Author Ellen Seidman, her son Max, and their family (Photo: Yasmeen Anderson)
“Expose him to as many new experiences as possible,” the pediatric neurologist told my husband and me. “They’ll help his brain grow.” We’d brought our 1-month-old boy for a consultation, following his two-week stay in the NICU. Max had a stroke at birth, resulting in brain damage. Doctors informed us that we could sign a Do Not Resuscitate, only Max pulled through. Into what kind of life, we didn’t know — his future looked grim. He was at risk for not walking or talking, and severe cognitive impairment. But Dave and I were determined to help him however we could.
We got Max physical and occupational therapy up the wazoo, along with the real-world kind the doctor had recommended. We took him to museums and photo exhibits, holding him up to the artifacts and pictures. We wandered around neighborhoods in New York City. Sometimes, our best intentions proved impossible. Max had sensory issues and new environments could make him melt down, bringing on my own despair. I desperately wanted him to have the richest life possible, no matter what his disabilities, and to explore the many wonders of the world.
Before Max came along, I had spent as much free time as possible traveling. I’d backpacked through Europe, and visited Spain and Turkey with friends. After I met Dave, we hiked in Patagonia, Chile; drove around Ireland; and cruised Alaska’s Glacier Bay. We couldn’t wait to travel with our child.
Eventually, Max was diagnosed with cerebral palsy. Yet he defied the doom-saying doctors, taking his first steps at 3-years-old and speaking words at 5, on his timeline. Max grew to love new places. After our daughter was born, we started traveling around. We road-tripped to Tanglewood in the Massachusetts Berkshires and Amish country in Pennsylvania. We flew to Jamaica. We hit Disneyland. We visited the Sugarbush Resort in Vermont; Park City, Utah; and the Keystone Resort in Colorado where Max did adaptive skiing, pros guiding him with a special harness. This summer, we drove to North Carolina’s Crystal Coast.
Trips are bliss for all of us, but it’s Max who tends to get the most excited, talking about them for months ahead of time. His speech is hard to understand, but he uses an app to speak sentences that he types out. Months ago, he decided he’s going to be a firefighter when he grows up; he’d explored fire stations around the country on YouTube, and decided Chicago had awesome ones. One day, his teacher sent me an email asking when exactly Max was going to Chicago, because he’d informed her that he was. It was a fantasy, except Dave decided to use air miles and do a boys’ weekend there this coming March. When we went on a Disney Cruise last month, Max delighted in telling Mickey Mouse that he was going to Chicago.
Max talks about Chicago approximately every 10 minutes. He has picked out the hotel (the Hyatt Regency Chicago), restaurants (the Firehouse Restaurant there actually had a fire, so we hope to visit the Fire House Grill in Evanston), and things to do. (We’re surprising him with an O’Leary’s Fire Truck tour.) I will have to put my foot down if he decides he wants to move to Chicago.
Watching Max on his iPad planning the trip blisses me out. It’s wonderful when a child inherits your wanderlust, but it is downright miraculous seeing a child you were told the worst about figuring out his vacation. I believe our travels have helped his mind flourish, right along with all the therapy and education he’s gotten.
For six years, I’ve written a blog for parents of kids with special needs called Love That Max. Two weeks ago, Max wrote his first post about — wait for it — his trip to Chicago. It is my favorite post of all time. This is what he wrote:
Fireman Max is going to Chicago on March 29 with daddy.
Max (Photo: Ellen Seidman)
I am going to the fire house.
(Photo: John Picken/Flickr)
I will eat at Firehouse rasstarant.
(Photo: Eric Allix Rogers/Flickr)
I am sleeping at Hyatt hotel.
(Photo: M Baylor/Flickr)
I am taking the bus.
(Photo: Adam Fagen)
Fireman Max loves fire trucks.
(Photo: Ellen Seidman)
I am happy.
Max, in his fireman’s cap (Photo: Ellen Seidman)
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