BY KAITIN KELLY BENEDICT

My son found a broken dinosaur mood ring in the bottom of a drawer as we were cleaning his room. We had purchased it for his brother Roman years earlier at a dino exhibit happening in our city. His brother was still alive at the time.

Roman traveled to the exhibit in his wheelchair with tanks mounted on the chair’s back that supplied his air with a hiss. Alongside the tanks was a beeping oximeter strapped on using the same bungee cord his dad used to secure his helmet onto his motorcycle.  The chair bogged down by other medical equipment–suction machines, sterile water, a feeding pump and extra doses of medication for pain–created an island of “life accessories” surrounding a little boy with cherub cheeks and light blue eyes. Leaning forward, I pushed hard on the heavy chair as I turned the corners of the convention center’s dino exhibit. I navigated the terrain as nimbly as the strollers with uninhibited toddlers in them.  My older son briskly ran ahead with his Nana in tow. Her wallet was ready to supply bills for souvenirs; the plastic junk that holds the memories of family outings.

For every family, finding things to do together to make childhood memories can feel like an administrative job for parents at times. Search the events, buy the tickets, pack the diaper bag, and make sure the phone is charged for pictures to document it – photos that can be used for future graduation party collages, social media posts, and reminders that our children were once young and innocent. When your child has a shortened life expectancy, the photos serve a different purpose. They are proof that they were here and lived a life with you by their side. Each outing carries a different, greater weight. For my Roman, this meant the physical weight of his chair, the weight of worry that something may go wrong while out in public, as well as the pressure to make lasting memories.

Our outing checklists were long and included setting our phone alarms to remind us of medication times and making sure to remember the oxygen tank “key” that opens fresh tanks. Once forgotten, a “key” was now in every extra pocket imaginable. Forgetting a medical item with a medically unstable child isn’t like forgetting diapers and stopping at Target on the way to pick some up. It could mean an immediate exit and stressful ride home for relief or worse, a 911 call. The potential drama and weight of perfect planning made every family outing a carefully orchestrated event.

Having the bandwidth to execute a safe and worthwhile family outing also included a flurry of questions. Was this a winter event in the middle of cold and flu season? Had he just recovered from a respiratory virus? Was the risk of infection worth the memory making we would be doing? Worth the stress? Could we pay attention to big brother?

Even when I had meticulously planned an outing, packed, potentially scheduled a nurse or additional adult with medical skills to accompany us, weighed the pros and cons, there was a new kind of pressure. The pressure to not just GO but to make it SPECIAL.  Knowing your child has little life to live, you have the added pressure of making every trip to the pumpkin patch magical. I accrued photo ops with determination as I bowled people over with a hefty wheelchair, a smile and sweet “excuse me.” When your child’s health is delicately balanced between fragile and “touch and go,” seizing stable days when the stars align with low virus levels, comfortable temperatures and a fun event feel urgently necessary.

Each memory captured in photos is two-dimensional proof that I did my best. If I could do it over again, I would do more. But that careful dance of risk and reward was never easy to navigate and so I give myself grace. My overprotective nature probably kept us from some events that would have been just fine, but it also may have kept him here longer and I would have walked on my hands to get a few more months. Sometimes it felt like I was in fact, inverted.

If I could go back in time, I would have told myself that I was adaptable and competent enough to leave the safety of home and make more memories. This might sound like silly advice especially to naturally easy-going individuals, but for those type-A parents out there feeling intimidated by the burden of living in constant fight or flight, waiting for the next medical emergency know that it’s ok to relax. You will be competent in a relaxed state.

We were lucky enough to receive palliative services early in his life. This meant I felt like the CEO of a multidisciplinary team that had been assembled to make my child’s life full of quality filled days even if it sacrificed quantity.

I remember calling the palliative nurse soon after first receiving services. The novelty of having an on-call number provided to us was still there. I felt guilty as I called the nurse’s cell to ask if we could go to the park or if she thought he was too unstable to make the trip. Thinking it was less important or that I was bothering her because it wasn’t about medication. “I would be disappointed if you didn’t take him to the park,” she said, “and don’t apologize for calling, that is what we are here for.” They gave us the tools to embark on our memory making adventures. It also allowed us to have support at home if he came home from an event in slightly rougher shape than when he left.

Kids seem to have a well of “oomph” to draw from to do the things they want to do. One Halloween, my son was having a hard time breathing and looked exhausted. His older brother, dressed in his Harry Potter outfit came into the room and asked if Roman would be able to join in trick-or-treating after dinner. I looked at his sweet face and at his brother and then back at him and shook my head no; disappointment clearly palpable between the two of us. But also noticeable was a look in Roman’s eyes. He perked up just the tiniest bit and for the next hour and a half his troubling symptoms ceased. I tentatively pulled on the fluffy owl costume over his clothes and tightened the cannula under his hat. His big blue eyes begging to go. I loaded him up and caught up with his brother and dad down the street running from house to house to get candy.

Know that if you can’t muster the energy to do something grand and carry the weight today because the pressure is too much, that’s ok. You don’t have to try too hard, memories of skipping the event and staying home will be just as precious. 

But heck, now, when my son wears the mood ring from the dino exhibit it is so much more than a trinket bought by Nana. It is proof that we LIVED together. My son told me the tail of the brachiosaurus is broken, it stays black while the rest shifts, swirling with heat radiating blue, green, and purple. I replied with a little sadness in my voice knowing its importance. He said, “that’s ok.  It’s right, I feel mostly happy but always with a little sadness because Roman isn’t here anymore.” An eight-year old’s wisdom, more concise and profound than mine. But he was here, and we pushed through the weight of it all to make some everlasting memories.

Kaitin Kelly Benedict is a former professional dancer who now only does pliés in her basement. She believes strongly in the health benefits of movement and creativity and has taught wellness classes for artists in the community, public schools, and at the university level. After the traumatic birth of her second son in 2017, her days were spent running an ICU out of her home and running to medical appointments. Since his death, she has redirected her focus toward embarking on a master’s in social work. Kaitin has always loved writing and particularly loves writing about her son Roman. She is also published in Months To Years literary journal.