Maken Understand Love

Editor’s note: This is a guest post by Mardra Sikora for a summer series highlighting great bloggers who focus on disability.

adult son with Down syndrome lives at home

Mardra and Marcus Sikora

Maybe I shouldn’t have read the article.

But everyone in my circle was talking about it. I didn’t stop myself from speculation. I was angry at the media outlet for exploiting a mother who, in my opinion needed…help. And mad at the media for dehumanizing her son, Stephen, by completely ignoring his story, leaving the focus on her statement she “wished (she) had aborted,” all while showing pictures of the mother and adult son, both smiling for the camera. It still makes my stomach churn. She not only wrote publicly about wishing she had aborted, but worse yet, admitted to having considered killing him as a toddler, and also again, considering to “let him die” without appropriate medical care. Though in his 40’s now, he lived in an institution as a child and yet his very life wore upon her.

I stewed with a writer friend, also a mother, over the lines so obviously crossed. My phone alerts interrupted our real life coffee and my twitter feed lit up from advocates around the world…how to respond?

I wrote, “Our story of Down syndrome: The Short Version” in which I clarified:

“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.”

Although I don’t want to send others to the “click bait,” (which is why I do not include links to the Daily Mail articles here) I do want to do my own tiny bit for what I term the Google War. The effort to counter these negative, intrusive, and harmful stories about people with Down syndrome.

I learned two lessons on that day. The first was to never again click on the Daily Mail. Ever. They run a gamut of articles, even some “feel good” and positive – but I will Not. Go. There. Again. A subset of this lesson is to never, NEVER, read the comments. Of course, this is a lesson I’ve learned before, but this one sealed the deal. The newspaper editors go for sensationalism, glorifying, and exploiting. That’s their thing. But commenters, these are the ones that make me want to crawl under the covers and cry for a broken world.

So that night, as I sat across the table from Marcus paying more attention to my phone than the person with me, I sighed, read my phone, and sighed again. Marcus asked me, “What’s going on?”

I sighed (again) and said, “Bad news.”

Often if I say, “Bad news,” he replies with, “What’s the bad news like?”

I didn’t want to tell him of these articles, of mothers who feel that their children, who look a little like him, are “better off” dead. That there are people who claim that those with Down syndrome are not worthy of life. I do not want to tell him these things.

But then he surprised me, as he has before and doubtless will again, when he intuitively knew more about the situation than I shared. He looked across the table and said, in his way, “Maken Understand.”

“Maken understand” is the phrase that comes up when Marcus struggles to get someone to understand a word or phrase. After he’s repeated something and we’ve repeated what we think he is saying, he’ll throw up his hands and say, “Maken understand!” It is his shorthand for, “Why can’t you understand?”

But at this moment, there was no frustration (from him), no other phrase, no other word. So I asked, “Maken understand what?”

“Love.” He said.

***

Yes, friends, true story. His answer to the situation. There it is.

I stared at him in amazement. Of course. He’s right.

I was angry at the media outlet. My heart broke for Stephen and all of the times he was unable to make himself understood. Yet, I admit, my heart also ached for his mother in this, her attempt to be understood. Two separate stories lived together but so far away from understanding. That is pain.

I desperately want the world to understand that for people with Down syndrome and their families, stories like Stephen’s and his mother’s are not the only story. It is not Marcus’ story. It is not our truth. So we will say it again and again, and will continue to try to maken the world understand…love. There is room for this love, there is room for learning, there is room for teaching. In the end, that is what Marcus and I want you to understand.

***

My dear Ellen Stumbo readers, this piece is a little new, a little revised, mostly reposted work, but when I thought about you, new-to- me readers, I thought this is a tidbit of one of Marcus’ teaching moments that I hope will help lift you today and every day. A nagging bit of me says, “You should have told them about Marcus’ book.” Yes! His book, Black Day: The Monster Rock Band. A children’s storybook that is a crowd favorite, please, check it out! Or wait, I should have told you about another book I co-authored and was released earlier this year: The Parent’s Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis through Adulthood (A really long title/subtitle for a relatively short book PACKED with resources, perspectives, and front-line information for parents published by Adams Media.) You can check out these and more of our adventures over at GrownUpsandDowns.com and also the ParentsGuidetoDownSyndrome.com. Thanks to dear Ellen for sharing her friends with us, the world gets smaller, and if we keep filling it with love…maybe there’s hope, yet.

Watch Mardra and Marcus talk about the book Black Day