A Sappy Sports Story

This is going to sound very sappy. But Jordan recently started playing wheelchair basketball, and this has been a very great experience for him and for his dad and me. When Jordan was born, the doctors felt confident enough to predict what he would NOT be able to do. Wouldn't walk, wouldn't well... LIVE. The first doctor predicted before he was an hour old that he would not live to age 1. When else do doctors feel like they can predict what a person's life is going to be or not be? How dare they put limits on a baby before he is even an hour old?

I recently read an article about the actress Laura San Giacoma. She has a son with CP and talked about the way she wishes doctors would give diagnoses to new parents. She mentioned that early on a doctor told her that her son would never play basketball, yet now he does in his own way. She wishes that doctors would give HOPE to parents, not just tell them what their kids would not be able to do. Because guess what? No one can predict that, least of all at birth!

This got me thinking about how important basketball has become to us as a family. It is so strange to think of being told that Jordan would not even survive and then if he did, he would not accomplish anything physically, yet now it is actually possible that he could get a sports scholarship someday. I think of other people I know whose kids don't have disabilities, and their kids are not interested in sports. And then it is MY son, who has a disability, who might just be the one to get a sports scholarship.

Soon after Jordan was born missing part of his spine, I thought, "Anything can happen. Wait... ANYTHING can happen." Anything bad can happen, but the opposite can happen, too: something you have never imagined, never, ever considered as remotely possible. Something that never even crossed your mind. We have had the hardest of times but have also had the complete opposite of that: more elation and joy than I ever could have imagined. To see my tiny little boy going after the other team's biggest, best player; to see his confidence and smile; to see him doing something I never even imagined for him....

When he was a newborn, I would go clothes shopping for him and would get so depressed when I saw anything with a sports theme. I steered clear of those outfits. I had loved sports as a kid, but it wasn't just that; it was that he was predicted to not be able to do something. It was then that one thing that I wanted most for him.

Before starting basketball, he did play on soccer and baseball teams. But those teams, also for kids with disabilities, were more the "everyone wins" philosophy. Everyone gets on base, everyone scores a run. The had "buddies," who were older kids who are very good at the sport, but they let Jordan's team "win." But this basketball, it's "real." It's an actual Paralympic sport. He learned more in the first five minutes of wheelchair basketball than he did in several seasons of Miracle League baseball and The Outreach Program for Soccer. He is allowed to lose. He only wins when he wins. He is valued as part of the team. He is depended on and is treated as a competent and complete person. If he makes a mistake, he is given constructive criticism. And he is also supported and inspired. He might not be able to reach the 10-foot basket yet, but he is great on defense and at getting rebounds, and he is working on shooting.

It has also been great for us as parents to meet other parents who "get it." We don't have to explain anything. We don't have to hear well-meaning aphorisms about disability that have worn very thin by now. And Jordan is becoming good friends with his teammates. It's so nice to see them between games having fun and hanging out. At one of the tournaments, three of the team members and one sibling were playing ping pong, and the three team members were in their wheelchairs. The kid without the wheelchair was the oddball for once.

And he just loves it. I have asked him why he keeps smiling, when he should try to look intimidating to the other team. "I know," he said, "but I just love it so much that I can't stop smiling."

And that is the main thing, that he loves it and is happy. That's all I ever wanted for him, whether he was playing sports or chess or video games--for him to have the sheer elation and joy that we have in watching him grow.

Listening

It is so rare that we really just listen. I'm not talking just about listening to what someone is trying to say to us but about that we just don't take time to listen to sounds around us.

When Jordan was first home from the NICU, I was so worried about him. They told me "heart problems, mental retardation, and die before age 1," a phrase that I can't get out of my head nearly 8 years later. So when he was first home from the hospital, Mike was with him in his bedroom, feeding him a bottle and talking to him. I was in our bedroom watching tv, but I heard them through the baby monitor and turned it up. I then sat there crying as I heard the cutest little baby noises coming from our little boy and such loving and sweet words from his father. Everything was okay.

A few days earlier, when Jordan was still in the NICU, we were putting the final touches on his room. I took clumps of his new clothes into our bedroom to remove the tags and fold them neatly. Mike was in his room working on the crib. After a few minutes of silence, I heard a very delicate and sweet lullaby coming from the baby's room. Mike had assembled the mobile I had picked out to match the room--a jungle theme with really adorable giraffes, elephants, and monkeys in pastel blue, pink, yellow, and green. Hearing that soft lullaby coming from his room, I felt again, everything was okay.

And right now I'm sitting in my home office editing something on gastrointestinal surgeries, and I hear Jordan and his dad in our backyard sword fighting and playing pirates. Jordan is going to have his tenth surgery in 3 months, and I'm very worried about it and really dreading those feelings when they take him back to the operating room and we're left there to wait for hours upon hours. But right now, hearing them play fighting, jumping around, swords clashing, again I feel like everything is okay.

Keep on Starin'

The first orthopedic doctor we saw said he "might not be much of a walker." Actually, the first prediction made by a doctor about him was "mental retardation, heart problems, and die before age 1." Turns out he is very intelligent; has a "normal, healthy heart," according to the cardiologist; and of course did survive, and is actually thriving. My husband told me that in the early days, when Jordan was in the NICU and I was still in the hospital as well, he would drive the lonely drive to visit Jordan and would see kids playing on the playground. He wondered if our son would ever be able to do that. Now he is in first grade, climbs the playground equipment using his arms, and is even on a baseball team and soccer team.

I have heard kids say quietly to a parent, "I feel sorry for him" when they see him walking with his crutches. I've heard people ask, "What's wrong with him?" One woman I know said it must be a "bummer" to have to use crutches. Every time we go out, people stare at him. They make jokes about "slow down there. You don't want to get a ticket!" Sooo hilarious. But to us, when they said he wouldn't even survive, two neon green crutches aren't a big deal. They are WONDERFUL. They enable him to play with friends, get places, do what he wants to do.

This is the main thing people don't understand unless they've been through it--this is GOOD, not bad. He is here, and he is living a wonderful life. To someone in this world, this is obvious; to someone not in it, they just don't get it. And I am sick of staring back at people with a menacing look, tired of ignoring their questions or letting them ruin my entire day. So look all you want, make all the jokes you want, but you won't get it until it happens to you.

Long Nights

“In a real dark night of the soul it is always three o'clock in the morning."—F. Scott Fitzgerald

"And there's knowing and learning/And the one a light a burning/In the cool dark night of the soul."—"Broken," Michael McDermott

The subject of this Disability Blog Carnival is “long nights and what we need to get through them.” Some of the longest, hardest nights of my life were when Jordan was just born. He insisted on being awake every morning from 2 to 6 AM, which really are the worst hours to be awake, if you think about it. I held him in his room in the rocking chair, looking out the window into the dark, feeling like we were the only two people in the world who were awake. Many of those nights I spent with him on my lap as I researched the condition he’d been diagnosed with—caudal regression syndrome (CRS). I found a MSN message board site that had all kinds of scary images of kids with CRS, and these kids had had their legs amputated. The photos seeemed especially scary because they were in black and white, and the kids’ eyes had black bars covering them, really depersonalizing them. I did notice some smiles on those faces and some very strong arms they were balanced on, but it was their lack of legs, of course, that I focused on. It was just horrifying to me, the thought of a doctor cutting off my baby’s legs.

In some people with CRS, their legs are paralyzed and have circulatory issues, and the person cannot straighten them. The legs are in a fixed “Indian style” position, which can’t even be straightened surgically. So the older treatment is to amputate the legs. This isn’t done as often today, although it is sometimes still done. Jordan’s doctor said, “I won’t do that” when I repeatedly asked him if that was what he recommended.

I do personally think the choice for amputation should be up to the person when he or she grows up. But I have met some people online who are now adults who had their legs amputated as kids, and they say that it was the best thing for them. Not focusing on the ethics of this—that is for another much longer discussion—but there I was, a new mother with a new baby, staring at these black and white images in the middle of the night of these kids with the same condition my baby has, and their legs had been amputated. How I got through those “long nights” I don’t really know, other than just the drive to do everything I could for my baby.

While looking at these photos on the computer and later sitting by his bedside for nine surgeries in his first five years, I’ve also pondered if this is “my fault.” The only “known” cause of CRS is maternal diabetes. They say 16% of kids with CRS have mothers with diabetes. That does leave 84% with no known cause. I do not have diabetes and was tested during pregnancy, too. But there is always the lingering doubt—did I cause this? It has been hard to think about women who take drugs, smoke, do whatever, and their babies are “perfect.” And I tried so hard, thought I did everything right, never took an illegal drug in my life, and my baby has this condition. And every time he has a procedure, these feelings come back to me—did I cause this? When he goes in for surgery, I think well, the doctor has to fix what I didn’t know how to do. I see friends and relatives having babies apparently without a thought that anything could possibly go awry. I’ve thought, “I didn’t grow him right” so many times these past six years. I know he is an incredible boy, and just thinking of all he has accomplished brings tears to my eyes. There are so many good things about it—“the people we wouldn’t have met,” the not taking things for granted, the cherishing the small milestones, life in wonderful Holland, right?—but this is a harder life than he really had to have.

So the answer to what it took to get me through these long nights? Early on, it was just determination, not wanting to fail my new baby—again. I think the humility that came from being 9 months pregnant with a broken ankle, although I was quite miserable at the time, gave me a little extra understanding. Later, I think I was able to get through these “long nights” just because of him—the spark I saw in his eyes, even when he was a newborn in the NICU and even though they told me he wouldn't live to age 1. His first real laugh, which happened in the middle of an orthopedic appointment at Shriners. His smile no matter where we were or what we were doing. His determination in taking steps with a tiny little walker, just months after surgery, when it seemed like he could barely move his legs at all. At ages 2 and 3, how he became quite a swashbuckler with his all-absorbing interest in pirates, swordfighting, jumping around, launching himself off his walker, and scaring me half to death. His determination on the soccer field playing against kids twice his size. And now as a first grader, the way he is the leader out on the playground, telling the other kids what they’re going to play that day, as he leads them around using his neon green crutches. I think it’s just been because of him that I’ve been able to do all of this. These little glimmers of hope, of accomplishments, of just being “back to normal” in our lives—these are what sustain me.

Disability Blog Carnival: Evidence

The July Disability Blog Carnival with the theme Evidence has been posted at Deeply Problematic. Check it out for tons of great posts!

Evidence

The theme of this month’s Disability Blog Carnival is Evidence. This comes up a lot for me, but I’ve never thought of it in that term. One example is providing evidence to parents of kids without disabilities that my son, when out and about walking with his crutches, constantly gets stared at. “But he is sooo cute—that’s why they stare! I’d stare, too, because he is sooooo cute!” is the main explanation I get. This makes me second guess it, too, because I know he is the most handsome boy who ever lived! Yet I still notice that when he is sitting down at a table and no one sees the crutches, no one is swooning over his movie star good looks. They only look up and have their eyes popping out of their heads when he starts to walk. They only offer alms for the poor handicapped boy ughghh and ask Jesus to cure him UGHGHGH when they see him walk.

Oh but wait, to them, he can’t actually walk. “Why can’t he walk?” kids often say as he walks by. When he used to use a walker, we’d get this question a lot: “Why is he WALKING with that WALKER? Can’t he WALK?” “Uh, he is walking,” I’d reply. “See him?” More evidence I must present—one foot in front of the other equals walking.

I also feel like I have to provide evidence that he is doing well, that no one should feel sorry for him or for us. That would be terrible to me, if anyone pitied him. So I have promoted him as being totally all good, well behaved, and happy at all times. Because if he isn’t happy all the time or if he misbehaves, won’t people think he “hasn’t accepted his disability?” That he “hates being different?” Won’t they think he isn’t that inspirational disabled person we all prize so much but instead is a “miserable cripple” who “hasn’t accepted his fate?” Well guess what, a confession—he sometimes has his meltdowns, too. But the meltdowns are not over having to wear braces or walking with crutches. They are about regular kid things like when we make him stop playing video games or when we tell him it’s time to go to bed.

Then at his school, I have to provide conflicting evidence. He just finished kindergarten, so last year I had to present evidence that he was capable of being independent in a classroom and throughout the school building. But I had to temper this evidence with his being too well off because we didn’t want to lose his physical therapy time. The PTs presented evidence that he was doing so much better than expected, that he is “extraordinarily functional for his level of impairment.” I felt like I had to tone that down somewhat and present evidence that perhaps his keeping active through PT and other exercise is what is keeping him so functional. It’s hard because I want people to know he’s doing well, but I don’t want them to think he’s doing so well so that we lose the supports that are perhaps contributing to how well he’s doing. Phew.

Overall, all this evidence providing is exhausting. I think sometimes if we didn’t have to do all this, what would we be doing? What would fill our time? Could we just exist in the world, not so much under the lens that we seem to be under from medical professionals, the school system, and the Stare Patrol? We are doing well but would do a lot better without all this pressure. I rest my case.

Disability Blog Carnival #65: Balance

Welcome to the Disability Blog Carnival on balance. I have been thinking a lot lately about how hard it is to balance knowing about issues related to my son's condition and his education with just treating him like a regular kid. It's easy to get wrapped up in what Kathie Snow at Disability is Natural calls "Disability World"--all the therapies, doctor visits, IEP meetings, etc. I recently saw Kathie speak at a 2-day conference, and as much as I loved what she had to say, I wondered if even attending the conference was being part of Disability World. I know I need to be knowledgeable, but I really need to devote my time to making sure my son has a "regular life" (whatever that might be). But then the more I think about creating a regular life, the less regular it becomes, in a vicious circle. Add this to the “regular” stuff of raising a child—who is intelligent, hilariously funny, creative, adaptable, adventurous, and outgoing—and it becomes hard to balance it all. Let’s see if any of the bloggers have solved the problem of finding balance.

Standing, Walking, and Dancing—It’s All About the Angles
At Wheelie Catholic, Ruth has posted Oh grasshopper! To achieve balance, you must get the right angle. She talks about literal balance, which means to her getting the angles right: “Achieving balance in my world usually comes down to angles. With limited grip and grasp, I often feel like a juggler in my kitchen. It's become second-nature to me to think of angles whenever I try to pick something up.”

Wheelchair Dancer has posted The Art of Balance: “Balance is such a literal kind of thing for me. I am aware of it every day -- in part because my personal life is one of such extremes that it is very unbalanced, and in part because, in my dance professional life, my ability to balance (or not) is crucial.” She describes balance while she is dancing, providing this eloquent description: “Frequently, I think we present or think about balance as a moment of held stillness, as a moment where you seem to stop motion -- perhaps against all odds.”

And TherExtras also discusses balance in the literal sense, as in standing, at Adaptations to the Environment. She talks about the benefits of using standers for kids who cannot stand without assistance. (TherExtras also invites us to participate in another blog carnival with the theme Childhood Expressions. Due... uh oh, today!! The carnival will be posted by April 25. If you can’t submit anything by then, at least check out the carnival when it posts!)

Figurative Balance
Spaz Girl at Butterfly Dreams writes about balance in literal and figurative ways at Balance, or Lack Thereof. She describes finding balance as “incredibly complex,” from walking down the hallways at school to balancing her work. And she ends with a hilarious last paragraph, reminding us of the importance of humor in balancing our lives. William Arthur Ward (known for numerous “inspirational sayings” such as “If you can imagine it, you can achieve it. If you can dream it, you can become it”) said about balance: “A well-developed sense of humor is the pole that adds balance to your steps as you walk the tightrope of life.”

Haben at Haben's Travel Blog writes The Shadow of Stereotypes about an incident when she fell down and faced "magnificent drama" by onlookers. Taking on the thoughts of many of the bloggers, she finds that there are both figurative and literal ways of thinking about balance and disability. This "can also be seen as the general struggle of people with disabilities to balance an identity as independent and autonomous individuals, and individuals who need a little help now and then," she writes.

At A Writer in a Wheelchair, Emma writes in the post titled Balance: “One of the hardest things for me to balance however is the judgement of whether or not a thing is a disability thing or not. It's led to me being accused of being too ‘disability centric’ at times.” This reminds me of my attempts at balancing “disability things” with “regular things” in my family’s lives.

Cheryl at Finding My Way: Journey of an Uppity Intellectual Activist Crip says she did not plan to write for this carnival but was inspired by Emma’s post above. That is so great, one post inspiring another, all for this carnival! :) Ahem… anyway, Cheryl says at her post titled simply Balance that she has a visible disability and an invisible one, and she finds it difficult to balance how to deal with both of them and how to let other people know about her disabilities.

Balancing a Career, Activism, and Disability
brilliantmindbrokenbody posts Balancing career and disability (part 1), writing “Part of the trouble is that the world outside tends to have an all-or-nothing perspective on work: either you can or you can’t work full time, you can or you can’t.” I look forward to part 2 on this important topic.

irrationalpoint at Modus dopens talks about the balancing act of being an activist and having a disability at Everything I ever needed to know about access activism, I learned in kindergarten. She is expected to always do more and more, and sometimes she must refuse for the very reason that she has a disability that causes fatigue.

Some Tips on Finding Balance
Finally, Terri at Barriers, Bridges and Books writes Balance... Yeah, It's a Problem, leaving us with some tips for finding balance. “Time for some reading, some writing and some socializing. . . . Because they just aren't as frivolous as they seem.”

Thank you for all the wonderful posts! I don’t think we have solved the problem of balance, but we have reflected on it in a unique way.

Next month's theme is Story at Barriers, Bridges and Books.