When Life Gets You Down

People that knew me before Parker was born will attest that I have always been quite laid back. If something upset me I was pretty good to just let it go. Not to say that I have changed very much since Parker was born or since he was diagnosed with this horrific disease, but to be honest it does have its toll on you. Still, I am not one to complain much, and I do my best to not let petty things bother me, but that said, today I felt a little overwhelmed. I guess with each day that passes, as we battle with Parker to fight this disease, it is to be expected.

I can't say that I ever really thought what a parent has to go through on a daily basis before I had Parker. If I take that thought a little further, I can say that I definitely never imagined what it was like to be a parent of a child whose future was undetermined to the extent that my son's is. How could I have? Why would I have? But now, when I watch television shows like "Life's Little Miracles" on the "Life Channel", that shows families going through very similar things that we do, I sympathize with them.

Please don't get me wrong. I am not asking anyone to feel sorry for me or my family. People that know me will understand that that is the furthest thing from my mind. To be honest, almost right after Parker was diagnosed with this disease I decided that I should not sit and wonder why this had happened to us, but instead, why should it not? What makes someone so special that they are spared such a journey. So, with that, I take the cards that I have been dealt and I play them to the best of my ability.

But today, I am tired. I am tired of listening to people who do not know what it is like to go through what we do each day. I am tired of hearing that Parker's chance of survival is small from people who I don't know and who don't know my son. And I am tired of feeling guilty for watching my son as closely as I do.

I am not sure if anyone has heard the term 'institutionalized'? Many families who have spent an extended period of time in the hospital or other institution, take hospital life home with them. They have difficulty removing themselves from what they are used to. So I ask myself, are we institutionalized? Without giving it too much thought, I would have to say yes, but with do course. I plan on monitoring my son very closely and keeping our house as clean as possible until he is as normal as the next child. I would expect that every parent would do the same if they were in our position.

It is definitely going to be a long journey. One with many ups and downs. I know that there will be plenty more days just like today where I have to fight back the tears. It was about half an hour before I started writing this article that I helped put Parker to bed. Yes, I was absolutely exhausted. But as I sat in the glider beside his crib, I held my son in my arms in front of me. I smiled at him, and he smiled back, and with that smile he gave me strength.