By Jen Reese
N-O-R-M-A-L
I hate that term to its core but today I’m using it to describe our return to a more regular life post COVID.
My 13-year-old daughter Cailyn has pretty much been homebound since the pandemic started. Her last day of school in person was March 12, 2020. She skipped baseball and summer camp last year. She’s had little contact with the outside world. She spent all of seventh grade distance learning.
Cailyn has a rare genetic diagnosis with a seizure disorder and severe physical and mental developmental disabilities. She is particularly susceptible to illness with respiratory infections. COVID was our worst nightmare. Christmas 2019, just a few months before COVID officially hit the United States, she spent five days in the ICU for pneumonia. In the past seven months, at least seven kids with her diagnosis have passed away and half were from COVID/pneumonia.
The day after the CDC approved the vaccine for her age group, Cailyn got her shot. Even with that protection, I am beyond anxious that she’ll get sick. Still, this month we returned to “NORMAL.”
Last week she went back to summer camp which is run by our local parks and recreation department. It is always awesome. She has fun every year. Their programs are fantastic. Where else could my daughter—who is nonverbal and uses a wheelchair—participate in a “Color Run?”
She is able to fully participate and have fun with her peers. She gets to go to camp and do all the things kids her age should be doing in the summer. I cried the first time I saw her in the talent show. It’s part of family day at camp and we are able to engage with other families like ours. I never thought something like this would be in the cards for my girl.
I know she is safe and she’ll be taken care of. The staff is taking precautions with distancing and masks. They are experienced, well-trained, and treat my kid great. People often ignore or disregard Cailyn because she can’t respond to them. This is never an issue at camp.
Camp is also a respite for me.
She’s been my officemate all through COVID. I’m lucky to telework regardless of the pandemic, but it’s different having her here all day. She’s quiet and reserved and doesn’t demand attention but she needs total care between feeding, transferring, and diapering. Often times I felt guilty when I was trying to feed her and listen in on a conference call. She’s a teenager and must have been bored out of her mind sitting in on some of the grownup meetings Mommy has to attend for work.
I set my fears aside for her to get back to normal and get a little bit of normal for me too.
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Our experience closely mirrors yours – our daughter spent the month of February 2020 in the ICU with RSV, and we were barely home and still catching our breath when the COVID shutdown began. She turned 18 at the end of March, so we had to navigate the move to adult healthcare in the midst of a pandemic. Our medically complex daughter, along with her two younger siblings, spent more than an entire school year learning virtually (even though our school went back to in-person last September). I struggled with some pretty significant health issues through most of last summer. And, then I lost my job in October. YIKES – sometimes I wonder how I’m still standing after all of the blows that 2020 delivered. But, I’m still standing and even better, I’m still smiling.
Unless you’ve walked in our shoes, it’s almost impossible to truly understand the extra burden that COVID and the many, many months of ‘abnormal’ put on families who have a medically vulnerable child. I feel like there were many, many days when my shoulders ached with the weight of it all. I’m just so grateful that all of my kids are old enough to get the vaccine so that we can begin to return to life beyond the four walls of our home. I sure have learned to be grateful for many things I took for granted in the past! A big hurray for ‘normal’ and a huge shout of joy for ‘medically boring’!