Sometimes I feel like an impostor. My son is still here, alive and thriving, and yet there are moments, days, weeks, where the grief grips me. It can start with a simple glance at Buster, happily running in our back yard, but stumbling a few too many times for a "typical" child his age. Or an Instagram post about a child I don't even know, who doesn't have any friends to attend her birthday party. You know the ones? When the local fire department arranges an impromptu parade in her honor so she is not left feeling lonely and unloved on her big day. They kill me. How can the world be so cruel? How is it possible this child doesn't have any kind-hearted peers to spend a few hours with her on her birthday? And then it all hits me. The weight of grief, so heavy, and I feel hopeless about it all. And then the impostor syndrome creeps in: Who am I, to be sad? Buster has survived his strokes. His brain surgery was a raging success. He has no learning challenges, and in fact, his IQ is in the 94th percentile! He is happy, smart, funny, driven, and passionate. Who am I to feel that life is unfair?
I remember when Buster's medical journey had just begun and the neurologist in the ICU mentioned the words "cerebral palsy" to me. I felt crushed. The only image that swirled in my head was of a child in a wheelchair; I didn't know the varying degrees of the movement disorder, and my mind sprinted to the extreme. I stood there, stunned, until the resident informed me that "cerebral palsy" was just an umbrella term and that each child is different in how their body is affected. There are so many factors that contribute to how it presents in children and we wouldn't know how Buster would be affected until he approached his milestones. We had to wait. And the unknown eats at me, still.
Over the years I learned that Buster has so much in common with other CP kiddos, but also has so much that is different. I want to bond with other CP and rare disease moms but sometimes I think that I do not belong. Buster has mild CP, which means he can do what other "typical" kids can do, but it usually takes him longer to learn things like swimming, jumping on a trampoline, walking on a balance beam, using the monkey bars. Do other parents feel that I don't belong, because Buster isn't "CP" enough? I don't know. I can't answer that. But what I do know is that the grief for what I imagined his childhood would be like is absolutely real. When he wants to play alone, I wonder if it's because the other children have excluded him. If he didn't have CP, would he have more friends? When he says he wants to play baseball during the summer, I clam up and my mind races to the fact that he will have trouble catching the ball in his gloved, left (affected) hand. When his PE grade comes in and he receives a "Satisfactory" I imagine he's the only first grader not to receive an "Excellent." When he cries about having to wear a brace, and that he's the last to be ready for recess because he's trying to strap it on properly, my heart breaks for what could have been for him.
I don't have a conclusion, because life is still chugging along. I do not know what tomorrow will be like. I can be very naive about Buster's challenges and what they all truly mean for him, and for us. And maybe that is how I am meant to be--in the limbo that heavily weighs on me, but also allows for hope.
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