World Down Syndrome Day: Why I don't celebrate, a feature by Jasmine F.

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 heart warrior having barely survived two complex, risky heart surgeries by the age of 7 months. Her official heart diagnosis is Complex Congenital Heart Defect with Atrioventricular Sepral Defect and Coarctation of the Aorta status post repair. 
Hope is a trachie. She was 4 months old when doctors put a tracheostomy in her throat and hooked her to a ventilator 24/7 in a bid to save her life. She was 2.5 when they took it out, and she finally found her voice.

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. 
But Hope is even more than a sum of diagnoses and complications. 
Hope is brave and strong. She has weathered countless surgeries and procedures with a fierce determination to survive.
Hope is silly. She loves playing and making silly noises and getting tickled.
Hope is a daredevil. She loves upside down piggyback rides and wrestling and swings and slides.
Hope is a big sister that loves her baby sister, Lily, fiercely. She even brings her toys and tries to comfort Lily when she cries.
Hope is a little sister that loves her big brother, Johnathan, unconditionally. She also loves to tease and torment him. She learned to tease him before she learned to talk. 

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. 
Hope is smart. She is so smart. She learns so fast. Her language delay masks some of it, but she's a sponge. 
So, you see, Down Syndrome is just one thing. We don't celebrate it any more than we celebrate her red curly hair or blue-green eyes. And days like World Down Syndrome Day are more for me to say look how different she isn't. 
Jasmine F. is a long-time GroVia Families Member and Hope is a beloved part of our GroVia Babies. Jasmine and Hope are part of our spotlight on World Down Syndrome Day.

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