I just finished putting together my One-Second-a-Day video for this crazy year. And by year, I’m stretching it from the first day of 2020 to March 11, 2021, exactly one year after the World Health Organization declared COVID-19 a worldwide pandemic.
By all accounts, The Boll Family has had an amazing year. I’ll list the highlights:
- New Years in Bangkok
- Multiple beach trips
- Hanging with friends
- Gorgeous Sunsets
- Madi’s graduation from USC
- Beautiful hikes
- New cat- Kiki
- Guitars and singing
- Lori’s cool new job
- Rediscovering our love for snow skiing
- Learning to cross country
- The purchase of a new house in Bend
- New car
- Braden moved to a new home
- We got vaccinated
- Madi got a job
- Living life as empty nesters
And you know what, it has been an amazing year. Really, who could complain when they’re surrounded by the beauty of this planet. We are truly lucky to have lived in Thailand, and when we had to come home to the U.S., well, in my opinion, we landed in a pretty incredible spot. So yes, this video sums up our year quite well.
But does it really?
What you don’t see in our one-second-a-day video is everything else we experienced this year. So have we also been living in a parallel universe, what we call The Bolliverse (Spiderman fans will understand)? Or could it be that life isn’t always as it appears on social media?
On March 5th of 2020, we sat in a school-wide meeting as it was announced that we were shutting down due to possible exposure to COVID-19. The shut-down was only expected for a few weeks, but soon the Thailand government made it official; we were to be closed for the rest of the school year.
This started the domino chain of events that drastically changed our lives. As previously mentioned, Braden did not handle the change in routine well. He was terribly unhappy, and this sadness came out in a series of destructive behaviors and aggression.
Our days became so incredibly difficult that Mike put up a 30-day tally list. He kept saying, “We just have to make it through the next 30 days.” Somehow, in some way, we made it to each goal post, one day at a time. But barely. Just barely.
And we are not alone. Well before the pandemic, results of a study on mothers of children with severe autism experienced chronic stress similar to that of combat soldiers.
“Researchers followed a group of moms of adolescents and adults with autism for eight days in a row. Moms were interviewed at the end of each day about their experiences and on four of the days, researchers measured the moms’ hormone levels to assess their stress.
They found that a hormone associated with stress was extremely low, consistent with people experiencing chronic stress such as soldiers in combat, the researchers report in one of two studies published in the Journal of Autism and Developmental Disorders.” –Disability Scoop article
Now it’s even worse. Our kids need structure and routine, and all of that disappeared in the blink of an eye, and families are struggling.
In an article entitled Pandemic Pushes Parents of Kids With Special Needs To Breaking Point, one can read many examples of the stresses parents are experiencing. Here is a sample:
“There’s the mother who started experiencing face paralysis because she was so overwhelmed caring for her child with autism, without the support of school or aftercare. The parent who had to stop his child with developmental disabilities from trying to jump out of a window when he saw his teacher on the computer and couldn’t make sense of it. The families that have had neighbors call the police because their children act out in frustration about not being able to go outside. Many parents live in fear of having to take their children who are medically fragile to the hospital and risk COVID-19 exposure. Some are also dealing with job loss, food insecurity, and financial strain, she said.”
The struggle is real.
Don’t get me wrong. I do know that this pandemic has wreaked havoc on so many people, whether they have special needs in their family or not. Our front-line workers, doctors, nurses, people who have lost their jobs, women who have had to quit their jobs so they can manage their children at home, business owners who have gone bankrupt, teachers who have had to learn a whole new way of teaching while managing their own children at home, and death upon death upon death from this devastating virus. I mean, really, the list is long and heartbreaking. So in no way am I saying that our lives are harder than most.
My goal for this blog post is to raise awareness of the fact that many families are struggling in secret, and life is not always as it appears to be on social media.
Here is life in The Bolliverse that was not celebrated in our one-second-a-day video or on Facebook this year (some of these do not directly relate to Braden’s autism, but still made for a stink-tastic year).
- School closed
- All our food thrown out of refrigerator and freezer
- Endless nights of agitation, pacing, throwing furniture
- No sleep
- Lori locked in bedroom for safety
- Inability to effectively teach own students as constantly living in fight or flight mode
- The decision to go to Sunriver for “the summer.”
- Told we could not return to Thailand due to quarantine restrictions.
- Didn’t get to say goodbye to our Thailand friends- no closure.
- Aggressive acts resulting in hair loss, black eye, and some blood
- Mike’s mother passed away
- Encounter with the police- too raw to speak about
- Living with little to no furniture as it all had to be removed; otherwise, it would be destroyed
- Locking all cupboards so we would not lose all food, dishes, and other items.
- Holes in walls
- Meetings with doctors
- Meetings with the county
- Meetings, meetings, and more meetings
- More broken toilets
- More and more anger
- More and more aggression
- Biting, Punching, Hair pulling
- New house asking us to take Braden home for a few days after aggressive acts
- The horrific loss of my nephew and the continual injustice surrounding it
- Little to no sleep
- And tears
- Many tears
Raising a child with severe needs is extremely difficult, but this pandemic was like a punch to the face. There are many days when I wonder how we actually did it. There were days that I didn’t think we’d make it to that 30-day goal of Mike’s. But, we made it.
We made it.
However, no matter if I reflect on our one-second-a-day life or our life in The Bolliverse, I’m thankful for this year for many reasons:
- Our school was very supportive of our family, and we will eternally be grateful for this.
- I have a job that I can do remotely, and bonus: I love it!
- We found a place for Braden to call home.
- We are learning about our community and ways we can help make it more inclusive for our adult children with severe needs.
- Mike and I are learning to experience life in a different way.
- We are in a beautiful part of the world.
- Our daughter is happy, healthy, and employed during a global pandemic.
- But most importantly, we know that we are supported by our family and friends from all corners of the earth, who are with us in the good times and when we enter The Bolliverse.
We love you all. And please feel free to share about your own ” ____ iverse” in the comments.