The Two Worlds of Special Needs Parents

March always has a way of sneaking up on me. It’s almost as if I move through time from December to March, instantaneously. Suddenly snow is melting, trees look more alive yet still leafless, and temperatures begin to rise! I cannot complain as this all signals the beginning of Spring, and the start of our gardening, homesteading and outdoor lifestyle experiencing a revival, a reprieve from Winter’s grasp.

However, once I realize that it’s March a few days into the month, it occurs to me that it is not just about Spring coming, but it is also Cerebral Palsy Awareness month. Soon after this realization hits me, all those feelings of what it is to be a parent of a child with CP come flooding back to the forefront of my mind. It’s never a neat, and clean type of flooding, with clearly indexed emotions of anger, sadness and anxiety. Rather, it is a muddy, complex and terrifying rush of emotions that threaten to spill over into that specific moment, rendering me motionless as I sift through the emotional wreckage the flood left behind, trying to discern anger from joy, anxiety from trust.

You see, most days it never enters my mind when I look at my son who is smiling, laughing or screaming even, that he is labeled as “different” or “differently-abled” by the most educated and conscientious, and by other terms of those less than considerate. When I look at my son I see a boy whose classmates gather around, captivated, enjoying his in-depth play, or a boy whose laugh is infectious, joy-filled and utterly impossible to resist. I have never said to myself “here is my cerebral palsy son.” This is why March is such a challenging month for me.

It highlights the fact that my family lives in two worlds. We live in the “typically developing world” of a preschooler, with pre-k, playgrounds, playgroups, cartoons, and playing in the snow. We also live in the “special needs world” of IEPs, personal aides, us cautioning for safety frequently or saying no to climbing too high. A world of extra tv at the end of the day for tired legs that never get a break, and less outdoor time in winter due to dangerous conditions for unstable feet. When I compare the two worlds, to me, they are inseparable. I can’t experience the joy of my son playing in the snow, without also experiencing the worry of injury; I can’t fully enjoy playgroups as I know J. sees what the other kids can do, and he is figuring out he can’t do the same.

It’s a fine line of joy and pain. Of labeling and categorizing to better understand but to also limit.

I don’t very often find myself focusing on the “what-could-be’s”, as I find them hindering and often frustrating as they never are helpful to our life as we live it. March, however, has the ability to just put it all out on the table and I find myself staring at those “what-could-be’s” with a certain amount of longing and annoyance.

I write all this because this is my family’s truth, this is our journey in this one life we have been given. We live in two worlds, one with playgroups, school and a myriad of normalcy, and one where there are therapies, body parts, nerve endings, uncertainty, immense frustration and confusion, of labels and limitations set by experts and society at large.

March. It has a funny way of sneaking up on me, and reminding me of this double life.

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