Remembering 2020
It is hard to believe that it’s been four years since masks became a common accessory and the words pandemic and quarantine entered our daily vocabulary. Those mid-March days were a delineating event, etched in our memory not unlike where we were on 9/11. Even if our world now more closely resembles our maskless and activity-packed lives of before I hope the lessons of those uncertain days are not forgotten. So, this week I’m resharing a post I wrote on March 27, 2020, to remind us.
For this reposting, I have edited and replaced the term “special needs” with “disabled” and/or “medically/complex” now that I am better informed. I also made a few other edits because I’m a better writer now. With that, please enjoy your trip back to March 2020.
“Welcome to our Holland”
In speaking with friends and watching online as folks grapple with social-distancing and sheltering-in-place it feels like, as a country, we are starting to find a groove. Developing routines, schedules, and new normals. New normals. I used this phrase all the time when speaking about Adelaide. At first the new normal was therapy and seizures, then it became frequent hospital stays and copious amounts of medication, home nursing, medical equipment, hospice. The list goes on and on, every season, month, week, our normal would drastically change and we would adjust.
Once again, we find ourselves adjusting to another new normal, but this time the rest of the world is finding their footing along with us.
Our family should be pros at this by now, right? But lifestyle changes are always jarring. So, I’ve learned to give myself some grace while the transitions are occurring. I think we could all use a healthy dose of self-grace right about now.
The other night, I was lying in bed unable to sleep. My brain was racing in typical anxiety fashion. Mind you, Miguel was snoring peacefully next to me having crashed moments after his head hit the pillow. Between pangs of resentment and jealousy, my thoughts found their way to the memory of a short essay that nearly every parent of a disabled or medically complex child receives upon finding out that their child will not be living the life that had been envisioned for them. It’s called “Welcome to Holland” by Emily Perl Kingsley.
It is beautiful and I invite everyone to give it a read. It compares a trip abroad gone awry to parenting a special needs child. You prepare for a trip to Italy, reading all the books and guides but get off the plane and instead you are in Holland. Not what you prepared for, but it can still be beautiful if you let your child be your guide.
Many find strength in its words. However, the first time I read it, I was overcome with anger. My plane didn’t land in Holland, instead I felt like I had been pushed out somewhere over Siberia without a parachute. With no diagnosis for Adelaide, no prognosis, and a growing list of symptoms, I couldn’t see a clear path through the snowstorm in front of me. And there wasn’t a tulip in sight. After a recent reread though, I was able to see the beauty, comfort, and truth in Ms. Kingsley’s words.
Right now, so many folks around the world are experiencing these very feelings of disappointment. They thought they would be going on spring break, enjoying a second semester at college, closing that big deal, or just going about life as usual. Then they woke up one morning and the world they knew had suddenly changed.
They went to bed at home and woke up in Holland.
Society is grieving their previous lives and each eagerly anticipated event that is now getting crossed off the calendar. Yes, it hurts. Yes, you have every right to be upset. But there can still be beauty in this new normal if we are open to seeing it. Perhaps it’s additional time with our family, catching up on the sleep we’ve so desperately yearned for, or just slowing down for a moment. I’m not going to downplay the stress here, financial, health, and others. All of that is very real and it was real when I stepped off the plane in Holland with Adelaide too. It’s certainly not all tulips and windmills.
We have no idea how long this will last but eventually, our world will be able to find its way back to the normal we once knew. It might be slightly altered from before, but it will be far more familiar than what we know now. This is where “Holland” stops working as an allegory for our current crisis. While we will find our way back as a society, medically complex families never will. They forever live in a new, and ever-evolving, normal.
A friend with a rare, immune-compromising condition wrote to me saying that she hoped that when the world returned to their “normal” they would take with them a dose of perspective. Perhaps an additional appreciation for their health and how their actions affect the health of those around them. Or that life goes on even when sports, meetings, events, and trips are postponed or canceled. And at the end of the day, when lives are at stake, none of that stuff matters anyway. This is the reality that medically complex and disabled families live every day. Maybe, just maybe this can be the souvenir that the rest of the world can take back with them when their time in Holland is over.
Photo ID: Miguel, Kelly, Jackson (age 7), and Tabasco stand outside on a tree-lined sidewalk in early Spring. Miguel is wearing a long-sleeved red shirt and black athletic shorts, Kelly is wearing jeans and a grey t-shirt that says “inclusive as a mother” in black letters, Jackson is wearing a green graphic t-shirt and black athletic pants with a navy and orange striped fleece tied around his waist. They have their arms casually around each other and are wearing blue disposable masks. Tabasco is a small, white curly-haired dog standing next to Jackson with his tongue hanging out.
Photo ID2: Jackson (age 7) sitting on a blue couch looking out a window. The photo is taken from outside the window and the reflection of bare trees can be seen on the glass. Jackson is wearing a black t-shirt and staring off down the street. Above him is a handmade sign that reads “Thank you” and “#StayHomeSaveLives”.
