Pediatric doctor exams newborn baby girl with stethoscope in hospital

I Owe It to My Son to Write This Letter to the Doctor Who Diagnosed Him With Down Syndrome

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Dear Doctor,

It may seem a little strange to you that I, the mother of a former patient of yours decided to reach out to you, but I feel I owe it to my son — and I’ll explain why.

A little over two years ago, my son Gavin was born. Unbeknownst to his father and me, he had a congenital heart disease. You were the pediatric cardiologist who found the defects in his heart, which led to your suspicion of Down syndrome. You were also the “poor soul” that had to inform my husband and I that our son most likely had Down syndrome. I say “poor soul” because I distinctly remember, at some point during the consultation with you, feeling rage — and you were who I directed it at.

“What do you even see!?” I hurtled questions at you in not the nicest tone. I remember even getting snappy with you because you told me he couldn’t be in the room with me because he needed to stay in the nursery to receive 24-hour monitoring. How dare you provide best possible care to my son and take his well being into consideration over my own, postpartum feelings! Ha!

You see, I was never really mad at you, but the words that escaped from your mouth that evening caused me to have a temporary inability to sort through the emotions I felt and how to navigate through them. So for that, I do owe you an apology. At the time, my husband and I were both completely devastated. We had no clue what this meant for our family or even what to do next. You spoke to us with such assurance, compassion, respect, and understanding. Over the last couple of years, I have heard a great number of diagnosis stories that have amplified my gratitude for you and your caring way of speaking with us. Fortunately, Gavin’s heart defects closed up on their own within his first year. But that also means we only had a few followups with you and you missed a great deal of his story. Ironically, the same day you told us his heart was completely healed was the same day we noticed a strange rash on his legs and brought it up to his pediatrician. From there, labs were drawn and Gavin was diagnosed with acute myeloid leukemia. He spent the next six months receiving chemotherapy treatments. I am beyond thankful to be able to write to you that Gavin has been in remission for nearly a
year.

Earlier I said that I owe it to Gavin to write this, and this is why: I feel I did him an injustice that night of his Down syndrome diagnosis. I feel the impression we left upon you was that of devastation and brokenness. And, while we may have been feeling those things in that moment, I want to make clear to all we ever have and ever will come in contact with that devastation and brokenness are in no way the words to describe  what Gavin has brought into our lives. I feel it would be an atrocity to allow anyone to believe that. He has brought us joy, purity, love, laughter, bravery, strength, lessons of acceptance, adventure, wonder, opportunities, new connections and friendships, and strengthened bonds. He has improved our lives in immeasurable ways, and I wish I could go back to that night and make known all of these things to myself, but I can’t. So now all I can do is shout from the rooftops how blessed our family is to have Gavin. Please take away from this that we don’t despair but instead bask in the unending happiness that is having Gavin in our family.

Kind regards and well wishes,

Taylor

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Thinkstock photo by Casanowe

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To My Little Brother With Down Syndrome, Who Changed My Life

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The day you were born, January 29, 2015 was such a big day. Dad phoned and told me you arrived at 7:05 in the morning. I woke everyone else up to tell them the news. Elsa was fast asleep in her Moses basket and was none the wiser that you were here.

You were just a tiny little man lying in a hospital bassinet. We had no idea where the next couple of weeks would take us. You were all right at first, but then had to go to NICU, and then they decided it was best to move you to Norfolk and Norwich University Hospital. They were sure they would care for you better and find out why you, our little Rory, were so ill. We waited; you turned 3 days old and were still in hospital. I sat at Mum and Dad’s with Rosie, Ryan, Reilly, Jonny and Elsa watching TV and trying to pass the time and take all their minds off the fact that you needed surgery.

You were there eight long hours. I waited by my phone for all that time, waiting for that phone call to say you were all right, that you had come out of recovery. My phone rang and we got the call we wanted. It was Hirschsprung’s disease. Eight hours to give you a stoma and colostomy bag.

Instead of messy nappies, you had a bag. Instead of wipes, Mum had a medical supply bag she had to carry around. I say had because seven months later they reversed your stoma, and you stayed in hospital for a little while, just under five weeks. Apart from the odd hospital stay, you have been home ever since. You will be 2 on Sunday, and what a two years this has been!

Rebecca and Rory making funny faces at the camera.
Rebecca and Rory.

The things we have achieved, the places we have been and the milestones we have hit are amazing. Some people may say you having Down syndrome is a bad thing — but it makes you, you. The first six weeks of your life have made our entire life stronger. At this point, you are completely unaware of your impact on me, on us. But I want you to know I am a different person because of you; we all are.

Rory, people may not realize but it won’t take them long to see it. People like you, people with Down syndrome make everyone else change. Some people don’t like change, and maybe that is what they are afraid of. I don’t believe it’s you having Down syndrome they don’t like; maybe it’s that they don’t want such a little man to change their whole concept of life.

To look at you, how tiny you are, you would never think you have achieved so much. We have been to London for Don’t Screen Us Out, and your photos have been shared all over the internet to raise awareness of DS. You were also on the cover of a nationwide magazine, Woman, and had an article about you inside. We couldn’t be prouder of you, Rory.

As I am writing this and watching you walk around the furniture, I wonder if you will ever read this. I am sure that like every other annoying big sister in the world, I can find a way to embarrass you, one way or another!

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Mélanie Ségard Will Be France's First Weather Woman With Down Syndrome

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Mélanie Ségard, a 21-year-old Frenchwoman, who lives with Down syndrome, posted a video on Facebook asking people to like her Facebook page with the hopes of attracting the eye of her local news channel.

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Read the full transcript: 

This Woman With Down Syndrome Petitions to Present the Weather

Mélanie Ségard, 21, always dreamed of being a weather woman on TV.

Segard, who has down syndrome, posted a video asking people to like her facebook page.

She hoped this would attract the attention of her local news channels in France.

“I’m different, but I want to show everyone that I can do a lot of things.”

“I want to prove it by presenting on TV.”

Within a week, her video has been watched almost three million times and more than 189,000 people liked her page.

The National Union of Charities for Parents with Disabled Children (UNAPEI) helped Segard with her campaign.

“The 100,000 likes are a sign of strong support – we are taken aback at how quickly the page became a success.”

Ségard has caught the attention of France 2 and BFMTV.

She was invited to present the weather on both stations on March 14 and March 27 respectively.

This would make Ségard France’s first weatherperson with Down syndrome.

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When a Flight Attendant Realized How a Dog's Yips Affected My Son

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Our flight to Florida was a full one. My 10-year-old son Wil, who has Down syndrome, was sandwiched between his 11-year-old twin sisters, Katherine and Elizabeth, in a three-seater row. I sat in the same row just across the aisle from them. We had made it through the first two hours of the flight without incident. With only one hour to go, a tiny dog started to yip. It happened to be in the row directly in front of my kids.

Wil is sensitive to noise, especially high-pitched noises. I asked Elizabeth to take Wil’s noise protector headphones out of his carry-on bag. She was able to find his headphones quickly, but he was already in such an agitated state that they did not calm him down as they typically do.

After some shuffling, I was able to help Wil from his seat and pull him to mine across the aisle.

Almost immediately, a flight attendant was standing by my seat, blocking Wil’s view from the still yipping dog. The flight attendant handed Wil a packet of pretzels, then discreetly showed me the snack size Milky Way bar she was holding (in nonverbal fashion of asking my permission). I nodded yes.

“Here, Wil,” she said. “This is what you do. Take a bite of pretzel, then a bite of chocolate. It’s the best.”

Wil was immediately intrigued by this and calmed down. The flight attendant continued to stand there, blocking Wil’s view of the dog that just would not shut up already! I asked the flight attendant’s name, and she said it was Marcie. I thanked her for her kindness. She stayed and chatted with Wil, asking how old he was, what was his teacher’s name and what he liked to do for fun. Though the high-strung dog never stopped its banter, Wil (with headphones still on) was now freely answering Marcie’s questions with only a few sideways glances in the dog’s direction.

Our plane’s descent was soon to come, and I knew Wil would need to return to his seat. Thanks to Marcie’s kindness and two extra Milky Ways (“for later,” she said with a wink), Wil returned to his seat between his two sisters without fear. Katherine and Elizabeth also received compliments and Milky Way bars from Marcie for being wonderful sisters.

The dog owners never apologized. Maybe they were embarrassed or maybe they figured it was not their problem. I don’t know and never will. Yet without their dog, Katherine, Elizabeth, Wil and I would never have known Marcie. For the first two hours of our flight, she was a friendly flight attendant. Her smiles, as welcoming as they were, would have no reason to stay in our minds. The dog incident is what prompted me to ask Marcie’s name so I could thank her personally for her forthcoming kindness.

Thankfully Marcie attached herself to this memorable flight, turning it into a very good one, indeed.

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Reflections on Turning 40 as the Mother of a Child With Down Syndrome

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Knock! Knock!

Who’s there?

40!

40, who?

This isn’t a joke, people. I’m about to turn 40. Like, in a few weeks.

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Somebody pass the chocolate. The dark kind, because I hear that’s the best for your health. I guess I have to worry about that stuff now.

When I was younger, I dreamed of being older. Now that I’m older, I dream of being younger. Kids might do that to you. They change you. Throw in a diagnosis of Down syndrome and you might find yourself never wanting to leave this earth. That’s where I find myself, afraid of aging.

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I was 30 when I started having kids. My oldest child is about to turn 10. My middle child is 8. Then there’s Willow. She is 3 1/2 years old. She’s the one who makes me want to ignore my upcoming birthday. She’s the one who makes me wonder what would happen if I left before her.

Right now, the news headlines seem scary. Really scary. I have no idea what the future looks like for disabled individuals like my daughter. As a former news journalist, I try to stay informed, but I’ve also learned it’s not healthy for me to get too caught up in the drama of the day as it just causes undo stress. And, if it’s true that stress can take years off your life, I want no part of it. With such uncertainty in the horizon, I want to be here for my kids, especially Willow.

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While turning off the tube can spare me some stress, I’m unfortunately unable to avoid it in other areas of life. I try, but boy, I swear it’s impossible sometimes.

Over the past several years my family has adopted the motto, “Be comfortable with the uncomfortable.” That’s meant a new job for my husband, a new home in a new town, and a bunch of new challenges in life. Overall, we’re comfortable, but when you add unexpected things into the equation like sickness or a dead car, stress pops up. I shudder to think how many years I’ve lost because of worrying about things like a simple sneeze.

Stress isn’t the only thing that ails me. I feel my age. My knees ache, and I’m tired all the time. I have a strong desire to take care of myself, exercise even, but time is my enemy. I guess you could say “self-care” isn’t easy for me. I hear that’s common for parents of children with disabilities. It’s also the middle of winter and freezing cold where I live, meaning getting outside to walk or jog is near impossible this time of year.

Even with desire and time on my side, a 20 below wind chill keeps me inside. The ironic part is I had a nurse tell me the other day I had “great health.” According to a recent blood test my numbers all look good, my good cholesterol, my bad cholesterol, my blood sugar, etc. At least I’ve got something going for me. So, why am I so worried about turning 40?

Willow needs me to be young. She needs me to keep moving. She keeps a busy schedule between her therapies and school and various appointments. She needs me there to teach her things. She needs me there to guide her. She needs me to advocate for her until the world recognizes she has a voice of her own.

Not only do I want to stay youthful, I want to stay alive. Plain and simple. As a Christian, I’m taught not to fear death, and really, I don’t. I look forward to heaven. But, there are days when I feel frozen with the thought of what I might be leaving behind. What happens if my husband and I go before Willow? My husband, by the way, is even older than me.

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I’d love to think that Willow will be independent enough to live on her own someday, but I have no idea. I’d love to think that if Willow weren’t able to live on her own one of her older siblings would take her in, but I have no idea. I’d love it if I didn’t have to think about this, but that would mean Willow dying before me. And, well — I just can’t.

Good golly, I don’t like that I’m turning 40.

As much as I try to ignore it, my old age is coming. The signs are all around me, even in the most unexpected places. OK, maybe the gray hairs aren’t so unexpected. I am raising three kids. But, even my e-mail mocks me. Just this week, I got an invitation to join AARP, an advertisement for a seniors only cell phone service and an offer for 65 percent off that popular little blue pill. I’ll have you know I did not respond to any of those offers.

Forty is coming whether I like it or not. So, today I will live. And I will love. Because as I mentioned earlier, kids can change you and mine have taught me how to do both of those things. And, Willow? She also taught me how to dance and how to smile. Everyday, no matter what. Wouldn’t you know, both of those things have proven health benefits and could quite possibly add years to my life.

Willowdance

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John Cronin, Man With Down Syndrome, Creates Sock Company John's Crazy Socks

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John Lee Cronin, a 21-year-old with Down syndrome, started John’s Crazy Socks, an online sock store with his dad, Mark Cronin.

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This man with down syndrome turned his passion for socks into his own company.

John Lee Cronin, 21, is the cofounder of John’s Crazy Socks.

His dad helps run the technical parts of the website, but says that john is the face of the business.

“[John] came up with the name and participates in discussions on issues such as which awareness socks to create.” -Mark Cronin, father

“There is no ‘make work’ for john. He has real responsibilities and works hard every day.”

John speaks with customers and suppliers, assembles packages and delivers local orders.

Since launching in December 2016, they have sold over 1,000 pairs of socks.

Each package includes a handwritten thank you note from John and candy.

“Our mission it to spread happiness through socks. Giving back is part of our spreading happiness.”

A portion of profits go to the Special Olympics as well as autism and Down syndrome nonprofits.

To learn more, visit johnscrazysocks.com.

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