As we come back to CHB day after day I say to myself...What can I do to help? I know what our family needs are. What all of our expenses are from traveling back and forth. I know that we are not in a position at this moment to help other families. I hope that in the future we will be. I have taking the time to talk with the parents that are willing to talk. I want to know what are their needs...what would help them? Of course gas is one of the biggest expenses per week for most families. There is always the often unexpected cost as well. If you are held up at a treatment or admitted unexpectedly. I personally try day to day to cut cost. We pack snacks and waters. It doesn't always work out. I usually have to get Mark dinner on Friday nights before we leave the hospital. The ride is always so unpredictable. I would rather grab him a grill cheese or something...Then have to stop at a fast food place. This also spares me from Mark crying that he is hungry the entire ride home. We have been so fortunate to have so many people reach out and help us. I wonder is it the same for others? Is it the same for the ones that are on their second transplant? Are people less likely to help them the second time around? I hope not. This is for the most part a temporary hardship. We know that it will get better. I am sure this what keeps all families going. For me the worse part is in a number of years it will happen all over again. There is not much you can do to prepare for end stage renal disease. It happens and it happens quick! I think of how much our life changed over night. I also sit here and think back to that first day...I thought I was going to be superwomen! I was so sure I could hold a job down, Mark would be in school even for a few hours on dialysis days. That is not the case at all. Reality sets in and you only do what you can do to get by!
Mark is having another great day. We will have to see how his weekend weight gain goes. This is our only major concern for now!
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