This Is My Definition of a Good Life


On a recent road trip to central Nebraska, my son, Marcus, leaned back and sighed, “This is the good life.” That particular weekend there was much ado about Nebraska’s slogan, “The Good Life,” with talk of change. So I smiled in agreement while my mind wandered over the parallel metaphor to our world.

I admit, it gets old defending the place you call home. Sometimes a person gets tired of explaining what exactly is good about “the good life” to those who say they could never… To those who are filled with ill-conceived notions and stereotypes about our day-to-day… What beauties there are to see and experience.

Like many kids and their hometowns, I knew I’d leave Nebraska when I grew up. But the days went by and, though there were other opportunities along the way, I chose to stay. And sometimes there were circumstances that chose me instead. Which brings me to the parallel metaphor. Life with my son, Marcus.

It’s not a new idea, the metaphor of the physical place we find ourselves and our larger fate. So here we go…

Marcus & Me - The Good Life Every October we celebrate Down Syndrome Awareness Month. We celebrate because Down syndrome is part of who Marcus is. Like many families who find themselves in an unexpected place – it is not about making the best of it; it’s about celebrating the best of it. What I’d like to say to those who don’t live in the place we do: It’s not what you think.

Yes, sometimes storms come in and make life difficult. Like Marcus’ heart surgery when he was still a baby, handing my child over to the surgeons who would cut and mend, tear down my being and build us all up again, stronger, safer. And there are many beautiful places on this earth, including the amazing sunsets that linger on the horizon here. Yes, the same sun rises and sets in our world as yours and my love for my son is no more and no less than the love any mother can have for their child. I see his beauty, his talents, his ambitions, and these parts of him are not diminished by Down syndrome. My biggest disappointments come not from Marcus’ disabilities but rather the limitations of other people to recognize his abilities.

To me, the good life means preparation: when it’s cold, you put a coat on. The good life means consideration: please and thank you and working hard is something to be proud of. The good life means both seeing beauty in the peaceful moments as well as celebrating with the roar of a crowd.

For us it is also about a lifetime full of laughter. Marcus’ guiding principal is to make sure the people around him are happy. It’s nice to live with someone who has other’s happiness as a top priority.

Yes, Marcus lives with us. By the way, so do 6 million other adult children in this country. And just like many of them, this is a choice we have made together. There are options; we chose this one.

It’s not always an easy life. (Boring!) It’s not the perfect life. (Who has that?)

It is, in fact, quite a good life.

Check out more on Grown Ups & Downs.

TOPICS
JOIN THE CONVERSATION

Related to Down Syndrome

baby holds the book charlotte's web

A Mom's Wonderful Gesture for Parents of Newborns With Down Syndrome

When Krista Rowland-Collins’ daughter, Adele, was diagnosed with Down syndrome, the new mother realized few resources told positive stories about babies with the genetic condition. She didn’t want future moms to get the diagnosis with an “I’m sorry” and a list of symptoms. So she began making care packages in her basement that she sends to [...]

4 Lessons My Job Taught Me About Down Syndrome

Just over six months ago, I took a dream job with a small family foundation focused on serving families and children with special needs. I’ve spent this time 100 percent focused on the Down syndrome community – and specifically, working for an innovative social enterprise that is helping to strengthen and support the fundraising, social media and [...]
newborn with Down syndrome is quiet and looks

A Concerned Mom Asked Parents What to Expect From a Down Syndrome Diagnosis. These Are Their Responses.

When Reddit user “MrsEtcheto” learned her unborn child has an increased risk of having Down syndrome, she reached out to strangers for advice. “While I know this isn’t a diagnosis, I want some insight as to what to expect, how to prepare and how to better parent a child with [Down syndrome],” she wrote on [...]

Down Syndrome Was a Present No Package Could Contain

I typed quickly, with a fervor and a fire that couldn’t be extinguished. Then, with the same intensity, I deleted every blackened letter and stared blankly at the white space. The words weren’t right. They flowed about as fluidly as liquid through a straw with a lemon seed stuck in its interior. I closed the computer, [...]