Each month that I put fingers to keyboard for my post, my brain is swamped with metaphors about my life with Sylvie. Earlier this month, as I was planting seeds, I was nervous that if I planted something for Sylvie and it died, that somehow that would be an omen of her own fate. The feeling gnawed at me as I planted some oak seedlings their grandfather had sent them and Sylvie’s seedling died almost as soon as I transplanted it. Later, the little pots of marigolds from preschool that was my mother’s day gift swept off the porch in one of the spring gusts. The seedlings quickly withering in the hot sun. I’m not typically a suspicious person, but …….
We had a medical incident that still has me reeling. I swear death was knocking on my family’s door, rapping on our windows, begging to come in. I know my partner would probably disagree, but I really thought Sylvie was going to die two weeks ago. Memorial Day weekend we took Sylvie into the Emergency Room due to labored breathing. It was a calculated visit (in that we called the otolaryngologists the night before), justified by her strained and loud nasal snorts and inability to fully swallow. Her condition seemed to worsen over the next few days, only to be capped with a necessary and candid but nevertheless difficult conversation with our pediatrician about palliative care. Allergies, enlarged adenoids, low muscle tone, and maybe a croup-like virus to just plug up the works. Yucky and scary!
And then we added steroids, Sylvie bounced back—almost immediately she regained her color and started smiling and giggling again. Only 24 hours prior I was convinced we are at the end of my daughter’s life, and the next day I was giddy and jubilant that she was going to be around a little longer! And we go back to our “normal” life with a few more medications. I felt like a serious manic-depressive, with radical mood swings. Is this a normal response to have when you watch your child struggle? Maybe Sylvie isn’t a wilting pansy after all. Maybe she more like a quiet perennial. Or maybe I just need to keep planting, weeding, tending and praying that something good is going to grow out of this soil.
When Kirsten isn’t digging in the dirt or fretting over inflamed nasal passages, she works as a professor of Communication Studies at the State University of New York and is the mother of 5-year old twin girls.
You're not "wrong" or abnormal at all. It's a roller coaster, for sure. You're a realistic, but still hopeful, parent. :)
I understand completely! Just two weeks ago, I held my child in the spa - she wanted to go in - as she struggled to breathe, and her eyes kept rolling back, and wondered, while trying to hold back my tears, if she would still be alive when I lifted her out of the water! I am convinced that she does it periodically to keep me on my toes!!! A roller coaster describes it completely - and I never know if it will be an UP day or a DOWN day. Very tiring! I can go from enjoying her company, to mentally planning my phone calls to advise of her death, in minutes. Thinking of you.ReplyDelete
I think it's as normal as anything else when one parents a child with special needs. I do the "suspicious" thing all the time, and my daughter is sixteen years old. While I wouldn't say my life is ruled by morbidity and pessimism, a day doesn't go by that I don't wonder whether my daughter will live through the night. It's a strange way to live, to be, but I don't think it's uncommon or crazy.ReplyDelete