When My Son With Down Syndrome Lifted Me Out of ‘Broken’ Thinking

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Oh, you do know how to drag me out of the depths, young son.

Just yesterday I was briefly chucked back into that hateful Dark Place. The one I haven’t been in ages because it’s just been us and Life at the Speed of You and mostly smooth sailing. Our optimism and our “normal” run this show, but every once in awhile it hits me like that anvil falling on Wile E. Coyote’s head, and I’m shocked into submission. Nothing angers me more. There you sit, being the amazing kid you are and something threatens to dull your shine.

Not on my watch, buddy.

Like a whirlpool had grabbed my ankles, I got sucked into that place, the one where I’m still angry at outsiders who don’t show you optimism but instead rank you and rate you and chart you and place their societal limitations on you. I got there because every time I let my guard down their attitudes seep into my thinking. I cannot stop it because it always blindsides me.

And nothing angers me more.

I saw you unable to do something that chronologically by age, for all intents and purposes, you should be able to do. But you couldn’t do it. And I counted… well, I counted you. I gave you a number. Like a prisoner, a criminal behind bars, I mentally took your progress and your actuality from you and replaced them with a number. A “developmental age” number. Because that’s what happens when they come in. They break me.

Because as it’s always been, when it’s just you and me and your daddy, we are on the move. We progress, and we see what you can do and then we look for what’s next — only what’s next — not what’s on a chart, a book, a guide, a notepad. We identify what you can do now and choose what we should work on next. We stack it up, like a castle made of that wet sticky sand that endures. We make sure you’re ready for “next,” and when you are we know, and we do and we move.

But damn it if I didn’t let them in last night. I let them break me, and in retrospect I’m pretty seriously disgusted with myself. But mostly I’m sorry. Because I owe you more.

But here’s the rub — I’m not sure those people who skulk into my brain and yank away my pride in your achievements when I least expect it actually know the most important thing they should know, which is this: you are dealing with a child whose family has great hopes and dreams for him to soar. These are not rose-colored glasses we wear. We don’t care about your charts because this is our reality. Our son has the same right to huge expectations as does everyone else.

We don’t see or register your numbers, your rankings and ratings because we progress at the pace of our son. Still, we come to you to ensure he has support because the System says we should. But real support lifts. Real support elevates. Real support nurtures.

Real support does not break. And when I think of the “support” you people provide, I feel shards. I envision rickety ladders lashed together across a constantly moving icefall, in a landscape above meaningful oxygen. Your version of support suffocates. It threatens. Do better. You owe it to everyone you serve.

And get out of my head already.

When you rank and you subsume and you marginalize and you pity, you break us. Yet here, you will have seen that we don’t need you to break us because some days we actually are broken in spite of you. Without warning, we sometimes break ourselves and we have to rebuild again and again. Our lives behind closed doors. You don’t see, but I’ve just revealed it because it is everything.

Sometimes we break. Then we come to you once we’re strong again but you go and dismiss us with accusations of “rose-colored glasses” and “obstructive” and “in denial.” You wind up and swing your scythe of negativity and lop us off at the ankles every time.

We are already broken and broken and broken yet still glued back together. Don’t you realize this?

But wait.

Hang right on.

Here, in reality, in the day to day, like fractured bones, broken spirits heal. They heal when you pick up the pieces, and you compress all the fears, and the gargantuan efforts, and the extra support back into itself. Cast it in a bear hug and squeeze until the broken thing knits itself back together. Different, yes. Healed, yes. Weakened?

Not on your life.

Because once again — as it is always with our stellar boy — every time I get to the Dark Place, surrounded by that pile of shards that is my heart, he goes and blows my mind the very next day. It is pure magic — the empathy, the “knowing,” the joy by osmosis. The mom-and-her-son thing. I thought it would be amazing to have a son, but let me tell you, this is like that thought on a roller coaster. Screamy delight. Leave your stomach at the top of the hill because it’s going to be a big drop and a raucous ride.

Just gotta ride it. Let your throat dry up and your hair fly and ride baby, ride.

So to my best boy, wah hey, bang! out of the Dark Place we arose today, didn’t we, kid? You hoiked me back up with such a rapid succession of… well… success. A fearless unaided slide. Tons of walking and exploring on still wobbly legs, pointing the way ahead and demanding I follow. And I follow. Always, I follow.

Your sudden fearless engagement with zoo animals where last visit shouting and hesitant was the way forward. And the biggest surprise of the day that which was your first stress free endeavor on a “real” potty. This is parenthood. This is bliss. This parenthood has no label, no timeline. This is pride in progress.

author's son in red sweatshirt, smiling This is how you are indeed just the same as everyone else.

Unbroken.
Unchained.
Unsurprisingly you.

I’m entirely on the other side of that Dark Place and what put me there was you.

You. The iron in my veins that drives me forward, giving me strength.

You. The roaring lion, pride of my Pride.

You. My every tomorrow.

You.

When the bough breaks the cradle will fall, and down will come numbers.

Because you always stand tall.

Follow this journey on Down in Front.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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The Answers I Wish I Had When My Baby Was Diagnosed With Down Syndrome

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I sat in the cold, sterile NICU staring at my newborn baby. I’d just found out my daughter had Down syndrome, an atrioventricular heart defect and was in congestive heart failure. An open heart surgery was in my sweet baby’s future.

As a first-time mother at age 25, I was completely caught off-guard with these diagnoses. With Jaycee’s birth going nothing like I had planned, my mind struggled to process what was happening presently and what would happened in the future.

So many questions… about my life, Jaycee’s life and our family’s future. It was overwhelming knowing I had none of the answers. Only time would reveal them.

Ten years later, I have the knowledge I wanted while I held my infant daughter with a million questions running through my mind.

Will Jaycee survive the open heart surgery?

Yes. At 3 months old, the surgery will go without a major complication, but she will need oxygen for three months afterwards. Unfortunately, small leaks in her valves will result in another heart surgery when she is 2. Getting the news that a second heart surgery would be needed would be devastating for a period of time, but this won’t be the last heart issue she has.

When will I “get over” my child’s diagnosis?

The first year will be tough. Actually, it will be the toughest. Adjusting to her Down syndrome and heart problem while to trying to start Jaycee in therapy to address her developmental delays will just be the beginning. The first year will also include a failed hearing test, which later prompts tubes, and a referral for strabismus surgery when Jaycee’s eyes start turning in. Asthma will also become an issue before age 1.

You will be pushed to your emotional limits. Things you believe about God and faith will tested. While you sit and try to figure everything out, you realize it’s very easy to love Jaycee. Eventually, you understand there will be things throughout her life to “get over,” and that acceptance is a process, not a definitive moment.

Will I be able to add more children to our family?

Yes. You will have a son a few years later. He will be healthy and develop ‘typically’ (except for a few minor issues). Seeing him grow up and surpass Jaycee in some areas will be hard at times, but you quickly learn to view each child on their own life path. Jaycee and he will be great friends until we play too many “Frozen” songs in the van. Then, he will get annoyed.

Will my marriage suffer?

Jason and you have stayed together through everything. There have been stressful times without a doubt. Together, you have worked through them all. Date nights become increasingly hard. Most of the quality time is found after the kids go to bed, which is thankfully at 8. You both remain dedicated to the things you vowed to do. You never knew “for better and for worse” would mean
watching your daughter have several surgeries, be on a ventilator a couple of times for illnesses, and be in so many emergency health situations.

Will Jaycee be able to read?

Yes. In pre-school, Jaycee was memorizing sight words and reading them “aloud” through signing. Her ability to memorize is one of her strengths that you found early on. Currently, Jaycee is reading first grade material, which is pretty good considering she says less than 30 words. Her expressive vocabulary is hindered by severe childhood apraxia of speech, but she uses sign language and her speech generating communication device well. Sometimes, you are sad because your child can’t say much, but this eventually just becomes a fact and doesn’t feel like a loss.

Will I be caring for Jaycee forever?

Ten years into this journey, I can say that you are planning to be Jaycee’s caregiver long-term. Given her limited speech and daily medical interventions, Jaycee requires fairly intense supervision and care. Things could change, but realistically speaking, Jaycee will most likely never live independently.

But here’s the thing, it doesn’t bother you anymore. The thought of caring for her the rest of your life no longer overwhelms you. You love her. Whether she lives with you until she’s 18 or 45, you will help her as long as you can. She is your daughter and friend. Somewhere through the years the thought of caring for Jaycee forever changed from sadness to love.

There have been moments in Jaycee’s life when her future wasn’t guaranteed. These moments have taught you the value of appreciating each day with her and solidify one key thought:

Life is better with Jaycee.

mother holding baby in hospital

Follow this journey on A Special Purposed Life.

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What's Your Take on This World Down Syndrome Day Video?

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Ever year CoorDown, an Italian organization that advocates for people with Down syndrome, releases a World Down Syndrome Day (March 21) video. In this year’s (below), you see a montage of actress Olivia Wilde while another’s voice describes her hopes, dreams and challenges.

In the last few seconds, we realize that voice belongs to AnnaRose Rubright, a 19-year-old with Down syndrome. She asks, “How do you see me?”

Rubright is a full-time college student at Rowan College at Burlington County in Pemberton, New Jersey. She works part-time at Breakthru Physical Therapy and Fitness in Medford, New Jersey, and is a Special Olympics athlete.

*Sign up for our Down Syndrome Newsletter*

This World Down Syndrome Day, let’s make an effort to raise awareness and end stereotypes about Down syndrome. People like Rubright have the same aspirations and experience the same feelings as anyone else. They’re already contributing to society in important ways, so it’s time to put an end to preconceived notions.

To learn more about people with Down syndrome, you can check out these resources and organizations:

We also recommend a few of these bloggers in our Mighty community:

What do you think about the video above? Let us know in the comments below.

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Mom Fights to Stop Sale of 'Offensive' Down Syndrome-Related T-Shirt

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t shirt that says 'i survived a down syndrome, what's your superpower?' One mother has launched a Change.org petition to remove a shirt being sold on Teespring.com that reads “I Survived A Down Syndrome, What’s Your Superpower.”

“This shirt is extremely offensive. It is hate speech!” Dana Thomas, the petition’s creator, wrote. “Down syndrome is not anything to survive. It is a beautiful thing.”

Teespring.com is a “user-generated platform,” meaning anyone can design and sell a shirt on it.

“This t-shirt makes my blood boil,” Taylor wrote in her petition. “My baby is not something to ‘survive.’ I often [wonder] how I survived without her. Please help make awareness that this is not OK and should not be sold.”

Thomas, who has a 1-year-old daughter with Down syndrome, contacted TeeSpring about the shirt and says she received this response:

Thank you for providing me with that information and thank you for getting in touch and bringing this matter to our attention. We apologize to those who may be offended by content posted on Teespring.

Teespring is a user-generated platform where people from around the world create various designs to express their views, interests, and opinions on a number of different issues. We strive to maintain a platform for free expression, even in cases where we don’t condone or agree with the views and opinions expressed by our users.

For more information about Teespring’s policies and our content guidelines please visit: http://teespring.com/policies/acceptable-use

Despite this response, Teespring.com’s content guidelines say the company does not allow hate speech:

We do not allow campaigns that promote or glorify hatred toward people based on their age, race, ethnicity, national origin, gender, gender identity, sexual orientation, disability and religion, including people, organizations or symbols dedicated to hatred against these groups. Additionally, we will not allow campaigns including content that bullies, attacks or threatens specific individuals.

By Monday evening, Thomas’ petition had reached 983 signatures.

Teespring.com has not yet responded to The Mighty’s inquiry.

In October, when Sarah Risko was browsing a different user-generated T-shirt site, SunFrog Shirts, she came across a shirt that read “I freaking hate adults with disabilities.” Risko, who has four learning disabilities and fine/gross motor dysfunction from undergoing chemotherapy as a child, reached out to the company and demanded the shirt be removed. Eventually, she won. A SunFrog Shirts representative responded to The Mighty saying the shirt had been removed and apologizing for the incident.

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When I Couldn’t Find the Words to Speak Up for My Brother With Down Syndrome

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I sat at my own table, pretending to be engrossed in other things, while my classmates chattered, giggling like everything was OK. But the topic of discussion that filled those four walls that day made the room very dark in my memories.

I sat there alone in a room full of girls belittling people with Down syndrome. The discussion began with an actress who has Down syndrome who played a role on a famous television show. Giggly voices filled the dark room and their comments showed no kindness towards that actress, claiming her Down syndrome ruins the show entirely. Moving forward, to the general topic of their chatter, one girl expressed her inability to understand the reasoning behind G*d creating people with Down syndrome. The discussion went on with hurtful words that remain in my memory of that dark classroom.

And I sat there, watching my teacher, waiting for her to speak up. In those moments, tears journeyed down my cheeks sprinkling my notebook with disappointment — disappointment in those girls for their discussion that etched so much hurt in my mind, but even more so towards that teacher who kept quiet.

The difference between the silent me of the past and the outspoken me of today is that when I sat there crying to myself in the darkness of that classroom, I could not find the words to tell those girls that my brother, Chaim, has Down syndrome and explain to them how wrong they were.

Today, I keep that memory accessible in my mind where I can use that silent moment to push myself and stand up for Chaim in my day-to-day encounters. I couldn’t then, but I can now. I can stand up for the fact that people with Down syndrome work hard to be successful and make their place in the world.

I speak up in situations that constantly parallel those girls. The difference is: the people I tell now are older and seemingly more mature. Yet the echoes of that dark classroom find their way into today’s world despite the age difference. Perhaps it’s because of people like that teacher, who sat silently instead of teaching those girls about acceptance and the value of every person created. And so the situations I defend my brother in are generally filled with older versions of those who may never have been taught better.

Now I can speak up and say clearly: My brother Chaim has Down syndrome, and each year that goes by makes all of the difference in who he is and how much of an impact he makes in the world. Chaim, and every other person with Down syndrome, is not “worthless,” like those girls labeled him in the darkness of that classroom. But rather he is accomplished, and worthy of the life I believe G*d gave him.

I couldn’t then, but I can now.

girl and boy leaning on wooden desk
Arielle and her brother, Chaim.

The Mighty is asking the following: Describe a moment you were met with negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Celebrate World Down Syndrome Day With This Sock-Filled Photo Series

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