When people ask how it is I raise two children with Down syndrome, I’m not always sure how to respond. The truth is, in my heart as a mother, I simply raise my two children. The “with Down syndrome” part of the phrase is something I don’t give much thought; to be honest, it’s become pretty irrelevant as my journey as a single mom continues.
Over the years, my skin has become thicker. Judgment from others doesn’t break me anymore. I’m stronger, and I’ve learned to enjoy the challenges. What was once my worst enemy — the fear of their “disability” — now empowers me. I’ve learned that when dealing with the unchangeable, there is only one thing to be changed, and that is you and your personal perception.
As a divorced parent of two children with special needs, I don’t consider myself part of the statistics. My divorce had nothing to do with my children — it was quite the opposite, in fact. Many efforts to stay together were made out of love for our kids, but in the end, it still didn’t work. We both grew up and matured in different directions, as often happens with many other couples.
But even still, I wouldn’t want our story to have happened any other way. Here’s what I want others to know, from the outside looking in.
Our life as a family of three is both incredibly simple and intensely fascinating.
Our life is pretty typical even while being so atypical. I treasure every second, and even though our memories may not look the same or may not happen in the expected time range as many other families, they are just as wonderful and special. My daughter turned 9 in February, and my son just turned 12 in April. If I’m being honest, they are both still learning to talk. They still have significant speech errors in both languages, but they are growing up bilingual, and that makes me extremely proud. I just adore hearing them talk, and I feel blessed to have them both in my life. I love my children as much as any parent would love their own children. And because I’m a proud mother, I think they are the most beautiful and amazing kids in the universe.
When I look at them, I can clearly recognize that their physical appearance is strongly influenced by their extra chromosome, and I love them just the way they are. Really, I couldn’t (and wouldn’t) even imagine them any other way, as I’m sure they don’t imagine me any different, either.
Our life together has its ups and downs — just like yours.
Sometimes I ask myself why everything has to be so hard on us. But I guess life is just complicated by nature. We all have personal challenges that in our minds are the biggest and most important ones.
In my very special case, I’ve made some choices that add excitement to the pile of other things that I must deal with, because I believe in inclusion, and I believe in prevention. Because of this, I’m always in the trenches for a reason. I believe in equality and I believe in diversity, so my hope is that in sharing our story, I’m promoting and celebrating each one of those things.
While it’s true, our lives are far from “normal” (if that word makes any sense), they are okay. Nothing is perfect and there are many reasons to complain, but there are even more reasons to be grateful and to be hopeful. I hate when people look at us as a statistic or as a scientific research paper, because besides the long title of: “Single Mother of Two Children with Down Syndrome,” I’m just a mother, and they are just my children.
We’re just trying to do our best, every single day.
We pray together, we celebrate each other, and we would not be who we are without the faith that we have in each other. This is true love to me, and it cannot be changed or affected by the labels that many times are put upon us, in an effort to define us.