November 4, 2003
Hi Everyone:
I just want to share with you that Jack celebrates his 5th birthday today. If you had told me five years ago that Jack wouldn't walk, talk, eat or breathe on his own at the age of five, I think I would have crawled into the nearest hole and died. In the beginning of this journey, we all had so much hope. I, along with Jack's doctors, nurses and therapists worked so hard to achieve independence for Jack. Independence from the wheelchair, the feeding tube and most of all, independence from that damn ventilator. But, despite all our hard work . . . it's not to be.
Today, I have new hopes for Jack. I hope that every morning when he wakes up and every night before he closes his eyes, he feels safe and knows that he is loved. I hope that his days on this earth are lived without pain. I hope he achieves a way to communicate his feelings and desires to others. I hope he stays healthy. I hope he accomplishes all that he is capable of.
As for me, my idea of happiness has changed considerably. I'm happy to only have to suction Jack 10 times a day, rather than 100. I'm happy if he only pukes once a week, instead of every day. I'm happy when the DME company gets my supply order right the first time. I'm happy to never see the inside of a PICU again. I'm happy to see his contagious, beautiful smile. I'm happy to hear him laugh. I'm happy if he's happy.
It has taken many years, a lot of tears (and an occasional Xanax :-), but I have finally come to accept that Jack will always be who he is today - wheelchair, feeding tube, vent and all. With this acceptance, comes freedom. Freedom from always pushing him to do what he isn't physically capable of doing (he's so thankful for that). Freedom from always having to be in control (well, most of the time). Freedom from wanting to have an answer to everything and, most importantly, freedom from having to know Why? With freedom, comes peace.
Okay, this is getting way too profound. For those of you that are still with me . . . on a lighter note, it has been said:
"Life may not be the party we hoped for,
but while we are here we might as well dance"
So, Jack and I are going to dance the day away ~
The last five years have not been easy for sure, yet, I consider myself lucky because I've met so many remarkable people along the way. I feel truly honored to be the mom of such an amazing and inspiring little boy. Thanks to each of you for being part of our journey these last five years.
Ann
