I recently ended a Team Kennedy page update with the words "the end is in sight." And ever since, those words have been weighing heavily on my mind. In some ways, I truly believe that. I truly believe that we're coming to the end of a very emotional, devastating at times, exciting path in our journey. In other ways, I know that we have paths still to navigate on this journey, and other paths that we will discover in the future. So is the end really in sight? And what end am I really looking forward to?
When you're handed a baby in L&D recovery, you are overwhelmed with love and pride. When you're handed a baby with a medical diagnosis, you are also overwhelmed with caution, fear, uncertainty, and sadness. But within an hour of that medical diagnosis, I was also promised an ending, one that ended with an ear. A promise that the most visible reminder of this somewhat-complex medical diagnosis could be fixed, could be perfected. And honestly, I've held on to that promise for ten years.
One might wonder what the big deal is about an ear? Why make your kid suffer just for an ear? Are you really that vain? Some people live their whole lives without a body part of some sort. Some people have it a lot worse than your child.
But here's the deal. For ten years, I've had to watch my baby girl endure laughs, stares, whispers, rude comments, people pointing in her face, everyone who goes by giving a second glance, pointed questions, and assumptions that she also has cognitive challenges. Ten years. Think about what that would do to your self-confidence level. Think about what that would do to your soul. And you're an adult. Now think about what that could do to a child. A shy, quiet child. When I talk about an end in sight? This is what I want to end. Because after ten years of watching it, it just gets to be too much.
Don't get me wrong, Kennedy handles all of this and her self-confidence is building every day. But her defense mechanism is to ignore it all. I'm the one reminding children and adults alike that it isn't nice to stare or whisper about people standing next to you. I'm the one worrying in new situations about what's she going to face. I'm the one answering the questions. I'm the one worrying about her because even though she "ignores" it all, I know she realizes it all, sees it all, and internalizes it all. And even though I know that dealing with this on a daily basis has led to how strong of a person she is, she shouldn't have to be that strong, dammit.
So yes, I'm looking forward to this whole process being over. Our first ear reconstruction ended with a severe infection that ate all of the implanted cartilage. I literally hit rock-bottom after that one. Our second attempt at ear reconstruction ended with MRSA and removal of what would have been a very cute ear. Those close to me know how devastating that was to all of us and the guilt that I still carry because of it. And now with our third attempt at an ear, a prosthetic ear, we are well on our way to ending this quest.
And I'm looking forward to reaching the point where she can just be Kennedy, with or without the ear as she chooses. She will have the option and that gives both her and I peace of mind. And I'm looking forward to ending this whole balance game of convincing her that's she is beautiful just as she is and she will be beautiful with an ear too. And I'm looking forward to not having to defend my decision anymore of moving forward with this, causing all of this medical drama in her life.
But what I'm really looking forward to is the end of the stares, the laughs, the whispers, the assumptions. I'm looking forward to not seeing the anxiety or sadness in her eyes as she "ignores" the children and idiots (i.e., adults who do this) around her. I'm looking forward to seeing if she decides life is better with or without an ear. I'm looking forward to watching her have a tool to become more comfortable with herself in social situations. I'm looking forward to the end.
So even though we have many paths yet to go, and some that we probably even haven't discovered yet, the end of THIS path is in sight...
