What Doctors Didn't Tell Me About My Daughter's Down Syndrome

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When my daughter, Willow, was born we heard over and over again how weak she was because of her Down syndrome. Doctors and nurses used words like “fragile” and “frail.” Willow’s medical file was filled with even uglier words. “Failure to thrive” topped the list. Hypotonia, or low tone, quickly followed. Every word reeked of weakness. If only they had told me…
Jennifer holding baby Willow.


This past week, I used every muscle in my body to restrain my daughter as she lay in my lap, mask on her face, breathing in the medicine that would eventually put her to sleep for surgery. She’s 3 and a half years old. I’m 39! What happened to the girl once described as weak?

Willow’s “sleepy medicine” eventually kicked in and her tonsils and adenoids were removed. She also got some new tubes put in her ears and a fancy pants hearing test performed on her while she was under anesthesia. Despite my fears, everything went smoothly. We even have proof that Willow can hear us perfectly! That whole “I can’t hear you” bit she pulls won’t work anymore. Nope.

Willow in the hospital but looking cheerful.

Going into surgery, I heard recovery would be rough, so I prepared for the worst. I ordered suppositories in the event Willow wouldn’t take her pain reliever. I bought every flavor of gelatin Wal-Mart carries. I even called my mother to stay with us for a week and help out. Sorry, husband.

While Willow woke up from surgery a little sad, she quickly recovered, especially when she saw the hospital had some of her favorite DVDs on file. Within a few hours she was slurping a grape popsicle and watching  Disney’s “Tangled.” Weak? I don’t think so.

Willow with a purple mouth from eating a grape popsicle.

The next day Willow was released from the hospital and we headed home. While it took her a good day before she would drink or eat anything, Willow wasted no time getting back to her favorite pastime, dancing.

Willow dancing with her sister.

We used a total of one suppository. My older kids ate most of the gelatin. And Grandma, well, I guess you could say she carried the “burden” of being Willow’s favorite dance partner for the week.

Willow dancing with her grandma.

I won’t say it’s been easy, but I guess I thought it would be harder.

If only they had told me…

If only doctors had told me the baby they were labeling weak would someday be the definition of strong.

If only they had told me the baby so many would doubt in the beginning, would grow to inspire.

If only they had told me the baby they thought was fragile would prove unbreakable, surviving multiple surgeries and procedures.

If only they had told me that despite my baby looking weak, Down syndrome is characterized by strength.

If only they had told me… But then again, I don’t know if I would have believed them. I needed to see it for myself. And boy, is she beautiful. Strong and beautiful.

Willow and her sister smiling.

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21 Things Everyone Should Know About People With Down Syndrome

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March 21 is World Down Syndrome Day. Since 38 percent of Americans know someone who has Down syndrome, I thought it would be beneficial to spread some awareness about these people who make up so much of our population. Without further adieu, here are 21 things everyone should know about people with Down Syndrome.

1. They come in all shapes, sizes, genders, and races. They don’t all look like the actors you see on TV!

2. They can go to school from preschool age all the way up to their mid-20s. If they want, they can even go back to school once they’re older.

3. Once out of school, they can get jobs based on their skills and qualifications.

4. Many can go shopping and provide for themselves.

5. They can socialize well with others and often have friends in school, at work, and in their day-to-day lives.

6. Many can take driver’s training and maintain a driver’s license.

7. Some individuals enjoy watching TV for hours on end.

8. Some individuals could spend an entire day running around outside, playing sports or just basking in the sun.

9. At the proper age, they can drink alcohol.

10. They are liable to get the stomach flu and a common cold from time to time.

11. Some individuals are social butterflies, always wanting to be the center of attention or the class clown.

12. Some individuals are quiet, and more content observing conversations than being a part of them.

13. They can have many hobbies, like photography, drawing, and writing.

14. They can go on to have a wide range of successful careers, such as acting, singing, teaching, and so much more.

15. Some individuals can carry on lengthy conversations about a multitude of topics.

16. Some individuals are more keen on listening than talking.

17. They can have many emotions, including joy, fear, sadness or anger.

18. Provided they aren’t allergic, they can have and take care of pets.

19. They can have boyfriends or girlfriends, husbands, wives, and children.

20. They can live long and happy lives surrounded by their loving families.

21. Genetically speaking, they have all or part of a third copy of chromosome 21, hence World Down Syndrome Day occurring on March 21 (3/21).

If you look over this list, you may notice something. These facts aren’t unique to people with Down syndrome. In fact, we can all relate to the first 20 things mentioned on the list. The only difference is that extra bit of chromosome 21. That’s all. While that genetic difference affects some cognitive processing and physical features, they live the same lives. They have families and friends, schools and jobs, and a wide range of hobbies and emotions and characteristics. To sum it up, they’re just like everyone else.

So, on World Down Syndrome Day, I think this is something important to keep in mind. By all means, let’s celebrate people with Down syndrome! Let’s show them we know how awesome they are. But, let’s also remember to do that every other day of the year. Treat them like you would treat anybody else. Remind them that they’re just as awesome as the kids they sit next to in class or the coworkers they chat with around the water cooler.

Let’s use March 21 as an opportunity to let the world know that people with Down syndrome are no different than anyone else!

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Why Allies Matter to the Down Syndrome Community

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The wheel has turned round for a fifth time since my son Rukai joined humanity, and here we are on the cusp of another World Down Syndrome Day  —  Tuesday, March 21. “Yeah, rah rah, so what?” you might say. “What on earth can you tell me that someone already hasn’t?”

AHA! There’s the rub…

I can’t tell you a thing.

I can’t tell you a thing, because just as I predicted five years ago, Rukai is pretty much exactly like any other kid, and there’s only so much clinical jargon I can hurl about when it comes to the condition which is supposed to make him an anomaly.

But (and you know where this is going) he’s still not. He’s a kid. A 5-year-old boy called Rukai. He is no one to fear, nor to pity, nor to discard.

A kid with possibility. A future. Feelings and emotions and a distinct, raging lack of opportunity lain before him by others because he has a learning disability.

That is what is to be pitied. But I digress…

Of my son, I can’t tell you a thing, other than to ramble on about what he has learned, how he’s developed, how much more deeply he’s embedded himself into my heart — a heart which in size is quite pathetic in comparison to his own. That little, huge heart which seems to me to begin at “delight” and end at “joy.” That heart which loves first, questions and answers all in one breath and demands to light up, to elevate, to soar.

I have not seen Rukai do self-pity, or jealousy, or hatred, or envy, or malice.

He sure does crabby and stubborn and annoyed, but the real dark stuff? No, I have only seen light here.

And this is a problem, how?

The other day I saw a clip of some televised interview where the subtitle still referred to my child as a “Down baby”— those poor uneducated editors or producers or whomever’s job it is to categorize human beings throwing that phrase out as they’d throw my boy out, without any inkling of what they’re missing. The presenters’ discomfort seemed palpable to me, as if they no idea where to look or what to say other than “he’s so cute!”

But I know better. So many of us know better. And as God is my witness, I hope with all my nattering for half a decade, and from all the others who know, with all our angst and anger and fear and upset and triumph and compromise and adjustment, with all those things…

I hope you know better, too.

Unless you want a full run-down on every milestone my son’s hit, or every holiday we’ve taken, every party we’ve attended, every school day we’ve enjoyed, every dance class we’ve loved, every friend we’ve made.

I can’t tell you a thing.

Because what I’d say would be so typical, so ordinary, so normal, that it would bore you to tears. But out there in society, there is such an undertow about this condition, the misinformation churning, threatening, sucking people under the mire of falsehoods, of confusion, of gut-wrenching fear.

Lies, lies and damned lies.

Yet here I sit, pounding away on keys that have so many stories hidden within them. I know the past year has been difficult for the Ds community, in terms of political tides, so-called medical “advances,” those things which, prior to having Rukai, I would have welcomed with open arms. Because I only heard what medicine and society were saying: “Problem.” I only heard what fear was saying: “You can’t handle it.”

And today, five years on, I answer them all: Joy. Fortune. Stronger than you think.

I won’t kid you. Life is hard. But before Rukai, life was harder.

Because before Rukai I didn’t have unconditional love. I didn’t have someone who was like a sponge, eager to learn and sharp as a tack. Although he takes longer to learn, he does learn. But more importantly, I learn.

More still, you learn.

So now that you’ve heard me for that half-decade… Now that I’ve written those words which stick in your craw, which jab you like a sharpened elbow in a shopping mall…

Take them.

Take them in, pack them up, wrap them in a tight bow, and give them away.

Go ahead and teach someone else. Tell them. Help them see. Help them understand.

Down syndrome is not a disaster. It is a difference. People with Down syndrome are people. They are not a malfunction. They are not a flaw. They are not a problem.

They are not “they.”

Rukai is my son. Rukai is my heart. Rukai is my world. Rukai is a person. He is not “Down syndrome.”

Since the day he was born, I made a promise to him, in my cold hospital room, listening to Adele singing about a fire starting in her heart. Mine was blazing too.

“I’ve got your back,” I whispered. “Welcome to the world, little man.”

If you’re reading this, if you are feeling this, if you care about this — take it and teach. Welcome him to the world once and for all.

I cannot do this alone.

#WDSD17

Follow this journey on Down In Front, Please.

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What I'm Celebrating on World Down Syndrome Day

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World Down Syndrome Day is celebrated every year on March 21 (3/21). Fitting, because an individual is diagnosed with Down Syndrome when they have three copies (instead of two copies) of the 21st chromosome. Down Syndrome International recognizes the day as one to “help raise awareness of what Down syndrome is, what it means to have Down syndrome, and how people with Down syndrome play a vital role in our lives and communities.”

Many people in the community, myself included, tend to happily celebrate the day and celebrate Down syndrome itself. I feel like there is so much to celebrate. So much to celebrate? If I was reading that statement before my child with Down syndrome entered my life I think I would have a hard time understanding what that meant. Why would one celebrate the difficulties that often come with Down syndrome? Because they’ve taught us perspective on what is truly important in life. Those issues can be big ones, life-changing, but they have taught me what to worry about and what not to waste my energy on. That is only one of the many reasons why I’m celebrating on World Down Syndrome Day.

I’m celebrating having risen above a difficult diagnosis and becoming stronger because of it.

I’m celebrating that Down syndrome is not scary like I once thought.

I’m celebrating the feeling that I am so lucky to have this unique individual in my family’s life, this individual whom I often find myself staring at in amazement.

I’m celebrating the joy my child brings me and my family.

I’m celebrating the unique physical Down syndrome characteristics that make my toddler so cute – her almond shaped eyes, her tiny ears and nose.

I’m celebrating the new friends I’ve made since entering this community, friends from as close as a few blocks away to as far as other countries.

I’m celebrating the diversity that Down syndrome brings to the world.

I’m celebrating the education my daughter brings to strangers on the street who may not know much about Down syndrome but then see her and interact with her and realize she really isn’t that much different than any other child.

I’m celebrating the advancements that have been made related to Down syndrome such as inclusion in schools and longer life span thanks to medical discoveries.

Most of all I’m celebrating that I am happily on my own unique parenting journey and that Down syndrome is a welcomed part of it.

Follow this journey at www.threewithatwist.com.

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Thinkstock photo by Den Kuvaiev

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This Coffee Shop Hires People With Down Syndrome And So Much More

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Hugs & Mugs cafe sells a variety of retail items, speciality coffee and gelato and is entirely run by people with Down syndrome.

Read the full transcript:

This Place Is So Much More Than Just a Coffee Shop.

Hugs & Mugs, located in Hoffman Estates, Illinois, is run by adults with Down syndrome.

Opened in 2014, Hugs & Mugs is a full-service retail, speciality coffee and gelato cafe.

Hugs & Mugs sells custom mugs, apparel, calendars and jewelry.

The cafe is part of Gigi’s Playhouse Hoffman Estates, a down syndrome achievement center.

Prospective employees take a free 12-week course focusing on confidence, health and workplace skills.

Then they are enrolled in an 18-week career training with Hugs & Mugs.

Employees run every aspect of the business including design, production, food prep, baking, packaging and customer service.

To learn more visit gigisplayhouse.org/hugsandmugs.

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This Man With Down Syndrome Expresses Himself Through Photography

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Geoffrey Mikol is a professional artist with Down syndrome who owns his own gallery, River Bend Gallery in Galena, Illinois.

Read the full transcript:

This Man with Down Syndrome Opened His Own Art Gallery

Geoffrey Mikol, 23, is a professional artist, who uses photography to express himself.

Mikol has been studying and practicing photography for almost a decade.

Now he owns River Bend Gallery in Galena, Illinois.

Mikol started his business in college, showing his work at Chicagoland art shows.

After graduating, he decided to pursue photography full-time.

His entire collection can be seen at River Bend Gallery.

To learn more, visit riverbendgalleries.com.

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