Tuesday, October 12, 2010

More Than A Diagnosis

When I look at Oli I think of him as my super sensitive 3 year old who, like his mommy, needs his freak out moments almost daily in order to keep his emotions in check. In him I see a caring, loving, smart, funny little boy, who loves his little brother and is wise beyond his years about what his little sister will be going through, even if he doesn't quite understand. He will share his toys with Athan, even though anyone can see how hard it is for him to do what he thinks is right instead of what he really wants to do. And when we tell him he doesn't have to share his toys with his brother all the time, he says its okay... Athan can have "it", even though it's clearly tearing him up inside. At times he's more rational than JR and I put together. He's profound. He's emotional. He's a gentle soul.
When I look at Athan I don't see a COA (Coarctation of the Aorta) baby. I see a free spirited, march to the beat of my own drummer- scratch that- march to the beat of my own band, fearless, two year old. I see mischief in his eyes and mayhem in his path. He's more stubborn than any human should be allowed to be and he's down right ornery. But, he has a kindness deep inside him, that when it makes it's way to the surface will melt anybody's heart. He is nothing short of life. 
So, why is it that when I think of Jillian, all I see is doctors appointments, surgeries and trips to the ER? Why can I only think of the things she won't be able to do and not the possibilities she will have in front of her? Why is it that when I look at her clothes I somehow manage to see past the fabric and only think of the scar on her chest that they will be covering? Why can't I picture her as more than just a Hypoplastic Left Heart Syndrome baby? Why can't I see her as more than just a heart kid? More than a diagnosis... 
Last night I took a few minutes to just lay on my bed. To just take some time to relax for a few minutes. Jillian gave me a nice hard kick, almost to say, "Hey Mom! I'm here!" And for the first time in the last five or six weeks I let my mind wander beyond her diagnosis. I let myself think about her and not that she'll have a scar on her chest. I let myself wonder about what her personality will be like- will she be kind and sensitive like Oli? Or maybe she'll be like Athan- too busy living life to think too much about the world around her.
It's like that one little kick reminded me that she is more than just a diagnosis. She's more than heart disease. She's our daughter. Oli and Athan's sister. She's already loved by so many. And she will be a fighter. She's our little Jilly Bean. 

1 comment:

  1. Sweetheart, I know EXACTLY what you are going through. Before my sweet Penelope was born, I couldn't even see any kind of future for her or me. And again before her surgery last week, I was so petrified that she would die I couldn't even hope for any kind of future. I don't know what the answer is, but I do know how you are feeling.