My 8 week old baby boy nestling in my arms, I walked into my workplace. Pulling a face, a colleague took one look at him in my arms and said "Well, he doesn't look very Down Syndrome-y", and walked away.
Still to this day, the words sting. Do people see my son and assess how Down Syndrome-y he looks?
Do people not see his Down Syndrome and then wonder why he acts the way he does and talks the way he does? Or do they see his Down Syndrome and then have preconceived ideas about who he is, or what he might be?
I don't know how Down Syndrome looks to you. Maybe Daniel is the vision you have in your head because of this blog. Maybe it's a close relative of yours. Maybe it's an older person from your past - like a neighbour of yours growing up.
Down Syndrome often is reduced to a condition that pregnant women fear because of the testing they are offered. The diagnosis reduced to a list of negative health and mental 'may haves' and 'may bes'. The person reduced to a preconception. The truth is, aside from the extra chromosome, Down Syndrome isn't anything specific, each person different to the next with the same diagnosis.
The greatest beauty in my life, after my faith in Christ, is Down Syndrome. As a Christian, my faith blossoms as I see the parallels in parenting a child with special needs with illustrations used throughout the Bible. Strength comes in weakness. Wholeness from brokenness. Power in vulnerability. It is a beautiful, special journey to be on.
I have spent the last six months feeling a call to write, to share and encourage people with my story. Actually, that's a lie. I've spent my life feeling a call to write, without knowing what story I had. But the last six months, the feeling has deepened within me and back in February I went to America, not because I really wanted to come to the U.S., but because I felt God saying this writing retreat was the place I had to come. A place to focus on His call. Time to reflect and be quiet.
My call to share good news - stories that break the fear around Down Syndrome.
Down Syndrome-y isn't a word, but I have a feeling my blog may become a bit more "Down Syndrome-y".