Rare: seldom occurring or found; uncommon.
When I was very young, I told my parents I wanted to lead an interesting life. Sometimes this memory haunts me. In many ways, the universe made my wish its command.
Things got started earlier than I had probably hoped they would. During my childhood, my mom was wrongfully accused of a white collar crime. She was indicted, and the case went to trial. She faced the very real possibility of prison time alongside two other innocent colleagues. While I was only eight years old, I remember the fear we all felt. I remember not knowing who to talk to about something like this–not many kids in my class had been to the courthouse for any meaningful reason beyond a routine field trip.
I remember the embarrassment and shame that is inevitable when something like this happens. In the United States, nobody is really innocent until proven guilty. People believe that where there’s smoke, there’s fire. Even at a young age, I knew this. I also knew my mom would never so much as consider acting unethically in her work or her life, making it more frustrating that others would surely assume the worst. I felt sad for her. Like so many things in life, it wasn’t fair. She was acquitted based on no evidence, the same day O.J. Simpson was exonerated in an incredible demonstration of our legal system working in some cases and not others.
This is my first memory of living through a rare occasion. I wrote my first school essay about it. It was a tale of triumph, ending with the post-acquittal celebration my parents carried into the late hours of the night. I wasn’t there, but I imagined champagne bottles popping and dancing throughout downtown bars. It was my first moment of profound relief, moving from light into darkness and finally back into light.
Rare: unusually great.
Shortly after my 21st birthday, I met a guy at a bar in Chile. I rejected his friendly greetings twice before he asked for the chance to buy me just one beer. If I didn’t want to talk to him after, no hard feelings. I was out of money, so it was an offer I couldn’t refuse. As it turns out, the third time was a charm for him, and one beer dramatically changed our lives. Eight weeks later, we learned I was pregnant. Nine months later, our baby boy arrived.
Somewhere in the middle of all that, we decided to get married. I knew we were dealing with risky business here. I hadn’t even finished college, and he was getting ready to choose a specialty in the Chilean navy. We had no idea how things would work out for us, but it just felt right.
I’ll never forget sending a group email to my friends back home that I was expecting a baby and getting married. It’s been confirmed that several jaws hit the floor upon opening that message. We met on July 25, 2007, and tied the knot on July 26, 2008, with an infant in our arms and loved ones at our sides.
Rare: having the component parts not closely compacted together; not dense.
Our wedding was celebratory for many reasons. Just one month before our nuptials, we were in the NICU with our newborn. He was having seizures from a traumatic birth injury. A CT scan revealed a skull fracture, which is extremely rare in newborns, whose skull bones are still flexible after birth. The doctors caring for him admitted they had never seen this before.
“Is he going to die?” I asked, desperate for reassurance.
“We don’t know,” she replied.
The fear debilitated me. His seizures were intensifying, having gone from a gentle pulse of his hand wrapped around my index finger to full-body tremors. At this point in my life, I wasn’t even expecting to have my own family so soon, let alone observe my baby in distress.
I remember feeling overwhelmed with shame that I entered into this phase of my life so unprepared. Instead of reading baby books, I was finishing my degree and interviewing for jobs. I even went to a job interview the morning before I was induced for labor. Who does that? I blamed myself for circumstances I could have never prevented, even if I could have imagined them as possibilities.
I sobbed and begged for a positive outcome. I promised to shift my focus where it needed to be–squarely on my child and my family. The desperation I felt at the time still comes back to me now and again, remembering how overwhelmed we were by this moment in our lives. We thought we might leave the hospital without our son.
Once again, the darkness cleared. Tommy’s body healed remarkably, and we all went on to enjoy sixteen years with a clean bill of health. More than a decade of sunny skies together.
Rare: occurring infrequently, encountered only occasionally or at intervals.
“Are you willing to release your records for medical research purposes?”
The receptionist welcomed us with a smile and a list of questions at 5 AM as we arrived for Tommy’s port placement and bone marrow biopsy.
“Sure,” he replied. “It sounds like I’m a one in a million case, so they probably really need it.”
My 16-year-old grins as he describes circumstances most people only meet in their nightmares. In my heart, I know we have to laugh. The anguish had a powerful grip on me. It was hard to break away from the tears that for weeks came from places so deep inside of me, I had never felt them before. Tommy’s energy and attitude always soothed me. He knew he’d beat this, and honestly, so did I. But I wished he didn’t have to, and worried the universe might try to prove me wrong.
The hospital is a clubhouse for families like ours. We gather here to face extraordinary circumstances together. Outside of these walls, we’re one in a million, but in here, we connect through our similarities. There is often an instant bond with others navigating a similar path.
During a podcast about caregiving for children with cancer, a parent mentioned:
“Everybody wants to help, but they look at you differently. They now look at you with sad eyes. They look at you as a cancer parent. They have a hard time connecting… As soon as I connected with an oncology mom, it was power. It was courage. It was strength.”
Facing a rare diagnosis is difficult for several reasons, but one of them is the constant reminder that you are now an outsider in circles where you used to belong. It almost forces you to find others who have been in this position to feel normal again. Once you see them, the power is real. The relief is swift. Their empathy is a salve for your open wounds. It’s rare to find connections like these in life, and suddenly, you have a team around you to help you through this challenging period. You can move forward with some semblance of strength.
Rare: marked by unusual quality, merit, or appeal; distinctive.
A confidence like Tommy’s is as contagious as it is uncommon. Whether he liked it or not, this was happening. It was time to do the damn thing, and he insisted we follow his lead. While I went through the natural course of grief, starting with denial, Tommy demonstrated this radical acceptance from the beginning. I wanted to reject the cards we were dealt, but he accepted his bad hand and went on to play this risky game forced upon him. His bravery was remarkable. While I know he had difficult emotional moments, fortitude was never far from the surface for him.
On Halloween, we started our day by heading to our local clinic for labs at 7 AM. We then drove for three hours round-trip to the Mayo Clinic for more insight on the rare cancer diagnosis our son would navigate. When we got back home, Tommy put on a costume and went out to celebrate his favorite holiday with his friends. He had completed two rounds of chemo, but one may have never guessed. The evening was pure joy and laughter.
Our care team often commented on Tommy’s unique attitude and perspective. We would joke that they must say this to every family. They assured us that his ability to see possibilities from such an extraordinary, challenging diagnosis was rare. All of his posts on social media about his treatment had an air of ambition to them. As he once said:
“The loss of my leg is one I am willing to accept and capitalize on as I would like to change how I live my life, not just in my movement, but every other aspect.”
He didn’t spend too much time wrapped up in what he was losing. His focus was almost always on what he’d gain.
Rare: marked by wide separation of component particles; thin.
There were nights when I sat by his side while he played video games or watched something on TV because I needed his strength. In the beginning, most days felt volatile. I was close to a breakdown at any given moment, and being near Tommy was the only way to prevent them.
I knew then, as I do now, that this was backwards. It’s not fair to expect anyone facing a cancer diagnosis to comfort their caregivers through their pain. The shame was palpable, but I couldn’t rise above it. As always, Tommy was deeply understanding. He assured me it was okay. We’d all be okay.
I was reminded of our experience in the NICU after his birth. For the first 48 hours, I struggled through debilitating fear. When people tried to talk to me, I could barely respond. It felt like floating through an unknown, foreign world. The machines beeped and puffed gently in the background, a constant reminder that we were out of our depth.
On our third day in the NICU, Tommy smiled for the first time–and not just a small, typical newborn smile. A big, bright, full-faced joy from ear to ear, unlike anything I’d ever seen before from someone so new to the world. He wasn’t anywhere close to talking yet, and he still assured us that we’d be okay at just three days old.
Rare: unusually excellent; admirable; fine.
We are just two months out of frontline treatment. Tommy is already back on the field practicing for his upcoming amputee soccer training later this month. We weren’t sure he would ever play again, given the realities of his treatment. His determination is on full display for us once again. This is just the latest demonstration of the power he has inside of him.
I watched him and his dad pass the ball around on the field last night. Each breath felt heavy in my chest. The tears fell. It was my 39th birthday. So much happened this past year. This was my gift.
Until recently, I thought of many rare circumstances in my life as predominantly “bad stuff” happening to me. This is easy to say now that we’re in a moment of relative relief, but I’m starting to see rare things more by this definition of “admirable” and “fine.”
Some gifts come with living through the unimaginable. I fully understand my priorities now, and in the past, that’s been harder for me to identify. I don’t need as much as I once thought I did. As a fellow cancer parent once mentioned, “normal is enough.”
Rare situations provide us with an opportunity to respond, whether we like it or not. I’m certainly not proud of all the ways I responded to rare events in my life, but I’m grateful that I found some grit and tenacity when I needed them. I’m honored to witness my son’s strength of character alongside his physical strength. I’m so fortunate to have the connections I may not have established if it weren’t for the challenges we share. There’s some sparkle to be found here.
Rarity is marked with an incredible array of emotions. These moments often bring shock and awe, confusion and clarity, chaos and relief, grief and celebration. None are inherently bad, but many are very challenging. Many others still are life-changing. You can try to look away from them, but they are present.
I’m getting more comfortable accepting my complicated feelings and moving through them. I may never be very good at this. I’m okay with that.
I want to believe I’ve had my fair share of rare occasions by now, and life can be a calm sea to sail through from here on. But it seems that’s not how life works. It’s certainly been interesting. I have no idea why I wanted that as a child, but now, I can see how rarity has shaped me. There are times in my life when I’ve felt intense anxiety during periods of relative normalcy. Rare occasions have shown me that not everything deserves my worry. That feels like growth.
I’ve struggled with the pressure from others and even myself to look at the bright side. Sometimes, things suck. I’ve also really struggled with toxic positivity and spiritual bypassing through these challenging times. It doesn’t bring me comfort knowing others believe someone has a plan in store for Tommy, and it certainly doesn’t help to hear that “suffering is in the mind.” I can feel the impact of this throughout my body. I did not choose to have our lives derailed, and the damage is real. But I can learn from Tommy and accept it, maybe even find some clarity through it.
Lately, I am motivated to embrace our rare circumstances as an opportunity to forge deeper connections and build new ones. I’m exploring what my body and mind need after living through something extraordinary. I’m listening to myself more and trying to honor my needs. I’m acknowledging that something significant happened, resisting the urge to minimize our experience. Perhaps this in itself is a rare gift. Maybe I don’t love how it arrived, but I can be grateful it’s here.
I can see the beauty in rare circumstances and come to peace with that word having an outsize presence in my life. It’s brought many things along with it, but most importantly, a profound love and admiration for my son, my husband, and the story we’re writing together. That may sound simple, like something many people experience, but I know it’s remarkable. It’s a gift I’ll treasure forever.
My son was diagnosed with osteosarcoma at 6, and he was also hospitalized within his first month of life.. his was for mastitis. We found out he had cancer shortly after he started playing soccer. I’m always trying to figure out why. It can’t just be random bad luck
Hi Liz - This is a remarkable tribute to your son. You must be very, very proud.