A thankful day

Some of you may already know that I am a member of a few online support groups, which have been unbelievably helpful throughout Lucy's life. Without the help of some of the dear friends I have made through those groups, I don't think Lucy would be as healthy as she is today. A pretty large number of people have blogs that they keep regarding their children and I try to follow them very regularly because things with these kids always seem to feel like a roller coaster- just constant highs and lows on a dime's notice.
Quite some time ago I came across a little boy named Sully(roughly the same age as Lu), who has cancer. His parents weren't members of any of my groups(obviously, his disease is WAY worse than what we deal with)but his site was passed around and made its way to one of my boards. I have followed his blog for a while now( www.sullivanfarrar.com ), hoping and hoping that he would pull through. His parents were very very regular about posting, so it was easy to keep up with everything as it was happening. Well, unfortunately this morning Sully passed away.
I cannot imagine the agony his parents are in. God, I hope to never have to live through an experience like that or know someone who has to go through an experience like that. They have spent the last 15 months living and breathing a quest to make their son better and in the end they still lost him. They gave up their lives for the last 15 months for their son. Now they have to go home to an empty crib and pack up his toys.
I don't think I could live through that. I don't know if I could get up everyday and fight for my child's life, never knowing if he/she could make it. It would take an incredible amount of strength as a parent to put your own fears and devastation aside to support and carry your child through such an experience.
Recently I have felt down and just rotten about our situation with Lu. Things haven't gotten any better over the last 19 months and don't show any hope of getting better anytime soon. Its safe to say this is our life and will be our life for quite some time. I can find 150 things that "regular" kids do that Lucy cant because so many things can risk making her sick. But I need to be thankful for the good that we DO have in our life. Even our worst days are probably better than Sully's best days over the last 15 months. At the end of our day, I rest my head on my pillow and know that I don't have to realistically worry that death is around the corner.
Sure, I worry about the long term emotional and physical effects of Lucy's issues- but honestly they seem like conquerable mole hills when I look at death on the opposite end of the spectrum. There will always be healthy days after Lucy's sick days. She will still get to enjoy so many of the wonderful things in this world.
We have had various friends and family offer prayers and even money, but Zac and I have shuddered at the idea of accepting help out of pride. I can only think of little Sully and his parents. I truly pray that they can find peace and the strength to go on without him. They seem to have an incredible amount of faith in God and a purpose for this whole experience.
I need to wake up everyday and not think about how "defective" the child I created is, I need to not think of the 1000 "what ifs" regarding her future. Instead, I need to wake up and accept that this is our life, deal with it, coach my child through the day to day struggles with it and know that we will all go on. In the end my children are beautiful people who can walk away stronger because things weren't neccessarily "easy".

Rest peacefully Sully, thank you for sharing your life with us.