21 Moments With My Daughter With Down Syndrome

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It’s just an extra 21st chromosome. One piece of genetic information that seemed at one time to define my daughter. For me, Down syndrome was a huge and overwhelming diagnosis back in 2006 when Jaycee was born and diagnosed.

Time has passed, and my attitude has changed since her birth. Down syndrome is just part of her story and ours. It is not the story.

In honor of World Down Syndrome Day, here are 21 moments from the story of my family’s life with Jaycee.

1. First ultrasound picture — It was a glimpse of my first-born with knowledge that a daughter was in our future.

2. Snuggles after delivery — Before we knew about Jaycee’s Down syndrome and atrioventricular canal defect, there were a few hours when my husband and I just marveled at our new baby without worry. We examined every finger and smiled at every movement and sound.

3. A doctor’s announcement — After waiting four long hours during Jaycee’s open-heart surgery, I was relieved to hear the surgery went as planned and all was well with our infant.

4. First wobbly steps — Jaycee took her first little steps during a physical therapy session. All those hours in therapy sessions and hard work paid off!

5. Walking for Down syndrome — Our family teamed up to raise money for our local Down syndrome group and participated in an awareness walk. It would be the first of many times “Team Jaycee” united.

Black and white photo of mom and daughter with [@specialpurposedlife] on the photo

6. The best word ever — There’s nothing sweeter for me than hearing my child say my name. “Mama” melted my heart.

7. First school drop-off — Taking Jaycee to preschool as a little 3-year-old resulted in tears from one of us. I’ll let you guess who.

8. Jaycee becoming a big sister — During my pregnancy with my son, I explained to Jaycee she was going to have a baby brother soon. Right after Elijah was born, Jaycee came into the hospital room to meet him. She signed, “baby,” as she peered into his bed while the nurse weighed and measured him. She instantly loved him.

9. Self-feeding — After months of occupational therapy, hand-over-hand spoon feedings, and trials of many spoons, the day Jaycee fed herself with a spoon was cause for celebration. We could eat together as a family at the same time, and she could be more independent.

10. Second first steps — After a long and serious stay in ICU when she was in first grade, Jaycee came home with a wheelchair. She could not climb steps; she could not even sit up unsupported. When her strength came back slowly and she started walking again, it was a gift to watch.

11. Jaycee, the competitor — Jaycee loved participating in the softball throw at the track-and-field for Special Olympics. She kept looking at those of us in her cheering section to make sure we were all paying attention.

12. The three big words — “Love you, mama!” After weeks of breaking up this phrase into simple word approximations, Jaycee one day repeated it back. It sounded like, “Uh oo, mama,” but it was the beginning of a beautiful exchange between us.

13. School dancer — After some bravery on my part, I signed Jaycee up to participate with her peers in the yearly school fundraiser cheerleading and dance group. Jaycee knew the moves and proved she could do amazing things if I didn’t limit her.

14. Elsa and Anna — Jaycee was fortunate to receive a trip through Make-A-Wish, which meant she got the royal treatment at the Orlando theme parks. She absolutely loved meeting the “Frozen” cast after a show. Her joy was precious.

15. A lifelong relationship — At a family gathering, Jaycee marveled at her cousin dressed up as a deer. From then on, Jaycee fell in love with her cousin, who she refers to as, “Deer,” ever since.

16. A pep rally — Jaycee’s school held an energetic pep rally for the athletes participating in Special Olympics. Jaycee ran through the lines of smiling cheerleaders. Instead of bursting through the paper banner at the end, she crawled underneath it. It was such a funny moment.

17.   A friend party — When your elementary school daughter wants to have a birthday party with friends, you make it happen.

18. A baptism — After weeks of teaching and preparing, Jaycee went through the water baptism at church like any other child. She came up out of the water smiling, just like all of us who were surrounding her.

19. My daughter on stage — During a pageant for girls with intellectual disabilities, I saw my little girl transform into a princess and enjoy being in the spotlight. Her abilities were celebrated, and she continues to show off her crown to visitors at our home.

20. Water coaster enthusiast — Water coasters are a thing and my daughter loves them. While I scream my head off wishing for the ride to come to an end, my daughter shows no fear and laughs all the way through.

21. Home plate with Molina — When Jaycee won an opportunity to meet Yadier Molina during a Cardinal’s game through our Down Syndrome Association, there were several seats filled with our friends and family cheering for her. Molina autographed her baseball right after she did.

Our life with Jaycee has set us on a path we did not anticipate. Then again, who could predict some of these moments we’ve had with her. Some of them have been extraordinary, a few have been challenging, and others have been gratefully mundane.

Time has shown us there is a full and good life beyond a diagnosis. Happy World Down Syndrome Day!

Follow this journey on A Special Purposed Life.

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Please Don’t Make Assumptions About Our Lives Because My Son Has Down Syndrome

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When you are a parent, worrying pretty much comes with the territory. We all do it; it’s just part of the job. I’ve always envisioned our first-born Skyler getting a good education, making friends, getting a job, traveling, getting married and having a family. Of course nothing is set in stone and it’s not guaranteed, but I think this is what many parents envision for our children. Will this also be possible for our son River, who has Down syndrome? Yes, absolutely, and I will always encourage and support him to do whatever he wants in life. Unless that involves him wanting to ride a motorbike. Not going to happen! Anything else though, he will have my full support and belief in him to achieve it. But I understand it might not be an easy road.

What I don’t do is let worries about his future overwhelm me, and I certainly don’t let them affect our lives. They’re there in the back of my mind, yes, but for the majority of the time, that’s where they stay. I’ve always been a positive person, and I’d also like to think I am a strong person. We can let our fears consume us or we can move them aside and get on with living a good life. And we do have a good life — great in fact.

The hardest thing for me is not these worries; the worries are the easy part for me, personally. I guess I’m just kind of good at getting on with things. The hardest part for me is the assumptions. Assumptions from people I have never even met. Assumptions about my son, his brother, me, my husband and us as a family. Assumptions about everything. Assumptions, assumptions, assumptions!

Mom holding her son, with face turned toward him, smiling

Assumption: My life as a mum is hard. — No it’s not. It’s genuinely, hand on heart just not hard. It has difficult moments, yes, although touch wood not many of those yet, and I’m sure more difficult moments to come. But do I class my life as hard? Not even slightly. In fact we have a great life. We have a nice home, our business is doing well, we travel, we smile, we laugh, we love and we go to bed happy. Not everyone can say that. Your pity is misplaced if you are aiming it in our direction. We are very, very lucky. I am of course talking about our own personal situation. I hate it when people assume I have a tough life, so I would never assume that another family has it easy. We all have different circumstances, and our children all have different needs. We just shouldn’t assume one way or another what a person’s life is like.

Assumption: Skyler has a hard life. — Skyler is gentle and kind and seems to me to enjoy life hugely. He also adores his brother; they have a beautiful bond. He also has the patience of a saint with his mischievous and feisty little brother. He is his biggest supporter and celebrates every achievement with an awesome enthusiasm. Both of my boys are showered in attention, love and time. I worry about the future, yes. I worry that Skyler might face more responsibilities for his brother, especially when my husband and I are no longer around. It’s something I think about often, but all we can do is work our butts off to ensure that they are both financially secure and hope that their beautiful bond continues. I do hope that Skyler will always help us in regards to his brother’s care, along with any future children we may have. But I don’t expect it, and I certainly wouldn’t pressure him into it. Skyler is River’s brother, his friend and his protector, and my heart aches with pride for him.

Assumption: River has a hard life. — River seems to me like a happy little boy. He has a wicked sense of humor and is very, very determined — a character trait that will serve him well in a struggle for acceptance in this world. Of course he may face hardships; life can be tough when you are different. It’s my job to prepare him for whatever comes his way and teach him how to overcome obstacles, and most of all teach him how to overcome the attitudes of others. I intend to succeed in teaching him how to prove others wrong with his head held high, a smile on his face and twinkle in his eye. I’ve been doing that myself for years; of course I’m going to teach my sons to be exactly the same! Nobody tells us Balozis what we can and can’t do, believe me.

There are so many other assumptions we have to deal with, such as Rivers not being healthy, or that he’s always happy, or that he will never have a job or travel — none of these are true. Another assumption is that our life would be better if he didn’t have Down syndrome — definitely not true.

What I tell myself to remember is that people’s misconceptions about my son and our life can only hurt us if we give them power. I’m not saying that people’s opinions have a huge negative impact on us, as actually they really don’t. But it is really frustrating that people who have no experience with Down syndrome at all can decide what our life is like. People I have probably never even met!

Nobody has the right to decide that I have a hard life without even knowing me. Even more so, nobody has a right to decide that River doesn’t have a good quality of life without even knowing him. When River was born, he was everything I never knew we needed. In such a short space of time, he has helped me see the world through new eyes and has become my biggest teacher. Actually both of my sons have taught me more since their births then I ever knew before them. I will be forever grateful to them for that gift. River is a blessing to our family, and whatever we face in our future we will face together. There is nothing that could ever change the fact that I wouldn’t change him for the world.

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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.

Read the full story: 

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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