Two years ago, on this very day, you gave me some news that changed my life. You told me my unborn son would be born with Down syndrome. This must have been hard for you. I don’t know if this was the first time you had to do this or if you had done it before. Perhaps you felt you held the responsibility of crushing my dream of who I imagined my child would be.

I believe you delivered the news to me the best you knew how. You said you were sorry many times. And you quickly rushed to help me with my options. Options that I took very seriously. I was traumatized and your solutions were very enticing. I did not like the news you were telling me and if I could get out of the situation I was willing to listen. I knew nothing about Down syndrome and I looked to you for guidance. You told me everything you knew about Down syndrome and it sounded very bleak. You told me about all the things my son, Cody, would not be able to do and all the possible problems he may endure. It sounded horrible and I thought maybe your suggestion of terminating my pregnancy or giving Cody up for adoption would make my life and his much better.

I am writing you this letter because you deserve to know the outcome of my story. I want you to know that your role as the deliverer of a Down syndrome diagnosis to future mothers may look a lot different when you hear my story about Down syndrome. Yes, I needed to know the hard stuff about Down syndrome, that is your job, but I wish you would have started with the positives, because there are so many!

Despite Cody’s Down syndrome diagnosis, I have a very capable, happy, adorable little boy who is easy to love. I absolutely love being his mom. I cannot imagine my life without him. It’s different and not what I expected, but it is not bad, it is not scary and it is definitely not something to be sorry about. I believe terminating a pregnancy just because of a Down syndrome diagnosis should not even be a consideration. People with Down syndrome can achieve so much and contribute great things to our world. Cody is so much fun, with an energy we can barely contain. He is full of smiles, has big blue eyes that melt your heart and his contagious giggles make him a constant joy to be with. He fits in perfectly with our family and is always right in the middle of the fun with his big brother and sister. His Down syndrome diagnosis does not define him, and honestly we forget about it most of the time. 

I have met a lot of parents of children with Down syndrome since I received my diagnosis and none of them are unhappy or miserable being a parent to their child. Women that receive a Down syndrome diagnosis need to know this!

Sure, some days are hard and frustrating and the extra time needed to accomplish milestones can be challenging, but my other kids are also hard and cause me frustration, just in other ways. Cody has not decreased my quality of life at all. In fact, he has given me new purpose and I have grown so much as a person since he has entered my world. I am more patient, less critical, I hand out grace more freely and I have learned about inclusion and acceptance of all people.

 

This growth has led to me being a part of starting an inclusive program for students with intellectual disabilities at the college where I work. Yes, people with Down syndrome can go to college! This fall 12 students with various intellectual disabilities, including Down syndrome, will come to Judson University in Elgin and live in the dorms, eat in the cafeteria, go to classes, participate in co-curricular activities and gain work experience through both an on-campus job and an off-campus internship. These students will be prepared for independent living and pursue competitive employment at the completion of the program. The world is such a better place for people with Down syndrome thanks to so many who have seen the value and significance that these wonderful human beings have despite the stereotypes and false perceptions. I feel honored that I am a part of moving society forward in inclusion and acceptance.

Approximately one in every 700 babies born in the United States is born with Down syndrome, so there is a good chance you may have to give a Down syndrome diagnosis again. If you do, please don’t tell them you’re sorry. Do not start with the negatives. Communicate to them that it will be a different road than expected but that it is not a bad one. Educate them about the many therapies and services ready to help their child achieve. Tell them that people with Down syndrome are included in mainstream school and can even go to college and hold meaningful jobs. Make sure they know that most parents enjoy having a child with Down syndrome and instead of giving them the phone number to an abortion clinic, give them the phone numbers of some local moms that have children with Down syndrome so they can seek advice and reassurance from them.

My hope is that my story has inspired you to learn more about Down syndrome and that you will deliver the news of any future diagnosis with encouragement and hope. Reinforcing to these parents that, despite their fears and probable challenges, they need to be brave. Brave to have faith and embrace this different and wonderful gift that they will soon be so thankful for. And please, don’t feel sorry for them, they just hit the jackpot.

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Thinkstock image by BerSonnE

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“Sissy!”

It’s the clearest word in Willow’s vocabulary. It’s also the word she says most frequently. I’m talking at least 50 to 60 times a day. I kid you not. Just ask the “kid” she’s calling for, Bella, aka, “Sissy.”

To say these two are best friends is an understatement. Bella and Willow are soul sisters, BFF’s, joined at the hip, unless they’re dancing, of course.

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Sometimes, I just don’t believe it. I never thought it could be this way. Because, while they have so many similarities, in the beginning, I spent too much time focusing on all their differences.

When I found out I was pregnant with Willow it was a shock. We thought we were done having kids. Our oldest, Laken, was about to turn 6. Bella had just turned 4 and my biggest concern at that time was the age gap I thought would divide our children. Would our youngest ever bond with our oldest? Would our middle child have anything in common with the new baby?

I learned the answer to that question pretty quickly. Our 20 week ultrasound revealed our new little bundle was a girl, just like Bella. Needless to say, the soon-to-be big sister was excited. In fact, she spent the rest of my pregnancy planning and preparing for the arrival of her new playmate. While the age difference still worried me, I started thinking things would be OK. That is, until delivery day.

“We think you’re baby has a heart defect.”

Those were the first words out of the mouth of the doctor.

“And, we think the heart defect is due to your baby’s Down syndrome.”

Those were the last words out of his mouth. Well, the last words I heard, at least. I think he may have said more, but I really didn’t process much after that point. I was in shock. I was scared. I was confused.

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To be honest, the heart defect was the scariest part for me. I thought my new baby, the little girl I had just birthed, the precious child we had just named Willow, was going to die before she even had a chance to live. The Down syndrome diagnosis didn’t really phase me.

As the days passed and the cardiologist filled our hearts with hope, I caught myself thinking about what Willow’s future might actually look like. I felt a lot of happiness. That is, until I thought about Willow’s big brother and sister. Would they ever bond with Willow? I mean, it’s one thing to have an age gap between them, but, now they had an extra chromosome in there, too.

I wasn’t afraid of Down syndrome, but I was afraid of what it might mean for my older kids. I couldn’t help but worry for them, especially Bella. She was looking forward to being a “Big Sissy,” to having a little playmate, a built-in best friend. What would this diagnosis mean to her?

Fast forward 3 years. I have my answer.

I believe Down syndrome — that extra chromosome — has helped strengthen the extraordinary bond between Willow and her siblings, especially her big “Sissy,” Bella.

Willow and Bella, Bella and Willow, The Two Terrors, The Dynamic Duo are true best friends. BFF’s. They do everything together and love being together. Well, most of the time, that is. Bella could probably do without the 6:30 am wake up call from Willow. Willow doesn’t understand that just because she’s awake doesn’t mean Bella needs to be awake. If my husband and I don’t keep and eye on her, Willow usually finds her way to Bella’s room and starts banging on the door, yelling “Sissy!” in an attempt to rouse her playmate. It’s cute, I’m not gonna lie. In fact, I might be guilty of watching from behind a corner for a few seconds before coming to the rescue. Ooops.

When Bella finally does wake, the two sisters waste no time getting down to business. Sometimes they play with dolls and stuffed animals. Sometimes they set up a pretend store and load their cute little purses with fake dollar bills. Other times they play dress up. I’ve seen them as super heroes, doctors and even animals, but most often they dress up as dancers. These two love music. Love.

Occasionally, Bella has to break away from the fun to use the rest room. That’s when Willow switches to the role of the annoying little sister.

Case in point:

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There are other parts of being an older sibling I’m sure Bella and my son, Laken, find more annoying than a tiny hand under the bathroom door. But, you would never know. The love my children have for each other, the bond they share, is unbelievable. Honestly. Thinking back to those early days after receiving Willow’s diagnosis, I don’t know if I would have believed anyone who would have told me this is what it could be like, what it would be like.

The reality is my girls are — well — just girls. The bond was always there, even with the age gap. Throw in an extra chromosome and that bond just got tighter. Bella’s love for her sister is a protective, proud, adoring force that can actually be felt. In her words “I’m so lucky to have Willow as my sister. She’s the perfect sister for me.”

She right. They’re perfect for each other.

Bella is away at summer camp this week. It’s been pretty quiet around here. Well, except for the occasional “Sissy?”

She’ll be back soon, Willow. I promise.

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Because of Clare, my daughter with Down syndrome:

I rock out to Disney Songs and Uptown Funk while driving her to her adult day program.

I co-lead a monthly Faith & Light group that reminds me of the importance I place on God and community.

I sometimes slow down, when I need to.

I am reminded that it’s the simple things that matter.

I know the importance of structure and routines.

I know I better follow through on my promises.

I know that sh** happens (literally and figuratively).

I have made some incredible, lifelong friends.

I worry about the future, when we can no longer care for her.

We celebrate birthdays (no matter who’s) and holidays with extra gusto.

I get to love Clare’s friends who may or may not have differing abilities.

 

I have traveled to the World Special Olympic Games and met Olympians from all over the world.

I have a child who was on the front page of the Washington Post, was in a documentary and had several TV appearances, including “Good Morning America.”

I am grateful for the medical care available to us in the U.S. that saved her life this year.

I am reminded about the importance of being present to those in your life.

I have learned, but don’t always remember, the importance of being calm when things aren’t going as you planned.

I believe that it is all God’s plan.

I have learned that some days you just have to put one foot in front of the other and somehow get through it.

I have learned there is usually a rainbow after a storm.

I am grateful the world has made such strides in accepting and including those who are different, but am sad that there are still those who shun, belittle and exclude those who are different from themselves.

I have learned that good usually prevails over bad and that life and God are good.

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I guess it was one of the first things we learned about you — you would break all the rules. The doctors advised us in medical terminology what would be difficult for you and what you would need to overcome medically to thrive in society.

Prenatally, doctors predicted you would be dead or stillborn due to an enlarged brain ventricle. You were born and although your left-brain ventricle is one millimeter larger than the other, you are alive and well.

Doctors predicated if you were breathing upon birth, you would need immediate surgery because you had tracheoesophageal fistula and would have a three to four month hospital stay for recovery. You only spent two days in the hospital at birth and your stomach is perfectly fine, no surgery or long term hospital stay needed for you.

After an immediate ultrasound after your birth, a radiologist report advised you were missing part of your brain. One road trip to see a specialist determined you have all the pieces of your brain and there isn’t anything to worry about.

At your 2 month echocardiogram checkup, the radiologist advised you would require open-heart surgery for a shunt, possibly two, by your 4 month check up it was established no open-heart surgery was needed.

 

Physical therapists said you would struggle with your low muscle tone in areas such as tummy time and rolling over. You’ve excelled at both and you’re not even 6 months. In fact, you seem determined to crawl more than any other baby I know.

The lactation consultant said most likely you wouldn’t be able to breastfeed, yet this is your happiest thing to do.

The standard medical documentation tells me you might not vocalize, but you’ve been doing so since you were 2 months old. Also, it stated you may have hearing problems, but your latest hearing test established your hearing is perfect. Same with your eye exams.

But alas my son, there will be adversity in your future. You will not be able to escape it, no one is. It is what makes us stronger in ways we are unable to predict. I will have to fight against my motherly instincts to try to make your life easier and without problems. And I think the only way I can do that, is if I can remember that you, my son, are “The Rule Breaker.”

So watch out world, my son has only just started his journey and broken more rules, stereotypes, several predetermined outcomes and many hearts than most of us do in a lifetime. Fair warning.

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The day came, the one I wondered about for quite some time, the day a stranger recognized the Down Syndrome traits in my child’s perfect little face, and she approached me.

It was like any other Costco trip before, except this time I only had two of my six children with me (this is rare). We were perusing the aisles before heading for my 11-year-old’s favorite part, the samples. As we wheeled past the cheese and crackers we paused and she caught my eye. Everyone always comments on my little one’s hair; I must say Cedar has some awesome locks. This was not unusual, but once the woman commented on his hair and made a bit of small talk about how old he was, she paused.  She just kept looking at him and I knew something was coming. Her hand lingered on his bare little foot just lighting on his big toe.

This, I might add, is one of those defining moments.  I have had them before, and I have failed. Like the time I missed a connection because I just didn’t want to talk about Down Syndrome. I have wondered, sometimes, if a stranger will catch me on a bad day and they’ll say something rude, or just ignorant.  Another blogger, Erin, at the Lucky Wells, wrote an entire post about just this thing and I read it shaking my head all too knowingly that the day would come.

A mom kissing her baby boy with Down syndrome, he is wearing a stripped red and white onsie.

The funny thing is, sometimes I don’t see Down Syndrome. I mean at certain angles in photos I see the textbook physical traits that my Cedar possesses, but overall, he’s just my sweet little babe and though I know it is a part of him, it isn’t the main thing I think about or see anymore. As a new mom of a child with Down syndrome, I sometimes wonder if people see it yet when they comment on his hair or something about him.

 

Time stood still for just a moment and when it did, I breathed and decided this could turn out to be an educational moment. But then she smiled and asked if we had chatted before. I didn’t remember ever seeing this woman before in my life so I smiled back and said I didn’t think so. She went on to tell me that she had a grandbaby just about the same age as my Cedar. Then she said, “My grandbaby is a twin, and one twin has Down Syndrome.” I was no longer tense, the ease that washed over me was likened to a wave leaving me, feeling refreshed and rejuvenated. I quickly blurted out, “My son has Down syndrome, too!” She smiled again and told me he was beautiful, it melted my heart.

So it happened, the physical traits that allow others to see that he indeed has something a little bit extra were visible to a complete stranger, but it led to the sweetest exchange. I love that this is the first experience I have had in public by a total stranger acknowledging my son’s extra chromosome. It was such a positive exchange and the woman’s eyes lit up when talking of her granddaughter. It was very special to make a connection like that.

I went home that day feeling excited, feeling like I no longer had to worry about the first time someone in public acknowledged my son has Down syndrome, because it had already happened and it was perfect. No ignorant comments this day, no grace-filled smile as I explained what Down syndrome is. Nope, just a sweet exchange between two women who both love someone with a little something extra.

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The Fourth of July is a time of reflection on our nation’s past and present. As a mom to a son with a disability and former history teacher, I often marvel at how far our nation has come in one generation as it relate to the human rights of individuals with disabilities.

Troy, a little boy with Down syndrome holding an American flag.
Troy, a little boy with Down syndrome holding an American flag.

When Thomas Jefferson wrote we have the right to “life, liberty and pursuit of happiness” in the Declaration of Independence, he probably wasn’t thinking of people like my son Troy, who has Down syndrome. Still, this document and our nation’s constitution has been used as proof that my son deserves a life of choice and self-determination with needed supports.

When I was born in 1982, individuals with Down syndrome had a life expectancy of 25-years-old. Many still lived in neglected and abusive institutions, were denied life saving surgeries, and underwent forced sterilizations as approved by the Supreme Court in 1927.

One generation later, in 2012, when my son, Troy, was born life expectancy had more than doubled to 60 years old. Many laws contributed to this amazing feat, one of which was Medicaid. The social program was a bipartisan solution to healthcare for the poor, and was signed into law by President Lyndon Johnson in 1965.

In 1981, Ronald Reagan approved the Community and Home Based Waiver Provision within Medicaid. The waivers are rooted in the idea that individuals with disabilities are happier, safer, and more free in their home and community. Not to mention, it’s a cheaper alternative to institutionalizing individuals with disabilities.

Troy (left) with his twin, Hunter.
Troy (left) with his twin, Hunter.

The healthcare proposal that recently passed the House of Representatives and is currently in the Senate would cut Medicaid by $834 billion dollars over the next decade. Half of those cuts would come from “per capita based caps.” This means, instead of a federal and state partnership, the federal government would cap the amount of money they give to states to a fixed amount. Cash-strapped states would likely cut Community and Home Based programs first.

Troy playing T-ball.
Troy playing T-ball.

In a time of growing distrust of government, you need to know that the federal government has made a huge positive impact on the lives of our nation’s most vulnerable citizens. My son is proof of this progress. At almost 5-years-old, Troy, can do everything his neurotypical twin brother can do. He’s potty trained just like his typical twin, can read and sound out simple sentences like most kids his age, and plays on the same tee ball team as his typical peers.

What you may not realize is the supports he receives during early intervention and in his inclusive preschool (like PT, OT, and speech) are partially funded through Medicaid. When my son reaches adulthood, Medicaid provides job training, transportation, and independent living supports through local Dayton programs like Project Search. At birth we put our son on Ohio’s Medicaid waiver waitlist for these adult supports and services. As Medicaid stands right now, that waitlist is 18-25 years long. What will happen if these cuts are approved? Likely we’ll never see the end of the waitlist; if we do, the services will likely not be what they are today.

Ohio Governor John Kasich opposes the Senate bill and in a letter with three other GOP governors stated: “It calls into question coverage for the vulnerable and fails to provide the necessary resources to ensure that no one is left out, while shifting significant costs to the states.” Over 700,000 Ohioans would be impacted by Medicaid cuts if approved.

Troy and I met with Senator Rob Portman’s staff in June. We shared our Medicaid story, but staffers gave us no indication of how Senator Portman felt about the disability community. After the Senate delayed the bill, Senator Portman came out in opposition to it, citing the opioid crisis here in Ohio. For sure, drug treatment and mental health will also be negatively impacted, but the disability community must not be ignored. Call Senator Portman or your own Senators today at (202) 224-3121, remind them how far we’ve come as a nation in the treatment of our most vulnerable citizens. Tell them to save Medicaid, and vote NO to any cuts or caps on the program.

Save Medicaid - No Caps, no Cuts!

 

Follow our journey of advocacy and inclusion at Inclusion Evolution.

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

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