Not where I want to be

I don't know about anyone else when it comes to this. I can only rely on my own feelings and thoughts but I'm sure I can't be the only one. I'm positive that parents, upon hearing their child is/may die soon, dream up the scenario in their heads (and hearts) of the when and how. Well, yet again I got a kick in the pants with my "fantasy" moment. Two months ago I had that slap upside the head, with my three year old in tow, on the side of the road with purple babe in hand, trying to bring her breath back. And, just a half hour ago, I got another reminder that the "dream" of Scarlett passing in my arms at home isn't as realistic as I would hope.

She has apnea spells, the reason is yet to be determined. They used to last only 15 -20 seconds. But then they slowly increased in duration and frequency. Want to see a grown person go sheet white in a heartbeat? When someone holds Scarlett and she stops breathing, so does the person and their face becomes awashed in panic. To me it's normal. Until today. Today I watched the monitor fall and her chest stop. We are in the hospital, have been for 3 days. Her lung infection is growing, despite relentless drugs, despite our best efforts. She's never been a quitter and I will not give up on her either. But having that damn machine sound alarm, hearing the footsteps run down the hall to our room concreted that a quiet, peaceful moment is unlikely for my daughter if her time is to come. I don't like that useless feeling, that I can't control the when and how, that I can't stop it no matter how hard I try. I have accepted that she's not here for a long time, or have I?

I read somewhere that parents like me go through the stages of grief over and over and over because our life is constantly in flux, dreaming of a family vacation, wondering if death is coming today, hoping to have a seasonal moment with your child before it's too late. I planned on getting professional pictures of my family when it finally looks like spring up here. I even ordered Scarlett a dress which should be here in a few weeks. Now I'm kicking myself for waiting. I may have waited too long. And then again, she could get better and we could go home next week. I don't know. As hard as I may have tried, I've gotten bogged down in the daily crap, in maintaining Scarlett and trying to do things that really don't matter, and I stopped living in the moment with her. I stopped realizing that, as much as I know it, tomorrow isn't guaranteed for my daughter. I think I stopped feeling it so I could just get through the day. But, being here in the hospital with her, there is little else to do but think of what time I've squandered with my entire family.

And now that she's suddenly awake, I'm going to spend time with her even though this isn't all I wanted to post. She's no longer going to wait for me to finish anything before her. Nothing else matters.