She Will Amaze You

Today was hard on me. I try so hard to be strong for everyone, and I know it's to the detriment of my health and sanity. I looked in the mirror this evening, and I only see a shadow of myself. My resolution for 2012 is to take the time to look after myself.

Jason came home early last night, which meant he was able to stay with Jakob this morning when I went to go check on Ellie. I was planning on bringing her home, but when I got to the hospital, the doctor convinced me to change my mind. When someone you trust completely, tells you it is in your child's best interest to stay in her room at the hospital until she's well again, you listen. At least, I did.

As I mentioned before, Ellie has paraflu. Usually it isn't a big deal, but in children with low tone and compromised immune systems, it can become very serious. Ellie really does need her bipap all the time, and if I were to bring her home, we would all be chained to my bedroom, to the machine, and her monitors. It's far better for her to be somewhere they can properly look after her, where I know she is safe.

At the same time, it breaks my heart to have her there. I look around at all the other children, all attached to monitors, ventilators, and I wonder how we got here, how this became our reality. Today marks the 100th night between Ellie and I, that one of us has had to stay in the hospital. One hundred nights. That alone is devastating.


The doctors' plan for Ellie, is to see her clear of this virus, then start growth hormone therapy, as early as next week. Due to the problems with her airway, and the apnea, they have been preparing me for the possibility of her needing a tracheotomy. I am able to take just about everything when it comes to news about Ellie, but this one makes my heart hurt. I don't know if I can handle it. They want her to stay for a while, nights mostly, after she starts the GH, as she poses such a high risk of respiratory complications.

When I left the hospital this evening, I had a meltdown. I sat in my car and cried for a solid ten minutes. The house feels wrong without her here, I miss her. I am so tired, but I can`t sleep. I hope to God next year is better than this one has been.