We're In This Together: Peter Witzler on Epic Summers

Peter Witzler and family

We’re pleased to introduce a new series for the blog: “We’re In This Together” with our LL blog master, Jeneva (who’s also the author of our “Sharing the Journey with Jeneva” series). As parents, caregivers, and self-advocates who've struggled with unknowns, isolation, fear, stress, and more, we've learned a lot about adapting to and coping with what life throws at us. We've learned that human beings function best when we learn to rely on one another. We've learned happiness is always possible. We hope our experiences can help others cope with new challenges in the Covid-19 era. 

Peter Witzler, his wife Lisa, Teddy (8), and Jackson (5), live in Montgomery County, Maryland. He enjoys sharing his love of nature and food with his family, and brewing a new batch of beer with the East Rockville Brewers Guild. 

Tell me about your family. 

Summer is an epic time for my family. Our long running joke: We’re all part fish, so summer involves lots of time at beaches, lakes, and pools. Jackson and Teddy would spend all day in the water until their lips turned blue if we let them. During the winter, we love a good Marvel or Star Wars movie marathon in front of the fireplace for what we call a “Day of Sloth.” Jackson has a creative and adventurous personality, especially in his efforts to keep up with daredevil brother Teddy. Teddy has embraced his role as big brother and helper, especially as he enters 3rd grade as a “big kid.”

Tell me about Jackson’s medical needs and disabilities. 

Jackson was born with spina bifida and uses leg braces and a walker or crutches to get around. He uses a BiPAP machine at night because he has severe obstructive apnea. BiPAP stands for “bilateral positive airway pressure,” and the machine assists with Jackson’s breathing.

How did your journey with Jackson begin? What were your feelings? What kept your love for your child burning bright and fierce? 

Despite excellent prenatal care, Jackson’s rare form of spina bifida went undiagnosed throughout the pregnancy. The entire delivery room went silent when he was born, and our journey began. Without time to prepare and process our new reality, I felt the weight of despair and fear wash over me. These were eventually replaced with strength, resolve, and hope as we learned more about Jackson’s condition, began setting goals for his health, and committed ourselves as parents to fight like hell to give him the best chance possible to live his best life.

What were some of the new challenges in your life, and how did you learn to adapt?

My wife and I are planners and schedulers, so we had a plan for everything leading up to Jackson’s birth. We quickly learned the reality of an old military adage, ”No plan survives first contact,” and learned to let Jackson and his health become our north star. At the same time, we’ve had to continually adjust to our “new reality” as outliers. That status has actually strengthened our family bond, as we learn to love and live with each other in close proximity. Marching to the beat of our own drum has helped.   

How did you tease out joy in the midst of your most difficult moments? 

We learned to find the silver lining and humor in everything. Four weeks into our second hospital stay in three months, I remember looking at Lisa during one of Jackson’s diaper changes and saying, “Do you realize how much money we’ve saved on diapers?!?!” During hospital stays, diapers are provided as part of necessary medical supplies. 

Looking back at life with Jackson, what's your advice to other people trying to cope with the uncertainties of the pandemic?

We had to learn to take time for ourselves. It’s impossible to take care for someone else unless you’re taking care of yourself. For me, that meant finding time to go for a run and recreating Rocky training montages during our six-week stay at Children's Hospital of Philadelphia. Lisa found time to leave the hospital and get outside--fresh air does wonders! Caring for someone can be exhausting because you repeatedly displace your own needs for those of another, whether that’s providing medical therapies, or just helping your kid with a Zoom meeting for school (last week), or virtual camp (this week). 

It’s easy to get lax with routines and bargain with yourself about doing such and such later, or the next day. It’s also easy to get mad at yourself or feel guilty for not “doing more” with your time. To quote Admiral Ackbar from Star Wars, “It’s a trap!” You do, in fact, feel both ways: laid-back and guilty. I’ve developed a mantra for this: “Man, this feels crappy. It’s OK to feel crappy. And I won’t always feel crappy about this.” 

What’s your top advice for moving forward, given that the pandemic may not resolve itself soon?

When the pandemic started, we were, like, “I got this. This’ll be easy-peasy-lemon-squeezy.” I mean, we’d spent six weeks within the four walls of a hospital room; we could do quarantine at home. What’s been hard, though, as we move into phased re-openings, has been watching our friends and families break their quarantine bubbles and re-enter the world. We’re left on the sidelines. Jackson’s health and this virus are setting our parameters. We’ve had to re-calibrate what’s possible: We go on long hikes every weekend and spend loads of time outside during the week. Instead of going to the pool every weekend, we bought a small inflatable one for the backyard. Since I’m no longer able to travel for work, we decided to adopt a dog--something we’ve wanted to do for a long time. Instead of visits to the lake with family, we do Zoom, Facetime, and Google Hangouts. This summer we’re going to spend a month driving an RV to Mount Rushmore (to see Teddy’s namesake, of course), and Yellowstone and Glacier National Parks, channeling our inner Clark Griswold. 

What have you  learned about human interdependence, that we're all dependent upon one another?

I think we’ve all learned the importance of “me” time and recharging our batteries. Everyone gets a chance to chill out on their own (Lisa and I included). It’s been important for us to set some routines--we hold a “morning meeting” to discuss our day plan and involve everyone in decision making. We also try to “debrief” each day; each of us states their favorite and yuck part of the day. We are all in this together.