Musings of an exhausted mother....

I feel that I need to put a disclaimer on tonight’s entry. It wanes a bit on the melancholy but it is something I feel I need to write about if for no other reason than to save my own sanity. Although today was easy for us -- Max had just a few labs and not much else that was particularly exciting -- it was also a very emotional day. One of the families we have met this year has a five year old daughter who had a liver transplant yesterday; the liver failed overnight and if another one doesn’t become available in the next 72 hours there are few if any options left for them. It’s heartbreaking to watch parents face the decisions they must make in such situations. During this stay I have noticed that the children here are much more critically ill than they have been in past stays. I cannot remember another time when a child staying at Children’s House passed away while we were here, this year it is very possible that two may pass before we leave. Now I must admit this house isn’t exactly a party place, the families here are facing serious illnesses, but this year it is particularly sad. We families form a certain bond during our time here, we all know each others stories, what our kids are going through, and we support one another as best we can. We may never see each other again but for the fleeting time we share this space we form a sort of club, we don’t have a secret handshake or codeword that identifies us as members of this club, we don’t need one because we share something more important, we share the same battle. We are all here to give our children their best shot at a healthy life or at least the best life they can have. Many of these families have sacrificed much to get their children here, this is something we know first hand, but none of us would ever consider any other alternative. As we sat together in the kitchen tonight our theme was “no matter what happens we know we have fought the fight, we have given our kids the best there is”. I’m not sure how much comfort this will be to the parents who may loose their children this week or any other week for that matter but sometimes that’s all we have, the comfort of knowing we’re doing the best we can for our kids. On that level we are not much different from any other parent, all parents do the best they can for their kids. We just happen to be doing it in a life or death situation.

Tonight please keep the little girl who is on life support waiting for a liver and the little boy whose brain tumor is back in your thoughts and prayers. You have no idea how much that means to these families. Our children touch many lives, in some cases this is the legacy their short lives leave behind. Someone once said it is not the quantity of life but rather the quality that matters most. I believe that this is especially true of chronically ill children who live more than we will ever know.

I’ll close with a promise, I promise to never be quite so philosophical again. Starting tomorrow I’ll turn back into my usual smart a## self!