4 AM

Here I sit watching Megan sleep at 4 am in the PICU. I am so tired but can not sleep. I was lying next to her holding her hand and thinking of how I just want to play with her at the beach. Let her feel the water on her little legs and smell the air and watch her smile. It seems like an impossibility and it makes me cry. I am trying to not make sound so no one hears but it just comes out anyway so I got out of the bed to ...... I dont know what I got out of bed to do, but here I am. The pain in my body that I feel hurts so bad. It feels like it is crushing my midsection and my chest. I feel so sad and at such a loss for everything. The reality of this whole thing feels like too much right now and I want to have someone help her so badly but am so let down by the incapability of those in the position to do more to be so clinical and unable to know what this has and is doing to our world. My poor baby has such a poor existance because she is always so sick with some kind of acute illness that seems unavoidable with this trach. A sterile world is where she would be able to escape the germs. That is not possible. She has been crying for 10 weeks with one type of infection after another all because she has a trach. She has been able to wean from the ventilator and breathe on her own. In order to get the trach removed she must be able to have it capped off and breathe completely through her nose and mouth again....but you cant do that if she has an infection in there so we are stuck - being sick - losing out on the things that we should be experiencing and enjoying. She does not have to be normal to live life. Just not sick. Why??????????????????????????????????I dont understand so many things. Why does this happen to beautiful little babies. Their lives should not be filled with such torment and pain. I love to just look at her. She is so pretty and so innocent and pure. So unscathed by the cruelties and callousness of all of this. I am trying to absorb all of the discomforts and pain for her but I know that I can not. I can not absorb them for her or absorb them for James and Ryan either. They worry and fear for Megan too. I dont know what do with this anymore. I feel like the walls are closing in and I cant stop them - suffocated and desperate for someway to stop this. You know the hourglass filled with sand and how they are always used in a race for time and they are almost at the end. I see myself inside one of those and the sand is at my neck. James is 14 this month and Ryan is 7 1/2. Their lives are racing past me in a blur as Megan's is too. How did the last three years happen. 2006 was the last time I can remember happiness. The thought of our new baby and growing our family. We were so blessed. I knew it then too. Please know that I could care less that Megan is disabled or that she will not ever know the same things that she would if she did not have this disease. I think she is the most amazing, beautiful, resilient little girl in the world and am grateful that she is my daughter. I am proud of her. She has changed all of us forever and has touched us in a way that she never would have been able to if she were "normal". I love to see her smile, braid her hair, kiss her ear and watch her react with anticipation for me to do it again. The glimpses of her personality come through and I long to see more of it, the way she is when she is not ill. I pray that we can get this trach out successfully. Go to the beach with the people I love and play with Megan in the warm water in her pink tutu bathing suit, build in the sand with Ryan and hang out with my teenage son - laugh at his take on things - have time with my husband without feeling like we are in a pressure cooker and remember why we are together in the first place and look at what we have created together. I pray that we have the strength to endure all things good and bad and remain together throught the rest of our lives, the way we intended it to be.