World Down Syndrome Day 2017

There’s a difference between awareness and acceptance when you have a child with special needs. Sometimes it’s a fine, blurred line and other times it’s a chasm.

There are times when awareness seems limited, and those moments are a mother’s worst nightmare. Awareness is an asterisk next to Hannah’s name. It’s a reminder that she’s included but different. It means there will be a day we argue with her school and compromise on her needs. Or that people will over-accommodate, anticipating that Hannah ‘can’t’ or ‘won’t.’ It means there will be people who don’t take her seriously or try to take advantage of her delays.

Yesterday was not one of those days. Yesterday was a day of tear-inducing, heart-melting acceptance.

Acceptance is your daughter’s daycare happily celebrating World Down Syndrome Day. Not just her room – the entire facility. It’s seeing the halls decorated with mismatched socks that the kids decorated. It’s seeing the teachers and children, most who don’t even know Hannah, rocking their colorful socks. It’s a message on Facebook thanking us for sharing the day when all the gratitude should be directed towards them.

Acceptance is your employer initiating a company-wide celebration, asking employees to wear wacky socks, and creating an interactive game out of it. It’s handing out stickers to people you rarely work with and being met with huge smiles. It’s a rush of coworkers coming over to see Hannah when she arrived for a special visit and talking about it the next day.

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Acceptance is inspiring and humbling. It left me wondering, once again, how we ended up with the best family, friends, and coworkers. So thank you, everyone. You knocked our socks off by rockin’ yours!

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Being a Big Girl

At night Hannah and I lay on the recliner, she watches the stars on the ceiling and I watch her. The light from the Twilight Ladybug reflects on her porcelain skin…red…green…blue… Her eyelashes flutter with each slow blink and her wispy, baby-hair bangs sweep across her forehead. The look in her eyes is a mixture of comfort, contentment, and wonder. She’s absolutely gorgeous.

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I keep staring, amazed by how much her face has changed since she was an infant. And how pretty much everything about her has changed since she moved to the toddler room at daycare in November. There are times at home when Hannah refuses to let me be out of her sight. She will hunt me down, then insist on being on my hip or in my lap. Knowing where I am just isn’t enough. Mixed in will be moments of the fiercest independence, the most sincere amazement, and the sweetest self-praise. She’s a full-fledged toddler now and she kicks ass at it.

I’m actually stunned by how calm Hannah is when her life must be so confusing. Her family, teachers, and therapists trying to teach her to take care of herself and make decisions. Then those same adults saying variations of ‘no’ all day. Sit at the table but don’t put your feet on it. You can throw a ball but not your cup. Eat this food but don’t put that in your mouth. Be a big girl but don’t be too big too fast. It’s no wonder toddlers throw tantrums.

I don’t consider myself a patient person but I give Hannah every ounce I can. She’s navigating a world that I’m a stranger to as well. I slowly gave up on idealistic plans like no television, vegetables at every meal, Pinterest-level crafts and games every night. Now we have Sesame Street or nursery rhyme videos on almost every night, she ate vanilla pudding for dinner last Friday, and sometimes we play for an hour with just a baby wipe. It can’t be that bad when she’s learned dance moves from Sesame Street, self-feeds the pudding with a spoon, and likes to clean our floors with the wipes.

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