What Now........

As I sat in Sadie's hospital room I had plenty of time to contemplate all the "what ifs".

• What if she hadn't been sick to start with
  
• What if we had taken her to the doctor sooner
• What if they had diagnosed her earlier
  
• What if they had realized she was having strokes while they were happening
• What if I had taken her to a different hospital
  
• What if, What if, What if
  

You can literally drive yourself crazy trying to figure out all the things you could have done to prevent the situation you are now facing but the truth is there is absolutely nothing you can do to change it. You cannot wallow in the guilt, sadness or anger. I realized that the only way I would help Sadie is to ask myself......What now?

We were knee deep in her illness and the doctors did not seen very interested in getting her well. Their job was to keep her alive but by no means did they concern themselves with the overall health of my child. They pumped her full of drugs that made her sick and more drugs to counter those drugs.

She was an 8 year old child that can no longer express her fears, pain or needs.....that was now my job. I was now her mother, her caretaker, her friend, her advocate and her voice.

I am sure that my attitude surprised all the staff that cared for her over the next several months. I questioned EVERYTHING! Sadie was now dependent on tube feeding, she was hooked up to many leads, she had an IV most of the time, she had regular blood draws and lumbar punctures 2-3 times a week.

What now? Where do we go from here......

The first step was to stop being scared to touch my child. I mean I had touched her throughout her stay but not like I use to. I couldn't hug her and sit with her like before she got sick. So one day I decided that if she had to spend everyday in bed then I would just have to crawl in there with her. So I started at the end of her bed and wiggled my way under all of her leads, IVs and tubes and cuddled up next to her. I would talk to her, sing to her, tell her jokes, watch TV and just simply hold her. I am honestly not sure if this was more therapeutic for her or me. We spent hours together laying there.

My second decision was not a popular one with the doctors but at that was no concern to me. One morning before rounds I lined up all of her cans of formula and when the doctor came in I informed him that feeding her this way was no longer an option. He didn't really understand at first how determined I was to feed Sadie natural, alive food but I think he got the idea quickly. My step-mother bought a new blender for her hospital room and my mother and her husband would juice vegetables and fruits, shop for her other foods and deliver it to the hospital every other day. Each feeding was blending just prior to starting it and we rotated between sweet and savory foods.

We were taking baby steps but at least we were taking them and would continue fighting for her recovery together.