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April 8, 2003
4-8-04--UPDATE
I think the fog has cleared my head. Things are clearer today. I spent some time off and on today on the internet and emailing Sean's pediatrician about this whole heart thing.
I have learned quite a bit today and I know I still have quite a bit to learn.
We see the Cardiologist on April 27th at 2:30pm. I am not impressed I have to wait so long, but it is better than months or the 2 yr wait we had to see Sean's Hand surgeon we saw all of 15mins!
For such an emergency thing, we are made to wait! The life of it all!
An angiogram is being ordered and I am extremely interested in that. I hope I can be in the room for it. I know Sean will be sedated, but I would love to see that pictures of my son's heart and circulatory system.
At my blog I listed all the things I learned today. You can see it at 4wildboys.typepad.com.
I have fears of all the work we have gone into to keeping him alive are going to be for not. I don't want to let go of my special little boy! I waited so long for him and have found to keep him alive from the moment I found out I was pregnant!
Isn't it amazing how things can take on a different perspective when things do not go as planned?
I have often thought of how it would be for him to die. A morbid thought I know, but just in case that is what the prognosis is. How do I explain to this little boy he is going to die? How do I let him go? How to tell my other sons about it? What kind of funeral would Sean want? ALl those things run through my mind.
Just as parents who lose a child grieve, parents with special needs children grieve. We go through the steps and motions just as others do. MY heart is BREAKING! My life isn't falling apart and I don't intend to let it, but my heart aches for Sean. I think of all he has endured so far and can't even to begin to imagine what he is going to have to endure in the coming weeks and months/years.
My precious son, I love you!!! I intend to learn all I can to help you in every possible way.
forever your mommy.
Take time to stop and do something fun and crazy with your children!
Shelly
Thank you to everyone for you kind words, thoughts and prayers. I know they work!
S~
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