Today we realized Emily will have completely weaned off her steroids before her next Rheumatology appointment. That first brought feelings of excitement and relief. Then I got scared because every time we have tried to come off steroids something horrible has happened. Then I remind myself that was at the beginning and things have been going very well lately so I take a deep breath and build up my faith a bit.
The truth about it is though that this nasty disease is just all around scary. Whenever a new SOJIA parent message me on Emily's facebook page I remember all the emotions that go along with suddenly having a very ill child in the family.
Once you come so close to losing a child you realize there is no guarantee on life. Each new day is a gift that you cherish, but each new change is a little bit scary too.
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