Discovering a New Landscape After My Son Was Born With Down Syndrome

We walked down the hallway of the church where the meeting was being held. Matt held the baby carrier, swaying slightly with the gait of his walk. It was somewhat dim in the hallway, and Matt’s and my footfalls echoed off the walls. It was evening and the congregation had long returned home from the morning’s service. Though this was the first time we had set foot inside this church, I imagined the vibration of the organ’s music under my feet, the choir in white robes, a bright satin sash of solid color draped diagonally across their chests. White candles being lit, the rise of the preacher behind the pulpit, singing along heartily with his choir, his flock forgiving his tone deafness because of his heart for his Lord.

The sound of voices ahead broke the reverie of the imaginary church service in my mind. For that brief moment of choir-filled distraction, I was thankful. My mind had been a swirl of unanswered questions since our son was born just over a month ago. I felt I was living in some kind of surreal dream., thoughts swirling like Picasso clouds above my head. A cloud is a cloud, and yet different.

Matt and I followed the sound of voices and found ourselves in a very typical church classroom. Spacious, rectangular, utilitarian. An oblong table had been constructed with two or three long tables pushed next to each other on each side of the room, with one long table connecting the ends of both sides. The tables were lined with chairs. No one was sitting. Women stood around the outskirts of the table, and a few men (I was relieved to see for Matt’s sake). The women and men were clustered in small groups of four or five. But they didn’t stay in their groups. They would mingle and move around from group to group. There was a sense of ease about them — they all knew one another.

To the far right of the room was an open area. About 10 children ran around laughing and playing. Tears started streaming down my face. I couldn’t even place emotions to what I was feeling, it was all jumbled up inside of me. If I had to scoop it all up in my arms and label it, I’d call it “overwhelm.” I was “overwhelmed.”

There were a few adults in this area too, chatting with one another, playing with the kids or redirecting a child from taking off to a door. It all seemed so “normal,” but it wasn’t — not for us.

“Hi, have we met before?” A woman was standing in front of me.

“Oh! Um, I’m sorry, I just… we are the Taylors. I’m Christie. This is my husband Matt, and um, this is our little guy, Wil. He’s just over a month old now. We have twin girls too. They are home with my mother-in-law right now.”

“Very nice to meet you, I’m so glad you came,” she said, and put her arm on my shoulder. “Let me introduce you to some parents.” When things don’t feel normal inside, the simplest responses are breathed in deep like the fresh air they are.

I don’t remember all of the people Matt and I met, but we met almost everyone in that room. The common theme, over and over was, “Yes, this is a challenging journey, but a very joyful and gratifying one. Though you may not see it now, you will. I promise, I promise.”

I didn’t see as far into the journey as they did, but their promises were my beacon. Though I didn’t grasp the full meaning of their statements, I could now see beyond the blurry, surreal clouds I was living in, heavy with question marks.

Soon the meeting began and we all sat down in one of the chairs that lined the oblong table. The majority of the meeting was about learning styles for our kids. I discovered that day that our kids with Down syndrome are mainly visual learners and math tends to be the most challenging subject. I don’t remember many other details about the sit-down portion of that meeting.

However, I did take home one key element — questions are good, but you can also get too far ahead of yourself. I wanted to know everything right now. I wanted those funky, surreal clouds to disappear and the answers to make themselves known. And they would, in time. In time I would learn about Wil’s math skills. In time I would learn about Wil’s visual learning. But right then, I realized what I most needed was having my feelings validated.

I needed someone to say, “You know what, I was there too.” For someone to say, “Yes, you have a beautiful baby, but it’s also OK to feel sad, to feel scared, to feel like you don’t know what is happening.” For someone to say, “We have tried to decipher the same Picasso clouds too, and we have walked through them, and we promise, and promise again, the sun is shining on the other side. It may be a Picasso sun, and you will appreciate this type of sun more for having known the Picasso clouds.”

Time can be hugely discomforting as you wait for answers. And that is exactly why time is also a healer. Some things must happen with time. With experience. With day-to-day learning. Living in the unknown is an unsettling place to be. I thought knowing the answers would heal my pain. But it was the time with my son, and experiences with my son, that opened my eyes to the beauty of our new landscape.

On the last Sunday of September each year, I walk into a big park. Some years there is sunshine. Some years there are clouds. And some years there is rain. But every year, you will find multiple volunteers assembling long rows of tables lined with chairs. A big truck will pull up and unpack banners, balloons, t-shirts, food trays and such. Another big truck will arrive with a stage and band equipment. Once the stage, instruments and speakers are set up, the music begins to play. There are many spare instruments laid out for anyone who would like to play with the band.

It doesn’t take long before a huge group of kids and adults with and without Down syndrome are dancing and playing with the band. There are multiple families and friends clustered around the stage. They mingle and move around and talk with one another. There is a sense of ease about them — even if they don’t know one another, they all have a common bond that brings them together.

This is a surreal dream, one I now can’t imagine not living in. Those funky Picasso clouds and sun I once wondered at are our normal. The promises I held so tightly to those years ago did come true. Time, experience and support truly are healers. If I had to scoop it all up in my arms and label it, I’d still call it “overwhelm.” I’m overwhelmed with joy, gratitude, fortitude and community.