I’m not going to justify the life of a person with Down syndrome, explaining chromosomes and how they give back to the community, and I promise to never ask you to explain or defend your child’s existence either. All I’m going to ask is for you to consider the possibility that raising a child with a disability is mostly about simply raising a child.
I never really knew where we would fit into this awareness month until January 2020 when Henry, Hope’s baby brother, was denied entrance to an age-appropriate preschool because of his upper limb difference.
Instead of being scared by tests and appointments, just buckle up and enjoy the crazy ride, because whether your pregnancy is typical or not, your baby will thrive if you smile, laugh, throw your arms up, and declare an unconditional love.
Hope’s equitable place in this world hinges on your ability to control the urge to return to a time that no longer exists. If you can’t do this for yourself, do it for Hope. I promise, when the time comes, she will reciprocate ten-fold the love you’ve shown her in this moment.
Happy Down Syndrome Awareness Month! We advocate not because we want to, but because we need to. We celebrate because we can. Thank you for celebrating with us this year!
While most of our time home during the pandemic has been flooded with good intentions and expertise, there is little evidence-based guidance to draw from during what we all know is this “unprecedented time.”
Maybe you discover that it really doesn’t matter if your preschooler can tell the difference between a square and a rectangle, considering she conquered the potty and straw drinking on your watch since being home during the COVID-19 outbreak.
This year is a little different: we will celebrate World Down Syndrome Day in isolation, but never alone.
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.
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.