Dear Casie –
I want you to know that I think you’re doing pretty good. The days of pinching yourself are over – you now know that this is reality (a wonderful reality) and you are oh-so content with your life with your son. And although he has Down syndrome, and you know the biggest struggles are likely yet to come, your challenges are shifting outwardly as your acceptance has evolved.
You sat down to write this post and the first draft consisted of thoughts as to why World Down Syndrome Day was the ONE day that the world celebrates, embraces and uplifts your son. Much akin to Black History Month, you question why we need a special occasion to remember to celebrate how differences are ok and people with Down syndrome are actually “more alike than different.” You wrote a whole draft and then decided that it was too negative. World Down Syndrome Day – March 21st – is a day to be joyful. A day in which others show their love and support. A day in which you should be positive.
Then you started another draft. You wrote about people not having enough exposure to those that are different. People choosing to stay within their comfort zones, and inadvertently – but nonetheless – choosing to omit other’s voices. You exposed privilege and how yours has changed, while those around you stayed right in that spot of contentment. But that draft seemed too critical. Real and true, but critical. And tomorrow we cannot be critical; we are open, forgiving and joining arms in the fight.
The truth is, it is okay for you to have conflicting feelings about World Down Syndrome Day. As a mother who fiercely loves and protects her son, it is okay to be frustrated with the practice of advocacy that revolves around raising a child with a disability. As much as you wear it with a badge of honor, you get tired, weary, caught up in life’s other moments and you start to wonder why this sometimes feels like you’re on an island and your shoulders are both metaphorically and literally heavy. It can feel like a force to be reckoned with. But tomorrow you let it go…
Because nothing – seriously nothing – matters more than sharing with others what your son’s life is truly about. That the stereotypes and decades old stories are by no means, AT ALL reflective of the days you share with your son. His understanding, his drive, and his playful demeanor are hardly decipherable from that of your other children. And his social adaptability and IQ is – dare you say – more advanced than you would have ever imagined.
Let it be known that Down syndrome is nothing to fear. That the fear itself lives in the advocacy you never signed up for. It takes tremendous strength to reach your arms wide and embrace, yet work to change, the ignorance that lies around your son. Know that as you cry for equal opportunity and inclusion, there are others who are eager to learn and help even when you feel helpless. Know that days like World Down Syndrome Day are fruitful even when they leave you feeling perplexed. There are changes to be made and celebrations to be had. Even if it’s one day at a time.
Tomorrow is a day to celebrate your son and let others share in your work. Partner with them and acknowledge them, as they truly wish to aid you in your mission. Trust in that, and embrace the fact that change is not only necessary, it is possible. World Down Syndrome Day is a day to choose hope.
Love,
Me
