To the Doctor Who Listened When I Said My Son With Down Syndrome Is Not a 'They'


son in play car
Rukai

We once had four medical appointments to attend over 12 days. Four. In the name of “health monitoring.”

“We must monitor his vision. Their eyes are commonly not working properly.”

Yet my son Rukai can spot a bit of fluff in the carpeting from 20 paces and immediately go to retrieve it.

A rattle of keys in the front door will turn his head. His eyes go wide and fingers point at the arrival of his daddy. Down the hall, I open the bathroom door. One door is quickly disregarded for the other, and he comes charging my way to interrupt, his curiosity piqued.

“We must monitor his hearing. They commonly have hearing loss.”

Pediatrician #1 could not confirm another issue, off to Pediatrician #2. I told P2 that over the years, we’d left off therapists and unnecessary appointments because Rukai drives his own development. We don’t want his default to change from easygoing, chilled, to pressured, overworked. We don’t want to strip away his autonomy.

He is free. He is driven. We protect that at all costs. And there he was only 3. A 3-year-old should play. A 3-year-old should not sacrifice his daylight to waiting rooms in search of issues which may-or-may-not-materialize. A 3-year-old should default to happy.

“Oh yes,” said He. “They are very happy people.”

(Except when he’s being a monstrous little tyrant, my good man. Come to ours when we’ve got a new menu item and watch me try to get it down him. If that’s happy, then Bozo the Clown got it all wrong and we’re living amongst the comedy of Pennywise.)

Saturday came, and we had appointment four of four: The Baseline Echo. Two years since discharge from cardiology at Great Ormond Street. Yes, that amazing place. Yet there we were having A Baseline Echo. Doctor innocuously suggested he may call us in for a follow up, and Tiger Mama pounced. The hell you will.

“He was discharged two years ago,” said I.

son playing with model car
Rukai

Doctor was calm. Doctor was the very best doctor I had come across in my entire 13 and a half years living in the U.K.

Doctor and Tiger Mama pointed and counterpointed and reached an agreement. Daddy sat quietly, watching, listening, asking. Best not poke a stick at this Quiet Man or he’d become Tiger Dad, and you wouldn’t want that tag team in a very quiet hospital that early in the day. Ever.

Doctor was calm. Heart too, was calm. Heart was fine. As we knew. Born with two holes in it, that day there were none. As we knew. No surgery required. As we knew.

Rukai 1 : Pessimism 0.

Rukai wins.

As we knew.

We left shaking hands. We left shaking heads. Four appointments. Twelve days. About 33 percent of our time over the better part of a month spent visiting doctors when there was and always has been pretty much nothing wrong. We are so blessed that he is so healthy. But he isn’t the only person with Down syndrome with good health. Down syndrome is not a disease. Rukai’s condition affects him according to his personal genetic makeup, and that is the only common thread we trust.

People with Down syndrome are not all the same. The fact is, there is no They.

Medicine calls it “health monitoring,” but it feels an awful lot like Big Brother. This is in no way “the life.” But this is The Life. We drop everything, we drive to and fro, we pay, we park. Doctors — strangers — poke and prod. Rukai thrashes and shouts. Cut it out. Quit poking me. You just weighed and measured me two days ago. Stop shining that light in my eyes. Get that thing out of my ear. That gel on my chest is cold. I was absolutely fine and you are now antagonizing me. Why?

They are not always happy. Damn it, stop suggesting it.

And stop calling my son They.

I told the Doctor (because he did drop a “they” early on in the conversation) that the services were awful where we lived, that those people were intrusive and patronizing and disrespectful.

They threw Rukai into a box labeled “Down syndrome” and discounted him. So we packed up and moved house to begin again.

(And seriously, who does that?)

“He is our son. He is our child. He is our world,” said I. “He is not They.”

And this Doctor, he nodded. He smiled and he nodded and he kept scanning for a problem that did not exist. He searched for one acronym, and I corrected him that it was the other acronym we were looking for, that the notes were wrong, that it was “column B,” not “column A.”

And this doctor, he smiled and he nodded and he seemed to get it. I wish for the world, that they all could get it. I apologized for my short fuse and explained at length why Tiger Mama pounced initially, and he understood. That was after he told me I was right. About the acronym. It really was column B.

And then he said it. “You just want a ‘normal’ life. If nothing is wrong, you just want to get on with things.”

We were there to check Rukai’s heart, and there mine may well have skipped a beat.

And so we agreed to a suggested check up five years hence — “suggested” being the operative word; no “mandatories” here.

Thank you for hearing us.
Thank you for listening to us.
Thank you for understanding us.

I told him where we came from and to where we’ve gone.
I told him how bad it was there and what we endured.
My words did not ricochet off. They nestled in and had a cuppa joe.We turned to go, and Rukai turned towards him.
We turned to go, and there was a high five.
We turned to go, and Rukai reached out. To the Doctor who Reached Out.
Rukai climbed into his lap and delivered a cuddle.
Rukai is the world’s greatest BS detector, and that cuddle was there for the giving. To the Doctor who Reached Out.This is The Life. But Rukai is now very firmly in the driver’s seat.

Thank you, Doctor.

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When a Man in the Elevator Didn't See the Whole Picture of My Son With Down Syndrome


picture of baby with breathing tube
Kaleb

Well it finally happened.

The other day I had a first I knew would eventually happen; it was just a matter of time.

While leaving an appointment a gentlemen in the elevator with us looked over at my son Kaleb, and I watched the recognition in his face which followed with, “Oh bless you guys.”

Even though I knew something like this would eventually happen, I was unsure of how to respond.

Part of the gentleman’s statement might have been geared towards the oxygen and monitor with Kaleb, which depending on the extent of his knowledge could have even been part of what he meant, knowing that those with Trisomy 21 are more prone to
health issues and are evident with Kaleb’s extra accessories. In reality the oxygen and monitor have more to do with his premature birth at 28 weeks. We don’t always go into the full birth story, NICU stay and medical file with every person we meet.

I really do not believe this guy meant anything negative by his statement. As we were talking, we discovered a mutual friend who has a daughter with Down syndrome. He began talking about her and it appeared to be an attempt to make sure we knew and understood that he was friends with her. But I was aware that he saw Kaleb’s diagnosis first.

In the beginning, after receiving the diagnosis, I struggled with this, so I get it — even though others assured me I would not always think or see his diagnosis first. Already at only 6 months of age, I am experiencing this and find myself thinking about it less and less. I also know when others view Kaleb they might first see Down syndrome. My hope and prayer is that they will not stop there, that they look beyond the diagnosis and see Kaleb.

Later while talking with big brother Kaden, I got out my phone, pulled up an email and showed him a picture that his teacher sent me of him playing at daycare. He thought it was cool that his teacher had taken his picture and sent it to Momma. We looked at it, and we pointed out his Kansas City Royals World Series Championship shirt, his Thomas watch and how much fun he seemed to be having. He then proceeded to take his finger, trying to move the picture around and said, “I want to see more.” He told me about his friends and other toys in his room. He knew there was more going on than what the picture could capture. It showed just one snapshot of what was going on. The picture didn’t include his friends who were playing nearby, it didn’t show more of the toys around or the feelings he felt while playing.

It is the same for many when they see someone who looks or acts differently. They see the initial picture, a picture that seems different. I have gotten to know Kaleb, I have fallen in love with the person. When I see Kaleb I see his beautiful eyes and his irresistible chubby cheeks. I see his spunky personality — a personality that shows itself more and more. I picture those big smiles I love and our “talks” we have as he coos at me. As with Kaden’s picture I know there is more to Kaleb than what meets the eye. That snapshot of his outward appearance or of his medical equipment doesn’t tell the whole story. 

March 21 is World Down Syndrome Day, a day where we recognize those individuals who are born with a little something extra. It is a day to celebrate those individuals who so beautifully show us every life can leave its mark and has something to offer this world. While having an extra chromosome gives them something in common, we recognize and celebrate their individual personalities and varying talents/abilities. It gives us a day to show the world that there is more to the picture than what meets the eye.

Follow this journey on Adventures, Reflections, and Life Lessons.

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 community@themighty.com. 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.


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

Half of These Parents Have Kids With Down Syndrome. Can You Tell Who They Are?


Every parenting experience is different — full of challenges, downfalls, triumphs and joy. All children, whether they have a diagnosis or not, have their own set of talents and struggles. The video below is a beautiful reminder of this, where parents and siblings of children with and without Down syndrome talk honestly about the most rewarding and the most challenging experiences their families face.

Midway through, you’re asked to guess which loved ones have a child with Down syndrome and which don’t. Chances are you can’t tell the difference. The clip ends on this note: “We’re all in this together.”


 

Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

4 Years After Our Daughter’s Down Syndrome Diagnosis, We Know She’s Limitless


Becoming a parent is a sobering thing. You’re completely responsible for making sure a new little person has everything they need to thrive, grow and learn.

Knowing that little person has something that will make her “different” makes you worry about her having friends, going to school, getting picked on or left out. Knowing that little one will have medical challenges — such as a heart defect — makes your own heart hurt in a way that only parents who’ve been there can truly understand.

Just over four and a half years ago, with nearly four months remaining in our pregnancy, my husband Mark and I learned that the baby we were expecting had a heart defect that would require open-heart surgery. That led to a diagnosis of Down syndrome. It was a harsh reality to us in those months. We were angry, hurt, scared, and so much more.

But now, four years, five surgeries, and countless doctor and therapy visits later, we feel blessed. Although our journey with sweet Lila has not been “typical,” or easy, it has been filled with purpose. We can face our journey with strength and courage and determination. Lila does it that way — with every step, every therapy session, every exercise, every challenge to work a little harder. And we are all rewarded when she accomplishes something some parents may take for granted — drinking from a bottle, a straw and now a regular cup; or learning to feed herself, sit up, crawl and now to walk and run.

Lila’s diagnosis doesn’t define her, and we won’t let it limit her, either. We might have to fight a little harder to make sure others don’t limit her, but we know she’s giving it her all, so we will, too.

Lila Mozingo
Padgett’s daughter, Lila.

Depending on the source, as many as 85 percent or more of babies pre-diagnosed with Down syndrome are terminated. That is an incredibly personal decision, but one I believe should be made with accurate information and resources. Thanks to our incredible genetics counselor, we had compassionate care from the beginning. She put us in touch with Family Connection of South Carolina and others who had walked this path before us.

As is the case with any pregnancy, the only certainty was uncertainty. There was no way to know how severe our baby’s health problems would be, or what physical or cognitive challenges she would face. But that was no different from when I was pregnant with my now-11-year-old son. Of course, there was plenty to worry about, but without question, we knew her life was worth everything we could give, and that she deserved it as much as any other child.

Today, Lila is a happy, healthy 4-and-a-half-year-old. Sure, she has many doctors and spends time each week working with therapists, but she also spends her days in preschool, loves music and dancing, and is eager to give you a high-five or proudly tell you her name is “Lila Zingo.” Sure, she has an extra 21st chromosome, but she also has bright blue eyes and a smile that lifts even the lowest of spirits. If she can embrace life with such enthusiasm, we can certainly share her challenges and accomplishments with others. And others can certainly be more accepting and inclusive — of Lila and of everyone around us who might look or act a little “different.”

March 21 is World Down Syndrome Day, and what better day to celebrate our #LimitlessLila — how far she has come, and all she has accomplished in those very full four and a half years.

We know Lila’s purpose and her life have big meaning. We hope to share even a small portion of that with others, and dispel the myths and limitations falsely associated with Down syndrome. We know Lila’s life is limitless — just as any child’s should be, surrounded by people who love, support and challenge her!

Here are a few facts about Down syndrome from the National Down Syndrome Society:

Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with it — in all races and economic levels.

A few common physical traits are low muscle tone, small stature, an upward slant to the eyes and a single, deep crease across the center of the palm. Every person is unique and may have these characteristics to different degrees or not at all.

People with Down syndrome have increased risk for congenital heart defects, respiratory or hearing problems, Alzheimer’s disease, childhood leukemia and thyroid conditions. But these conditions are now treatable, so many lead healthy lives.

Life expectancy has increased dramatically, from 25 in 1983 to 60 today.

People with Down syndrome attend school, work and contribute to society in many ways.

To learn more about Down syndrome, visit the National Down Syndrome Society website.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. 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.

Why I Turned to Broadway for World Down Syndrome Day


Theater, like all art forms, is meant to educate, influence, organize and inspire. As a young actor growing up in New York City, I was fortunate enough to have been involved in youth theater companies where we were encouraged to do just that.

We wrote and performed our own material, mostly about politics, social justice, profound personal experiences and the occasional skits about zombies and superheroes. It was very empowering! I no longer perceived theater as a spectacle but as a forum that could affect great change.

As my career developed, so did my passion for arts in education. I spent a decade as a teaching artist in New York City public schools as well as pursuing my career in the professional theater. It was a difficult balance, and things got even more challenging when I became a parent. I put all my time and energy into being a mom. My life was all about baby, and Broadway was a dream put on the shelf. But after a few years, I realized my obnoxious belting in our tot music classes meant that it was time to dust off my equity card and get back on the stage!

Before long I was performing again, meeting wonderful artists and making great connections in the process. Things were going swimmingly, and I was hopeful that it was just a matter of time when Broadway called. But there was quite a different role that I was about to win, which would be the most important role of my life. Five years after having become a mother to my daughter, I became the mother to identical twin boys with Down syndrome, Julian and Noel.

twin sons

I had a prenatal diagnosis at 12 weeks, and I was terrified, in shock and incredibly sad. Although I loved the little boys growing inside of me, I couldn’t help but think of the future I thought they would have. I had never met anyone with Down syndrome, and the medical professionals I spoke with had painted a very bleak picture.

I began to educate myself. Fortunately, because of the tremendous efforts of Down syndrome advocates, I found a plethora of support groups, videos, blogs, articles and essays, all shining light on the achievements and capabilities of people with Down syndrome.

One documentary in particular called “Dakota’s Pride” put the joy back into my heart. I learned that people with Down syndrome are capable of anything. Given the right amount of love and support, there wasn’t anything they couldn’t achieve. I knew my boys would be just fine. Their future would be bright. They were already loved by their family, and soon, the world would meet them and love them as well.

pins that say "extra chromosome, extra cute!"

Soon after Julian and Noel were born, my first step in advocacy was starting a community Facebook page where I shared pictures of them doing the same adorable things that any typical child does. Then I dabbled in blog posts and essays, hoping to inspire others and raise awareness. On World Down Syndrome Day (WDSD), we got hundreds of people to wear funky socks! But this year in particular, I wanted to do something different for WDSD. I had pins designed for our family that featured a charming extra chromosome. My friends loved the design and showed interest in buying some. So I ordered more and sold some to friends and family with the proceeds going to a local charity supporting Down syndrome.

Actor Ralph Macchio with Venessa Diaz.

When I learned the theme of WDSD this year is “My friends, my community,” it occurred to me to try and gain support from my beloved theater community. Who better to ask for support than the people who educate, influence, organize and inspire people every night on the stage. I took to the Great White Way and distributed my pins, along with information about WDSD to several theaters where my friends work. I even had the pleasure of meeting some celebrities and Broadway stars in person and explaining my awareness initiative. They were more than happy to help by wearing our pin and sharing it on social media.

I specifically asked them to use the hashtags #wdsd16, #myfriendsmycommunity and #julianandnoel. I can’t wait to see who gets involved on March 21. It warms my heart to see people, especially those who never knew anything about Down syndrome, take an active role in spreading awareness on World Down Syndrome Day.

It’s been a rewarding journey advocating for the boys. And it’s been even more rewarding to be their mother. Every day is a lesson in faith and commitment. Every milestone they achieve is a result of hard work and unwavering dedication. They are art in motion.

They inspire me to keep dreaming, not of a lead role on Broadway (although that would be nice), but rather, of a world in which they are met with kindness, respect and acceptance at every turn. A world in which they are people first! As long as we keep raising awareness for the rights of people with disabilities, we show the world that all humans are important in society and shouldn’t be defined by their disability. My sons are not their diagnosis. They are toddlers. They are not Down syndrome. They have Down syndrome. They are my boys. They are just Julian and Noel.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. 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.

When Socks Took on a Deeper Meaning for My Daughter With Down Syndrome


World Down Syndrome Day is celebrated annually on March 21, or 3/21, to represent the three copies of the 21st chromosome that people with Down syndrome are rockin’. It is a call for awareness, and more importantly, acceptance. We wear funky, mismatched socks to start a conversation.

The first World Down Syndrome Day we participated in was when Everly was just 4 months old. She was my snuggly, sweet newborn. We “rocked our socks” and I shared our story on social media. I read “47 Strings: Tessa’s Special Code” by Becky Carey to my first-grade class and shared what it meant to have Down syndrome. They had lots of questions. They had watched my belly grow and saw pictures of her as a tiny newborn while I was on maternity leave. They were invested in our story and accepting people with differences. I received emails from parents that afternoon about the story of a little girl named Tessa their child listened to, and how Everly had something called Down syndrome, and she is more like them than different. I sprinkled a bit of awareness onto 18 6-year-olds that day, who shared it with their friends and families. I cried happy tears reading those emails and hearing them on the playground with friends from other classes. This was why World Down Syndrome Day was important.

image
Sydnie’s children.

Wearing funky socks is about more than a silly outfit. It’s about starting conversations. It’s about spreading hope and acceptance to new generations. It’s about Everly and her homies with extra chromies. We’re investing in their future and shaping their present with love.

This is our third year participating in World Down Syndrome Day. Everly is now a spunky 2-year-old with loads of determination and sass. This year we will be rocking our socks and posting our pictures with #MyFriendsMyCommunity to join the movement. Please join us in this conversation; our children depend on it.

Follow this journey on Happily Everly After.

The Mighty is asking the following: How would you describe your disability, disease or mental illness to a child? If you’ve done this before, tell us about that moment and the child’s reaction. If you’d like to participate, please send a blog post to community@themighty.com. 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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