Thursday, May 25, 2006

It Ain't Over Til...Well, It's Over

Did I tell you I'm in a book club now? Yup - a book club. For moms, no less. We've only met once so far, and it's a small group, but they're really nice women and we seem to get along great and enjoy our discussions.

So, for this month's selection, we're reading Daniel Isn't Talking by Marti Leimbach. I'm only about half way through, but I'm loving it! Basically, it's the story of a woman raising her two small children, one of whom has autism. The book details her struggles with teaching him and socializing him. It also tells of what kinds of support she finds (and doesn't find) in her family, friends and professionals. Both heart-wrenching and heart-warming - it's a truly great read!

The book did get me thinking though (as any good book should). The story makes me realize, Gee - you just never can be sure, can you?

I mean, you give birth to a beautiful little baby, all 10 fingers and 10 toes in place; a healthy cry, and a beautiful, rosy complexion. She's here, you think. We've done it, you say to your partner. We've brought a healthy little baby into our lives. That's all we really wanted. Big sigh of relief, big rush of new, unconditional love. All is right in the world now that baby is here in the flesh.

But you know what? Maybe everything's not alright. Maybe within a few days, weeks, months or even years you'll find out your rosy little baby is not as healthy as first believed. She's not thriving like she should be. She's not gaining weight as fast as others her age. She's not getting over her cough and cold very fast. She's not hitting many of the developmental milestones that she's expected to reach and surpass as she grows. She's just... not.

Such is the case for the protagonist's son in my book club book. And such is the case for a good friend's brand new baby daughter.

Not even one month old yet, little Annie*'s parents just got the results of a brand new newborn blood test. Little Annie's cells show the mutation for Cystic Fibrosis. Further testing confirmed - little Annie does in fact have Cystic Fibrosis (as opposed to "just" being a carrier of the chronic condition).

We've all been waiting for Annie a long, long time. Her older sister - presumably healthy, by the way, but now she too will have to be tested for CF - just turned 6-years old. Annie has come into the world after at least 3 miscarriages - each showing progressively worse development and health of the fetus - left her parents feeling saddened, stressed and disheartened that they'd never have a sibling for their only child. Yet here she is, finally. A beautiful, smiling, rosy little bundle of love.

Understandably, Annie's parents worried throughout the pregnancy that baby would be healthy. Even extensive prenatal tests showing the healthy, normal development of baby were not enough to absolutely settle their minds that all would turn out well this time. Annie's mommy, in fact, commented often that she would not be able to relax and feel confident until baby was here in her arms, healthy and happy.

Well - that day came. About 2 1/2 weeks early, in fact. Annie was born and she was perfect! Totally healthy, good cry, good color - simply perfect. Happiness, relief and joy became the order of the day. After so much sadness of previous loss - finally, a healthy baby sister for their older daughter. Everyone could finally relax.

And then, weeks later - the phone call. Cell mutation in the form of CF. Does she have it? Or is she a carrier? Yes, she has it.

Shock, anger, sadness, hurt, disbelief. How could this be? What more could this family be put through? Why them? Why can't little Annie be as completely healthy as she appears to be? Why?

Courageously, these friends of ours are very strong, spirited and spiritual people. They are fortunate to have a large, loving family and close friends to help them through, not to mention a top notch team of doctors working on Annie's case, helping them to understand what her life will be like and what they must do to ensure she leads a healthy, normal-as-possible, long life.

An email from my friend (Annie's mom) yesterday not only updated us on Annie's condition but also showed the positive, strong outlook the family has regarding staying on top of Annie's care and helping her grow into a happy, normal life. Who knows why this has happened, but it could be worse, they know. They will get by and life will be good, they know in their heart.

But, really... it all just goes to show.... you just never know. And just because a pregnancy is over, doesn't mean the troubles, worries, and life hurdles are over at all. Not by a long shot. It brings home the point - you've just got to live life to the fullest and jump as high as you can over the pot holes and pit falls life is sure to throw at you along your journey.


I changed little Annie's name here, just because it feels like the right thing to do. Also, I do not pretend to understand what CF is all about. Please visit The Cystic Fibrosis Foundation if you're interested in learning more about this chronic condition.

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