“Even the smallest person can change the course of history.”
– J.R.R. Tolkien
Sometimes I look around at my life and am surprised by what I find.
I dislike messes and chaos, but we have three dogs – all in the house – that constantly track in dirt and detritus despite the multiple dog doormats (which do work, by the way, but can only do so much when there are three dogs).
I’m coming up on fourteen years as a stay-at-home mom, which I certainly never expected. I stayed home to study and got up for early morning classes while my friends slept in to get my degree in electrical engineering, then went to school at night for two years to complete my MBA, yet here I am – not in the workforce, but at home cleaning toilets and doing laundry and mopping floors (So. Much. Mopping.)
I do recall hoping to have a car full of kids’ sports equipment, and while that part did (sort of) come true, I didn’t also expect to fill it with lofstrand crutches, a wheelchair, and Sam’s Club-sized boxes of pull-ups for my first grader. I’ve made a lot of trips to the ballpark, yes, but I’ve made a lot more to the therapy office.
It’s not what I expected, but I’m not unhappy or dissatisfied.
I have a wonderful husband whom I adore, a lovely (if dirty) home in a beautiful city, and caring friends and neighbors. Despite being a teenager and all that entails, my daughter still enjoys spending time with me and shows a surprising level of maturity for her age (most of the time). My son still wants to sit in my lap and greets me at the end of every school day by vaulting all 50 pounds of his body into my arms.
It’s a beautiful life.
But I wonder what other people see. Do they see the wonderful life our family has built? Do they appreciate the gifts of loving sacrifice we have made for our children or do they only see what we didn’t (or couldn’t or can’t) do? Do they look at our blessings and only see burdens? What do they imagine we do more often when we are home alone – laugh or cry?
I read something recently that was written by a mom of a boy with Down syndrome. When contemplating how others view her family, she said:
“It’s like looking at a stained-glass window from the outside: The colors look dark, and you can’t quite make out the figures. From the inside, however, with the sun shining through it, the effect can be brilliant. From inside our family, love illuminates our life with Charlie. What may seem dreary to others, perhaps even unbearable, is actually filled with beauty and color.”
It’s a beautiful analogy many parents of children with Down syndrome would understand.
Unfortunately, many in our society are unwilling to see anything but the outside of that window – and some refuse to see it at all. False perceptions, outdated stereotypes, and fear of the unknown lead people to destroy the windows that could bring such a brilliant beauty into their lives.
If you’ve read my blog for awhile, or others like it, you’ve probably heard about the high rate of abortion following a prenatal diagnosis of Down syndrome. The statistics sound horrifying, but there are many women – I am among them – who opt out of prenatal testing. A more telling number is the percentage of people with Down syndrome who are missing – the best, most recent estimates indicate that number is 30% of the Down syndrome community.
Three out of ten. Gone.
As a mom, it’s tempting to be angry. Instead of a Down syndrome community of 400,000 people in our country, we have only about 250,000. Fewer people with Down syndrome leads to fewer services, fewer supports, and less funding for research for those with a condition that’s naturally-occurring (albeit non-typical). Those are real-world consequences that can negatively impact my child.
But the real tragedy is not found in a lack of resources, but in the loss of the beauty that children like my Nathan bring to our world.
They are like beautiful stained glass windows no one will ever see.
Note: the book in the photo above is I Am George Washington, from the children’s book series Ordinary People Change the World by Brad Meltzer. Affiliate link included for your convenience.
Those missing hugs alone are reason to mourn. Such a horrifying statistic. Thank you you for sharing the beautiful, colorful light parenting a child with Down Syndrome has brought to you and those who know your son.
Your words are important, necessary, and reflect what I experience from your kids as a friend and fellow parent. It seems we all make assumptions that never give us the whole picture about anybody. I wish that children could be seen without these assumptions. And, its hard to know when people can be beyond such thinking or not.
But, they learn from you I think that they are capable of anything. You see the stain glassed window from the inside, and the colors fill up your heart. And, that is what helps them shine I believe.
Its hard to believe that when we are mopping a floor and thinking, did they do what we asked them to do? I too struggle with that very issue. I have that hard sought after Masters Degree. I even have a start in my field. But, its been 14 years for me too. Thats a challenge for me many days. But, I don’t want to miss those colors either.
Great writing! Thanks for the imagery.
Personally, I love seeing your family. I think your life, while it may have different struggles than others, is beautiful. The way you communicate with everyone is honest and open and I think it does a lot to increase both awareness and compassion. So, I guess what I’m saying is that I see the beautiful colors that are the tapestry of your family life, because you have let us in to see the stained glass from the inside. 🙂