I Step Up Because A Life With Down Syndrome Is a Life Worth Living

“God only gives special children to special people.” “We are never given more than we can handle.” It’s meant to be comforting, but it feels like people are saying, “You should be held to a higher standard, you should bear more than others, this happened to you because you deserve it.”

When it looked like we might lose the baby, my doctor suggested non-invasive prenatal testing to determine a cause and any possible treatments.  While we waited for the results of our prenatal testing, I searched the internet for information about the possible results, especially Down syndrome. I read about heart defects, special education battles, necessary therapies that are not covered by insurance, blatant discrimination. There were videos and memes mocking people with Down syndrome. A woman commented on a message board that her twin brother had Down syndrome and had been institutionalized his entire life – she said she had never known him to be happy and it would have been better if he had never been born.

I thought a person with Down syndrome would have a terrible life dependent on others and be ostracized by the world. I thought that person would be a burden and an embarrassment to me and my family. I thought I would fail a child with Down syndrome – that I wasn’t capable of providing that level of care. When it was confirmed that our baby did have Down syndrome, I was afraid. I was being given a special child and I didn’t want her. I wanted to terminate my pregnancy.

But then my geneticist gave me The Guide for New & Expectant Parents from the Down Syndrome Association of West Michigan.  I learned the facts about Down syndrome.  I learned most people with Down syndrome have mild to moderate intellectual impairment.  I learned my baby was being born at a time when people with Down syndrome were receiving world class medical care, being educated alongside their typical peers, living independently, working, getting married and leading longer and happier lives than ever before. Most importantly though, I learned that I didn’t have to be special – I wasn’t in this alone.  Yes, I had been given more than I could bear, but – with help – I could do this. Twenty-two weeks later, we welcomed Evelyn to our family.  It hasn’t always been easy, but it’s been wonderful just the same.

Raising a child with Down syndrome has taught me gratitude. It’s taught me that every small success and every bit of good should be celebrated.  I don’t take the small things for granted anymore. I find joy in moments I used to rush through.

Evelyn has taught me to be brave. Every day she bravely faces challenges that would deter many adults. She has taught me to believe in myself and the people around me and to bravely stand up for what is right.

Raising a child with Down syndrome has changed my definition of success. I don’t put much value in being first or best anymore. I value the growth and knowledge gained along the way more than crossing the finish line. I know the value in showing up and working hard and achieving a personal best and the rewards of helping others achieve their’s. 

Loving someone with a disability took away my fear of people with disabilities. I’m no longer afraid that I will say or do the wrong thing and accidentally offend someone. I’ve gotten to know many amazing people because of this.

In the more than six years since I received that diagnosis, I’ve had the opportunity to meet lots of families like mine. Sadly, I’ve discovered that while raising a child with Down syndrome has the same positive impacts for them, many received their diagnosis differently. Some parents are given outdated, incorrect information about Down syndrome or none at all. I’ve met moms and dads who were told their child would never walk, dress themselves or use the toilet.  I’ve also met families who were advised that the only realistic option was to terminate their pregnancy.

My story could have been so different had it not been for the DSAWM.

Imagine I had walked into the geneticist’s office and she had not handed me that guide. I would have left her office with only inaccurate and misrepresentative information I’d found online in my own limited research. It breaks my heart to say it, but there is a good chance I would have chosen to terminate my pregnancy. In doing so I would have missed out on all the positive changes Evelyn has made in my life and the lives of those around us. I would be a different person than I am today.

Now imagine that sometime later – after my “near miss” with Down syndrome – I happen upon accurate information about Down syndrome. Maybe I see children with Down syndrome learning and playing alongside my children at school or have a co-worker with Down syndrome. I realize that I didn’t have the whole story when I made a huge decision. What would feel like to discover I had made the difficult choice to terminate my pregnancy without having all the facts? How would you feel?

Luckily, that’s not what happened, but it still weighs heavily on my heart. I just got lucky. I know that other mom’s just like me around the world, across this country, and right here in West Michigan are being put in that position every day. They are being asked to make life-changing decisions without knowing the whole story.

The truth is, anyone can be given a special child. But having a child with Down syndrome has made me special. It made me a better version of myself. I have a new appreciation for the world around me. It’s as if before I was living in black and white, and now its techni-color.

Honestly, sometimes we are given more than we can handle. I wasn’t prepared when I received that diagnosis, but with the proper knowledge and support I became someone who could handle it. Every day, I am empowered to do what is best for my daughter because I have the DSAWM standing behind me providing the tools our family, our school and our community need to support her in reaching her full potential.

On October 10^th, I will join more than 1,200 people from across West Michigan at Step Up for Down Syndrome in celebrating the gifts that I personally – and we as a community – have been given by knowing someone with Down syndrome. Yes, I “Step Up” to celebrate Evelyn and the way she continues to change my life. But I also “Step Up” for the moms and dads who have yet to receive a diagnosis of Down syndrome – to raise money to train the medical professionals who will give them the news and fund services to support those families like mine in giving their children with Down syndrome the same opportunities as any other child. Because I believe a life with Down syndrome is a life worth living. I’m thankful everyday that I learned that in time to make the right choice for me and my family.  All parents deserve the right to make educated choices and by supporting DSAWM we can make informed decisions the norm.

Make sure all West Michigan families receiving a diagnosis of Down syndrome also receive accurate information about Down syndrome by visiting Step Up for Down Syndrome.