This year is a little different: we will celebrate World Down Syndrome Day in isolation, but never alone.
Hope was admitted to the hospital four years ago today, yet this is the first time we’ve had to acknowledge the anniversary, thanks to common years safeguarding the memory since 2016. I’ve long promised the story of her 105-degree fever, so here we go.
Whenever we meet families with older children who have Down syndrome, there is always one common thread among them—they’re calm.
Our dreams are like any other parent’s dreams—we just have to fight a little harder to get there. Thank you for fighting alongside us. For smiling back when our daughter blows you a kiss. For continuing to vote for special needs funding. And for understanding that there is nothing wrong with having Down syndrome.
We throw around words all the time, using hyperbole to force others to understand in the flicker of a moment the feelings we have spent days, months, even years cultivating. We don’t always mean what we say, and parsing language can often be an exercise in futility.
Since Hope was a newborn, I have found myself in tears several times over the thought of someone kidnapping her and how helpless she would be. This is of course extreme—a sensational story pieced together from movie plots and anxiety—and there are more realistic events that could lead to Hope becoming lost.
In a few days, we send Hope for ear tubes and an adenotonsillectomy. But unlike her heart surgery, this is technically elective.
This was a huge reminder that with the 7-fold risk of sexual abuse of a person with an intellectual disability, we need to draw a firm line between what is acceptable with family versus how to behave around friends and strangers.
My children have taught me to be brave and to look past the superficialities of the world, straight down to what really matters. In my experience, this is what it takes to penetrate that final layer of anxiety in order to give my children the very best I can give.
Hope’s claim to fame has always been her hair. Waves hello and blown kisses, too, but since her days of newborn sweetness her hair has always been what’s drawn her the […]