Monday, June 01, 2009
Having a moment...
I know in my heart that she is going to be okay. BUT I miss her. I miss her so much. It's so hard to see her like this. So emotionless. So quiet. So limp. I miss her smile. I miss her kisses. I miss her words. I know this is all temporary. That soon enough I will have her back. But in this moment...I am heartbroken. I wasn't prepared for this. I knew there was a possibility for weakness but this is beyond weakness. I get blank stares. Sometimes I don't know if she is awake or sleeping with her one eye open.
None of the doctors are worried. They say to give it time.
The only thing getting me through this moment is the fact that we have seen NO SEIZURES. It is absolutely amazing. I hold on to that.
I also hold on to the thoughts and prayers sent by all of you. I feel beyond words the love I receive from people who care...some that I have never met...some that just found out about our journey. The words of wisdom from those who have been through what I am going through gives me hope.
We have had a day filled with joy. Progress made by Sophie. Thoughtful care packages sent from all over the country.
But at this moment...when I stare into her eyes...I wonder when I will get her back and it fills my heart with sadness.
It is not easy being in a children's hospital. There is sadness all around. Crying parents. Crying babies. Parents who are given no hope at all. Toddlers crying for their parents that are no where to be found. It breaks my heart. It is hard to watch others suffer.
I feel selfish. For not being more patient. For feeling sad when the doctor's are so hopeful. For wanting so much more when I am surrounded by those who have yet to experience the joyful things that I have experienced with Sophie and who may never experience those things with their child.
I pray for our last roommate...a baby girl who is only 5 months old and diagnosed with Infantile Spasms and Aicardi Syndrome. Her parents are way too young to care for her and her mom is ready to give up. Fortunately, her grandmother is fighting for her.
I pray for the young mom sobbing in the PICU because someone shook her baby and she doesn't know how she is going to care for her child.
I know these are a lot of random thoughts. I think the week has caught up to me. That a mental breakdown was bound to happen. It just seems like life is so unfair and I am not talking about me. For these children. Who have to suffer. It just doesn't make sense.