The Answers I Wish I Had When My Baby Was Diagnosed With Down Syndrome

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I sat in the cold, sterile NICU staring at my newborn baby. I’d just found out my daughter had Down syndrome, an atrioventricular heart defect and was in congestive heart failure. An open heart surgery was in my sweet baby’s future.

As a first-time mother at age 25, I was completely caught off-guard with these diagnoses. With Jaycee’s birth going nothing like I had planned, my mind struggled to process what was happening presently and what would happened in the future.

So many questions… about my life, Jaycee’s life and our family’s future. It was overwhelming knowing I had none of the answers. Only time would reveal them.

Ten years later, I have the knowledge I wanted while I held my infant daughter with a million questions running through my mind.

Will Jaycee survive the open heart surgery?

Yes. At 3 months old, the surgery will go without a major complication, but she will need oxygen for three months afterwards. Unfortunately, small leaks in her valves will result in another heart surgery when she is 2. Getting the news that a second heart surgery would be needed would be devastating for a period of time, but this won’t be the last heart issue she has.

When will I “get over” my child’s diagnosis?

The first year will be tough. Actually, it will be the toughest. Adjusting to her Down syndrome and heart problem while to trying to start Jaycee in therapy to address her developmental delays will just be the beginning. The first year will also include a failed hearing test, which later prompts tubes, and a referral for strabismus surgery when Jaycee’s eyes start turning in. Asthma will also become an issue before age 1.

You will be pushed to your emotional limits. Things you believe about God and faith will tested. While you sit and try to figure everything out, you realize it’s very easy to love Jaycee. Eventually, you understand there will be things throughout her life to “get over,” and that acceptance is a process, not a definitive moment.

Will I be able to add more children to our family?

Yes. You will have a son a few years later. He will be healthy and develop ‘typically’ (except for a few minor issues). Seeing him grow up and surpass Jaycee in some areas will be hard at times, but you quickly learn to view each child on their own life path. Jaycee and he will be great friends until we play too many “Frozen” songs in the van. Then, he will get annoyed.

Will my marriage suffer?

Jason and you have stayed together through everything. There have been stressful times without a doubt. Together, you have worked through them all. Date nights become increasingly hard. Most of the quality time is found after the kids go to bed, which is thankfully at 8. You both remain dedicated to the things you vowed to do. You never knew “for better and for worse” would mean
watching your daughter have several surgeries, be on a ventilator a couple of times for illnesses, and be in so many emergency health situations.

Will Jaycee be able to read?

Yes. In pre-school, Jaycee was memorizing sight words and reading them “aloud” through signing. Her ability to memorize is one of her strengths that you found early on. Currently, Jaycee is reading first grade material, which is pretty good considering she says less than 30 words. Her expressive vocabulary is hindered by severe childhood apraxia of speech, but she uses sign language and her speech generating communication device well. Sometimes, you are sad because your child can’t say much, but this eventually just becomes a fact and doesn’t feel like a loss.

Will I be caring for Jaycee forever?

Ten years into this journey, I can say that you are planning to be Jaycee’s caregiver long-term. Given her limited speech and daily medical interventions, Jaycee requires fairly intense supervision and care. Things could change, but realistically speaking, Jaycee will most likely never live independently.

But here’s the thing, it doesn’t bother you anymore. The thought of caring for her the rest of your life no longer overwhelms you. You love her. Whether she lives with you until she’s 18 or 45, you will help her as long as you can. She is your daughter and friend. Somewhere through the years the thought of caring for Jaycee forever changed from sadness to love.

There have been moments in Jaycee’s life when her future wasn’t guaranteed. These moments have taught you the value of appreciating each day with her and solidify one key thought:

Life is better with Jaycee.

mother holding baby in hospital

Follow this journey on A Special Purposed Life.

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What's Your Take on This World Down Syndrome Day Video?

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Ever year CoorDown, an Italian organization that advocates for people with Down syndrome, releases a World Down Syndrome Day (March 21) video. In this year’s (below), you see a montage of actress Olivia Wilde while another’s voice describes her hopes, dreams and challenges.

In the last few seconds, we realize that voice belongs to AnnaRose Rubright, a 19-year-old with Down syndrome. She asks, “How do you see me?”

Rubright is a full-time college student at Rowan College at Burlington County in Pemberton, New Jersey. She works part-time at Breakthru Physical Therapy and Fitness in Medford, New Jersey, and is a Special Olympics athlete.

*Sign up for our Down Syndrome Newsletter*

This World Down Syndrome Day, let’s make an effort to raise awareness and end stereotypes about Down syndrome. People like Rubright have the same aspirations and experience the same feelings as anyone else. They’re already contributing to society in important ways, so it’s time to put an end to preconceived notions.

To learn more about people with Down syndrome, you can check out these resources and organizations:

We also recommend a few of these bloggers in our Mighty community:

What do you think about the video above? Let us know in the comments below.

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Mom Fights to Stop Sale of 'Offensive' Down Syndrome-Related T-Shirt

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t shirt that says 'i survived a down syndrome, what's your superpower?' One mother has launched a Change.org petition to remove a shirt being sold on Teespring.com that reads “I Survived A Down Syndrome, What’s Your Superpower.”

“This shirt is extremely offensive. It is hate speech!” Dana Thomas, the petition’s creator, wrote. “Down syndrome is not anything to survive. It is a beautiful thing.”

Teespring.com is a “user-generated platform,” meaning anyone can design and sell a shirt on it.

“This t-shirt makes my blood boil,” Taylor wrote in her petition. “My baby is not something to ‘survive.’ I often [wonder] how I survived without her. Please help make awareness that this is not OK and should not be sold.”

Thomas, who has a 1-year-old daughter with Down syndrome, contacted TeeSpring about the shirt and says she received this response:

Thank you for providing me with that information and thank you for getting in touch and bringing this matter to our attention. We apologize to those who may be offended by content posted on Teespring.

Teespring is a user-generated platform where people from around the world create various designs to express their views, interests, and opinions on a number of different issues. We strive to maintain a platform for free expression, even in cases where we don’t condone or agree with the views and opinions expressed by our users.

For more information about Teespring’s policies and our content guidelines please visit: http://teespring.com/policies/acceptable-use

Despite this response, Teespring.com’s content guidelines say the company does not allow hate speech:

We do not allow campaigns that promote or glorify hatred toward people based on their age, race, ethnicity, national origin, gender, gender identity, sexual orientation, disability and religion, including people, organizations or symbols dedicated to hatred against these groups. Additionally, we will not allow campaigns including content that bullies, attacks or threatens specific individuals.

By Monday evening, Thomas’ petition had reached 983 signatures.

Teespring.com has not yet responded to The Mighty’s inquiry.

In October, when Sarah Risko was browsing a different user-generated T-shirt site, SunFrog Shirts, she came across a shirt that read “I freaking hate adults with disabilities.” Risko, who has four learning disabilities and fine/gross motor dysfunction from undergoing chemotherapy as a child, reached out to the company and demanded the shirt be removed. Eventually, she won. A SunFrog Shirts representative responded to The Mighty saying the shirt had been removed and apologizing for the incident.

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When I Couldn’t Find the Words to Speak Up for My Brother With Down Syndrome

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I sat at my own table, pretending to be engrossed in other things, while my classmates chattered, giggling like everything was OK. But the topic of discussion that filled those four walls that day made the room very dark in my memories.

I sat there alone in a room full of girls belittling people with Down syndrome. The discussion began with an actress who has Down syndrome who played a role on a famous television show. Giggly voices filled the dark room and their comments showed no kindness towards that actress, claiming her Down syndrome ruins the show entirely. Moving forward, to the general topic of their chatter, one girl expressed her inability to understand the reasoning behind G*d creating people with Down syndrome. The discussion went on with hurtful words that remain in my memory of that dark classroom.

And I sat there, watching my teacher, waiting for her to speak up. In those moments, tears journeyed down my cheeks sprinkling my notebook with disappointment — disappointment in those girls for their discussion that etched so much hurt in my mind, but even more so towards that teacher who kept quiet.

The difference between the silent me of the past and the outspoken me of today is that when I sat there crying to myself in the darkness of that classroom, I could not find the words to tell those girls that my brother, Chaim, has Down syndrome and explain to them how wrong they were.

Today, I keep that memory accessible in my mind where I can use that silent moment to push myself and stand up for Chaim in my day-to-day encounters. I couldn’t then, but I can now. I can stand up for the fact that people with Down syndrome work hard to be successful and make their place in the world.

I speak up in situations that constantly parallel those girls. The difference is: the people I tell now are older and seemingly more mature. Yet the echoes of that dark classroom find their way into today’s world despite the age difference. Perhaps it’s because of people like that teacher, who sat silently instead of teaching those girls about acceptance and the value of every person created. And so the situations I defend my brother in are generally filled with older versions of those who may never have been taught better.

Now I can speak up and say clearly: My brother Chaim has Down syndrome, and each year that goes by makes all of the difference in who he is and how much of an impact he makes in the world. Chaim, and every other person with Down syndrome, is not “worthless,” like those girls labeled him in the darkness of that classroom. But rather he is accomplished, and worthy of the life I believe G*d gave him.

I couldn’t then, but I can now.

girl and boy leaning on wooden desk
Arielle and her brother, Chaim.

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 [email protected] 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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Celebrate World Down Syndrome Day With This Sock-Filled Photo Series

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When I Compare Myself to Other Parents as the Mom of a Child With Down Syndrome

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My son Kaleb continues to do well. I marvel at his strength and attitude as I think about
this 2-pound, 2-ounce baby who was born at 28 weeks and then surprised us further two days later when he learned of his Down syndrome diagnosis. After 14 weeks in the neonatal intensive care unit (NICU) we have been home for two months. Therapy and specialist appointments continue to be a norm for us. It is safe to say Kaleb continues to teach me parenting and life from a new perspective.

I’ll be the first to admit how easy it is to “mompete” (compete and compare myself against other moms). Of course, social media and especially Pinterest make it easy to do. At times it can make you feel pretty good about yourself, and at other times very discouraged and like you just can’t measure up. I’m not sure why we do this; it’s not fair to us as parents or to our children.

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Amanda’s sons.

The other night my 3-year-old, Kaden, and I were reading a book before bed. He was upset that Kaleb fell asleep before they could read their two bedtime books together, so he had to be content with reading with Momma instead. While we were reading the book “I Love You Through and Through,” I noticed he kept talking about the teddy bear. To be honest in the three years that we have read the book, I never gave the teddy bear a second thought. To me, the book is all about the little boy. Kaden thought it was about the teddy bear (he loves his stuffed animals). He showed me the book from another side, another perspective.

That has been Kaleb in my life. He has shown me a different perspective, another view of parenting and life. Even though right after learning of his diagnosis, I feared our life would change drastically, I realize it is the same life. I am now just able to see it with new eyes and a new perspective. He has shown me not to get so caught up with “the rules” or how others are doing.

Kaleb came out of the womb saying he does not follow anyone’s rule book and is writing his own. I can’t get wrapped up in the timeline of hitting milestones or trying to measure his progress against others. He has and continues to teach me to just step back and simply enjoy and be grateful for the miracle that is Kaleb. To enjoy baby snuggles, that yes, come with a few more wires due to his premature birth, and to celebrate each and every achievement with him. After receiving the diagnosis of Down syndrome, someone told me that each milestone is that much sweeter once they reach it. Already at his young age I’m realizing how true this is. It has allowed me to view parenting from a new perspective, that it is not about a parenting measuring stick. I work to continue to simply cherish him and experience life from a new perspective.

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? If you’d like to participate, please send a blog post to [email protected] 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.

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