Due to the Coronavirus, many have been social distancing for weeks now. We are staying home for healthcare workers, the elderly, people with weak immune systems, and so many more. When I get sad about not seeing my friends or when I’m bored at home, I simply think of my own family, three years ago. Because of Sanfilippo Syndrome, a complication with an illness could have killed my sister. Without a personal connection to a story like this, it may be hard to convince yourselves to stay at home. So, over the next several weeks, as long as we’re being encouraged to stay home, I’ll be sharing the stories of Sanfilippo families like mine. I hope these stories help to emphasize the importance of social distancing.
Meet The Byers:
Will is nine years old, and he is known for his WILL Power. His super sister, Sam, is just as courageous and cute. I got to meet this family and play with Will and Sam in December. Here’s why you should stay home for the Byers:
How have your lives changed since the virus got more serious in the US?
Because Will is in the high-risk category, we went into isolation early on to protect him. We were on Spring Break at the time, but then school was officially canceled through at least the beginning of April. Dad was able to start working from home at the same time, so now we are all at home together all day.
What has your family been doing to stay busy and entertained?
We’ve had to set up a new routine for our sanity. We are keeping busy with the kids’ school work, Will’s therapies, bike rides, walking the dogs, and video chatting with friends and family while Dad tries to do his work, and Mom works on her non-profit work. Also, even though we cooked a lot before, we are cooking even more now that all four of us are home every day for every meal!
Will stacking up blocks with his dad.
“We’ve been wanting to hike the trails at Cypress Creek for awhile… today was the day! Enjoyed 3 miles of exercise and nature!” – @willpowermps on Instagram
How is the quarantine different for Sanfilippo families than regular families?
Because we have medically complex members of our family, we understand how important it is to be careful and do our best not to be exposed to the virus or risk exposing others to it. However, self-isolating is very difficult for our family. Children with Sanfilippo have A LOT of energy, and Will is no exception. He also has no safety instinct and must be supervised at all times for his safety. We have to find ways to allow him to safely burn off energy in our home while still giving attention to his younger sister and still doing work and keeping the house running. Our days require a lot of planning and scheduling. It’s also very taxing for caregivers to go 24/7 without the break that school or babysitters provide. Further, we are not trained special needs teachers, speech therapists, occupational therapists, or physical therapists. We are doing the best we can with the resources our teachers and therapists have provided us but we worry about maintaining Will’s skills without the team of amazing professionals that work directly with him daily.
What’s the biggest challenge that you’ve faced while in quarantine?
It’s hard to satisfy everyone’s needs. The kids both need very specific types of attention and support. Will needs constant supervision to be safe and stimulating social interaction to be happy. Little Sister needs directives for her school work and a lot of reassurance as she is trying to adapt to a situation that makes her unsure. She misses her school, her friends, and her routine but also is concerned about keeping her brother safe and healthy. The adults struggle to find time and space for themselves as working individuals, for themselves as individuals, and for themselves as a couple. We are also trying to keep up social connections outside of the family in a virtual space.
Will and Sam working on school from home.
What do you find to be calming during this time?
The adults are trying to get up early before the kids are awake for some quiet concentration time. Will enjoys looking at books, and Little Sister has been excited to watch videos of a friend’s newborn kittens. All of us enjoy being outside for walks, runs, bike riding, and play.
Do you feel like you’ve bonded more as a family during this time? Is there anything else positive that has come out of this?
Yes, it has allowed us to get to know each other better (for better or worse!) and spend some quality time each day. One of the positive outcomes is that we understand what “social” activities are actually important to us (the things we really miss) versus the things we were doing just because we thought we should (we may not miss those obligations quite as much!). It’s also reminded us how we have to work as a team in order for us all to thrive.
What do you have to say to people reading this blog, considering the importance of staying home?
Please consider the most vulnerable in society and how you may be increasing their risk factor if you don’t take this seriously. Think about how you would explain your social distancing (or lack thereof) to an elderly or immuno-compromised friend or relative. It may be easy to downplay the importance of social distancing since a lot of people have mild (or no symptoms), and there aren’t the high death rates (yet) of previous pandemics, but we should take this seriously, because the next pandemic may not be this mild. If this is a test run for the next pandemic, we probably have a lot to learn.
How has your super sib been dealing with this situation?
Because Little Sister is just six years old, she doesn’t fully understand “the virus” as she calls it. But she fully comprehends that we should take it seriously, so people who may be at risk (like her Bubby) have a better chance to not get sick. She misses all her friends at school but is doing admirably well. Thankfully, she seems to like us and accepts us as suitable playmate substitutes!
Questions for the Super Sib – Sam
How do you explain to your friends the importance of staying home?
We stay home to protect our family, especially Will.
Do you have any extra responsibilities now?
Doing all my learning at home by myself is harder than with my friends at school. I help walk the dogs and clean up the house at night.
“We caught Nurse Sister, coming off a long pretend hospital shift!” – @willpowermps on Instagram
What has been the hardest part for you in quarantine?
I miss my friends and seeing the rest of my family, like my grandparents.