Not Scarlett’s fate.

    It has been a while since my last blog. Partly because I didn’t have a computer but also because Scarlett has been so back and forth these past two months with her lupus. I wasn’t sure what to say. She has her good and bad weeks. One day she is doing well and the next day she is complaining of pain. She had a terrible summer cold in July and her cough lasted for weeks. Now overall, she’s doing well which is what her doctors tell us.
I have been thinking about this post for quite some time. Not that long ago a parent posted in our lupus support group that their child had passed away. She was 10 years old. I cried as I read her story and prayed for peace for her parents. Then, I got to the comments. Another parent had commented that this is the fate of all our children with lupus. It’s funny how one comment can affect you. It has bothered me and I have dwelled on this a lot. I refuse to believe that this is Scarlett’s fate. I know the statistics… the younger you are when you get lupus the more aggressive it is and the worse the outcome. Scarlett was two years old when she first had symptoms. Maybe I’m naive but I absolutely refuse to believe that a short life is Scarlett’s fate. Every day I look at Scarlett and I’m reminded that miracles do exist.
I remember like it was yesterday, driving to the hospital when Scarlett was coding and prayed to God not to take her. Scarlett survived not having a heart beat for almost 5 minutes and the pulmonary hemorrhages she had for months after. I don’t know of any other person who has survived what she has. She is truly miraculous.
I am encouraged that she has had a good year overall with no hospitalizations. I hope that her lupus will continue to be well controlled. Scarlett starts preschool next week which is a pretty big deal. We really want her to have normal social experiences. She told me tonight that she’s “really nervous” to go to school. I whole heartedly believe that she is starting a new trend for childhood lupus. Keep going my sweet girl. I can’t wait to see what new statistics you set for young kids with lupus.

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