As I was looking through the photos from our beach vacation last month I noticed one particular picture. I was seated between Mark and Jillian on the beach, smiling at the camera, completely enamored with my kids. Mark, who I thought would never be able to tolerate any of this, seated to my right happily situated in the sand, burying himself, and Jillian to my left taking a brief reprieve from the ocean. And then I realized something was missing. Grief. I wasn’t mourning what we didn’t have. I was abundantly celebrating the gift that I was so gracefully given.
Five years ago I would have focused my energy on grieving the fact that my kids weren’t playing together; they weren’t building a sandcastle, chasing each other on the beach, or playing Marco Polo in the pool. I would have been sad that we weren’t doing normal things. And today, I’m thankful we had the opportunity to go on vacation and enjoy it through Mark’s eyes.
2015 was marked with diagnosis, after diagnosis. In January we received the autism news, in August, we learned about the genetic disorder, and the fall was rounded out by my Mom’s discovery of breast cancer. We spent the following year traveling to all of the associated medical appointments and acclimating to the world of therapy and mom’s cancer treatments. Going with mom to pick out her wigs was surreal, and that first trip to chemo was sobering.
I vacillated back and forth between terror and extreme sadness at the prospect of facing this very different aspect of motherhood possibly without my mom, and anger that everyone else around me seemed to be living life completely uninterrupted. And I couldn’t bear to watch people take vacations or enjoy the fruits of summer.
In fact, in the summertime, I would fast from social media so that I wouldn’t have to look at people’s vacation photos while I sat in a waiting room. I was bitter because my reality included having a child with so many problems that we didn’t even know where to start. Between significant gastrointestinal issues, a couple of broken arms, and all of the associated deficits with Mark’s genetic condition, we were on the road every summer but we were headed to hospitals and clinics, not baseball games or the beach.
Given Mark’s constant bouts of diarrhea, inability to handle changes in routine, even taking a different route to a familiar destination, I would have never thought that my family would have been able to successfully go anywhere. Until this year.
We decided to be brave and take a chance on a trip. I wanted the kids to experience the vastness of the ocean, the magic of evening summer beach sunsets, and the peace that only waves and saltwater can bring, even if it meant total insomnia and meltdowns. I imagined us taking turns being up with Mark at night and I envisioned him screaming as the sand touched his feet.
In anticipation, I created a social story that showed each of the rooms of the beach house and explained what we would be doing for the week. I set the photos to music and created a video for him to watch. I made lists, lots of lists, and said prayers that he would adjust without too much trauma. I feared the possibility of a bathroom trip and the need to wear a mask. I churned with anxiety and dread about this vacation.
And then we arrived at our destination, and Mark joined his brother and sister squealing as they ran from room to room on each floor of the beach house. He was just as happy as they were to be someplace new and interesting and to be out of the car. We unpacked, settled in and he seemed at ease and at home, but there was still the potential challenge of sleeping someplace new. He’d never really slept away from home and I had no idea how we were going to safely contain him at night so we had brought a bed tent to mimic his enclosed bed. And to our wonderment and surprise, he happily slept all night, along with everyone else.
The rest of the week was a series of pleasant surprises. Mark loved the ocean! In fact, he would let it carry him away if we would have let him. He enjoyed being in the pool, and when we had downtime he loved to perch cross-legged on a chair in the corner of the deck happily playing on his iPad as we all hung out. He was vacationing, Mark style and I couldn’t have been happier.
And then one night toward the end of the trip, we decided to build a fire on the beach. We took all the chairs, supplies, and the kids, and trudged across the dunes to our spot. We fully anticipated that one of us would need to be on guard with Mark ready to sprint. And once again, he surprised us. He sunk down into a beach chair, buried his feet, and relaxed as he listened to music and the ocean waves. Not once did he bolt or panic. I kept tearing up as I looked at each of my family’s faces and took pictures, trying to savor and cement this moment forever. I needed to relish in the fact that I wasn’t yearning for anything more. I wasn’t sad that Mark wasn’t interacting with us in a typical way, or that he didn’t care about seashells or ghost crabs. No, I was blissfully enjoying the gentle-spirited boy who God created, rather than the neurotypical boy that I used to wish for in his place.
I also needed to reflect and remember how far we had come. No more loose stools. No more intense anxiety and panic. We had arrived at calm, and we were together as a family celebrating that achievement. Without saying it, I knew that every single one of us around that fire knew how significant this was.
My sister and I took a photo with my mom that night at the fire, and I felt tremendous gratitude for the opportunity to be with our mom on the eve of her birthday and five year anniversary of being cancer-free. This vacation was a symbol of triumph, growth, and the abundant blessings that I feel thankful to recognize and enjoy, without the heavy grief that followed me around for so long.