Welcome to our Holland
The beginning of our journey in Holland… May 2016
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 right along with us.
Our family should be pros at this by now, right? But lifestyle changes are always jarring, I think that’s just the human in us. 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 laying 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 special needs parent 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 special needs child be your guide. Many find strength in its words. However, if I’m being honest, the first time I read it made me angry. My plane didn’t land in Holland, 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 snow storm in front of me.
For the purpose of this blog, I went back and re-read the essay and was able to see the beauty, comfort, and truth in Ms. Kingsley’s words. So many folks around the world right now are experiencing the feeling of that initial disappointment - of getting off the plane in Holland. 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. Essentially, they went to bed at home and woke up in Holland.
Celebrating Purple Day for epilepsy awareness, yesterday, while sheltering-in-place
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: physical and mental. All of that is very real and it was real when I stepped off the plane in Holland with Adelaide too. It’s not all tulips and windmills but let’s not miss the beauty when we pass it by.
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 corona crisis. While we will find our way back as a society, special needs families never do. They forever live in a new, and ever-evolving, normal. A medically-complex friend wrote to me saying that she hoped that when the world returned to their “normal” that they would take with them a dose of perspective. This could include an additional appreciation for their own health and how their actions effect the health of those around them. Or perhaps that life goes on even when sports, meetings, events and trips are postponed or cancelled. At the end of the day, when lives are at stake, none of that stuff matters. This is the reality that special needs families live everyday. 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.
