Aaron's Hyper IgM Journey

Monday, November 29, 2010

Hope is powerful

Saturday night I laid my head on my desk and cried. I felt defeated. I received another bill in the mail; this one for $898.85. Also in the mail was information sent by the NMDP with information regarding bone marrow transplants. Aaron had been registered by the transplant team in Tampa so they could do a search for his marrow. With so many bills to pay and serious life changing decisions I have to make on behalf of my son, I am very overwhelmed. What if they don’t find a match? What if they do? Should I go ahead and give him a transplant with an unrelated donor knowing that the risks could alter the quality of his life for the rest of his life. Graft vs host disease is real and it is common. Should we wait and try to have another child of our own that would be an identical match and a much better donor for Aaron? Where will we find $25,000 to do that? How can a mother face her child years to come and say, “I am sorry we could not find a donor for you and could not have another child to save your life?”

With tears in my eyes and a heavy heart, I lifted my head and prayed. There was no way I could figure this out on my own. I cried a little more and began to clear my head and answers started pouring out. I realized I could stop paying into my 401k for next year and that would help pay for a live in babysitter for Aaron. I realized I could ask the church for help. I belong to a large church with many resources. I asked if they could help me set up an account for Aaron that people could donate tax deductible donations. They were unable to help, but gave me some more suggestions. I spoke with my sister and she said that her family makes donations each year and that this year, they could donate their tax deductible donations toward Aaron’s bone marrow transplant.

I decided from the first day that I found out about Aaron’s condition, that I would not ask, “Why me?” or “Why is this happening to Aaron?” This experience is definitely the most tragic in my life, but it is also the most uplifting and inspirational time as well. The support we have received from family, friends, and strangers has been incredible. Without going through such a difficult situation, you cannot possible know how good life is and the power of prayer and the power of people. Whether Aaron is meant to be with us for a short period or a lifetime, he is the greatest gift I have ever been given.

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