Tuesday, February 08, 2005


In the pregnancy book I pored over every night while we waited for Annika's arrival, there was a chapter called "When There's a Problem." The author recommended not reading the chapter if all was going well, lest my hormone-addled brain be filled with unnecessary worry.
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Of course I read it anyway. But most of the parenting and pregnancy magazines stuck closely to the picture we had mentally painted ourselves, in which the sleepless nights with a newborn were going to be our biggest hurdle.

When Annika was born, we believed that she was perfectly healthy for exactly four weeks. And then, in the span of a short 10 days, we were forced to readjust our idea of family life as we handed Annika off to surgeons for the first time. That jump from living life as we read about it in a magazine to the forbidden chapter left us, and most families I've spoken to about that time, feeling incredibly isolated. But most of us eventually turn to a local or on-line support group, and soon realize that, just because we didn't read about kids like ours in the pages of most of those magazines, they are out there, and they are really some amazing kids.

And we also come to know that there are also other parents/brothers/sisters who understand the despair of the low times and the joys of the good times. Parents of kids with major "issues" are among the most cautious people about saying "I understand what you're going through..." to anyone, because they have seen that loss and sorrow come in millions of shades, each heartbreak uniquely distinguished by the individuality of the family members involved.

When we were first discussing transplant with a surgeon (not the one who eventually did her transplant), we asked about quality of life for her after she was transplanted. He brushed the question aside, literally waving his hands as if to shoo such petty concerns aside, "Normal life! Perfectly normal!" And that was the end of the discussion for him. I can only say, Thank God for support groups. Talk about not understanding the dynamics of life post-transplant. I guess I have heard of a few kids who received their liver, and then went on to live life as if they had just been to the dentist to have a few fillings in; they seem almost mythical creatures. I mean, even under the best of circumstances, they are usually still taking some pretty hard-core drugs that mean normal childhood illnesses can lead to some really nail-biting times.

I can't say that Anni's life is not "normal," whatever that means anyway. Normal is one of those terribly relative terms. I do know that not many of her classmates at preschool doctor-play includes placing NG-tubes, I.V.'s, or holding still for a gas mask. I doubt that many of them have burst into tears while playing at the sudden thought of returning to the hospital. I doubt that many of them will turn into teenagers, sullen at their parents for insisting that she takes her med's 5 times a day (will there be fewer then, finally?) with all their unpleasant side-effects. I wonder if any of them are as worried about death as she is now, at age 4.

But I'm not so naive that I don't know that it could be much harder, or that all kids have their own worrisome moments that give their parents pause. Instead of wondering about "normal life," with all its unpleasantly sticky associations, I prefer to note that Annika has an extremely happy life. In the end I think this is a much better way to think of our kids' lives, rather than how many standard deviations we are away from some mid-line value on somebody's quality of life scale.

Nonetheless, we all have our low moments, when it feels so unfair to see our kids go through whatever particular hard time they are facing. And then the support groups can be invaluable, because sometimes you just need to vent and hear back from someone, "Yes, that just completely sucks." And not just from anyone, but from someone who really knows just how much it really does suck. But sometimes, the best part of the support group is hearing the stories of the kids themselves.

At my particular support group, C.L.A.S.S., it's been a rough week. So many of the kids are sick, and some of them have just been through nightmarishly harrowing experiences--brain bleeds, transplants that failed spectacularly, perforated bowels, esophageal bleeds, bacterial infections. And suddenly you find yourself logging on obsessively, but warily, worried that some fresh bit of bad news is waiting. But then you read something one of the kids has said or done, and you can't imagine living your life any other way--it is just that fantastic. One of the moms wrote about her daughter's brain bleed on her Caring Bridge page, the Feb. 6, 2005 entry. It's worth clicking over and reading the whole thing, but my favorite part was Haley's response to the neurosurgeon who warned that her sense of touch might be lost with another bleed: "As long as it's not my fashion sense!" And soon after absorbing all the bad news, she was thinking of developing a website to send hats to kids who have lost their hair (her hospital tip? "Never let a neurosurgeon cut your hair.").

Everyday our kids do and say amazing stuff, and even when times are the worst. So my question to you all is this: Do you have a story to tell about a bad time that found you looking in amazement at that little wonder, your own child? It doesn't have to be a dramatic event like Haley's. There are lots of challenges every day that our kids face, giving them the opportunity to wow us with their responses. Write it up! I'd love to hear about it.


Blogger Laurie said...

If it weren't for the moms at CLASS, I'm not sure I would have made it this past year! I love to read your journals...you're so much better than I am at putting what you think on "paper" without rambling!

7:03 AM  
Blogger colleen said...

As a regular on CLASS I can contest to the fact that they are a great group of people. I came to them after my daughter Sarah had passed but I was welcomed with open arms. Many thanks to all.

9:16 AM  

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