Today was a better day. I am not sure why some days are so much darker then others. As I have stated before - it never goes away but sometimes I seem to be able to handle it better. I know when I am really tired, I am more emotional - but even when that is not a factor the days and my ability to handle the loss changes.
Sometimes I can look at her pictures and smile and remember all the good times and other times the same pictures just make me want to cry and the pain in my chest seems overwhelming. I don't seem to be able to control it - each day is just what it is.
One of the babies that came in the same day Gracie went to U of M is home with her family - she is 4 months old now and although still has many hurdles to over come - she is at least home for now and her family is together. We bonded since the girls were next to each other for so long and even when they weren't, we saw each other daily and would ask about each others babies.
When you are at places like that you get to the know the kids names and their illnesses and only after awhile do you get to know the parents names - you get referred to by the childs name - this is Gracie's Grammie or this is Taya's Mom or Dad.
So many children with heart issues and other very serious illnesses and all needed a miracle - some of them got them and some will continue to need them through the years. I saw a lot of loss and terrible sadness and I saw wonderful miracles too. At times asking for Gods help seemed so selfish because so many others wanted and needed the same thing. I then I would think of all the other hospitals with children and it would be overwhelming at times. Things you just don't think alot about until you are there and you see it and experience it.
Admittedly there were times we were jealous of those who got the miracles they needed. I know it sounds terrible and please never for one moment think that I would want that childs miracle taken from them or their families - I just kept wondering why we Gracie couldn't get one - with all the wonderous things the medical community can do - they just didn't have a lot of solutions for Gracie - so much is still unknown about infant pulmonary hypertension. This poor child couldn't catch a break anywhere - never felt so hopeless in my life and so out of control. My daughter had to make some extremenly hard decisions - between a rock and hard place type of decisions with no clear answers no matter what she decided. I believe she made the absolute best decisions she could to attempt to save or prolong her life - but
Gracie's little heart was very weary by this time and none of the medicines would work to help control the hypertension.
Hard to believe that when we went to the hospital she was teething, laughing, eating like a piggy and only "seemed" to need oxygen - she was given the title "princess of the PCICU" For the first 4 days nurses doted on her and she loved it. At least we got some good pics of her on Mothers day with my daughter - that was the last day of seeing her smile, laugh and being happy. After her MRI the next day - she never regained consciousness or was able to off a ventalitor. I know my daughter and I will think of her every Mother's Day.
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