The Apology I Owe My Son 3 Years After His Diagnosis

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I walked into a shop with our week-old baby boy nestled into my shoulder. One of the shop assistants ran over and squealed with delight, “That is the most gorgeous baby I have ever seen in my life!”

I smiled at her but, in my head, I wondered if she would have said that if she knew he had Down syndrome.

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I took a thousand photos of him and each one I pondered over, deciding which to post on social media. I deliberated over which photographs didn’t make his “disability” quite so obvious.

As I woke up each morning following the diagnosis, I experienced a sinking feeling in my stomach as I remembered, yet again, our baby was now labeled with a “chromosomal abnormality.” I’d never asked for this to happen to us.

Now, as I wake up each morning, three years on, seeing my son’s beautiful face and hearing that little voice call out, “hello” is the highlight of my day.

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Now, I look back at those squishy newborn photographs and see how perfect he was. And still is.

Now, I wonder how we got so lucky.

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To my beautiful boy,

I hope you know how lucky we think we are to have you in our lives. I hope you didn’t notice when you were tiny and we spent too much time gazing at your almond-shaped eyes, noticing their difference instead of their beauty, and worrying how Down syndrome would fit into our world.

I hope you always know how loved you are. By us. By your extended family. By your tribe. I hope you forgive us for when we were so caught up in a diagnosis we forgot about the perfect baby right in front of our eyes. I hope you know how often , because we have been rewarded with such an awesome light in our lives.

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We are so lucky, buddy. Oh so lucky.

A version of this post originally appeared on the Mummalove Facebook page

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? 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 Video Every Dad Who Has a Child With Down Syndrome Should See

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Dads are just the best.

In anticipation of Father’s Day, the Jerome Lejeune Foundation, a research and advocacy group for people with genetic intellectual disabilities, released a video honoring fathers of kids with Down syndrome.

The video, called “My Dear Dad,” offers the viewer glimpses into the father-child bond from infancy to adolescence. Shot mainly from the perspective of the child, it honors the important role fathers play in the lives of kids with Down syndrome.

It attempts to dispel prejudice against children with Down syndrome by gently reminding viewers that children with special needs are children above all,” reads the description on the Jerome Lejeune Foundation website.

Enjoy the video below: 

 

As a special tribute to fathers and their children living with Down syndrome, the Jerome Lejeune Foundation launched a video this week in honor of Father’s Day called “My Dear Dad." Please watch and share this heartwarming video that provides a glimpse into moments shared by a father and his very special son. #MyDearDad

Posted by Jérôme Lejeune Foundation on Monday, June 15, 2015

Related: 16 Secrets of Special Needs Dads

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These 2 Photos Taught Me Something We All Need to Understand

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The other day I was trying to get a picture of the newly mowed lawn (which had previously been a prairie). My son Carter followed me out, so I decided to include him in the picture.

“Jump!” I shouted. And so he did.

Later that day I was back out with all three kids, and I decided to get a jumping shot of my daughter Addison too.

“Jump!” I shouted. And so she did.

When I uploaded the pictures, I was struck with the contrast between them. Addison has jumped with her feet off the ground before, but for some reason today this was as high a jump as she was able to muster. Carter excels at jumping and I felt happy to just be able to capture one of them so clearly.

When you first look at these pictures side by side, your first thought might be, “Poor Addison. Down syndrome is holding her back from achievement.”

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But before you complete that sentence I need to give you more background. You will notice in Carter’s jumping picture, he’s in sleeper pajamas. For Addison’s jumping picture, she is in a super cute outfit.

You see, Addison is very good at dressing herself. She will take herself to the potty, put on a fresh pull-up, and then put on her pick of clothes (or sometimes things I have laid out). Carter? He thinks he is being majorly tortured if I expect him to actually take off his sleeper by himself to go potty, let alone dress himself in new clothes — I’m a mean mommy with too high of expectations!

What’s my point?

I feel like this excellently illustrates something I have been feeling for a while — we are all good at different things and none of us should be judged based on the things we aren’t good at just because someone else along side us is good at them. And vice versa.

These skills grow and change as we grow and change (oh goodness I hope Carter isn’t in college some day calling me to come help him with his sleeper zipper). But the truth of the matter is, we will always have different areas in which we excel and areas in which we simply don’t.

Sometimes I think people look at Down syndrome and see only the difference in jump heights…

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… without taking into consideration there are many other moments when it’s Addison flying into the area and Carter is barely lifting his heels. Moments like before the first picture while she dressed herself and he refused to try.

I don’t say this to compare the two or to pit them against each other. I say this merely to remind myself of a simple concept having a child with special needs has taught me:

We are all good at different things.

Sometimes the things we are good at aren’t easily defined, tangible things. Sometimes it’s an emotion, a gesture, an artistic expression. Sometimes it’s a way we make someone else feel or even what we teach someone else through who we are. Because of this, outward “what we are good at” appearances can be deceiving.

I have three kids. I know they aren’t all going to be brilliant at standardized testing, or athletics or music. But they are all going to be brilliant, just in their own way. And there is no “better than” or “best” when it comes to areas in which to show brilliance. All areas are equal.

You know how I know this? Addison taught me. Because while I am good at thinking inside the box and judging based on perceived intelligence, Addison is really good at demonstrating outside the box how intelligence doesn’t always look how I once thought it did. Intelligence is a sneaky thing and it’s all around us in many different forms.

Sometimes intelligence means struggling to communicate verbally and finding a million other ways to say exactly what she means.

Sometimes intelligence means not following instructions, not because they aren’t understood but because she has a mind of her own and a will to explore.

Sometimes intelligence means smiling and laughing hysterically over the smallest things because the value in the little things are comprehended without having to be taught.

We are all good at different things.

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 Always look deeper than the first glance. Always assume there is more there. Search to find the “good at” in both sides of a situation where you are tempted to judge.

Living with three children who are very different from each other, I feel like I have a first row seat to this life lesson.

And sending a child with special needs off to kindergarten in the Fall, this is what I wish her kindergarten world would know. No, she won’t jump as high as the rest of her class in academics, or PE or even in feeding herself at lunch. But she is good at other things. Other things are just as important. You just have to care enough to notice.

A version of this post originally appeared on Everything and Nothing From Essex

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? 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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Teen With Down Syndrome Gets Lady Gaga’s Attention With One Performance

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Lady Gaga is great, but our new favorite pop star is Katy Gaga.

Katie Dorman is a 17-year-old who has Down syndrome and has been mostly nonverbal since the fifth grade, Dorman’s mother told the “Today” Show. There’s one person who gets Dorman especially excited — Lady Gaga.

Dorman, a student at Suffield High School in Connecticut, transforms when she hears Lady Gaga’s music. Donning a blond wig and sparkly sunglasses, Dorman becomes “Katy Gaga” when she’s on stage (video below).

Katy Gaga performing Poker Face
Katy Gaga performing Poker Face

The high school sophomore is involved in United Theater, an arts company that focuses on bringing together performers of all abilities. Hoping Dorman could meet her favorite performer, her theater friends started the hashtag #SendKatieToGaga, according to NBC Connecticut. On June 17, Lady Gaga tweeted about Katy Gaga.

Lady Gaga on Twitter: "Wow this is so cool! KatyGaga you're the best! a-p-p-l-a-u-s-e!"

Lady Gaga’s foundation, Born This Way, then reached out to Dorman’s family. On June 29, Dorman and three friends will get to attend Lady Gaga’s concert with Tony Bennett at the Oakdale Theatre in Wallingford, Connecticut, according to “Today.”

Watch Katy Gaga perform Gaga’s “Poker Face” below:

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Why I Won’t Stop Thinking About My Daughter’s Extra Chromosome

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We saw a specialist right after KC came home from the NICU who had a lot of important things to say. But out of everything he told us, only one thing stuck: He told us to mark down the date we go a whole day without thinking of KC’s extra chromosome. He said this would be a “good day,” meaning we were finally starting to see her just like anyone else.

I couldn’t put my finger on the reason why that comment didn’t sit well with me, and I’m not sure why it keeps replaying in my mind over two years later. I think I get what he was saying, that a day would come when Down syndrome wouldn’t be the first thing we think about our youngest daughter. 

I’ve thought about it so many times over the last two and a half years, I’ve even tried to figure out how often I actually think about her extra chromosome. Are my typical thoughts so different now that we have KC? Husband. Coffee. Messy house. Meals. Coffee. Dishes. Laundry. School. Coffee. Are the kids all dressed and bathed today? 

Do the words “Down syndrome” just randomly pop into my head? 

Do I somehow subconsciously think, “Oh my KC, how precious, Down syndrome, what time does she need to be at therapy today, you know…for her Down syndrome?”

Surly I don’t think about it every day? Do I?

And how can I think about not thinking about it without actually thinking about it?! 

And if I do think about it, what’s so wrong with that? 

Then, I go back to that comment.

I obviously want inclusion for KC. I want her to always know without a doubt how beautifully she was created. I don’t want someone else to miss out on experiencing the person within her because they can’t look past a diagnosis. So what is my issue with his comment? Don’t I write because I want others to see her in the same way? 

As I’m sitting here looking at pictures to hang in the local OB-GYN’s office, with the hopes of showing someone the joy a very surprising diagnosis brought us, it finally occurs to me: I want people to see KC has Down syndrome. I don’t want people to pretend she’s someone else. I don’t want to mask this amazingly unique, small part of who she is. I don’t want people to see her exactly the same way they see everyone else. What I want is for her to be treated exactly the same way as everyone else. Inclusion, for me, is not about treating everyone the same because you see them exactly the same. It’s about learning to treat everyone the same in spite of their differences while learning some wonderful things about each other along the way. 

So I say, Mr. Specialist, while I don’t spend my days pondering over genes and chromosomes (And trust me, I’d LOVE an excuse for why I couldn’t finish laundry or the dishes today!), I’m not sure I’ll be as proud as you think when I realize I’m not thinking about KC’s extra chromosome. That little bit of extra has managed to teach me far more than I ever imagined, and it deserves some serious credit.

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A version of this post originally appeared on Good Things Come in 3.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? 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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21 Signs You Might Be the Parent of a Child With Down Syndrome

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Raising any child can be a challenging, joyful and rewarding experience, but parenting a child with Down syndrome can involve its own unique quirks. The Mighty and Downs Designs Dreams*, an organization that designs clothing specifically for people with special needs, asked our readers on Facebook to complete this sentence: You might be the parent of a child with Down syndrome if ____.

Take a look at some of our favorite responses below for a glimpse into what it’s like to parent a child with Down syndrome, and add your own answers in the comment section at the bottom.

You might be the parent of a child with Down syndrome if…

 

1. “’Flexibility’ is your mantra.” — Kristin Thomas Cutlip

A quote from Kristin Thomas Cutlip that says, 'Flexibility’ is your mantra.]

2. “You know that baby steps are giant leaps.” — Sally Kennedy

3. “You understand a diagnosis is a direction, not a destination.” — Ali Hammons

4. “You smile… a lot!” — Kim Sztajer Parnis

A quote from Kim Sztajer Parnis that says, [You smile… a lot!]

5. “You’re used to every other kid charging to greet your kid with excitement when you enter a room.” — Team KC UpHearted

6. “Sloppy tongue kisses become the norm.” — Crystal DiPasquale

7. “You can see beyond outward appearances.” — Melissa King

8. “Your next big hug is minutes away.” — Liz Schwartz

A quote from Liz Schwartz that says, [Your next big hug is minutes away.]

9. “Your child’s therapists know more about your personal life than your shrink.” — Katherine Allison

10.“You have your priorities straight.” — Anna Powers

11. “Your child wants to hug everyone they see.” — Calvin Nelms

12. “Even the ‘naughty’ milestones are celebrated.” — Debora Miller

A quote from Debora Miller that says, [Even the 'naughty' milestones are celebrated.]

13. “You know what love is.” — Janilee Holmes

15. “Your child sleeps with their chin resting on their knee caps.” — Calvin Nelms

16. “A trip to the grocery store is like escorting the prom queen/king to the ball.” — Liz Schwartz

17. “Everyone in your town knows you by sight as the mom of the kid who shouts ‘hiya’ to everybody, and they ask you where he is and how he’s doing if they see you out on your own.” — Kerry-Ann Fender

A quote from Kerry-Ann Fender that says, [Everyone in your town knows you by sight as the mom of the kid who shouts 'hiya' to everybody.]

18. “You don’t treat [your child] any differently than any other child.” — Ann Reichelt

19. “Your 11-year-old still comes and crawls in your lap to snuggle every day.” — Patrice Bagwell

20. “You know how incredibly blessed you are because of [your child] and their diagnosis.” — Angela Palmer-Fisher

21. “Your child has taught you to see the world through the eyes of unconditional love.” — Nancy Dyer

A quote from Nancy Dyer that says, [Your child has taught you to see the world through the eyes of unconditional love.]

**Some answers have been edited and shortened.

*Downs Designs Dreams is the home of two exclusive clothing brands for people with special needs: Downs Designs and NBZ Jeans. Both brands offer stylish, high-quality jeans with elastic waists, soft stretchy denim and no button or zipper which facilitate independence. The organization is currently pending 501(c)3 nonprofit status and has recently launched its Adopt-A-Jean campaign where they donate a pair of our jeans every Friday

Related: Grandma’s Clothing Line for People With Down Syndrome Needs Your Help

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