Celebrating World Down Syndrome Day | A mother’s story of love, passion and joy

“This was NOT a part of my plan!”

When I was 16 years old, I spent weeks of my life working on a project for school. The assignment was to write a feature in a magazine about my future self. I poured over the pages about my Broadway debut, my two children (a girl and a boy) and a beautiful white picket fence surrounding a house that was nestled in a quaint town, not too far from the bustling city.

Every line and magazine cut-out was an idealized, planned out, picture-perfect scenario that took up residence in my brain.

Not one part of that fantasy included becoming a mom to a child with Down syndrome.

In fact, one of the first thoughts that popped into my head when the doctor delivered the news over the phone was, “This was NOT a part of my plan! I am not cut out for this! I cannot do this.”

I also drifted into self-pity, wondering how this new life would leave room for my dreams and aspirations.

Readjusting my dreams for the future and discovering something richer

When experiencing unexpected twists and turns, I’ve learned how important it is to grieve how you THOUGHT your life would look. And so, in the weeks following my diagnosis, I cleared out those images in my head, one by one.

I deconstructed the timeline and rearranged the furniture. Watching my white picket fence come down in my own psyche was a painful and difficult process.

But it led to something better. Something RICHER. Something beyond what my limited mind could possibly imagine as a sophomore in High school.

This life I lead, as a mom to a child with a disability, can be tough and exhausting. There has been and will be hardship, but this does not make me unique. Trials and storms are unavoidable in any life.

When a friend of mine announces their pregnancy, I sometimes still have pangs of, “Why me?”  Not because I don’t ADORE my son, but because a typical life is the one I had designed in my head for so long. It can be painful to revisit that broken dream in the lives of others.

“My son has helped me discover the fullness of life.” 

But with one dream in tatters, a newly remodelled version of my life has emerged. The “something better,” I referred to above, pertains to a world I didn’t even come close to seeing before Jedidiah.

I now reside in a land filled with light, love, advocacy, passion and JOY. The extra chromosome definitely brings an extra sprinkling of magic along with it. My son has helped me discover the fullness of life. He has taught me more about God’s radical, boundless love. In his eyes, I see a reflection of myself that didn’t exist before he arrived.

I spend every day of my life shouting his worth on my platform, @happinessisdownsyndrome. I make it a point to reach out to other moms, like me. Those who may have thought their life was over, only to discover a rich new landscape.

Every day on my page a new story is told. It is my hope that the smiling faces and honest accounts will bring hope to those who find themselves in a pile of shattered dreams. I pray that they would taste even a sliver of the happiness to come.

I also hope that one day, moms like me won’t need to shout the worth of their children. I pray their intrinsic worth and value will just be widely accepted and acknowledged. There is still much work to be done before that happens.

Until then, I will advocate, clap, shout and dance for my boy…the one who gave me 20/20 vision and helped me construct a new blueprint for my life. A plan that is open to change, possibilities beyond my limits and growth beyond my wildest dreams.