Since Elijah was diagnosed I have heard a lot of people, including myself and other cancer parents longing for a normal life. Today it finally occurred to, why? Why in the world would I now want a normal life for my son? When I was in school did I strive for a C, no I wanted the A. I don't want a normal life for my children, I want an extraordinary life for them. The reality is their lives can't be normal, but that doesn't mean I have to allow the circumstances to give them less. In so many ways we are learning that we have incredible people in our lives and that we are more than ordinarily blessed. I think that solely striving for normal cheats everyone. I want my kids to know joy and laughter. To see beauty and love. To be able to face hard times with courage and strength. I want them to believe in themselves, and to know that both of their parents believe in them too. To solely strive for normal, misses the mark that I want in so many ways.
This week we had to make a very hard decision in the future of Elijah's care. The picc line that we had in his left arm fell out the other day in the hospital. Elijah needs some sort of central line to give him all of his treatment. There are several options for this and we had to decide which one was the best. Each option had strong points and weak points and we needed to evaluate that with what is best for Elijah. Ultimately Brad and I decided he would get a port o cath. The advantages to this is that there is nothing external sticking out of him that we have to take care of and keep dry. It also is less prone to infections. The down side is that it has to be accessed with a needle each time it is used. This is where we struggled to deal with normal. We worried that he may be abnormally bothered by the needle pokes. I kept weighing back and forth with what I thought a normal reaction should be to being poked with a needle. Then it hit me, normal kids hate getting shots and they react from it. So many times I sat in the pediatrician's office and listened to the wailing and screaming of "normal" kids getting vaccines. I already knew that Elijah handled getting shots and vaccines better than most kids his age. With this knowledge I have to believe that he will do ok, eventually with the needle accessing his port. The rest of the advantages allow Elijah to get back to striving for an extraordinary life, not restricted by tubes dangling from him as a constant reminder he is sick. We may be wrong in our decision, we may never know, but right now I am confident in our decision. This is just one more step in the path we choose for our son.