I can't believe you turned 5 today! Even though you don't live the life of a typical 5 year old, your life is pretty amazing. The fact that you are here, and that you are mine is all I need. You have taught me SO much and you have open the eyes of so many. Being a special needs child or a child with disabilities doesn't define you. You are always smiling, you are always willing, and you are always fighting this huge battle that no child should have to.
Every time you get pushed down you fight to get back up. 8 months ago you couldn't bare weight on your legs without spasms taking over. You were unable to swallow safely and had surgery to place a tube in your stomach so that you could eat. You couldn't lift your arm to itch your nose, and you couldn't tell me that you loved me. In 8 months you have bared weight on your legs and with assistance were encouraged to walk. You have started to safely have foods placed in your mouth and re-learned to swallow. 99% of your food is via feeding tube but you are okay with that if that is how it has to be. You have began to lift those arms again, and I heard you tell me you loved me. I love hearing you say that! A few days ago I heard you laughing so loudly in your room. It was about 4:45 in the morning. I peeked in on you and you had used your bed rails to pull yourself to sit up. You were so happy and you were laughing about your achievement. It was amazing to see you do that!!
I often think that if there was a way for me to take your burden, how I would do it in a tenth of a second, so you could live the life of "normal" child. I don't think I would have your willingness or strength to fight as you do. I don't know if I could be as strong as you are. You have taught me more then I could ever explain.
You are the happiest little girl I know. I remember when I was first told of your disease and how much I cried. I tried to not cry in front of you, but the tears would get their way. You would come up to me and tell me, "don't cry mom, be happy like me." I will always remember those words you said to me. I want you to always remember how much I love you and how very special you are to me and to everyone that meets you and learns your story.
We know the pattern your disease has and we know that you may get knocked down again. Your dad, family, friends, dogs, and I will always be there to help you get back up and fight again. You keep being the wonderful sweet you that you are Hailey. I love you more then I can ever express. I will try every day to be happy like you!
HUGS and Kisses