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Miscellaneous Stories, Tidbits, and Real Life From Parents of Children
Who are Extraordinary and Medically Complex

A One Year Memory……..by Lucy Cusick, FOCUS + Fragile Kids.  April 5, 2017

Have you ever wished you could change places with your child?  Wished you could have the surgery, endure the therapy, or take the icky medication??  I think most parents would gladly make the trade.

I recently took a flying leap out of my attic – didn’t mean to…..I meant to take the steps…..but I missed and fell 8 feet to the floor. Josh (my son with cerebral palsy) was home and heard the very loud (and unrepeatable) screams. He fetched my cell phone and comforted the traumatized dog while I called my neighbors and cried on the floor.

After a trip to the emergency room where I acquired a cast, a pair of crutches, and a prescription for Percocet, I clunked home to figure out how to manage ten weeks of life on one leg with no driving privileges.  And for all the times I wished that I could take Josh’s place……I suddenly realized that instead of taking his place (like in Freaky Friday), I was instead temporarily thrust into Josh’s life, living how he lives every single day. Every. Single. Day.

I used crutches for 3 long, miserable days before finding a rolling knee walker (best invention since the beach wheelchair). In the rolling knee walker, I can only use one hand (like Josh) since I have to steer with the other (like Josh in his power chair).  Things are out of reach, stairs get in the way, small bumps in the floor are Mt. Everest to a wheel, doors are a real pain, and showering is an ordeal.

Luckily, life with Josh has taught me to think outside the box and to be creative.  All that I have learned as Josh’s mom, I have used several times – when caring for my mom, when helping a friend in the hospital, when breaking my own bones!!  When a friend dropped by and asked, “Can I do anything?” I had an immediate answer – PLEASE move the Diet Cokes to the front of the frig, take the basket of clean clothes to my bedroom (no hands when you have crutches!), roll the trashcan to the curb.  When a neighbor called and asked, “Going to Kroger, need anything?”  YES!  Tylenol and dog food.  And when one sweet friend realized the cat litterbox was downstairs, she bravely just came and took care of that without asking.  And I let her.

One small difference between my situation and Josh’s, however……..I’m down for 10 weeks.  Josh is in it every day. And he’s done it forever.  And will do it forever.  He rarely complains.  He’s had multiple surgeries, numerous painful treatments, thousands of therapy sessions, and he still smiles and finds the bright side.  So.  Would I change places with Josh?  You betcha.  And, if I could, I sure hope his attitude comes along, too.