I believe that the secret to happy parenting is in managing your own expectations. Parenting any child can be a struggle, but parenting a child with a neurobiological disorder can feel overwhelming. What is “normal” behavior, what is developmental, what is from her illness? How will she grow into adulthood? Will she be independent? Can she be happy? I began to wonder if I could ever be content with her and her illness. When would these endless questions, well, end?
I realized that I had to let go of my expectations for her, some built when she was in the womb. You see, she was going to go to Harvard or Yale. I had dreams of her becoming a musician or a diplomat. She was precocious; reading early, talking up a storm. Suddenly, her illness emerged and our life became chaotic. Instead of running to dance lessons, we ran to counseling appointments. Instead of play dates, we had seemingly endless doctor appointments. Other parents talked about how “Jenny” was so gifted at ballet, and “Johnny” was a rising soccer star. I longed to join in, prove that my child was gifted too, but I had nothing to say. Her future seemed to diminish before my eyes.
I was understandably unhappy – or was it so understandable? If I could just get all the pieces “right,” she would be happy and have that magical “self esteem” that every parenting book I bought said she needs to become a “normal” adult. If I could only control her illness, then I could be happy too.
Every time I based my happiness on her stability, I set myself up to feel like a failure. When I learned to ride out the ups and downs of her illness, each new set back became easier to accept. When I learned to let go of my expectations, I felt more confident as a parent and a person. Funny, at the same time I was letting go, she was learning how to be comfortable and confident in herself, illness and all.
I’ve grieved her illness and let go of my ego thinking that I can control this. I still worry about her, but much less than I used to. Instead of fretting about events she misses due to her illness, I cheer for the small victory of going to school every day in a week. Instead of feeling badly that other kids are surrounded by a flock of peers, I am grateful for her small core of friends. Instead of trying to clear the path of every obstacle in the way, I try to let her use her own strength and voice. Occasionally, I hear echoes of the old parent in me saying, “I wish she could just…” but I have learned to quiet them quickly.
I am the happy parent of a child with a significant, lifelong illness. I believe that my daughter and I deserve nothing less.
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