Bounty of Womanhood

Earlier this year a 17-year old girl collapsed in the middle of drill team practice at one of our local high schools. She was pronounced dead at the local hospital an hour later, victim of a heart attack. The underlying cause for somebody so young and in such good shape dropping dead at the snap of a finger was something call mitral valve prolapse, a genetic abnormality.

The autopsy results hit the local papers within the week, and it was revealed that the family had known about this condition since she was a little girl. And I was reminded that we have a ticking time bomb of our own at our house. One that has similarly difficult decisions to make about the direction her life takes, and how long it lasts.

This girl’s parents obviously looked at the risk of their daughter dropping dead, which even doctors admit with the mild and surprisingly common condition in question is absurdly low, and decided not to limit her activity. A risk we look at now as foolish, but given the commonplace nature of the condition it is not just possible but likely that one or more of this young lady’s drill team-mates has the exact same condition. 5 to 15% of us may have this abnormality, and it may linger completely unnoticed for the rest of our natural lives, never affecting us in the slightest or contributing in any way to our death.

But these parents did know. And the question becomes, if there is a 1 in 1000 chance that your child will have a traumatic heart episode as a result of this condition, do you let that child participate in vigorous exercise like drill team?

For us the question is slightly different, but the stakes are just as high, arguably higher. Our daughter has a severe disability called Osteogenesis Imperfecta, but known commonly as brittle bone disorder. She is only the size of a 5-year-old, despite being 14. She has just begun enjoying the bounty of womanhood, as I am wont to say, meaning she has “gotten her period.” Nothing scares me more on the face of this earth.

Our daughter will not grow much more. She weighs about 50 pounds, she’s less than four feet tall, and to give you a bit of perspective, her legs are just now strong enough to bear her weight. She walks with a walker for exercise, but her primary mode of transportation is a wheelchair. Plus, go to the kitchen and get a clutch of dry spaghetti about as big around as your thumb. Now take it in both hands and snap it in the middle. The amount of force you used to break that spaghetti would break any bone in my daughter’s body.

Now put a baby in her womb, wait four months, and make sure you have all of the funeral arrangements in place. If she gets pregnant, she will most likely die before the baby can go to term, and on the off chance that the two of them do survive until delivery, childbirth will kill her just as sure as if she put a gun to her head and pulled the trigger.

I have to admit, I wanted my wife to sit down and talk with a doctor about removing her ovaries, or tying her tubes, or doing whatever would surgically prevent her from becoming pregnant no matter what she wanted. 51% of me says that’s not my place, and how dare I: the other 49% says it can still be done. And it’s a tough fight trying to keep it from getting that extra percentage point.

So what do you do, as a parent? How do you tell your little girl that she will most likely die if she ever tries to have kids of her own? And what do you do to instill the fear of God in her, hopefully taking away any to-hell-with-you-guys-I’ll-do-what-I-want urges she gets as a rebellious newlywed?

I tell you what I did. Made her watch “Steel Magnolias”, didn’t tell her what it was about before she watched it, then drew some not-so-subtle parallels between her and Julia Roberts’ character. Next words we heard from her on the subject were, “I think I’m going to adopt.” Hot damn.

Now, there is also the surrogate route. And in fact, my wife being as young as she is, and as easy as both her pregnancies were, there is a strong possibility that if our daughter ever wants an actual biological child, her and her husband could do the IVF thing with her mom as a surrogate to carry the baby. Grandma gives birth to grandchild, the frequency with which that happens these days it isn’t even news anymore. Plus, there’s no debate that my wife will spoil her other grandchildren. But if she carried it for 9 months — Lord, that kid would never be without gum in its mouth and a dollar in its pocket.

These are the things that keep me up at night. Or more to the point, they are the things that are repressed in my subconscious, eating away at my soul as I sleep — each morning a day closer to when this decision is staring all of us in the face, with a tiny, helpless, immature and impulsive girl calling the shots. For the moment she’s on the right path. Let’s hope she doesn’t stray.