For the first 21 years or so of Marcus’ life,
“Down syndrome” didn’t really come up,
and I kept our privacy setting as restricted. Not that I was hiding, I just wasn’t sharing. Why? Well, one reason is because most of those years were pretty, how shall I say this?
Not to me, you understand. But to an outsider. Seriously. What exactly is so exciting about going to work and going to school and living in Middle America? Not the stuff of reality TV programming. And I was cool with that. This is how it is for most families, regardless of their child’s abilities, most of life is spent just living.
Not only was I not sharing, I also wasn’t really seeing/listening/reading about any other families, locally or on the web, who faced what may be considered similar challenges as mine. This is how it is for the majority of the population. Work and School and Home, rinse, repeat.
There are advantages to that way of life.
Living in a bubble has its perks, for sure.
Today I speak, I write, I shout:
The times I have wanted to curl under the covers and hide have never come from my son, they have come from outside my home. The times I have cried in anger, frustration, hopelessness, have never come from any action or reaction from my son. My son, who has Down syndrome, has lifted me, has healed me, has taught me. The times that he has faced serious health issues have, thankfully, been few. In those times I moved through the icy waters of fear, my own heart echoed through my body and mind, anxious for his fight. I encouraged his strength and willed him my own like it was possible. The only wish, then and always, Be well. Be alive. Be here. I begged the fates, “Do not take Marcus from me.” Those occasions, rare and frightening, served to remind me of all Marcus gives to me, all he is to me, and all I have. This is not so odd.
Know this, People of the World, Marcus is a force of good. His biggest challenge is not and has never been the complications of Down syndrome within his genetic makeup. His biggest challenge is the willful ignorance of other humans and their decision to judge any person without an attempt at understanding; my “hardships” are not and have never been caused by my son but instead by others in reaction or denial to/of him and his contributions.
This is our story.
Originally Published Oct 2104. Reposted in honor of #WDSD16
This World Down Syndrome Day The Mighty created this great video – our man is in it, check it out:
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