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Newly Diagnosed?

I have spent some time reflecting back on the kids' diagnosis. I read old blog posts from that season to try help bring it all back. (You can find them by clicking on the three horizontal lines at the top of the page and then click on Archive. March and April of 2008 was when we learned all about Sanfilippo Syndrome.)
I was recently contacted by a mom whose daughter was diagnosed. My conversations with her prompted my reflection. She commented that I seem so strong. I am much stronger than I was when I had to race home from the hospital to Google MPS III. It has been over a decade of heavy lifting - physically, emotionally, mentally and spiritually.
She will also begin to use muscles she didn't realize she had. And with each new day of aches and pains, she will grow strong too.
These are a few things I passed on and I thought it would be helpful to get them written down for others.
Be kind to yourself and your partner. You will process this devastating news in different ways …

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