Monday, September 27, 2010


Did you know October is Down Syndrome Awareness month? Check out a Buddy Walk in your town. Spend some time learning a little more about Down Syndrome. Invest some time in the life of someone with Down Syndrome. I promise, you'll be the one who gains from the experience. 

I wrote some thoughts down in honor of the celebration. Just my experience, but read on if you want to know more. 

I have a son who sits at the “special” lunch table. You know, the one you know is there, but you don’t go out of your way to stop at. Growing up, my visions of myself as a mom included me sitting in the bleachers watching my son play football or baseball. Or maybe, worst-case scenario, watching him play in the marching band. But I was never the mom of a kid with a disability. It never even crossed my mind.

We were new parents when we got a call from my husband’s best friend, John. They had just delivered their second son, Zachary, and discovered at birth that he had Down Syndrome. We were devastated for them. We supported them the best way we knew how, but I remember thinking how I could never be that mom. I crossed Down Syndrome off my list of possible outcomes. Now that someone close to us had a child with Down Syndrome we were immune, right?

Two years later, as the tech grew increasingly quiet during my 18-week ultrasound, I knew in my heart that my family would never look average again. There would always be something different about us that would keep us from blending into the crowd. In those first few weeks after receiving the news that my baby would be born with Down Syndrome, I didn’t think about his baby and toddler years. My mind jumped ahead to the years when my child should start becoming independent. Driving, having a job, his first girlfriend. All experiences I could picture for my other son, but not for this child. I thought about my own life experiences and compared them to what this child would have. I was angry and frustrated over the loss of control and afraid of how unknown my future now felt. I grieved the loss of being typical.

Over the next five months I indulged every emotion and came to a place where I was anxious but very joyful about Ben’s birth. From the minute his tiny almond-shaped eyes met mine I was hooked. I don’t think I put him down for the first six months. I learned to deal with the stress of Ben’s physical challenges during his first year of life. We spent hundreds of hours meeting with specialists and therapists. Life had changed as I knew it, but my heart overflowed with love for this sweet boy.

I tried to take each day as it came. Honestly, each day had enough to handle during these first few years. Yet, when the stress piled up, I’d often find myself thinking about the future. Babies with Down Syndrome get a ton of positive attention. Everyone wants to talk to you in Starbucks. People smile when your eyes meet. Babies are lovable to most people, even when they are obviously different. But what would Ben’s life look like as he grew? I wondered how it would feel when the world’s reaction to him changed.

Being book-ended by brothers was a blessing for Ben’s development. He adored Lincoln, two years older, and had a best buddy in Harrison, three years younger. From the time Harrison was born, I knew the developmental gap would quickly close, and he would pass Ben by. About six months ago, I overheard my 2-year-old talking to Ben in the kitchen, “No, no, Ben. No go outside” as he shut the back door. Rather than the sadness I expected, this felt like a natural part of their relationship. Being a caretaker to Ben will be part of Harrison. He’ll be a more compassionate, tenderhearted person because of growing up with Ben.

The smiles and interaction that we experienced when Ben was a baby gradually stopped around his third birthday. His presence in a room was obviously becoming more uncomfortable for people. I was surprised at my own reaction. Instead of anger, my intense love for this boy gave me the desire to help others know him. I found myself initiating conversations with people who showed the slightest interest. Gently persuading others to take the time to get to know Ben.

One of the most common questions I’ve gotten about Ben is “do you know how severe his Down Syndrome is?” My standard answer is something along the lines of “like our other children, we won’t know what he’ll be able to accomplish until he’s older”. But the truth is, Ben’s real potential is in a realm that most people don’t ever slow down to experience. The thoughts I had while pregnant about what his life would look like have given way to my desire to experience life with him at his level, from his unique perspective.  Ben’s potential is as much about what he has to teach the people in his life as it is about what he is able to accomplish.

Ben started kindergarten a few weeks ago. I found myself buying out Gap Kids to guarantee he would be the best-dressed kid in the special education department. Mission accomplished. It was such a different experience than dropping Lincoln off at kindergarten two years prior. There was a part of me that wanted to turn around and wheel him right back to the car. There’s still part of me that wants Ben to be in a typical kindergarten classroom with a bunch of rowdy 5-year-olds and lingering parents. But I’m learning to accept that Ben’s pace is what I need to adjust to, not the other way around.

Last week Lincoln had his first experience with classmates teasing him about Ben. He brought it up on the way home from school. I could see the pain and confusion in his face when he said, “Mom, I didn’t know what to say. I just wanted to kick ‘em in the shin.” While part of me wanted to affirm the shin kicking, a bigger part felt the significance of the moment. This is the beginning of Lincoln learning to demonstrate his love for his brother. It might not be a typical experience for a 2nd grader, but nothing about us is typical. And I wouldn’t have it any other way. 


Lisa Eaton said...

Jen-Love this post and love your family!!!

sandalloons44 said...

wow, what an incredible story Jen. I can relate as you might remember with my Andrew Ryan now 6.6 1/2 inches tall, 18 years old that has been diagnosed with Autism, MMR, ADHD, Seizures, and Phychosis, and most since 2.5 years old. Not the average baby born though.
On his behalf I fought the state and placed him in a group home for safety for him and ourselves in 2004, and that was the best decision of our lives. I can have more positive, happy times with him now. But, like you said you think about their futures or that of your other children. He won't drive, have a girlfriend, get married, but he could possibly eventually as he tries to get out of school, get a job one day.
hang in there! Your child as well as them all are a special gift to you from God and he knew you could do this. :)

And oh my when did you move to San Diego? I bet you all are in heaven living there. So, nice the beaches and the beauty of that all.

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