How can I possibly find the words to tell you how much I love you? You are now 20 months old. I often look at your pictures and it literally takes my breath away how beautiful you are. And looking back through your pictures, I remember thinking how sad I was for you and how bad I thought you had it then. But comparing your struggles then to your struggles now, I know that this is a battle that will only get harder for us. Harder for you, because this awful disease is taking over your body… keeping you from being a normal little boy, causing you so much pain, and holding you back from a life that you deserve. And harder for me, because this awful disease is consuming my precious little boy. Each day when I look into your eyes, I feel so guilty. Not because I think that it’s my fault that you are suffering, but I feel guilty because I am healthy. I have perfect eyesight, I have healthy skin, I have my fingernails and toenails, and I can breathe easily without having to struggle for every breath I take. These are so many things that so many of us take for granted every single day.
I look at you all the time. You don’t see me staring because you are usually sleeping, or have your eyes closed. But when I look at you, it’s such a crazy, overwhelming feeling. I want so bad to be able to throw you up in the air, or take you out and show you off to the world, and mostly to be able to see you running around destroying the house like a little tornado. But instead, I see the little boy that I brought into this world… laying with his eyes closed and suffering with each bath, diaper change, and suction. Why should a baby have to suffer the way that you do? But you know what else I see when I look at you? I see a hero. My hero. A little boy who gets up each morning in excruciating pain, who is frustrated and irritable- but never gives up. He fights with each bandage change, each suction, and each breath. And when you feel good and finally get the chance to smile and show your personality, you light up my life beyond belief. Even at your very young age, you are setting a true example of what life is really about. I know that you have already touched so many lives and I can only hope that you will continue to touch lives for a very long time.
There are very few people who actually see the struggles that you face day to day. Some can pretend to understand, but even as your Mommy... I know that even I cannot fully understand the pain and suffering that you have to endure. No one ever will. All we can do is learn from you... and be better people because of you. Because there are not many living beings who could be in your position and still fighting for their life. Your little body is so frail. You are supposed to be running and jumping around, but instead your naked little body looks like you're still about 8 months old. But you are so innocent. You have no idea that you are the most special child I know. Your little smile... it radiates the room and everyone in it.
I am SO proud to call myself your Mommy. I am forever a better person because of you. The struggles that we face together each day are so bittersweet. But I wouldn’t trade a single second of all the joys and the sorrows that we have shared- because we've shared them side by side.
I love you baby boy.
Just thought you should know that.