I wish I didn’t know:
- How to apply for a disability parking permit for a child (hint: it’s not easy)
- That there are no handicapped parking spots in the city of New York
- What EI, CPSE, CSE, ACC, OWPDD, EEG, and EKG stand for
- How to fill a syringe with medicine and administer it on your child
- What a seizure looks like
- That there was such a thing as a swallow study
- What depecote, acth, keppra are
- The difference between grand mal, petit mal and absence seizures
- How important the MECP2 gene is on neurological function and development
- That there is such a thing as a car seat for a disabled child and that it costs $1200
- What orphan drug status is
- That your heart can break into a million pieces every day but then one smile from one amazing little person can make it all better
- How to pack for a 48 hour long hospital visit for two people (one of them being under the age of 5)
- The importance of proprioceptive and vestibular function
- Rett Syndrome.
But if knowing all of the above means to know this kid, then I am in 100%.
Wish we lived closer. I’m here for both of you Chrissy. Thoughts and prayers always sent your way. Love u soooo mucg
A big hug from me to you.
You are, and you always give 100%. Let that little person’s smile make it all better for you.