by Jasmine F.
I have a secret. I don't celebrate World Down Syndrome Day. I don't really celebrate Down Syndrome. Down Syndrome is just a small part of who my 3-year-old daughter, Hope is. For the rest of the world, it's the most obvious. I have read "facial features consistent with Down Syndrome" countless times in Doctor's reports from clinic visits.
Hope is a tubie. She was 5 months old when they replaced her NG tube (through her nose) with a Gtube (direct to her stomach) so we could finally see her beautiful face.
Hope has Cerebral Palsy, specifically double hemi, ataxic Cerebral Palsy. Because of this, she is floppier than other kids, even other kids with don't know yet if she will ever stand or walk independently. But we work on it.
Hope is autistic and has ADHD. Both are gifts from me courtesy of genetics that add some extra challenges to learning and socializing.
Hope has Chronic Kidney Disease Stage 2 as a result of damage to her kidneys from heavy doses of diuretics that kept her heart functioning in that first crucial year.
Hope is stubborn. And that stubbornness has kept her alive when we were out of options.
Hope is sassy as any 3-year-old rightly ought to be, teasing, talking back, shaking her head, throwing food she doesn't want.
Hope is sweet and loving. Her favorite thing to do is snuggle and play with your hair.
Hope is patient. She very rarely demands things and is content to wait her turn.