Embracing the 'Journey Less Traveled' During Down Syndrome Awareness Month

“Every round goes higher and higher…”   ~Baptist song

There are pink ribbons everywhere. Men wear pink ties and runners pink tutus. The car in front of me at the red light has a pink license plate holder. The beauty supply store has a pink blow dryer and flat iron set that benefits a national foundation.  I feel a cooler breeze on my skin and there are more leaves adorning the once green grass that is my back lawn. It is October. The beginning of fall. The season of pumpkin this and spiced that.

Amidst the rustic autumn colors and a vast sea of pink, I see a festive splash of yellow and blue from a familiar face on my Facebook timeline with a moniker I have grown accustomed to seeing: More alike than different. As I scroll, I see another stating, “I rock an extra chromosome. What’s your superpower?” The advocates are out in full force spreading facts in attempts to bring awareness and shatter stereotypes. But this time it’s not about pink. October is Down Syndrome Awareness Month.

I became a mother on a windy Wednesday morning in January of 2010. I became an advocate some time later. I became a “supermom” and channeled my hurt and despair for the unknown into advocacy and work for my dear daughter (DD). The last two years have been a whirlwind, and I have powered through them with all the strength I could find left in my reserves. I am a special needs mom. That’s my superpower. I have become sensitive and insensitive, afraid and courageous, strong and uncontrollably inconsolable, all while embracing this journey less traveled by those who seldom choose this path yet are chosen just the same.

I scroll and see another post from a friend whose daughter just got accepted to college. The fact that she has Down syndrome is just a sweet addition to the news. Barriers are being chiseled away.  It does my heart proud to see this, because when DD is able to apply for college a decade or so from now, the foundation will have already been laid. We are on the verge of our second IEP meeting for kindergarten. The pangs of inclusion tug fiercely at my heart, and I go to bat for her with no holds barred. She can and she will — not just in October, but every day.

Each year I reflect on how far we have come. I also am sorely aware that we have farthings to go.  Awareness comes at a price — sometimes steep, sometimes amicable, sometimes steady and sometimes fluctuating. Yet we are thoroughbreds. We attack the curves just as we breeze the straightaways. October brings about a chance for me to assess my own journey. I revel in the days that are light and airy and I feel as though my course is plain, and in the next instant I am engulfed in fog. It is a non-stop bullet train with the highest peaks and the lowest valleys, and we hold on for our non-stop lives. I am a special needs mom. It’s what I do. I hold on, and then I hold on some
more.

In these short six years I have become more aware than I ever thought I could be. Self-aware. Aware of my surroundings. Aware of those looks, those stares, those eerie moments when a complete stranger looks for the right way to approach you. I am also aware that there are great people who understand what you feel without saying a word. I know now that family is not just formed by blood ties, but a collection of venerable souls who love you for the familiarity you bring.  So rather than post for others, I remember a few mantras that help me get through the rough patches.

Curiosity can lead to advocacy. Take a moment to remind someone that we are all people first. Conditions are simply the extra that makes us human. So if you can stare, you should be able to share. Say “Hi” to someone and they may say “Hi” back.

Embrace your inner velociraptor. Don’t be afraid to take a note from these seemingly unassuming creatures. Sometimes you just have to tap your claw to let a naysayer know you mean business. Some people can be downright mean, on purpose. Others can try to sugarcoat an insult with, “But I didn’t mean it that way.” These are the times you may have to go Jurassic Park on them — and then put your claws away for another day. Let them know you can be fierce if need be and kind the next, but all the while gaining the respect that is due.

Your new life is for the living. I have come to realize that the life I once led is no more.  I still have my memories, but I don’t long for those days. I have found a new sense of self in the life I have now. I do not tread on rose petals most days, but when I do the fragrance they emit is the most sweet and savory that I have ever smelled. The road I travel has narrow alleys, but they are lined with interesting nuances I would have never seen on a wide open path.

I am well aware that I must trust my instincts and parent in the present. I kiss her little face, she kisses me back and I’m alive inside. I am a special needs mom. It’s who I am. It’s what I do.

It’s October again. I think I’ll hold on to this new life and live it up. Then I’ll hold on some more.

This story was previously published on the blog, Countdown To K, and in “Inclusion Is for the Included: A Collection of Stories from A Special Needs Mom” available direct via blog and on Amazon.com.

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