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.

Theme for April Disability Blog Carnival: BALANCE

I'm proud to be hosting Disability Blog Carnival #65 for April. The theme is balance. How do you find balance in your life--with your family, job, school, home, time for yourself? What works for you and what doesn’t? How do you feel when you are in balance? How do you feel when you aren't?

You can also think of this as literal balance, such as how I am so clumsy yet my son using crutches rarely falls down. Penny Richards from Disability Studies, Temple U. says that she sees balance as a caregiver issue, too. She says she exercises not for strength but to increase balance. She knows that when carrying her son, she "just can't afford to fall. Ever, not even once."

Submissions are due April 19, and I'll post the carnival on April 22. Leave your link as a comment here, email it to me, or send it to Penny. I look forward to receiving lots of great posts, so please participate!!!

Holidays

Since having my son, or actually since before even having him, my holidays have changed profoundly. When I was pregnant with him, I had a lot of bleeding in the first few months, and every day, every minute of the day, I thought I was losing him. It was right before Christmas, December 15, 2003, that I had my first ultrasound. I had had a miscarriage a year and a half before and was terrified of going through that again. But this ultrasound showed that he was there and that his heart was beating. I remember standing on the sidewalk outside of the hospital, looking at my first photo of my son, crying in the cold wind, hoping I would be able to see him be born alive.

That same Christmas, just a few days later, we had our big annual family Christmas party with all the aunts and uncles and cousins. I spent half the party in the bathroom bleeding, thinking for sure I was losing him, crying as I heard all my cousins’ many kids running around, being noisy, being kids—kids like I’d never have. But the worst part was overhearing my father complaining to my cousin that he didn’t have any grandkids yet. He actually did have one, only I was bleeding him out.

But my son did survive and was born, the following July. The doctors weren’t sure what was going on with him and told me “mental retardation, heart problems, and die before age 1.” But he did live, and he has a “normal, healthy heart,” the cardiologist told us months later, and he is very bright. But that first Christmas with him, when he was 5 months old, was bittersweet. I knew by then that he didn’t have the condition that would have caused him to die before age 1. But that dire prognosis was never far from my mind. It never really went away—and that feeling of being so close to the brink never has gone away, even 5 years later.

Now things have calmed down, and even though he has had eight surgeries so far, his doctor visits are less frequent, and he's doing really well. He is thriving in kindergarten, making new friends, reading and writing. But every year when we have that family Christmas party, I take a moment to pause, close my eyes, and listen to the excited sounds of all the kids right before Christmas, talking about what presents they are hoping to get. And I make out my own son’s laughter in that crowd. Now he is just here, a kid like any other, a part of our family among all the other kids. But I will never forget what it took to get us here.