This post may be a bit scattered but, well, so am I. It's interesting how life draws its little parallels. It's the start of basketball season for many in my circle. Everybody is going through the first few days of tryouts, shaping their teams, gauging potential, seeing what fits and what doesn't. After cuts, there is the inevitable run-in with angry parents, frustrated teens as well as the occasional moment of regret where one questions decisions they made.
Today I got to think about amputating part of my daughter's leg.
For almost four months we have been blessed to watch Emily grow into perhaps the most beautiful little person I could ever imagine. Her smile is positively infectious. Even when she furrows her brow and looks around in angered confusion, it's enough to draw giggles from anyone in the room.
But there's that leg.
We've known about it since she was two hours old. Proximal Femoral Focal Deficiency. Never heard of it before. Never cared that it's completely random. Of all the things I thought might happen to this baby, this wasn't even in the top 50.
Three months ago, a trip to the orthopedist's office resulted in discussion of the possibility of multiple, painful leg-lengthening surgeries. Or amputation. Nothing you can do now. No hurry. Just go home, enjoy your daughter and we'll see you in December.
Today wasn't much different.
He asked some questions. He poked and prodded and measured. He said things like "significant discrepancy" and described surgeries as "heroic." While I wasn't expecting a Christmas miracle, well...I don't know if I can finish that sentence.
If I may dispense with the feeble literary attempts, I can tell you we're not much better informed than we were this morning. Doc says when he first started practicing, this would have been an automatic amputation. Right now, the difference between her two legs is approximately seven centimeters, with a projected difference of 20 centimeters, or, just under eight inches. The average leg-lengthening surgery can add five centimeters at a time, followed by a grueling rehab process. Surgeries could begin around age four or five.
There is also the previously unknown option C. This involves fewer lengthening surgeries, but then shortening the good femur by a couple inches (something done on an outpatient basis.) In the end, she ends up a bit shorter than she would have been had we let her grow to all her Tredwellian glory. Think 5'8" instead of 5"10.
Or we can amputate.
I say 'we' like the knife is in our hands. Because, and let's be perfectly honest about this, in many ways, it is. She certainly can't decide for herself right now. Would she ever be able to make such a decision? Would I? Would you?
There are no do-overs here. No re-takes. Maybe we decide to give her a fighting chance and try the lengthening surgeries. She struggles through the rehab. It's excruciating. She guts it out because she's already stronger than all of us. She grows to be one of the most beautiful, thoughtful, determined people you've ever met. She's already faced her toughest fight. The rest of this shit is easy.
Maybe we decide to give her a fighting chance and try the lengthening surgeries. We listen to her cry as she spends months recovering from the operations. We look at the pain in her eyes. We decide it's not worth it and we amputate. She grows to be one of the most beautiful, thoughtful, determined people you've ever met. Yeah, I've got a prosthetic leg. Pity me at your own risk.
But what if we're wrong? What if we amputate and there's a sudden breakthrough in surgical techniques or stem-cell research? What if she wanted to keep fighting? What if we're wrong?
Parents make decisions every day that their kids "hate" them for. You can't see this movie. You can't go to this party. You can't take the car.
What if we're wrong?
The doctor set another appointment for April. We'll take another ultrasound or x-ray and we'll revisit our options. Perhaps we'll even start to set a plan in motion.
Four more months to think it over.
1 comment:
I love you.
MOM
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