Today is my first November 17th since Finleigh was diagnosed with Smith-Magenis Syndrome.
So... it makes me want to share it with everyone I know. Smith-Magenis. Two words/names in combination that I'd never considered until they landed smack dab in the middle of my life. Now, they are my life in some ways.
Nearly everything we do must take Smith-Magenis Syndrome into consideration.
I have entire days that are dedicated to the management of its symptoms. Whether in meeting with professionals, meeting with parents of other children with special needs to advocate for more programming in our community, or dealing with it in our day to day lives.
But look at this beautiful child. Just yesterday, we were at a local event and she was so taken with the teddy bear hospital that she did not want to leave. She announced excitedly that she wanted to be a doctor one day - which would be a pretty incredible accomplishment for a child that will struggle to complete high school.
Gosh I love this kid.