I can’t tell you how many times I’ve uttered the words, “We’re fine,” in the last three years to family, friends, neighbors, co-workers, you name it. With a son who has major medical needs, a demanding full-time job and another preschool-aged child, I’m often asked (out of kindness and curiosity), “How are you? How do you manage everything?” Almost instantaneously, my answer is, “We’re fine!” or “I’m good!” This has become my standard refrain, all the while, laughing at myself on the inside.
Because the reality is, I don’t think I’ve been “fine” for a long time now. How could I be?
How can I be fine when I have no warning when my child may need “routine” brain surgery (and by the way, ask any parent who’s had a child on the operating table for any reason if the word “routine” does anything to lessen their terror or the images of catastrophic outcomes that flash through their mind)? But I digress.
How can I be fine when my 2-year-old has had four surgeries, countless procedures and scans, and spent more than 10 percent of his young life in a hospital bed?
How can I be fine when there is no predicting when he will be back in one of those hospital beds, with me praying in sync with a ventilator, equal parts terrified and hopeful of what the next day may bring?
But the thing is, as painful as all of this can be, in many ways, I am fine. Despite the fear, the exhaustion, and the never-ending what-ifs when you have a child with special needs, our lives are filled with unimaginable love and laughter; the ability to revel in each beautiful moment that we have been given.
I can’t imagine a family more aware or grateful of the joy that each day can bring. Every milestone is celebrated with uninhibited joy and exuberance. Every time those little arms squeeze my neck, that moment is the only one that matters.
So what do I want you to know?
There is no way I can possibly be fine. And yet, I am.
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