An Honest Reflection on Down Syndrome

There seems to be a tendency in western culture to categorize experiences, people, and places as good or bad, with little room for nuance. If you’re awake and paying attention, you’ve probably noticed this in the political sphere, religious and educational institutions, parachurch organizations, and personal relationships–maybe even within yourself. I know I’m guilty here.

Good is defined as positive. Convenient. Easy. Hopeful. Something to welcome.

Bad is defined as negative. Inconvenient. Difficult. Hopeless. Something to avoid.

Maybe in our efforts to simplify the complexities of our lives, we humans lean one way or the other. When life behaves in a way that feels predictable, convenient, or easy, we label it ‘good.’ Whatever does not fit within those parameters, we deem ‘bad.’ We perceive events, relationships, and places in either-or terms and in doing so, we shift from a broad, holistic approach to a narrow, singular view. I wonder what we miss when we make this shift?    

Having grown up with and worked with people who have varying degrees of physical and developmental disabilities, I’ve seen this limited, often negative perspective in families, schools, churches, and communities. Human nature seems to value ease and comfort and often interprets disability (or any diagnosis that appears limiting) as bad.

Negative. 

Inconvenient.

Difficult.

Disability, of course, may feel like all of those things–particularly for those who live with it–but disability is not only those things.

As Sam’s mom, I have witnessed the crestfallen faces, the looks of pity, the “I’m sorrys” when people realize he has Down syndrome. I cringe at those who wonder aloud, “So, why did you do this?”

When an older gentleman recently learned of Sam’s diagnosis, he scowled, shook his head, and announced in a grave tone, “That’s awful.” These responses tell us something about cultural values, no?

That same day, I listened to parents in the Down syndrome community describe their journey with Ds as “perfect, amazing, and hashtag blessed.” Not one challenge was shared, not one struggle confessed or noted in any way. I don’t fault these dear families but I do wonder if excessively, exclusively positive phrases are an attempt to assuage deep fears and doubts, to somehow convince their trembling selves (and anyone listening) that Down syndrome is a life full of endearing smiles, extra hugs, and endless happiness, void of any difficulty.

Have I made anyone uncomfortable yet? Well, buckle up, dear ones.

A Down syndrome diagnosis is neither good nor bad. It’s both. Or neither. I prefer not to use those binary terms.  As with most of life’s experiences, Down syndrome is difficult and wonderful. Challenging and fantastic. A potentially troubling diagnosis and an unexpected gift. Even as one who has worked with people with Ds and as an adoptive mom who knew what to expect (more or less), I am simultaneously concerned and grateful for the role Down syndrome plays in Sam’s life–and mine. 

Good readers, may we be free to accept whatever we’ve been given–or whatever journey we’ve chosen–as both. Sometimes the wonderful will seem obvious and sometimes the difficult will threaten to steal our joy. And sometimes we need to sit in our grief for a bit. That’s okay, too.   

Life, with all its struggles, however, does not mean it’s all bad. Hope blooms in the cherry blossoms after the winter, it rises from the casseroles on the counter tops of the bereaved, and it dwells in the extra chromosome of a son I adore. 

I love Sam. Fiercely. 

I don’t always like the way his diagnosis affects him–or what it might mean for his future. 

I don’t like that after nearly 5 years of speech therapy, he still cannot say his name.

I don’t like that his decreased immunity leads to frequent respiratory illnesses.

I don’t like that his eloping puts his safety at risk and requires my hypervigilance.

I don’t like when IEP meetings leave me feeling angry, frustrated, and doubtful that we’re doing all we can to meet his learning needs.

I don’t like all the future unknowns. (Does any parent?)

I hold these heavy realities in my weary hands.

But my hands–our lives–have room for so much more.

I like his belly laugh that makes his eyes disappear.

I like that he can sense when I need a hug.

I like that sweet little gap between his first and second toes.

I like that his curiosity leads him to explore and take risks.

I like that he learns at his own pace–and does so unapologetically.

I like that he grins non-stop when he’s splashing in the pool.

I like that he hums when he eats dessert.

I like that he dances whenever he hears music, with no thought of onlookers.

I like that when he signs and says “cookie,” he emphasizes the “eeee” sound. 

I like the people I’ve met and the supportive local and online communities I’ve come to know and appreciate.

I like who I’m becoming as I raise him: more empathetic, more aware, and more committed to love well those who are avoided and *inadvertently* excluded by the Church–by our culture.

I hold these extraordinary realities in my grateful hands.

Struggling at times with the challenges of Sam’s diagnosis should never imply that Down syndrome is bad or that I’m a bad parent; it only reveals my efforts to be honest, vulnerable–to give someone else (maybe you!) permission to acknowledge your own challenges. 

Relishing the gifts of Sam’s diagnosis doesn’t mean that Down syndrome is all unicorns and rainbows or that I’m a good parent; it only reveals my efforts to be honest, thankful–to discover the Imago Dei in my 43 pound cherub–and in all the chromosomally-enhanced who are worthy of life and love. 

I’m 5+ years into this parenting gig with Sam and I can already say with conviction that raising a child with Down syndrome is both difficult at times and wonderful. What a privilege to experience the challenges and the delight. What a gift to hold both–what a gift to hold Sam.

Featured image by Matthew Henry at Unsplash