Why These Articles on Down Syndrome Matter to Us All

There are two interesting articles on the Yahoo Parenting home page right now – the titles speak for themselves – If I Knew My Daughter Had Down Syndrome, I Would Have Aborted and To My Daughter With Down Syndrome on Her Wedding Day.  Even in our political times, I can’t remember ever seeing such a juxtaposition of polar perspectives.

Both pieces are drawing great attention for obvious reasons, and many of the responses and comments are emotional, understandably.  But looking strictly at them as two pieces on what one could say is the same topic – a daughter with Down Syndrome – where are the universal truths?

First, the evident clinical truth is that Down Syndrome is a chromosomal condition with a very broad range of medical and behavioral implications.  Although many times we prefer to categorize groups of individuals together, individuals with Down Syndrome are unique individuals.  In these two pieces, it seems fair to assume that while one of these daughters is capable of leading a life that includes marriage, the other may not achieve that type of independence.

Second, the social truth is that community is what sustains us, in all scenarios.  One parent speaks of a “strong support system” that got her through the early years.   The lack of community she feels now – by dismissive therapists and school personnel – clearly causes her to struggle.  The other parent states that his initial concern for his daughter was that other kids like her – and stand with her in the “vital social arena.”  We all recognize our need for community support and acknowledge the difference it makes when we have it, and when we don’t.

Finally, the “north star” truth is that each of us gets to tell our own story.  One daughter “reads….loves swimming…performs in an adaptive ballet troupe…sings and twirls her way to the classroom” and the other “danced on the junior varsity dance team and made lifelong impressions” on everyone she met.  Both girls are enjoying their lives and are having a positive impact on those around them. These articles are not about the two daughters with Down Syndrome.  These articles are about the two adults who are the parents.

The real questions these articles raise are not whether the lives of individuals living with Down Syndrome are worthwhile or whether the pro-life movement has gone too far in Ohio.  The real questions are personal questions for each of us.  When faced with unanticipated challenges in life, how we will we tell our story?  How will we respond?  Will we be like one parent here who centers her story on regret, or will we be like the other parent who centers his story on joy?  We have one choice really:  we can define our stories, or we can let our stories define us.

What I Wish I Could Say to my Son

The summer is almost over in Massachusetts, and the kids will go back to school in a few weeks.  In many areas of the country, they have headed back already.

As much as I don’t look forward to returning to the rigorous school routine, there is a relief in knowing that the summer is coming to a close.  I have three boys, and our weeks have been filled with getting them to different places with their friends.  They have received invitations to sleep over, invitations to ball games, invitations to the beach, invitations to go fishing, and invitations to the movies.  That is, except for my middle son, who hasn’t received any invitations this summer.

I never get the opportunity to say to Davis – “It’s for you.”  I would give anything to be able to say to him, “This text is for you.  You’ve been invited to the movies.”  Or “This phone call is for you.  You’ve been invited to your friend’s house.”  Or “This invitation that we received in the mail for a birthday party – it’s for you.”  And as heartbroken as I am that I never get to say these words to him, I am even more saddened when he asks me who he is going to play with.  The answer is I don’t know.  At twelve, he no longer wants to play with his mom.

This is the most difficult part of having a child with special needs.  Although the medical issues, the school battles and the long-term concerns are significant, the real weight comes from lonely summer days, knowing your wonderful child deserves the social invitation that is easily extended to others, but that won’t be extended to him, unless you intervene.

So I will accept that responsibility.  I will make the phone call next week, and I will send the text.  I know a lot of children with special needs who would be happy to accept the invitation I can extend.  And I will ask all of the wonderful volunteers who are so available throughout the school year to remember us next summer, to step outside of the organized programs and know that we would love to see them across the break. If I’ve learned anything from being Davis’s mother, it’s that things may not always play out as I wish they would, but we’ve landed in a pretty amazing community, and there’s no need to go it alone.

If I Knew Then What I Know Now

I had a rough start when my son Davis was born with Down syndrome. A tsunami of emotions – fear, confusion, doubt, loneliness – flooded my heart all at once as my brain tried to triage dozens of questions that raced through my mind at the speed of light.

Now as I reflect back on those questions that I never spoke out loud, I am amazed at how far I’ve come. The mother who asked herself these crazy questions doesn’t seem at all like the mom I am today. And so with the love and experience I’ve gained in these past twelve years, I’d like to address her worries.  Here are the answers I wish someone could have provided to the desperate questions that haunted me at the time.

Question 1:  Is my life over?  Well, this depends. If you already have other children, your life was really over a long time ago, wasn’t it?  If this is your first child, yes, your life is over, but that has nothing to do with your baby’s diagnosis. As a parent, you’ve given your entire self over to the love and care of another individual. Your own eating and sleeping and self-care are no longer priorities. All of these changes come from having a baby, and if your baby has Down syndrome, it’s still the same for you.

Question 2:  Did I just get cheated?  All of your family members and friends have had “typical” babies and you feel this terrible thing has happened to you. Well, as hard as it may be to believe at first, you have received a gift. You have been given a light brighter than any light you’ve ever known…..the purest love, the deepest acceptance, a human connection different than any other you’ve ever experienced. Sometimes we put filters on that block out this light, while we process what has happened…..but as soon as you lift your filters, this little light of yours will be ready to shine.

Question 3:  Do I have to quit my job?   No. You will still need to fantasize about hitting the lottery before quitting your day job. In the beginning, you think you will have to stay home to take care of this baby with special needs and you will never again experience all the trivial things that used to fill your happy days. Well, be prepared: your life will return to normal fairly quickly and you will be complaining about your day job again in no time. Keep buying those lottery tickets.

Question 4:  Am I going to be taking care of a child my entire life?  I can’t answer this question because there is a wide range of what individuals with Down syndrome can achieve. What I can tell you is that 1 in 5 of all young adults still live at home, and 60% of all young adults receive financial support from their parents. So if you end up with an adult child living at home someday, it may, or may not, be your child with Down syndrome.

Question 5:  Is there any way out of this?  The answer is no. Sure, some small percentage of babies who have Down syndrome will be given up for adoption, but there are more families on lists waiting to adopt babies with Down syndrome than babies available – what does that tell you?  For the majority of us the right answer is to press on until we settle in. Very soon you’ll know loving this little human being is not something you will ever find a way out of.

So stay strong and continue on with faith that your life will be fuller than you had ever hoped for, and that you will have a deeper and richer perspective on what parenting means than most others.  And finally, forgive yourself when you look back years from now with embarrassment that you asked these questions in the first place.  You weren’t the first to struggle when getting the diagnosis and you won’t be the last.  It’s a journey that we’re all traveling as best as we can, day by day.

To the vigilant father at our Independence Day fireworks celebration


I want you to know that Davis talked all day about watching the fireworks from the swings in the school playground.  He said the sky is closer when he is swinging.

I want you to know that we arrived early so he could get a swing, and so we could put our chairs on the edge of the playground to make sure we could see him clearly.

I want you to know that I walked over to him twice, to make sure he knew where our chairs were, and to tell him if he raised his hand, I would see him and come right over to him.  Everybody understood the plan.

I want you to know when my youngest tugged at my sleeve with excitement to point out his favorite fireworks, for a brief moment I shared the sky with him – how rare those moments are – and then the swing was empty.

I want you to know that right before you approached, my eyes searched behind the swings to see if he had fallen or if someone had harmed him, which is a worry that exhausts me because it never goes away.

I want you to know that your words —  “are you looking for your son?” — were welcomed with tidal waves of emotion behind my eyes – fear, gratitude, sadness  – but I couldn’t express any of it as I pressed on to where said you saw him go.

I want you to know that when I found him, I hugged him hard, and thought about you – what you had done for me by keeping an eye on him even though he isn’t yours, and how much I noticed there was no judgement in your eyes or in your words.  Thank you.

I want you to know that I have navigated his diagnosis, his surgery, his illness, and his school needs but this territory of Independence which I navigate now is too big for me.  I see in his eyes and hear in his voice his pleading – I’m twelve, mom – and I’m terrified.  Can we move back down, to eleven, ten, nine…..all the way to when I could hold him and protect him, and keep him safe?

I want you to know that my only hope, really, is you.  Please never take your eye off my son or others who need you too.  And know that even though this boy will become a teenager, a young man, a man, we will never outgrow our need for companions on this journey.  Please walk along with us, for as much as we try, we cannot travel alone.

Living the Dream

DR and GW

Dear Gerald Wallace,

Thank you for sitting and talking with Davis. Although for you this was just a moment in time before heading off to your work as a basketball player, for us it was a glimpse of our boy living his dream.

I don’t know if Davis mentioned it or not, but he wants to be a professional basketball player too. Although the slim odds for making it into the NBA would discourage most, Davis will not be deterred. His optimism is one of his best qualities.

This may be one of the most challenging things about being Davis’s mom. How do I encourage his dreams, knowing that his aspirations are with certainty beyond his reach? Do we get to a point when we’re sitting at the table when he’s thirty years old and he’s finally acknowledged it isn’t going to happen, or will we still be talking twenty years from now about what round of the draft he’ll get picked in?  Does it matter to him?  Does it only matter to me?

I know our society doesn’t value individuals like Davis, slow in mind and body, but Davis doesn’t know that. He knows that our society values professional athletes and so he plans to join your ranks, not only for love of the game, but for its reward as well. Did he tell you about the mansion he’s planning to build with his NBA salary?

So as we navigate the terrain of guiding this child as he grows, we thank you for giving us a story to sustain his dreams and bridge the gap. We will talk of the time when he sat with Gerald Wallace, and shot a hoop or two, and hope that gets him – and us – close enough.


As Davis has grown up, there has been a series of television commercials for an allergy medicine running frequently.  The images are blurred until the actor takes the medicine, and then the blur slowly rolls back from a corner of the television image and soon everything becomes “Claritin clear.”  And so it is with Davis.

When we started out eleven years ago, everything was blurry.  We would desperately squint for any glimpse of what a toddler or five-year-old or a teenager with Down syndrome would be like.  Although there was no pill to take for clarity then, in our heart of hearts I think we knew we weren’t ready for clarity anyway.  So we waited.

At the playground a few years ago, I got a glimpse of a boy walking up a slide and and as I turned to scold him for going the wrong way, he smiled at me and I had a Claritin moment.  This was Davis at five.  It had all worked out o.k.  This was what I was so desperate to see when he was born – the image of a boy navigating the playground in his own way and in a way that is just fine.

When I still have moments of my own blurriness, wondering what it is all about, still with some hope for clarity on who I am and what I bring to this world, this now eleven-year-old turns to me, sweeps my chin with his gentle hand and says “you’re so pretty mommy.”  This is clarity that I can live with.

When the speed of this life keeps our family on the fast track and we are about to race through dinner, Davis is the one to call us to grace, holding on to the traditions of this life tighter than any of us who surely need those traditions more.

When I struggle with what might become of my self-centered twelve-year-old and how he will make it in this world if he doesn’t shape up, he grabs Davis’s hand after a tumble and says “are you all right, honey?” and I have clarity that he will abandon his childish ways at some point and will in fact become a caring adult human being.

Not all of the moments of clarity are as satisfying.  Moments of clarity also strike in a cryptic note sent home from the teacher about Davis’s behavior or in a neighbor’s comment that all three neighborhood children play so well together when really there are four but she refuses to acknowledge Davis among the others.  But I can withstand this.  And the blurriness of whether I could be strong enough fades as I find out that I am.

We still squint to imagine Davis as a teenager or Davis as an adult.  But the desperation is gone, previous moments of clarity having reassured us.  What is so difficult about the blurriness at birth is that there is nothing to hold on to.  There often is no experience of clarity and light when the baby with Down syndrome is born.  Sadly for many, myself included, at first there is only the experience of darkness.

It is a wise and good thing to remember the stages of the journey.  Sometimes we hesitate to share photos of our toddlers and preschoolers with those just joining us on the journey, knowing that amidst the hurricane of emotions whirling around the new mother, she needs less an image of how fine her child will be and more the assurance that light will follow the darkness in the way that morning follows night.

I promise you I have seen with clarity that it does.

For Kyle

A friend of mine, Kyle Gendron, just lost his battle with cancer. A father of three young children, he should have been getting ready to send them back to school this week; instead they are left with this hole in their young and tender hearts that can never be filled by anyone else.

A kind and generous soul, Kyle was loved by many. Thousands, if not tens of thousands, of prayers were surely offered for his healing. Across his two-year battle with colon cancer, everyone around him pleaded with God to spare his life, restore his health, and permit his children to grow up with a father, who they so desperately need and so deeply love.

And yet this God – the Creator, the Great Physician, the Bestower of Miracles – in response to these prayers for healing, remained quiet. The prayers for the restoration of Kyle’s health went unanswered. And just the opposite, he faced two long years of medical procedures and treatments which were a constant challenge.

Kyle’s family looks a lot like my family. He and his wife Kerry were married almost as long as Glen and I have been. They have three children, roughly the same age as mine. Their middle child, daughter M-E, has Down syndrome. So does my middle son, Davis.

And yet on my family goes, for now in good health and together. How can one make sense of that? How can one reconcile a Loving God with the many unanswered prayers for Kyle’s recovery from cancer – a reasonable plea to spare this young father’s life, a request well within the ability of Almighty God to grant. The only way I am able to reconcile this is by turning my focus away from this large, looming unanswered prayer, turning to look instead at the evidence supporting all of Kyle’s “unprayered answers” – the blessings that were given to him – the provisions God sent – although they may never have been prayed for.

At the top of the unprayered answer list is Kyle’s beautiful wife, Kerry Hennessy Gendron. God provided Kyle with a wife who is stronger than anyone should reasonably be. She has lit the way across his journey for all who loved him, showing us how to not fear getting close when the tragedy was imminent and overwhelmingly sad. I don’t know if Kyle prayed when he was younger for a wife who was in equal parts extraordinarily courageous and gracious, but that is what he got.

Whether Kyle ever specifically prayed for two handsome wonderful boys and a beautiful daughter I will never know, but I suspect as well these were blessings sent his way without a specific request. I know his children made him who he was in many ways, and gave him the opportunity to be the outstanding father that he was, always present for their activities and proud of their achievements.

And do any of us ever specifically pray before disaster strikes for a circle of family and friends that will be there in our darkest hour? But that is what Kyle received without asking. An unfathomable number of people who loved him, appreciated his gifts, cherished his time, and who rallied, each as best as they could, to support his family so they never felt alone even when the road was darkest.

Pondering Kyle’s blessings doesn’t make the big question of why wasn’t he healed go away, but thinking about the unprayered answers Kyle had on this earth helps me believe that he was loved by a God who was not surprised that he got cancer, but had provided the support Kyle would need to get through it, long before Kyle got sick.

And get through it Kyle did, and so will those who so deeply feel the loss of Kyle in their lives.