By Laura Spiegel
A piercing shriek shatters the silence, followed by the sound of laughter ringing. A child is basking in the last threads of daylight, bare feet and muddy, his smile as big as the sky.
As I wave from afar, I am flooded by the strongest sense of sadness. It cuts through me like a knife, sharp and unexpected.
I thought I was fine. But I’m not. I am mourning what could have been.
Marco Polo at the pool. Cookouts and flashlight tag. Bomb Pops and sleepovers. A parade of neighbourhood kids pounding through my house, day and night. These are the sights and sounds that infuse my family’s summer with life. But this year, many of them will go silent.
My daughter has cystic fibrosis, and if our family’s journey over the last six years has taught us anything, it’s that health can be fickle. And that few things are more important than protecting it.
I have a feeling that we’ll be sitting much of this summer out. And in this moment on this warm night, I feel really, really sad.
Most days, I try to keep my mind on the right side of frantic. I know my triggers and do my best to search for the silver lining even in the shittiest of days. But you know what? It’s okay to feel disappointed. It’s okay to feel powerless. It’s okay to mourn what could have been.
We parents of children with special medical, developmental, or behavioural health care needs know this well, don’t we?
Some of us mourn for our baby’s “firsts.” First words, first steps, first potties.
Some of us mourn for traditional schooling experiences. Bus rides, play dates, soccer teams.
Some of us mourn for typical sibling relationships. Swift kicks, whispers, secrets.
Some of us mourn for our child’s dependence. Dates, college, careers.
If you’re like me, what you mourn evolves year after year, experience after experience, memory after memory.
But you know what? It’s okay to mourn what could have been.
Sometimes our emotions demand that we sit with them and really feel them. They insist that we name them and acknowledge their significance, their importance, their validity.
Sometimes our emotions linger over time, whispering in our ears until we come back to them. Each time we do, the power of those feelings – the starkness of them – may lessen a bit. Until they no longer feel so raw. So consuming.
Sometimes our feelings of mourning never disappear. They become a part of us, but they no longer cloud our ability to celebrate ourselves and our families for who we are and who we can be.
It is morning now, and I sit on my front porch and feel the wind on my face. I listen to the birds echoing through the trees. I watch the clouds roll by and wonder if it will be warm enough for a bike ride. If we should roast some smores tonight.
We will make our own memories this summer. We will sing, we will dance, we will laugh, we will celebrate. We will do our best. And we will do it together.
Isn’t that all we can ever do?
For 12 years, Laura Spiegel partnered with physicians and psychologists to help people with chronic illness lead happy and healthy lives. Her professional and personal worlds collided in 2013 when her own daughter was diagnosed with cystic fibrosis. Laura founded Paint Her in Color after realising that emotional support for parents like her was hard to find. Visit http://www.paintherincolor/ to find out more and read more of Laura’s writing.