps it was the nuggets of truth surrounding the healings that Jesus was more concerned about.
Was the man’s life radically changed by his healing? Of course. It would be silly to think otherwise. It was a tremendous gift to be healed. However, in the end, the man faced the same aging process and the same grave that every other person in the history of the world faces. At best a healing of physical nature is a temporary fix, and without facing the problem of sin, there was no hope for any real transformation.
Jesus gave a patch-work fix to the physical problem, but the miracle came in the permanent solution he gave to man’s real problem. And, I believe, esteemed the life of those who journey with a body that doesn’t do all it was designed to do.
Aaron Fotheringham is probably most well known for being the first person to do a wheelchair flip. He is a young man that was born with spina bifida and uses a wheelchair. He has created a sport similar to skateboarding, but calls it “Hard Core Sitting”.
With a positive attitude, amazing skill and a great sense of adventure, kids and adults with disabilities and without will enjoy his website and watching him work.
Visit his site at www.aaronfotheringham.com
Just remember, though, kids shouldn’t try this at home!
Public life can be very interesting when one of your children is missing body parts that people think cannot possibly be missing. Quickly we learned with our oldest daughter that questions and comments would arise and, thankfully, my desire to play a game of “shock and awe” by creating tales of bear fights, alligator wrestling and alien abduction has not been picked up by her.
“I was simply born with one arm.” She’ll say, and then move on. She has much more grace than I for those whose parents have not taught them manners.
There have been, of course, rude and insensitive questions. Over the years, those have slowly died out, and I can only assume that as she’s grown older and more out spoken people have become ashamed to ask such questions. No longer can they just ask Mama, “What happened to her arm?” but now they must address her, as she is her own person with a voice.
However, there’s one assumption that continues bother me; 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 a body is divine individual design and how much is simply the ongoing creation of a system God set in motion at the beginning of time. I’m not of the intent to solve that debate because in daily life it has no purpose. However, even if you believe the idea that God is personally designing each and every individual at the point of conception, then doesn’t “that way” seem somewhat derogatory?
Do I walk up to a man whom I perceive as having an especially awkward and large nose and say, “You are so special because God made you that way!”
Or the teenager who adds to his gawky phase a head full of orthodontia devices, “God made you so special when he made you that way!”
Rather, if I believe that life begins at conception, then how is a disability that forms after conception different than a traumatic event that happens to a person’s body after birth? If I believe, in my 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?
All parents have their own methods for helping their children process their disability and rightly so. However, there are some methods that I question the implications. For instance, what of the mother who tells her child that the missing fingers on her hands are the sign that she is “special” and that those are the spots where God kissed her? Aside from the obvious problem of defining one’s value based upon their disability, a bigger question arises. Did He nibble the fingers off when he kissed? If this is his modus operandi, I’ll be hiding my hands from Him on the grand reunion day, or at the very least asking if He’s eaten lunch before allowing myself a hug and kiss.
Another suggestion that sends chills up my spine is when well meaning people tell my daughter that “God needed her arm in heaven.” What? The All-Powerful Eternal Creator of Reality needs someone’s arm? Did I miss part of the crucifixion story where He lost His? Is there something He couldn’t reach on a really high shelf? And, if so, wouldn’t it have been better if He kept the arm of a really tall man with long arms rather than that of 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.
Ultimately, these greeting card versions of reality are simply ways that people avoid dealing with the grief of the loss that is inherent in disabilities. It amazes people, but we tell our daughters they have different bodies because, well, sometimes that happens.
Sometimes people are born with one arm
Sometimes people are born with two different length legs.
Sometimes people are born with four 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 with a docile nature.
Sometimes people are born feisty.
It just happens. What you’re born with or without is neither good nor bad, it just simply is. Most certainly, God allows people to be born with the disabilities, just as he allows for illness, job-loss, or any other loss, trial or suffering people face, perceived or real. However, that makes him far from being the author of those things. They are products of the world we live in, which He allows because of the beauty that can come from them, a beauty that so often defies the natural and speaks to the supernatural aspects of our souls and humanity. As it says in Isaiah 55, where once was a thorn bush, a sweet myrtle tree will grow.
I do believe that 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, and then he placed them into a creation that was long ago corrupted by sin. That sin began to affect their lives before they were ever born. The pain from the corruption didn’t stop with birth, it was compounded when they were abandoned and placed in state-run orphanages.
The story doesn’t end there, though. 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. He called people in their birth countries and here in the United States to work and advocate for a family for them. 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 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 controversial 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… 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.’ ”
Now that’s hope, and hope is much better than sentimentality.
Babushka, retold and illustrated by Charles Mikolyack, is the Russian folk tale of a lady who was too busy cleaning her home to stop and give a gift to the baby Christ as he passed by her home. Once she realizes her folly, she spends the rest of her life searching for the Christ child to give him a gift. Along the way she surprises children whose paths she happens to cross, though they never see her. Instead they catch of whiff of cinnamon and find a small gift on their pillow.
“And to this day, Babushka wanders the earth still looking for the Christ child, leaving gifts for all children in the hopes that one day she will find him.”
Somehow, for many Christmases, Babushka has been able to leap over the ocean and leave her scent and small gifts on several pillows in south western Ohio. It’s no more unrealistic than Santa Claus!
This beautifully illustrated book has been a meaningful way for us to introduce some Slavic culture into our family traditions. While we have Ukrainian and Kazak children, we were told early on that the that teaching our children to value all cultures was key in helping them feel as though their ethnic heritage is valued. Introducing the language of “Babushka”, and a story about the Christ child from a vastly different part of the world opens up our conversation for ideas such as cultural differences, religious differences, and, of course, differences in general. And, the use of candy or a small gift and some mystery have made it a chance to celebrate a tradition that is different yet good.
I highly recommend this children’s book for families that have children between the ages of 4 and 10.
For the Mighty One Has Done Great Things for Me…
I will never forget the first time it occurred to me that I would need, one day, to explain to our youngest daughter that she would not walk. Traveling back to Ukraine for our second of three trips to complete her adoption, I was sitting in the lobby of the duty-free shopping mall at Heathrow airport in London, surrounded by the good cheer of British accents and Christmas decorations, when the thought hit me. I burst into tears. How would I explain to my child that she would never do what I thought was hers by right? I imagined an emotional scene where I fumbled for the right words, she crying heartily as the meaning became clear.
However, things never play out as we imagine them. When we first spoke of walking with her, her reaction was to make herself walk, which, indeed, she did for about three months. When that failed, though, and we were back to the wheelchair, and her reaction was not grief, but relief from throwing off the braces, Botox injections and night casts which produced so much pain and struggle in their attempts to keep her walking. Not-walking was liberating! At least for a while.
Then the reality of it began to sink in. It didn’t come out, though, as direct grief over her legs. Instead, she came to realizations like, “I hate winter.”
“Because the snow gets all over my wheels and my hands,” panic increased as her voice went up in pitch and volume, “and I can’t get anywhere and my friends want to play in the snow and I can’t and…”
“I hate recess on the back playground!”
“Because I can’t keep up with the other kids in the grass,” panic voice taking over once again, “and even today when they went inside I was still wheeling and I got to the door after they were all gone and they weren’t in the classroom and I went to look for them alone and I was all embarrassed because I forgot they went to the bathroom first…”
I soon realized that there was not going to be an “aha” moment with this loss, but a childhood of teaching moments where she would realize how her difference impacts her life. Somehow this loss had to become something good to her or else I would lose her to unmerited self-pity. She couldn’t play in the snow, but she could be pulled in a sled. She couldn’t be the fastest in the class, but Jesus promised that the last shall be first and the first shall be last.
Talking together before school one day, she began to cry because she was sad she was always last in everything. In addition to that humiliation, more than once, she got so far behind that she was separated from her class and felt alone and embarrassed. Her school and teacher are diligent in their inclusion, and she has friends with whom she plays every day. The problem isn’t isolation or even a lack of respect for her place within the school. The shame came from the fact that she was separated because she was unable to keep up. A child as competitive as she is hates to have her weakness out front where everyone can see it, yet she lives every day in that state. Like her mother, she is an achievement junkie that really loves to have it all together all the time. What could I say, though, as I know what reality is and what it is not, and reality is that God doesn’t work in our achievements as much as in our failures and weaknesses?
‘Those times are gifts.” I told her. “Those are the times that you can practice trusting that you are not alone. He promised to be with us at those particular times. His spirit is always with us, of course, but those times, when you are alone and embarrassed, those are the times he promised us he would be with us. In that way, your arthrogryposis is a gift, because you get the opportunity to practice trusting God more than most people. Have you ever gotten lost to the point you couldn’t find your class.”
“So, you see, those are chances to practice, and by the time you’re an adult you will have an enormous faith because you will have seen God be faithful to you.”
I Thessalonians 5:16-18 (NIV) “Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus.”
My natural inclination is to lose sight of the fact that while rejoicing always is the call, grief is part of the process, and those two things do not contradict each other. For those of us in these “circumstances”, it might be a first step to give thanks for the One who meets us there, and, ultimately, we can be thankful for the circumstance that drove us to that dependence. There is an enormous loss in not-walking, but there is a light that is produced by that loss that far outshines the light of “normal” life, and I believe that what God will use Arthrogryposis to produce in her life is something incredibly good.
With five children who love to read, I often find myself waiting at the library while someone else is browsing books. Several years ago that was the case, and, while waiting, I was browsing shelves and found an absolute gem of a book, The Wonderful Life of the Fly Who Couldn’t Fly by Bo Lazoff, illustrated by Beth Stover. Lazoff, founder of the Human Kindness Foundation, is the son of a lifetime wheelchair user, and I can’t imagine a better story about the blessings that come from a life lived differently.
Told in verse, the main character is a fly that is born without wings — missing the very body part that defines what a fly is! Without glossing over the grief of that loss, her “Mama Fly” gives her wise advice, and the wingless fly goes on to live a unique and beautiful life. At the end of her life, other flies gather around as she talks to them, giving them advice, and telling them the beautiful words, “I’m truly not sad that I never once flew.”
After figuring out that lots of deep breaths and a disattachment to the text enables me to read this lovely book without crying, I have read it hundreds of times to my own children and used it when teaching other children about disabilities!