Choices

I always have to make decisions, how do we know which way to go? When you have a chronically ill child you have so many choices to make each day. Your choices directly effect your child so which choices do you make. It's exhausting!!

In the beginning we trusted the doctors, what else were we to do? You grow up learning that doctors know best but something RSD has taught me is that this assumption is so very wrong. Doctors are not super human and some actually have no clue what their doing so a choice I made early on was to become my daughters medical expert.

I have an amazing primary care physician but no RSD specialist and no pain manager. I manage Emily's pain 100% every day. Texas doesn't really have anyone that can do the job because pediatric RSD is rare. Not wanting to have Emily used as a Guinea pig I withdrew her from mainstream doctoring. The results? Better I think :)

The medication Emily was put on made her vanish inside herself and regress back to a young child. I hated seeing this especially as her pain level was still extremely high. I'm glad I made the choice to remove all medication, it was a hard decision but the best one. Today Emily isn't "foggy". Her memory isn't what it used to be but hell mines pretty bad too LOL

Tom suddenly realized that Emily wasn't going to get well just before Christmas. I have always been open and honest with my son about Emily and answered his many questions as best I can but still he hung onto the dream that his sister would one day soon be "normal". Just like when you get divorced and children hang onto that dream that their parents will one day reunite. This realization hit him hard. He became angry then guilty because he felt angry LOL and just generally acted out. Throughout this last 14 months I have continued my Mom and Son date nights and my daily chats and I think this has helped. Open communication is the only way forward because the feelings Tom has is normal. He's only 10 and this is hard.

RSD means that you have to take each day at a time. Some days just stink, others are just ok and when a good day comes we dance and sing and live it to the full. What an education this has been.