Life and Loss in the Down Syndrome Community

Today I hold my baby because another mom cannot hold hers.

Nine months into this ride — this roller coaster of Down syndrome — I have realized I love my son more than life itself. I can only assume this love comes from the extra blankets of protection I wrap around him, the extra time and energy he needs, and of course, the little personality traits that come from having an extra chromosome. In my opinion, babies with Down syndrome are angelic.

There are days when I hold my son just because that love is so intense, but then there are days when I hold him because another mom has lost the physical being that encompasses this love. Today is one of those days.

The Down syndrome community lost a member today. A baby boy only 12 days older than my son earned his wings and is no longer in his mom’s arms. My mind and heart are heavy. I feel the weight of the disability, congenital heart disease and the hard and desperate times that can accompany both. I feel the weight of not taking life for granted and being so incredibly thankful that my son’s heart defect is not significant. On days like today, I do not care when he’ll walk because damn it, he is alive.

But mostly, I imagine the weight that this mom — whom I’ve never met — feels. Her pain is in the pit of my stomach and in the center of my heart and mind.

Children with Down syndrome are still relatively “uncommon.” Those of us who have one, know the incredible and unique gift they are to the world. I believe these children can change how people view the world and what they value in the world. They can make every life they touch better for reasons that are far too many to explain. Yet, too many of our babies are lost to abortion and complications in the womb, which is why the loss of another is unfathomable. That intense and indescribable love is tearing a hole in one momma’s heart that is big enough for the whole community to feel. A loss for her is also a loss for us.

Mothers of children with Down syndrome band together and stick together — we are a force to be reckoned with. We live in online communities where we answer each other’s questions night and day, and we raise each other up around the clock. We constantly share resources, give advice, and lend support and a helping hand. When one mom is struggling and feeling negative, there are 20 moms who are positive supporting her. When one mom is hurting, every mom is hurting.

We mommas go through a lot. The extra appointments that are oftentimes equivalent to an emotional septic tank; the unanticipated health concerns that only a specialist two hours away could address; the physical, occupational and speech therapies that tire you and your baby to the core. We can never reconcile the guilt of not engaging them constantly or heaven forbid, spending time by ourselves. Finally, and for me the hardest, we will never stop anticipating the sadness we will take on when someone decides not to be our child’s friend or exclude them from activities. True, mothers of typical babies can have the same concerns, but for us, the moments are hardly fleeting.

We are tired. We are tired of advocating, we are tired of repeating, “People first language please,” and “Stop saying ‘retarded.’” We are tired of the struggles, and most of all, we are tired of feeling alone. When we retreat to our phones, we know someone is there, someone understands, and someone cares. That is our virtual community, and for a lot of moms of babies with Down syndrome, their easiest and maybe only refuge.

So, please allow me to mourn with my online community. That is often all I have. Do not judge me for turning to other moms I have never met when they are often the only ones available who have truly walked a day in my shoes. These moms are strong, they are courageous and they are proud even when they are tired. And when one hurts, we band together, hurt together and heal together. And that is what I call community.