I decided on the way back to the hospital tonight that I am in complete denial. I refuse to admit that we're not ok. But I am admitting... were not ok!! I have tried to hold it together. I know having her intubated gives her heart a rest, but my heart ceases to get any breaks. The doctors don't want me to hold her... she is my baby... and I'm not allowed to hold her? In the beginning (of the intubation) I felt fine with it. Knowing all the good it is doing and the time it is buying. Now I think it is just plain mean. Babies need to be held! It has been over a week since I held her last and my arms are aching to scoop her up. My heart is broken! It's the not knowing that is killing me. The doctors come in, talk about her- maybe change one or two orders- and leave. I feel invisible. Not that they aren't doing a good job, but I want them to know me... know her. Know that I would give anything if one of them would walk in with good news, or at least a big smile on their face. I am suffocating.
My whole life I have felt lucky... things have just gone my way. When people ask me how Mia is doing, I find myself trying to stay upbeat and give them an encouraging response. I do mean what I say... but day after day...it's getting old. She needs a heart- and she has needed one since she was born. It's not her fault- it's not fair. She just wants to be a baby in this world- and is stuck in a wedge with no one to hold her. Things are not going my way now. I'm fine with that. I just need her to be ok, to be home. You can probably sense the desperation in this post. I am desperate... I would do ANYTHING to get her home. I daydream often about a medical breakthrough, something, anything that will get us home. Everyone comments how well I am handling all of this. I don't have a choice. I would rather not handle it please. Today is an especially difficult day because it is the first full day with out my mom. She was allowed to take some personal days to come back and be with me and Mia. She was here for a few weeks, with the hopes that Mia would get her heart and she could take sick leave. Well, it didn't happen, and she had to go back. When she was here I didn't have to own up to my emotions. She took care of me in a way no one else can. Now she is gone and it is Mia and myself back to waiting day after day. Waiting month after month. How much longer? Now I have to be the adult- deal with the pain. When did I grow up? When did I cross the line of being able to handle situations like this? When? I definitely have up and downs. When I posted earlier (pen foot) I was feeling really great. My kids at home are a great distraction to my sorrow. I am sure this is how my blog will go until we are home. Happy post, sad post, happy post, sad post. This just happens to be the sad post. I wish you could all look in her eyes, and see her trying to breathe after she coughs with a breathing tube. It is the most helpless feeling. I have never felt this emotion and apparently I don't have the psychological ability to cope with it. I took a lot of counseling courses in college and none of them prepared me for this. I am suffocating... breathe. This is the most spiritual and devastating experience. Why can't it all be spiritual? Why can't the MOTAB be playing constantly in my brain so I can walk graciously down the ICU hall completely uplifted by my experience? If only life worked that way. Why were we given such raw emotions? It hurts so much!
Please pray for that couple to say yes. Mia has waiting so long, and endured so much. So many of you are praying for her... please continue. I have never prayed as much or more intently in my life. Now that I know how life can be... I will never pray the same again. I will pray with more gratitude...knowing just how blessed I am.