My Daughter Has Adapted to My Husband Working From Home

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by Jackie Babiarz |

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The COVID-19 pandemic has changed many family dynamics. Those who used to travel or work in an office have been working from home for the past 20 months, which means couples have spent more time together lately than ever before.

My family is no exception, as my husband, Bill, has been working from home since the pandemic started. His ability to help out in the mornings and evenings has been a gift to our special needs family, since our 12-year-old daughter, Cammy, who has Rett syndrome, is nonverbal, uses a wheelchair, and relies on us for 24/7 care. But it wasn’t until recently that we noticed how much Cammy has gotten used to Bill’s new role in her routine.

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Our pre-pandemic routine

Prior to the pandemic, Bill left the house at 6 a.m. every morning to catch a train for work. I would change Cammy, carry her downstairs, put on her thoracic lumbar sacral orthosis (TLSO) and ankle-foot orthoses (AFOs), place her back in her wheelchair, get all her outerwear on, and wait for the bus. After school, I’d do the reverse.

Bill wouldn’t get home until after 6 p.m., so I would feed Cammy dinner. Before she began using a feeding tube three years ago, it took an hour to feed her orally. After dinner, I’d give Cammy a bath. It always felt dangerous for me to lift her slippery weight out of the tub.

All of this took an immense toll on me mentally, physically, and emotionally.

Tackling the routine with teamwork

Now that my husband works from home, he and I split Cammy’s routine 50-50. He starts her tube feed at 5 a.m. and lies back down. When the feed is over, I flush it out, then change Cammy. Bill brings Cammy downstairs, puts her TLSO on, gets her in her wheelchair, then puts her AFOs on.

I realized how accustomed Cammy has become to her dad performing these tasks when I tried to put on her shoes recently and she rolled her eyes at me!

Next, Cammy does her nebulizer while I get her feeding tube bag, Tobii Dynavox eye-gaze device bag, and backpack loaded. Then, I brush her teeth, fix her hair, and put her jacket on.

Cammy hears her dad yell from the office, “The bus is here!” We smile as we head to the door, which he holds open. He says, “Have a good day, pally,” then kisses her goodbye.

working from home | Rett Syndrome News | Bill puts his daughter's ankle-foot orthoses on before she leaves for school.

Bill puts Cammy’s AFOs on before the bus arrives to take her to school. (Photo by Jacqueline Babiarz)

When the bus pulls up after school, I help Cammy to the front door. Bill holds it open, smiles at Cammy, and says, “Hi, pal. How was your day?”

Shortly after Cammy settles in, Bill’s workday is over. He has time to go for a walk with Cammy, play basketball with our other daughter, and help with Cammy’s evening routine.

The pandemic may have forced togetherness on some families, but we have welcomed it with open arms.

Read more about Cammy’s story at our blog, “Cammy Can Reverse Rett.”

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Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Rett syndrome.

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