Reflections on Turning 40 as the Mother of a Child With Down Syndrome

Knock! Knock!

Who’s there?

40!

40, who?

This isn’t a joke, people. I’m about to turn 40. Like, in a few weeks.

Somebody pass the chocolate. The dark kind, because I hear that’s the best for your health. I guess I have to worry about that stuff now.

When I was younger, I dreamed of being older. Now that I’m older, I dream of being younger. Kids might do that to you. They change you. Throw in a diagnosis of Down syndrome and you might find yourself never wanting to leave this earth. That’s where I find myself, afraid of aging.

I was 30 when I started having kids. My oldest child is about to turn 10. My middle child is 8. Then there’s Willow. She is 3 1/2 years old. She’s the one who makes me want to ignore my upcoming birthday. She’s the one who makes me wonder what would happen if I left before her.

Right now, the news headlines seem scary. Really scary. I have no idea what the future looks like for disabled individuals like my daughter. As a former news journalist, I try to stay informed, but I’ve also learned it’s not healthy for me to get too caught up in the drama of the day as it just causes undo stress. And, if it’s true that stress can take years off your life, I want no part of it. With such uncertainty in the horizon, I want to be here for my kids, especially Willow.

While turning off the tube can spare me some stress, I’m unfortunately unable to avoid it in other areas of life. I try, but boy, I swear it’s impossible sometimes.

Over the past several years my family has adopted the motto, “Be comfortable with the uncomfortable.” That’s meant a new job for my husband, a new home in a new town, and a bunch of new challenges in life. Overall, we’re comfortable, but when you add unexpected things into the equation like sickness or a dead car, stress pops up. I shudder to think how many years I’ve lost because of worrying about things like a simple sneeze.

Stress isn’t the only thing that ails me. I feel my age. My knees ache, and I’m tired all the time. I have a strong desire to take care of myself, exercise even, but time is my enemy. I guess you could say “self-care” isn’t easy for me. I hear that’s common for parents of children with disabilities. It’s also the middle of winter and freezing cold where I live, meaning getting outside to walk or jog is near impossible this time of year.

Even with desire and time on my side, a 20 below wind chill keeps me inside. The ironic part is I had a nurse tell me the other day I had “great health.” According to a recent blood test my numbers all look good, my good cholesterol, my bad cholesterol, my blood sugar, etc. At least I’ve got something going for me. So, why am I so worried about turning 40?

Willow needs me to be young. She needs me to keep moving. She keeps a busy schedule between her therapies and school and various appointments. She needs me there to teach her things. She needs me there to guide her. She needs me to advocate for her until the world recognizes she has a voice of her own.

Not only do I want to stay youthful, I want to stay alive. Plain and simple. As a Christian, I’m taught not to fear death, and really, I don’t. I look forward to heaven. But, there are days when I feel frozen with the thought of what I might be leaving behind. What happens if my husband and I go before Willow? My husband, by the way, is even older than me.

I’d love to think that Willow will be independent enough to live on her own someday, but I have no idea. I’d love to think that if Willow weren’t able to live on her own one of her older siblings would take her in, but I have no idea. I’d love it if I didn’t have to think about this, but that would mean Willow dying before me. And, well — I just can’t.

Good golly, I don’t like that I’m turning 40.

As much as I try to ignore it, my old age is coming. The signs are all around me, even in the most unexpected places. OK, maybe the gray hairs aren’t so unexpected. I am raising three kids. But, even my e-mail mocks me. Just this week, I got an invitation to join AARP, an advertisement for a seniors only cell phone service and an offer for 65 percent off that popular little blue pill. I’ll have you know I did not respond to any of those offers.

Forty is coming whether I like it or not. So, today I will live. And I will love. Because as I mentioned earlier, kids can change you and mine have taught me how to do both of those things. And, Willow? She also taught me how to dance and how to smile. Everyday, no matter what. Wouldn’t you know, both of those things have proven health benefits and could quite possibly add years to my life.