How I Mange My Anxiety as I Parent a Child With a Disability

There was a ship and a dragon. Sometimes the ship was Pirate themed, sometimes it was right out of Peter Pan (the Mary Martin version) but it was always a dragon. It flew through the air with harrowing teeth, spraying fire, and every time, right on cue — it tried to eat my Dad.

But I always woke up, just in time.

The night before his work conference, it was especially gruesome. I lay in bed trying to count away my tears, knowing I should be asleep. I had a big test on the counties of New Jersey. I studied all night and even made up a song to remember them. Feeling terrified in bed would absolutely counteract all the work I had done until this point. It was a lot of studying for a fifth-grader. But I couldn’t expel the nightmare.

I stood outside of my parent’s bedroom door. It had only been a few months ago I stood in the same spot with my other debilitating question: what day of the week should I wear my new bra? I worked up the courage then to knock, deciding training bras were best worn on Monday’s, a non-gym day. I could convince myself to knock again.

But tonight, the knock on the door was different. This knock was two years before my first funeral. Before shiva started occurring almost annually. Before I experienced my first heart break. Yet the fear of the unknown was all consuming. I was terrified for my dad to get on his plane. I knocked.

I can’t sleep. Something bad is going to happen.        

There is a brown chest at the foot of my parents’ bed.  It usually holds the afghans my great grandmother knit that still smell like 1900s Russia and pirogies. My mother, responding to my pitiful knock, turned off “Murder She Wrote,” took my small hand and led me to the chest. With labored breathing, I managed to croak out my recurring nightmare: dragon, fire, pirate, ship. Then finally, what if something happens to Daddy’s plane?

Maybe she was used to my emotional outbursts or it was her training as a counselor, but her reply was simple, “If you spend all your time worrying about what may happen tomorrow, you won’t be able to enjoy today.”      

There is a joke in our house that every mother should have a Marmie moment. Louisa May Alcott inspired the “that should be embroidered into a pillowcase” type language that every mother desires; my mother could run circles around Marmie.

I was struck by her honesty. Even at 9. She did not redirect me to return to bed. She did not overindulge my sadness. She did not promise me everything would be OK. It would be the same advice I later found in the pages of “To Kill A Mockingbird”: “It is not time to worry yet, I’ll tell you when to worry.” But on this night, she simply gifted me some of her own resilience. She had lived through unimaginable loss. Both of my parents had. They raised me to fight for the joy.

This brown box turned out to be quite the fortune cookie for my parents. Years of advice followed: If you keep ignoring his calls, it probably means you don’t want to date him anymore. If you use the curling iron on wet hair, you will burn your bangs. If you invest in your 401K plan now, it will double every eight years.

Solid wisdom. Throughout all the adages shared in my childhood home, the dissipation of my dragon nightmare is the only one I can remember. I remember the walk back down the hall. I remember returning to my bed. I closed my eyes and the vision of the dragon immediately appeared, like the bad guy waiting for you in a scary movie. This time it was purple with gigantic snarling teeth. I forced myself to open my eyes and clutched my beloved teddy bear. I spoke aloud, “I don’t need to be afraid of you.” I can make this different. When I closed my eyes, a new image appeared. My father was now riding on top of Puff the Magic Dragon and he was singing. He put his hand out to me and I hopped on the dragon’s back.

That night I dreamed of flying.

There were no flames following us.

And I aced my New Jersey county quiz.

Decades later, I lay my children safely in their beds, I am reminded of that dragon, of that brown box, of that advice. I am no longer preoccupied with the unknown fears, because I am swallowed by the ones I am currently living. Raising a child with a disability can do that to you. My mother’s Marmie advice wanes as I am worried about the future — constantly. Once my weary head finally hits the pillow, it just keeps spinning. Did I get the forms filled out for school tomorrow? Did I remember to write a note in the lunchbox? What day does the garbage go out? Did I forget Speech moved to Wednesday? Did I remember to grade Susan’s project? Was my observation lesson tomorrow? Did I ever send Lauren her birthday gift? Did I brush my teeth? How do we tell the family she is repeating the grade?

I open my eyes, dizzy from the reeling thoughts and see a familiar face. My childhood teddy bear strewn on the floor covered in highlighter and a sock. He has survived decades of sleepless nights, a lice scare, and some rough years in college. Why shouldn’t he get to have another go of it with my own children? His worn face reminds me —  turn the monster into Puff the Magic Dragon.

And I start slowly.

I breathe out the latest doctor’s report and I breathe in the sound of my son’s ABCs.

The nasty woman on the phone. Out. The Halloween parade. In.

Thank you notes I never sent. Out. My niece’s birthday party. In.

And slowly, the anxiety quells.

I wish I could return to the days of memorizing: Morris, Essex, Sussex, to a time when my training bra was the big activity for the week, when I could waddle down the hall in my pajamas and have my parents make it better.

But it is up to me  now. I can remember there will be plenty of worries for tomorrow, but if it’s all I focus on, it doesn’t leave a lot of time to fly through the sky singing MoTown with my Dad.