On the surface, our routine as a family probably looks utterly familiar and typical.
At the beginning of every week, my husband, Kyle, and I prepare for the delicate dance that so many other families are experts at–the routine of getting our three-year-old son, George, off to school, getting the baby, Vera, down for a nap, grocery shopping, speech therapy, bath time, doctor’s appointments, running late, things of the like. We sneak in play dates, family adventures, and tantrums. At the end of our weeks, we are tired, our hearts are full, our dishes are piled up, and we’re rushing to get laundry done.
On the surface, there is very little that is out of the “ordinary” for our family. And we certainly don’t feel like there’s anything different about our family–we are just the Johnsons! A mom, a dad, a son, a daughter, and a few cats.
But our family is special in the very best way. We hold a little piece of magic that few other families get to experience. And, we celebrate this difference loudly and proudly. Our son, George, makes our family very special with this diagnosis of Down syndrome.
George’s Down syndrome is one of the very best things that has ever happened to me.
His diagnosis has given us a ticket to a beautiful world of community, celebration, resources, and human connection unlike anything I’ve ever experienced. But beyond that, his existence has given me a new worldview and perspective that has shifted everything about me.
We call George’s diagnosis of Down syndrome our family’s North Star. So much of our “village” is somehow connected to the Down syndrome community. We make our family decisions on schools, classes, and even playgrounds based on who and what can best serve him. We get him to see the best therapists and programs that there are in the Metro Detroit area. His diagnosis even came up when we were talking about growing our family. We were (and still are) so thrilled that George’s siblings will be lucky enough to love someone with Down syndrome.
This might sound overwhelming. I’ve been told by people outside of our world that parenting a child with Down syndrome seems like a full-time job. People have shared with me the fear that they’d have to give up careers and friends if they were in our shoes. So today, in the month of October, as we celebrate Down Syndrome Awareness Month, I want you to know and hear: my family’s life is not Down syndrome.
It’s a difficult thing to explain, because George and his world are a major part of our family’s dynamic.
It is not, however, exclusively what our family DNA is made of. It isn’t all-consuming. Yes, we go to specialist appointments, IEP meetings, therapies, and accessible playgrounds, but we also do the things other families do. We go to the zoo, we take family vacations, and we dance in our kitchen. We do the things that all families do, and we do those things without thinking about how many chromosomes are in the house.
Our family is a celebration of Down syndrome. The simple, routine activities that other families may not think much of become beautiful demonstrations of our fortune. Every time we step into a grocery store with our son, we are showing the world that our lives are fuller and richer because of George as he smiles and waves at every single person that he passes, and that person sees how joyful Down syndrome looks.
When we go to a doctor’s appointment, medical professionals see how fulfilling George’s life is. They see how Down syndrome can positively impact a family. When we go to playdates, we teach our friends sign language to help communicate with George. They learn that communication is not a “one size fits all” type of thing, and they have gained a new perspective.
We do all this simply by loving our son.
George is changing the world without even knowing it, simply by existing. Our family, including George, doesn’t have to do anything special or extraordinary to be special and extraordinary. We do our lovely, simple, day-to-day activities, and George sprinkles his magic onto those routines. We appreciate and celebrate it, and we certainly love him all the more for it.
As we celebrate Down Syndrome Awareness Month, I want to shift the perspective from being “aware” of Down syndrome to appreciating Down syndrome. My family is a perfect example of why: my family is certainly aware of Down syndrome, as it is the guiding light of our family. But more than being aware, we appreciate what Down syndrome has gifted us.
–Guest Post submission from Taylor Johnson
