Monday, May 22, 2006

The light bulb lit, or "oh! I know about spina bifida!"

Today is beautiful, but not because it's sunny outside, which it is. Because there is a small incandescence beginning to glow brighter in the tiny light bulb I carry around right over my head at all times just in case I have an epiphany. It's really something of a warning to those around me that my thoughts may cause inexplicable reactions, like maniacal laughter, evil grinning, or perhaps the occasional ketchup bottle to explode. Most of my better ideas come from sitting at a restaurant table, not in the restroom as for other people, usually because I'm too busy reading the bathroom stall doors to do much thinking, but I can tell you that love (read *hearts*) is rampant in bathroom stalls! - for example, Kari hearts Jason, Cami hearts Steve, and "I" hearts everybody. Even Jesus loves us all in bathroom stalls, written out in permanent black ink that only dark colored paints can cover up.

No, today is beautiful -- according to my little incandescent lightbulb -- because I finally figured out what to write about. I was always taught "write what you know", but you know, I don't know anything!! All my reading, studying, imitating, teachings... they all tell me this, so I've struggled for years trying to validate me writing anything at all!

Well. Wonder no longer what I may be up to, because in 5 watt brightness, I figured out that I know something! and in 15-watt luminosity, I figured out that I know about life! Wait, wait, before you hit "next blog" writing me off as half-insane, let me explain:

I am a mom of two kids. At this moment, this is for note, not purpose. My daughter has spina bifida. This is of purpose. I know about being a mom of a child with spina bifida.

So what? What do you know? I know more than I can post in this one blog without putting us both to sleep, for starters. But let me give you a small tidbit that will justify your time spent here.

My daughter, who we'll call Em, cannot go to the bathroom "normally". She must be catheterized every 3-4 hours for the rest of her life. Overnight she sleeps with a foley catheter. Don't feel sorry for her; she doesn't. But because of this I've had a recurring nightmare since she was an infant. In the nightmare, I'm on TV, sniffling and wiping tears from my cheeks and begging for mercy.

"Please, whomever took my baby girl, please just get her to a hospital! Drop her off anonymously, I don't care, but get her to a hospital and tell them she has spina bifida and tell them she needs to be cathed!!" I cry into the camera. I can't convince them how important this is. I beg over and over "just get her help" and with each plea the lights in the studio grow dimmer and dimmer until it is me surrounded in blackness staring at a TV camera and I just know that the kidnapper of my daughter is watching me on the other end. The whole world is watching me, judging me, some hoping that lessons will be learned and others hating me for not aborting a handicapped child. But it's just my voice ringing out, even though my lips no longer move, repeating "just take her to a hospital, please, she needs to be cathed!".

About this time, my daughter comes in and asks "whatcha doin' Mommy?" in some form of toddler-speak or another, and I just stare at her like she's a plaid-haired alien. "You're supposed to be at the hospital!" I keep thinking, trying to make my brain reconcile her presence and health as a positive resolution to this nightmare.

I find myself using that same plea, but in different words, in much of my life. School, for instance. "She must be cathed every 3-4 hours, is your nurse familiar with that?" Or "Yes, she can come to _____'s birthday party, but only for a little bit, because she must be cathed....." She will grow old enough to not need anyone else's assistance with cathing, for those who are asking.

And many parents will understand this next statement perfectly, while others will think I'm overprotective. That nightmare is not contained to my dreams; I have it while I'm wide awake and we're out shopping and she leaves my sight in her enthusiastic youth. By the time she understands why I want her right beside me all the time, she'll have her own kids....

Other spina bifida links:
Pediatric Health Online; all about spina bifida
Spina Bifida Information Page, National Institute of Neurological Disorders and Stroke


Ginevra Fanshawe said...

I admire your strength and courage in handling what must be a very challenging situation.

To me you don't sound in the least overprotective. There's nothing more terrifying than imagining your child having to fend for herself somewhere without you. The emotional dependency is overwhelming enough. A physical need just heightens the panic. For me the trigger is food. I nursed both of my girls for a really long time, and so I couldn't really be away from them--or at least, I used nursing as an excuse never to leave them (I suppose I could have pumped like normal mothers). And even now they're very small for their age and particular about what they'll eat. My oldest, Alice, insists on drinking "tea" in the morning--mostly milk with a little bit of herbal tea and sugar. It has to be warmed up and served in a special sippy cup, and she insists on drinking it while cuddling with me in her bed. I know I'd be on the news explaining her "tea" to the kidnapper--it sounds trivial compared to your concern, but it just suggests that we're wired to believe that our children couldn't function without us (and our children are wired to think they couldn't, too).

Was your daughter diagnosed with spina bifida before she was born? I'm curious because I'm going through all those prenatal tests right now.

Margo Crawford said...

Yes, she was diagnosed prenatally. There was a planned c-section, a pediatric neurosurgeon-planned surgery for her, and then I went into labor early, and it all got fubarred. I was two weeks too pregnant to be eligible for in-utero surgery to repair the myelomeningeocele (defect) on her back, but there have been significant medical breakthroughs in the last 7 years.

Let me know how your tests come out, but know that no matter what happens, you are not alone. I've been there, and I'll be happy to impart all my knowledge and experiences, and there are other sources of support as well.

I hope that everything goes well for you and that your baby is nothing short of perfect.