“I am your mother, the first mile of your road.”
– Kelly Corrigan
I run a marathon every week.
Actually, my life is an ongoing marathon.
And so is yours, especially if you have a child with a disability, or any type of ongoing medical or special need. As a parent of a child with Prader-Willi syndrome, I put in miles upon miles as I expend so much of my physical, emotional, and mental energy weekly, sometimes daily. The tenacious spirit, perseverance, and endurance that is required to train for and run a 26.2 mile-marathon is what is required of you and me.
I crossed the “starting line” of my marathon when I first “knew something was wrong” with my infant baby Ryan. Although your marathon and mine doesn’t quite have a finish line, we do have mile markers. Our children have mile markers and so do we, and sometimes the difference between the two are completely blurred.
Some of Ryan’s past mile markers were when his G-tube was removed at age 11 months, and I could give him a bottle only. No more carrying around the IV pole, tubes, and syringes, along with formula and bottled water. His lips, tongue, mouth and jaw were finally strong enough to take in the milk and baby food his low-tone body needed. Another famous mile marker was Christmas Eve, 2005, when Ryan, at age 2 ½, was able to stand up, take Chris’ and my hands, and walk from the family room to the dining room. 5 seconds of pure bliss. The crowd (my family) hooted and hollered from the sidelines with tears falling out of their eyes.
Since then there have been other mile markers like Ryan recognizing his printed name, and subsequently learning to write his name. Despite how terribly he grasps a pencil, we celebrate he can write his name. Finally. And someday he will be able to actually read and fully understand the books he obsessively looks through for hours at a time.
As Ryan accomplishes his mile markers, they feel like my own. Because I was the one who was watching and waiting, teaching and coaching, hoping and praying, that with each baby step of progress, he would reach his finish line. One of a thousand finish lines yet to be crossed.
As a mother of a child with PWS, I have my own personal mile markers: 1) Getting through a day without losing my patience over Ryan’s incessant questions; 2) Establishing a strong behavior program at school; 3) Resolving marital issues to maintain a close, unified relationship with Chris, despite our stress levels; 4) A proud moment when I’ve chosen to remain quiet and composed when I want to scream at Ryan (or any of my kids…). And for me, I too, have many finish lines yet to be crossed.
Runners feel like they are in a special universal club of runners. When we pass each other on the street during a run, we nod our heads, make eye contact, smile, say hello, wave, or any other friendly gesture. “We know in our know-ers” how incredible it feels to run, to hit the pavement, to sweat and hurt, and to accomplish mile after mile.
Well, parents of children with special needs are also in a universal club. Together. We know the heartache and the blessing. We know the triumphs and challenges. We know the hurt, sore muscles, and black toenails of our ongoing marathons. When I pass another parent with a disabled child, I always try to make eye contact and smile. They have their unique marathon and I have mine.