Decisions. Some are easy, some are just damn difficult. But they must be made. I’ve made my fair share of major, life-altering, difficult decisions in my lifetime. Some have been right, some have been wrong. No matter what, the simple act of making the decision usually brings peace…the decision has been made and so be it. But that isn’t always the case.
In my 35 years, the most difficult decision that I’ve ever had to make is to decide what my child’s face should look like. Why should a mother ever have to decide such a thing? Let me answer that…NO MOTHER SHOULD EVER HAVE TO DECIDE SUCH A THING. For eight years, I agonized over the decision. For eight years I found new doctors to consult, conducted hours of research, explored all of our options. For eight years I weighed the pros and cons of “doing something” vs. “doing nothing.” For eight years, I struggled with the balance of letting my child know she is perfect how she is yet talking about options to make her change what she looks like. Then I made a decision.
I found an awesome doctor (truly awesome…I wonder where we would be in all of this right now without him). I decided that “doing something” before Kennedy enters middle school would be best for her self-esteem. We came up with a plan. Then I fretted. And worried. And dreaded implementing that plan.
Then last October, that decision became reality. After Stage 1 of ear reconstruction, her new ear looked awesome. I finally felt vindicated in the decision that I made. After eight years of thinking through the options, I knew we had done the right thing for Kennedy. I was at peace.
Almost three weeks later, that decision came crashing down in a million pieces. A fast-moving infection swept through and ate all of the grafted rib cartilage and a hole through the ear (which fortunately, ended up saving her life by giving the infection an external drain site). Sitting in that doctor’s office at Duke, one of the world’s leading hospitals, I hit rock bottom. No one will ever understand how I felt that day. The decision that I had made was now just a mistake. Who was I to think that I should be deciding how my child’s face should look?
Then on the way home, I heard these words from the backseat, through sobs, “Mommy, remember what Dr. Marcus said. We can fix this. It isn’t the end. I can do this again. It wasn’t that bad of a surgery.” Who was I to hold the trust of this amazing little girl? Who was I to make this little girl be my comfort? My job was to comfort her, not the other way around.
On a Sunday afternoon, Dr. Marcus called to check on us, to reassure me that it wasn’t the end, to let me know that this affected him too. That one phone call, from a busy plastic surgeon, on a Sunday afternoon, is one that I will always cherish. And because of this amazing child, and because of this awesome doctor, I made the decision again…if at first you don’t succeed, try, try again.
Which brought us back to the operating room a couple of weeks ago. Stage 1 plus Stage 2 ear reconstruction. All precautions taken, all systems go. Her surgeon was positive after the surgery…but a mother’s intuition can go a long way. I had a bad vibe, although kept it to myself in hopes that I was wrong. So when a week later we get the news that part of the skin graft wasn’t taking, I wasn’t surprised. Disappointed, yes. But not surprised. And now, I again question the decision. As we wait. And wait. And hope for a happy ending to this journey. This is our last shot at this type of reconstruction. If not a happy ending, I don’t know where we go from here. I don’t know how I find the strength to make another decision.
Someone recently made a comment to me that if it doesn’t work out, at least it is only cosmetic surgery. And I’m sure there are others that don’t understand what the big deal is. But we’re not talking cosmetic surgery here. We’re talking about confidence, self-esteem, stopping the whispers and stares and laughs and harsh words. We’re talking about quality of life and happiness. We’re talking about a little girl who just wants to look like and be treated the same as other little girls.
Unfortunately, this isn’t the end of the difficult decisions. Up next is her cheek/smile and then her jaw, with a spinal fusion thrown in somewhere too. In some ways, I look forward to the day when Kennedy can make her own decisions about such things. In other ways, I don't want her to ever have to make such difficult decisions. Someday, I hope she can appreciate the decisions that have been made for her. But no matter how any of this turns out, her sweet little face is a face that I will love and cherish forever.
I don't even remember writing this but looking back, a few things strike me:
1. I should have trusted my intuition and skipped the whole second reconstruction. Okay, I don't mean that...it should have worked and would have been great. But it makes me realize even more that trusting my instinct is usually a smart move.
2. Just when you think things can't get any worse, they can.
3. A turning point was reached shortly after this was written. After all that Kennedy went through, I couldn't make any other decisions regarding her ear. Although I think it was the right decision to make, the prosthetic process path that we're currently on was Kennedy's sole decision, her own choice. And forever and always, I support her 100%.
4. This little girl is more amazing to me everyday in her strength. She is truly my hero.
