How to Cope with the Train Wreck of New Diagnosis
As I lay in the darkness, my fingers poised on the keys of my laptop, tears run down my cheeks as I listen to the sound of my son’s feeding pump a few feet away–a constant reminder that my normal isn’t really normal at all.
In a recent trip to Helen DeVos Children’s Hospital, I sat in a chair watching Rhyse play in the Family Library. I couldn’t help but stare at the mayhem the Thomas the Train track set had become since our last visit a few days prior. It is our custom to arrive at the hospital a half hour early, make a mad dash to the Meheny Terrace Bistro for a cup of decaf coffee with vanilla syrup and cream, and then to the Family Library for play time.
At our last visit to the Family Library, the train table was all set up and a boy the same age as Rhyse was already racing a train around the tracks. As the two boys jockeyed for position around the various structures they quickly figured out a sharing system that allowed them both to play with the only remaining train of the set, Mr. Percy.
But this day was different. With a scattered, broken up mess, Rhyse had no idea how to play. He walked around and around the table trying to find two connected train pieces, but found none. The tracks, the crane, the bridge, the mail station, the stop signs and the tunnels were all in a heap. Unable to find order among the chaos Rhyse gave up and walked away.
The whole scene–the mess, the brokenness, the hopelessness–created quite the picture of our early days with Rhyse.
In the beginning, every word, every diagnosis, every specialty represented was a maze of emotions. Our lives–the lives of all who have medically complex children–lose order, beginnings and endings. Dates become significant not based on celebrations, but trauma and tragedy. Seasons are earmarked good, better or best based on the number of hospitalizations, surgeries or complications from illnesses. And fighting for balance a losing battle.
As time goes by we are changed, our kids are changed, and we hope others along the way are changed. Piece by piece, moment by moment we find interlocking tracks to put together and are able to move forward– we learn to cope among the chaos.
I am an introvert, I need alone time. I cannot fight the mental and emotional battles that come with parenting a medically complex child when I haven’t taken the time to just be, to think, to plan, to wonder, to dream, to grieve, to talk to my creator, to mentally put myself back together. For most of my life, I felt guilty for needing some bits of alone time, every day. But the journey of parenting a child with a crazy amount of medical issues has taught me it’s OK to shut the bedroom door, turn out the lights and relish the darkness for an hour, once in awhile. My kids think I’m a nut for needing alone time—they hate being alone. However, when Dad says, “Mom’s in her room leave her alone”, they comply. Somewhere in their little brains, they have learned it’s probably a good thing for everybody that mom gets her quiet times!
The hard part for me is that the track will never be finished, the pieces never put perfectly in order. At the end of the day, he’s still Rhyse, medically fragile, and ear-marked with Noonans Syndrome. The new diagnoses have yet to slow down, and some days the brokenness and hopelessness threaten my emotions. The good news is we do have some tracks laid down, a definite direction, and much, much joy along the journey. Even when that wretched crane picks us up and puts us somewhere we don’t want to be, still we move forward!
Heather Cole is wife to Jon and mother to Leah (13), Maggey (10) and Rhyse (4). Although she’s had a passion for writing since she was old enough to hold a pencil, she was over forty before she decided she had anything worth writing about! And that part is still a struggle! She graduated from GVSU with a Major in English, but quickly realized it was a mistake. That Major didn’t help pay the bills, ever, so she worked various jobs until having children. And now as a stay at home mom, she relishes the time she has to play with words. She blogs for her own sense of joy, and even finds writing cathartic as she travels through this life journey! She will always love words. Just today she received her custom vinyl phrase for her main room wall, in the mail. Words on the walls make her smile!
You can find her blog at http://medicallycomplexfamilies.blogspot.com/