Bbay boy with Down syndrome wearing glasses, sleeping, superman cape above him while i the middle of stuffed superheroes

My Son With Down Syndrome Is 'The Rule Breaker'


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.

We want to hear your story. Become a Mighty contributor here.

TOPICS
,
JOIN THE CONVERSATION

Related to Down Syndrome

Little baby boy with Down syndrome smiling, his thicj dark hair is styled sticking up like a Mohawk and he is wearing a suit with a red shirt

The Day a Stranger Recognized My Son Has Down Syndrome

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

This Land Was Made for My Son With a Disability, Too

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 [...]
The Peanut Butter Falcon movie poster next to the cast and crew of the movie

'The Peanut Butter Falcon' Stars Zachary Gottsagen, an Actor With Down Syndrome

A new adventure movie is currently in production and it stars Zachary Gottsagen, an actor living with Down syndrome. “The Peanut Butter Falcon” tells the story of a young man with Down syndrome named Zak, who runs away from a nursing home to pursue his dreams of becoming a professional wrestler. Tyler, a small-time outlaw, played by Shia [...]

My Son Is Not Brave Just Because He Has Down Syndrome

We had a “first” this morning, a comment from a customer at out store that took me slightly aback. I haven’t had many comments regarding Down syndrome, other than a few “you can’t even tell” in the beginning. I usually get comments about how cute my children are, how happy they seem, how well behaved they [...]