Mask mandates has been tough, but for the special needs community, it’s nothing new. Today guest blogger Stephanie Ballard writes about a different kind of mask mandate she’s decided it’s time for her to end.
“I’m sorry but I don’t feel safe taking care of Braden any longer.” I gasped when I received that text from my sister just about a year ago.
She had been my son’s respite worker for five years. Sleep overs, weekend visits and the occasional run to the emergency room were part of our normal.
Her text sent me into a panic. “How will I be able to do this alone?”Braden has kabuki syndrome, along with half a heart, known as hypoplastic left heart syndrome. His recent diagnosis of autism explains, but doesn’t help improve his chaotic behavior and ongoing rage that seems to come with no cause.
The same week as the text from my sister, Braden’s special needs school called with the message, “We are sorry to inform you the school will be closed again.” The news came without warning.
It’s been a year since my sister’s text and the message from the school. Braeden’s hanging in there. Mask mandates have been hard on him. This past Monday before school, he squawked, “No mask. No mask. I no breathe.”
Later, I cupped the Sponge Bob mask over his face while the bus driver pressed the thermometer up to his forehead. Braden has not gotten used to the morning drill, his new normal.
The yellow bus pulled away and melted into the distance. I sipped my second cup of coffee and pondered about the mask mandate. It reminded me of the mask I, and other parents of kids with special needs, have been wearing for years. This past March was the two year anniversary of removing that kind of mask mandate.
It started out with a text.“Hey honey when you ask me ‘Will you have me just as I am?’ I will always say ‘of course.’”
I texted back to Scott, my boyfriend. “I’m so lucky to have you in my life.”
“Can you repeat that 100 times before I see you today.”
“I will always be an audience of one for you, Stephanie.”
Scott knows what masks look like. His son, died Evan had a lethal heart disease and spent his whole life technically in pediatric hospice and palliative care.
This morning Scott and I talked about the last year of pandemic and the mask mandate.
“If only we could share our stories about new normals and mask mandates and social distancing within the special needs community,” he said.
“Yeah, we’ve been living with those mandates for years. Wouldn’t it be great if we could tell some of those experiences on how to survive and even blossom?”
“Let’s just not wait too long.”
We talked more about our hope in a new normal and future for us. We talked about divorce, death, and sick kids–things we both know so well–knowing that one day Scott will help me with the “death-of-a-child normal.”
I’m not sure how that’ll work out, but I’m willing to go the distance. I’m getting better at navigating new normals instead of saying “I can’t do that any longer” like my sister did.
“Now, let’s just do away with mask mandates when we’re together.” I said.
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Stephanie Ballard is the mother of two sons, her youngest son, Braeden, was born with Kabuki Syndrome and congenital heart defects. Her oldest son, Colin is in the military. She enjoys writing poetry and life lessons about her journey in life.
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