letters to tommy

It’s been a year.

Tue, 03 Jun 2025 08:57:46 -0500

On June 3, 2024, we decided to skip one of your soccer games to continue our annual tradition of dinner together at our favorite local restaurant. It was our tenth year celebrating your birthday there. I remember the rays of sunshine shining through the window, illuminating your brunette head, giving it a unique auburn hue. I asked if I could take a photo. I wanted to remember how you looked that day with your light coming back after a challenging first half of the year.

You had worked through hard times with sports in particular, playing for two club teams simultaneously and practicing nonstop to pursue your ambitious athletic goals. This night off was very well-deserved. You had started a new relationship, and we started seeing your contagious smile once again. Our Tommy was back, the sweetest 16 we could have imagined. A summer filled with soccer, pool days, and adventures with friends would lead you to junior year of high school. We were sure it would be your best yet.

It’s been a year since that ignorant bliss of believing we had overcome some of the biggest challenges you’d face as a teen. A year since the glorious ease of typical high school things, enjoying excellent health and wellness, no sleepless nights or mid-day anxiety attacks for me as a new reality knocked us out of our normal orbit. A year since I could walk into a Walgreens pharmacy without holding back tears, thinking about all that you’ve faced and what your diagnosis has taken from you. A year since I could go hours, days, weeks, even months without thinking about cancer at all–a luxury I couldn’t have possibly appreciated at the time. If I had only known what stood in front of us just three months later, perhaps I could have appreciated our old life a bit more. But maybe it would have only suffocated me sooner.

It’s been a year of heartbreak beyond our wildest imagination. When we returned to Twin Cities Orthopedics on Friday the 13th of September, I thought we might be discussing a season-ending knee injury. Instead, “something weird” appeared on your recent MRI, and the possibility of cancer appeared on the table. We convinced ourselves it wouldn’t be what it ultimately was–far more than a season-ending injury. A life-threatening diagnosis. What I wouldn’t give to trade it all for a torn meniscus.

It’s been a year of one gut punch after another: watching you get hooked into bags across two large IV poles filled with toxic chemicals to rid your body of cancer and kill your 7-centimeter tumor. Losing your beautiful hair with the auburn hue in the sunlight. Speaking with several surgeons about your options. Accepting limb loss as the best of three horrible treatment choices. Kissing your right leg goodbye in the surgical prep area. Traumatic adverse effects of pain medication in the PACU. An air of exhaustion I’ve never seen from you before. The emotional ache of seeing your amputated leg for the first time, washing over us like a tidal wave before you were once again taken to the operating room for another surgery. Your new relationship coming to an end. Your lifelong, dear friend lost in a tragic accident. It was all too much. I thought it would break us.

It’s been a year of not breaking, watching you continue forward, straight through the hurricane of compounding stressors. When I once tried to describe cancer as a setback, you challenged me: “Is it though?” You suited up for homecoming and prom, barely missing a beat in the grand scheme of things. I had just gotten used to you walking around our house on one leg and crutches, and all of a sudden, you waltzed into my room on two feet, 56 days after your amputation on your new leg. 59 days after, you were shooting hoops and throwing a football. It’s been a year of starting and completing 96 doses of chemotherapy with no delays as your body recovered from the impact of the toxic drugs inside you, rarely, if ever, complaining. You kept hanging out with your friends and loved ones through it all, even showing up for school to catch up with everybody. You got your driver’s license, cruising the streets before your surgery, and switching from your right foot to your left on the pedals with ease. You showed endless kindness to your entire care team and appreciation for your friends and family. You found a deeper love for others, especially yourself. You acquired the special wisdom few have at your age–that I hadn’t even fully absorbed at 38–that life is precious, delicate, and never guaranteed. We might as well live the absolute shit out of it now.

It’s been a year of gifts we’d never wish for, but can accept and appreciate. It’s been a year of shifting our focus from “what’s next?” to “what now?” We don’t know what will be important one year from now, just what is important today. We know now how little control we have in life, so we won’t waste too much time chasing the illusion of it. We aren’t so burdened by “what if” now that we exist in such an uncertain space. We swim in a sea of unknowns now, and we tread water well so they don’t tangle around us like seaweed trying to pull us under. We head toward the beach to lie down and enjoy some damn sunshine. It will light up your auburn hair again soon, or whatever color it might be after chemo. You already know the hairstyles you like whether it turns out to be curly or straight. We get to wait and see. No more rushing toward answers and certainties that don’t exist.

It’s been a year. A hell of a year. This new one will start at our same restaurant with the same people. You’re a little taller now. You have a new leg. We’ll ask you about a lesson you learned this year and probably laugh at the audacity of such a question. You’ll have an incredible answer, I’m sure. We might think about what’s in store for you this year, but we probably won’t think too hard. We’ll get you back on the soccer field at an amputee training camp this summer. We’ll get you to the beaches of Monaco and Cinque Terre before school starts. We’ll get you on the pitch with your beloved MNUFC for a special event. That seems like plenty already. The rest we’ll just have to see.

It’s been a year of the glorious gift of Tommy and the sunshine he brings to life. There is no greater gift. Sure, you’ll get some presents from us, but it’s far more impressive how much you give to us. For you, I wish peace, joy, and wonder as you continue forward in this world, inspiring all of us and so many others.

It’s been a year for you–here’s to so, so many more.

There’s a lighthouse.

Tue, 04 Mar 2025 08:32:15 -0600

Falling asleep during your cancer treatment has been more difficult than usual for me. Last night I struggled, even though I find myself in a more calm space these days, the anxiety still creeps back in at times. I’ve been trying to put myself into a more meditative state when it happens, and sometimes, when I’m successful, I go into such deep sleep I can’t recall my dreams. But last night, I saw a lighthouse.

We’ve been sailing new, uncharted waters for almost half a year. It’s not a very long time that we’ve been out here, but I’m struggling to remember the place we came from before this. I’ve felt unsafe and disoriented for the entire journey until just a few weeks ago, after your surgery. I began to feel some sense of direction and the slightest bit of confidence about where we’re going.

The lighthouse spun slowly, with a beam of light flashing in and out of my focus. It symbolizes how I feel these days—often focused and moving forward, but never too far from a moment of darkness. Sometimes, I can feel the fortitude leave my body, replaced with mild shaking and a sense of dread or panic. Just yesterday, I felt it at the hospital on our way to an ultrasound to check your lymph nodes. For weeks, I’ve felt my intuition say, “There’s nothing to worry about.” And yet with cancer, there is almost always some cause for concern, or at least diligence. This disease is rare and not well understood. Even at this point, when you have a map of sorts, there are still plenty of times when you feel like you are floating in the dark.

I can’t help but feel that I’m a highly inexperienced captain who is not qualified for this journey, but we’ve been forced out to sea.

Between the three of us, we can see the lighthouse more clearly at different times and take turns guiding this ship forward. The light hits us in distinct ways. I can see it emanating between us.

Yesterday, you told your nurse you feel like you are experiencing a sort of rebirth in your life, open to new possibilities and where this all might take you. You’re recognizing challenges that don’t serve you and articulating the support you need in a moment. I can see your instincts in action, no longer looking to me or your dad for direction as often, exhibiting a calm confidence about where you want to go. You’re fit for duty to keep us moving in the right direction, and we’re pretty thrilled to follow.

There’s a lighthouse somewhere, and it’s easy to feel lost when we can’t see it, but we know it’s there somewhere. It begins to guide you to a harbor, a place of arrival. We may never know how long we’ll stay there—maybe we’ll be forced out to sea again. But at least we know the next beam of light will be out there. We will get to it.

Phantoms.

Fri, 21 Feb 2025 10:45:43 -0600

When your cancer treatment began, I tried to follow the old parenting advice: “Sleep when the baby sleeps.” Doctors and care team members often disrupted this plan with check-ins and visits, but every so often, I managed to rest.

For months, though, I’d wake up after just 20 minutes with a heavy feeling in my chest—one that grew heavier and heavier until I couldn’t stand it anymore. I’d jolt awake, trying to ease the pressure with deep breathing. It must have been a physical symptom of the weight we’re carrying—an invisible creature sitting on my chest, growing heavier with every passing moment, pushing harder until I could no longer ignore it. Trauma doesn’t always hit all at once; sometimes, it builds quietly, breath by breath.

The most recent time it happened was the day before your amputation. After a long day of pre-op meetings, you and I returned to the hotel for a short rest. We’d been up since 5 a.m. for the trip to Rochester. You were in great spirits all day, and we thought a nap would prepare us for one last night of fun with your two natural legs.

The pressure in my chest woke me first. I looked across the room to the other bed where you slept, and as if you could sense it, you slowly woke up and gave me a gentle smile and wave.

You often do this when it’s just the two of us in a hospital room. I can picture it in different spaces—your regular room on the fourth floor during treatment, the post-op recovery area after surgery, and now, a dimly lit hotel room. That small gesture says everything without words: “We’re good here.” It’s a breath of fresh air that brings me peace every time.

We move through this experience with our heads held high, strong and ready for whatever comes next. But we can’t entirely evade the heavy moments. You’ve had your own along the way, too—though those are yours to share when you’re ready.

Cancer treatment has become part of our routine now. You’ve even adopted the way your oncology nurse described it: “adapting to the new normal.” Still, those moments of pressure in my chest are reminders that we’re living through something both extraordinarily difficult and deeply powerful—challenges that others may never fully comprehend. It has changed us in ways we don’t yet fully understand. But the three of us are learning—perhaps even perfecting—the art of supporting one another through it. Not everyone knows how to meet us where we are right now, but we know exactly how to be here for each other. This connection has become a bond, forged by something none of us wished for but all of us needed.

I used to think this pressure in my chest was just anxiety, a small discomfort compared to the immense pain you’ve endured and the transformation your body has undergone. I was almost embarrassed to acknowledge it out of respect for your suffering. But maybe it’s something else—an energy we’re sharing as we move through the hardest experience of our lives together. Maybe it’s not a weight pressing me down, but proof of how tightly we’re connected, how deeply I feel every breath you take and every hurdle you clear.

There are moments when we’re forced to hold our breath—and others when we finally get to exhale. Even bigger exhales are ahead of us.

Joy in the fight.

Tue, 11 Feb 2025 15:34:08 -0600

In the cast room at Mayo Clinic, you sat on the bed for a dressing change, waiting for your surgeon to arrive for a check in before discharge. A nurse was preparing to remove your bandage and asked if he could use a scissors to cut it.

“Sure,” you said. “Just try not to cut off the other leg.”

You deserve an award for your remarkable gift of making people laugh in times when most would struggle to think straight. You had just lost your leg, and it occurred to me that over the past six days, we’ve enjoyed so many smiles and laughs as you hit milestone after milestone, from standing up to walking around to hopping up stairs.

I will always remember when a friend visited you in the hospital and accidentally knocked one of your IV lines off the bed. You shouted “that’s my lifeline!” He briefly panicked until our laughter allowed him to breathe.

If I had understood five months ago how many joyful moments were ahead of us on this cancer battle, it would have brought me a lot of comfort. We say this often, but you’ve really made a painful experience easy. Your determination and cheerful spirit are a comfort for so many around you–not just your loved ones, but you care team as well.

One of your surgeons told us, “He will do really well. Not just with the amputation and surviving cancer, but in everything he does.”

“He’s a really special person,” we noted.

“That’s been apparent. His attitude is phenomenal.”

Truer words. I think about your uncanny ability to find lightness under pressure and wonder what you can’t do. Is there anything? I am convinced there’s no stopping you.

This lightness inspires others in ways we may not fully see. We love when people share with us what it looks like for them and their families. I’m sure this beautiful energy of yours has touched more lives than we know.

I’m trying to absorb more of it to deploy in my own daily life. The way you welcome everyone on your care team into your room, even when you’re tired. The way you make others feel appreciated and seen. The patience you demonstrate anytime vitals or labs are needed (AGAIN) and you just want to sleep. Sharing your most private, vulnerable bodily functions when you’d surely rather not. The way you express your love and appreciation for us as you battle nausea, fatigue, and other undesirable side effects of chemotherapy. The truth is that it is quite a pleasure and honor to care for you–and it is not just your parents who feel that way. Your caregivers express this same sentiment often.

When your surgeon arrives to check your incision, he brings with him the news we’ve desperately wanted to hear for months. Only 5% of the cells in your tumor show viable cancer. Your chemotherapy is working. We’re moving forward to being cured. We celebrate and hug each other in the deepest excitement we’ve felt in what feels like a very long time. Those beautiful words replay in my head for days: “It’s working.”

These moments of joy are real. They exist, and we savor every morsel of them. Just like life in general, a cancer battle has profound lows and immense highs. The trick is to stay here gliding along an uneven road as long as we possibly can. We know that so much of this experience is temporary–and we’re quite thankful that it is–but your spirit is not. Its impact will be beautifully permanent.

When I reflect on our experience so far, the heartbreak has also been very real, and we feel it deeply. It makes it easy to forget that a lot of this has felt steady and determined, marching toward milestones and conquering challenges, with no small amount of smiles and laughs along the way. We’ll keep these moments in our hearts to reinforce their strength, filling the cracks we’ve acquired along the way.

The hilarious lack of dignity in hospital clothing.

We know.

Thu, 06 Feb 2025 20:18:56 -0600

We’ve gotten pretty good at running the drills of hospital life. Name and birthdate, Thomas Schweinitz, June 3rd 2008. No cold cough or fever today. No new bleeding, no vomiting. Sometimes this script replays in my dreams like a song that gets stuck in your head.

“What procedure are you having?”

“Above knee amputation.”

“Oh wow. You know, they’re doing amazing things with prosthetics these days.”

We know.

It was a big part of our decision, really, understanding that your life could be just as full with a prosthetic leg. And yet it doesn’t remedy the heaviness we feel in this moment.

People struggle to stand in the atmosphere of discomfort. They can’t ignore an instinct to say something that might provide a salve for the painful reality we’ve just shared with them. Unfortunately we have established permanent residence here, navigating daily conversations that most families could never fathom. And we’ve gotten cozy enough. Sometimes we have a good laugh about how people react when they step into this space with us. It’s like they’ve accidentally walked into the bathroom when it’s occupied.

We know how difficult it is for people to know what to say in these situations. We know the news we are reporting is something many people only experience through movies. We know that the most challenging question has become “how are you?” Because the answer is “not good,” and while we need everyone to ask, we know many times people aren’t prepared to hear the honest answer. We know we often need to be prepared to make people feel better about what is happening to us. We know we don’t have to, but we also don’t want to sink much lower than we already find ourselves. We know very few options for a follow-up comment that lands with grace. We know intimately what we are living through, and it’s so heavy. Others say they can’t imagine it, but we know they can, at least a little. They wouldn’t even say that if they genuinely couldn’t.

But we also know we are brave, and we know our strength; it’s growing every day, and so is our optimism. We know that you, in particular, are entirely unique in your experience and demonstrate unbelievable courage. You refuse to let anyone else dictate how this will go for you. We know it might be challenging, but we also know that you are often strong enough to move right through the pain. We know so much now. We know the truth is that challenges lie ahead, and the best we can be is ready to tackle them.

I’ll never forget the couple we met in the elevator who asked if we were going to the NICU to meet a new baby. “No, we’re going to the other side of the floor to start my next round of chemo.” You could see the immediate surprise on their faces, stopped in their tracks with an unexpected reply. “Oh, I’m so sorry! Good luck to you,” the woman said. You thanked her for the well wishes.

“No,” her partner chimed in. “No luck man, you’ve got this.”

My heart grew stronger hearing this, and I think yours did, too. What a brave way to dive in head first to our discomfort. We know that sometimes all it takes is a little camaraderie when you’re moving through the dark.

Dear right leg.

Tue, 28 Jan 2025 18:59:19 -0600

Dear Right Leg,

I remember the first time I noticed your power. It was the 2008 Summer Olympics—Tommy was barely one month old. Rowing was on TV while Tommy watched from the floor below, lying on his back. During the race, you were kicking away in unison with left leg in consistent, rhythmic motion as if you were powering your own invisible rowboat. I watched in awe as this tiny baby vigorously kicked away as the boat coasted along in the water. I knew then that Tommy was a natural-born athlete, destined for greatness.

Tommy was born with a skull fracture and started having seizures 24 hours after birth. We weren’t sure what life would look like for our boy, but we knew we’d be there no matter what challenges arose. You helped put our minds at ease when you got Tommy up and crawling so quickly—and even more when you helped him take his first steps at just ten months old. We were so relieved to watch him hit every developmental milestone early. You wasted no time forcing his parents to chase him down at a very young age. We loved it.

I remember watching you dance to the beat of “Gimme Some Lovin’” by Spencer Davis Group. That deep, steady bass line. Is there anything more adorable than a toddler finding his groove?

I can see you chasing our new buddy Duke around, landing effortlessly on the ground when he accidentally knocked Tommy down. He knew he was safe and started cracking up. It wasn’t long before you got Tommy kicking a soccer ball around, the beginning of 16 years of love for the most beautiful game.

You began to take Tommy places that we’ve been so lucky to witness—all of it. Every big moment. You made Tommy truly fly when it came to running. We were mind-blown when he won his first official races with ease. I can only dream of running a 5K in 18 minutes—but you, dear right leg, made it happen for him. A remarkable accomplishment.

You shine the most on the soccer field. You made 90 minutes of nonstop running look so simple. I’ll cherish our photos of you + Tommy in action, the momentum and power you so beautifully show.

I’ll cherish the sound of two little feet shuffling into our room every morning to greet us, and the days in Tommy’s childhood when I’d wake him up from naps by whistling “Habanera” from Carmen and pretending to play the leg as a piano, growing the intensity as the song hits the crescendo. This became less funny for Tommy once adolescence began to strike.

It’s been years since he even dared to attempt a classic leg fight on the ground with you, but I’ll never forget you were a worthy contender. You were, and frankly still are, an excellent force of propulsion for cannon balls off the diving board. You kept Tommy playing soccer daily, even when a tumor started to grow inside of you. From nothing to eight centimeters of cancer in just seven months, yet barely missing a game. What a remarkable thing to do.

You took Tommy so many places. You had him jumping at concerts + lighting up dance floors at weddings. Now he has to find his rhythm + his passion without you. It makes sense we are grieving your loss. You gave my favorite human so much. Thank you for taking him to so many places, walking hundreds of miles through incredible travels all over the world, fueling his curiosity and sense of discovery. You’re a damn good leg.

And it’s breaking our hearts to say goodbye. We try to tell ourselves it’s just a leg, but you’ve been so much more. A life force and a sense of ease are not just insignificant things. The greatest tragedy of all is you don’t even hurt anymore! But the risk you now carry is too great to bear—and it is truly a shame.

We must be grateful that you’ve kept Tommy moving, growing, and pushing forward for these sixteen years. We’ll keep your ashes with us as a reminder of how capable we can be and the remarkable sacrifice Tommy has made to have the best shot at a life like the one you made possible for him, for us—for sixteen beautiful years.

Thank you, Tommy’s dear right leg, for carrying our boy all these years and supporting such a beautiful, active life. Thank you for giving us hope, peace of mind, ambition, the absolute gift of movement we will never take for granted because of you. We know that Tommy will continue to feel the sensation of you even in your absence, a testament to your power in his life. He will continue to move forward because of you.

Believing in magic.

Fri, 24 Jan 2025 16:22:43 -0600

You always believed in magic. You lit up with joy for every tradition we celebrated. You expressed such powerful creativity as a young child. Art and drawings appeared throughout our house. I would open books to find little monster drawings inside. You decorated with great imagination for holidays, especially Halloween—expressing a love for the mystery and macabre, the same passion as mine. You built Legos and forts and entire civilizations with your arsenal of toys. You wrote letters to your elf and Santa and other spirits that brought you hope, intrigue, and joy. You made videos and created performances for your family. You gave us all lessons in so many things—from teaching your Omy how to speak English, to your mom how to make vampire breath and perform alien autopsies. You drew comics and kept a journal. You told animated stories and provided endless entertainment. You always whistled around the house, sang and danced in the shower (sorry we took videos of that, and had the gall to show you). You knew life was to be enjoyed, and you made every day magical.

Magic, by definition, is using power and energy to create change. Your very childhood was spent making the ordinary extraordinary. You always had new ideas for surprises and jokes and moments that could be made extra special. You were the magic. You are magic.

You know exactly how to harness energy for good outcomes. You are doing it now. Yes, we are following the expertise of some of the best minds in medicine, and at the same time finding joy through a circumstance that has the power to break even the strongest people. You will not be broken, even as cancer takes so much from you. You bring kindness to everyone around you—from your family, friends, and girlfriend to your care team and hospital staff. We take on spreading the magic as your parents when we can, following your lead and example always. Yes, you have vulnerable moments, and you use them as an open door to discover your intuition and determine what your future holds. You endure, you persevere. You live as the miracle you are.

There is a gentle snow falling today, and yet I hear the birds and see the rays of sunshine peeking through. A new season is coming. Earth is waking up from her cold, frozen state and a new moon is coming. A new moment for magic, and I can see a return to new life ahead.

We may not ascribe to the traditional religious beliefs we both learned growing up. I felt it deep in my body when you said that in this moment, you’ve never believed less in God. What God would do such a thing as this? But maybe we can believe in us. In fact, we must. We are the living proof. Maybe we can believe in a universal energy that was powerful enough to create a rare, unwelcome genetic error inside of you, and that surely must be powerful enough to help us correct it. Maybe we can believe the essence and spirits of people who loved you so much—great-grandparents, your second cousin, your best friend, your beloved Duke—are still surrounding you, still part of you, their fibers in the atmosphere giving you love and the strength to follow this energy forward, the only way for us. We can certainly believe in your strength, your own powerful spirit, your willingness to accept what’s been offered and take every possible step to heal yourself, giving yourself the opportunity to truly live. You are choosing life. Let it be our mantra—we can believe in life, the miracle that is you, and take in the great energy available to bring you into this new season. We can believe you will be cured, and that you are only beginning. A lifetime of magic ahead.

Finding rhythm.

Sat, 04 Jan 2025 08:19:03 -0600

Peaceful in your hospital bed with a fever, I watch you resting, eyes closed, your right foot tapping in a measured rhythm. Tap. Tap. Tap. It’s almost meditative to watch you relaxing in this way. I felt nervous seeing your respiratory panel come back positive for Influenza A, but I know with the strength you’ve shown us, it’ll be an annoyance at best.

The room is silent. Tap. Tap. Tap. We both lay still in the calm after the excitement of finally speaking with your surgeon and the child life team stopping by for a visit. We have such a beautiful group of people who care about us at the hospital, and it didn’t take long for us to care deeply for them as well.

Tap. Tap. Tap. I start to think about the transformation ahead of us in just a few weeks, a reality that’s never far from my mind. Your foot starts tapping like rapid fire now, almost shaking. It mimics the feeling I get when this all becomes overwhelming again. It’s moving too fast. We aren’t just battling cancer, we have to decide on the right massive body change for you.

Tap. Tap. Tap. Your foot returns to the steady beat. It’s a metaphor for life now. We find a rhythm, it gets disrupted, we somehow find our way back again.

Aggressive tapping again. A big shift in the beat, just for a bit. And then right back to the rhythm.

It’s just occurring to me now that the word “amputation” has become a very normal part of our vocabulary now. I should be reminded how unusual it is when I see the look of shock on other people’s faces when I say it. There’s an image in their minds of what this looks like, shaped by movies and television drama filled with trauma and despair. But this story of ours is different. The idea used to devastate me, but now I have finally started think about what you’ll gain from this, not what you’ll lose.

Another chance to live, even if it’s differently from before. I realize every day in a lot of ways, it may not even be that different. You’re still very much you. All the people who love you already will just love you even more as you continue inspiring us with your resilience and fortitude. You’ll learn to use your body in new ways. You’ll discover new activities. You’ll have peace of mind that you’ve done whatever you can to minimize the risk of cancer coming back. We know there are no guarantees, but we also know we can worry even a little bit less. You will start a new chapter that nobody should have to, but for families like ours who must navigate similar challenges, you’ll set an incredible example. You will appreciate simple things in life even more than you already do. You’ll worry less about things that aren’t worth it, even less than you already do. You’ll bring a beautiful perspective to your career as a therapist, if you end up choosing that path. And really, this perspective will shape whichever professional path you choose in an equally beautiful way. You’ll impact so many lives, you’ll pursue your dreams. You won’t feel limited by the trade-offs that come with keeping your leg. You won’t just survive, you will live.

When we first learned about your cancer, we told our surgeon at the time that we were worried about soccer. He said he was worried, too. With a mega knee replacement, contact sports are not realistic or advisable. He said that with time, it would become clear that this would be okay. I knew then, as I know now, that it wouldn’t. I said then, as I do now, that I don’t just want Tommy to survive and be grateful for whatever capability he has left. Having cancer is already too cruel. I want more for Tommy than survival. I want Tommy to really live, even if it would be really hard, because he can handle hard things. I never worried about you getting through this. My fears have always been about the limitations cancer will try to impose upon you, and there are many. But we’ll find our rhythm with those challenges.

Sacrificing a leg for a life seems counterintuitive, but it’s starting to make more sense. Nothing in this experience makes sense. It’s been one of my greatest struggles with your diagnosis. I can’t find data or information to confidently guide us, we must rely on intuition now. We have to rely on gut instincts from experts and ourselves, and we’re lucky to have these. I’ll remember forever our surgeon telling us “I can’t quantify the risk for you, but I believe in my heart there is risk.” We’re already taking plenty of risks with cancer treatment, and although several other surgeons feel differently, this is one risk we don’t want to take. We know all of these experts are qualified to take care of you, but we’re choosing the one we believe cares the most about you. The one who gave you options and put you in control of your destiny. The one who didn’t dare try convincing you one way or another, simply presenting the facts, and letting you decide. The one who doesn’t react when you choose the hardest path forward, the one who creates a plan based on your choice with a laser sharp focus on how we’ll do this with the best, most innovative techniques to get you right back to your beat. We’re choosing the one we believe will get us through this overwhelming moment, and quickly into a new rhythm.

I love you.

Sat, 07 Dec 2024 08:55:08 -0600

I love you.

I love your joyful demeanor when you say good morning.

I love the way you can talk to anyone.

I love the chaos and laughter when your friends are over.

I love how thoughtful you are, always giving others the benefit of the doubt.

I love how quickly you accept the need to move forward.

I love your bald head right now, but hate that you had to lose your hair.

I love your giggles when you’re watching videos.

I love the way you care for younger kids, animals, and even adults when we need you.

I love your turbo chemo burps.

I love your style.

I love watching you pursue your dreams.

I love seeing you focused on building a Lego set or reading a good book.

I love it when you have a rare hot take.

I love your dedication to your teams, your friends, your girlfriend, and your family.

I love your scent. All of them. Your fragrance game is strong. 👌

I love the solutions you find to problems.

I love that you approach every situation fairly.

I love your bravery.

I love your magic, bringing fun and brightness to everyday life.

I love your hugs.

I love hearing “momma.”

I love it when you make things.

I love how much you love a good treat.

I love your smile.

I love it when you are open and honest.

I love that you always see the bright side. And I love when you admit something kind of sucks.

I love when you can’t stop talking and telling stories.

I love hearing your sports commentary.

I love to see the world with you.

I love your curiosity.

I love the friendship we have.

I love how resilient you’ve become.

I love your quick wit.

I love your calm and gentle approach to life.

I love your love of tradition.

I love to hear you laugh.

I love being with you.

I love the future you’re building.

I love the hope you give to us.

I love you more every minute, every day.

Longing for easy days.

Sat, 02 Nov 2024 10:00:06 -0500

Lately I’ve been thinking about all the days over the past sixteen years that have gone by mostly uneventful. Days defined by a relative ease and calm, spending time together or with our extended family and friends. There have been a fair share of hard days, no doubt. But we always found more easy days.

As you’ve gone through high school, life was evolving in a simple, beautiful way. You’ve embraced many roles in your young adult era: a gifted athlete. Dedicated friend. Supportive teammate. Loving boyfriend. Curious student. Ambitious human. Perfect son.

I wish I had the wisdom I have now to appreciate the easy days more when we had them, watching you take on these new roles and enjoy the simplicity of the teenage years. I hate that it takes a cancer diagnosis to make someone deeply grateful for simpler times. These days will look different for us in the future, but I know there will be more. It’s possible even today will be a lot like one of those simple days. I’ll appreciate every second of it.

This experience will change all of us forever. It’s a heavy thought to hold. I carry it with me at all times–my body feels heavier since we received your diagnosis on September 26. Every day I plead with someone–I’m not even sure who–to give me the cancer instead. A negative thought spiral is never too far away for me. I’ve felt anger, sadness, confusion, panic, all of these words failing to capture the magnitude of what’s happening inside. And then I ask you how you’re feeling, and the answer is often simple: there’s no choice. This is happening. You have to move forward and get through it.

This simple thought is grounding for me. I can, and do, crave every detail about this disease: treatment options, the best doctors in the world, the latest research discoveries and groundbreaking treatments, cutting-edge surgical procedures, risks and probabilities… and very little puts me at ease. There is no understanding of how young adults like you get Ewings sarcoma. It’s simple bad luck. There is not yet a “holy grail” treatment, to use the words of a doctor at Mayo Clinic, that will destroy the genetic fusion that causes this. You had a .0001% chance of getting this cancer, so what good is a 4-25% chance of any other possibility?

We now live in an atmosphere of unknowns, a space where I will never find the information I really seek. There is not much to find that an expert won’t give me when I need it. A cruel reality for a researcher at heart, but a new world I have to find some peace living in. If it weren’t for you here now, this would be a lot harder.

It’s not fair to expect you to support your loved ones through this challenging time. This is your experience. And yet you are always, always quick to offer the reassuring wisdom your team needs as we struggle with the challenge you have to face. I hope you won’t hesitate to demand the love and support you need in the hardest moments. I see your bravery every day, I’m in constant awe of the resilience you bring to your fight. You make it look easy, even as you face impossible decisions most adults will never have to make.

Nothing with cancer is easy. Every aspect of life changes in an instant. Your physical body is challenged, and your mental and emotional strength even more so. Navigating the world is suddenly filled with risks and dangers. You approach it all so simply: “I know. I’ll be careful.”

You’ve built the strongest foundation you could possibly have up to this point, and now it all makes sense. The hard days you endured before prepared you for your cancer battle. It will be difficult for me to ever stop wishing you didn’t have to do this, even though I know that you will. You’ll bring forward your calm courage to one of the greatest challenges life can offer someone, and together, we’ll enjoy so many more easy days. As I write this, I recognize we are enjoying easier moments among harder ones. The conversation about cancer is often hard and heavy. The way you are navigating this right now is different. You are not a sick child to us. You are Tommy, living your wonderful life just a bit differently, enjoying all that you can, enduring the challenges as they come. I admire you even more than I did before.

It’s been awhile.

Sun, 12 Dec 2021 11:52:13 -0600

You’re now at an age where you can read these memories and appreciate them. I figured it might be time to add an update.

You’re 13 now. In the morning, you still greet us with a hug and a smile on your face. You don’t cuddle with us for as long as you used to. You’re becoming a wonderful young man. I continue to be impressed with your kind, gentle, joyful spirit. We’re moving into the chapter of your life that is all about navigating friendships, school, and thinking about what the future might have in store for you. I continue to feel the bittersweet emotions that come with watching you grow so quickly. Our relationship has evolved into one where we can have conversations that feel bigger. We continue to learn from you just as much as you learn from us. We’re still a team, and now you’re playing a different role.

One thing about my life has changed significantly from the posts I’m revisiting from the past: I get to enjoy all kinds of quality time with you. I made an important decision three years ago that changed my life in the most positive way. I gave myself the flexibility I needed to make sure I could properly prioritize our family. I left my career in advertising to chart my own path in two businesses. With that decision, I can pick you up from school now. I can join our family happy hours at 4pm on Fridays. We navigated an entire pandemic together, experiencing the perks and hardships of being stuck at home together 24/7 for many months. It was the most challenging time none of us could have ever imagined, and yet it made me more grateful than ever for you and Gerdy. We took walks together every day. We enjoyed dinners at home together every day. We spent so much time with our dogs they can barely stand when we leave them alone now. It was a scary time and a beautiful time.

Time moves incredibly fast, and while we find new challenges in our lives now, I’m so glad I no longer feel that I haven’t given you enough of my time.

I love your honesty and how you still believe in the magic of life. I try to have the same optimism you express about the world. You give people the benefit of the doubt, and evaluate situations fairly. You take care of your family and engage with people in ways I don’t always see other kids your age doing. I really appreciate that about you.

One thing is for sure, I’m still proud as ever to be your mom. Thank you for all the beautiful things you give to the world.

Have fun and be brave.

Sun, 17 Jan 2016 10:23:11 -0600

Words I won’t soon forget, straight from your amazing heart. At your aunt Coty’s wedding in Chile, I wasn’t quite sure how you’d feel about walking down an aisle in front of a large group of people to bring the bride and groom their rings. There are many times when an idea sounds good to you, but slowly becomes overwhelming when the time approaches. This was not the case for this wedding. You practiced privately to muster the courage you needed to walk down that aisle. The most defining moment for me, however, was seeing the small piece of paper you pulled out of your jacket pocket to remind yourself to “Have fun! And be brave.”

You really inspired me that day. There are so many times in my life – my professional life, in particular – where I suffer a very unnecessary case of nerves of anxiety. Confidence is something I have to work hard to achieve for myself. I’m not necessarily “in my element” when I find myself with large groups of people. This may be the way you feel as well, and your innate sense of self-motivation at such a young age is so admirable that I struggle to find words to tell you how proud I am to see this in you. I’m sure I tell you regularly that you’re amazing, but let this post serve as yet another reminder that I feel this way. I’m really proud of you, and I’m grateful to have such a dose of daily inspiration living with me under the same roof.

Thank you.

Fri, 18 Sep 2015 22:23:08 -0500

It’s one of those days again where I take a moment to reflect on recent events, and let the burning sense of failure overwhelm me entirely.

It wasn’t all that long ago when I felt this way, but for a very different reason. For awhile there, I was terrified that maybe I wasn’t giving you the time and attention you truly deserved. The possibility that you might look at me one day and see a complete stranger kept me up at night. Things have changed a bit.

Work hasn’t gotten any more manageable. I’m still absent for at least one day or even a few each week, sometimes physically, other times mentally. To be honest, I often forget entirely to ask if you have any homework. You forget to brush your teeth ALL. THE. TIME. You sneak into our bed almost every night, and I never drag you back to your room. I bet I can count on two hands how many times we’ve brought you to school only to realize there is no school that day. We’re so unorganized that it’s probably painful for others to see. I’m so deeply grateful for Gerdy, because without him, our lives would be a disaster. Sometimes I think we might be a functional disaster of a family. But then a day like today comes along, and just as I’ve finally decided that my life is in shambles, you come along to remind me everything is fine.

“How are you Mom?”
“Good, buddy.”
“No you’re not. What happened?”
“I’m having a tough time, and I think I’m not doing a very good job with everything I need to do.”
“What? How can you think that? You’re doing the best job.”

I begin to cry because, well, you’re seven and I’m emotional, so I’ve decided you can really bring some perspective to this situation.

“Don’t let anyone tell you that you’re not doing a good job. You can always do better. I think you’re the best mom, but you can always do better by telling me what more words mean. You’ve been doing that since I was five, but you can always do better by telling me more. You can also help me find more ways to do math better.”

I think you’re right, Tommy. I can always do better. Everyone can always do better. That’s a nice idea, and it’s one that I believe is true.

“And just remember this, Mom: tomorrow isn’t going to be today.”

Today you helped me realize something important. Maybe other moms get to spend more time with their kids than I do with you. I’m sure many other parents have a far better grasp on their child’s school and activities than I do with yours. But thinking about how I stack up against everyone else isn’t helping me, and it’s not helping you. What other families do well might not be right for us. I’d like to just get better at making you better. I want to teach you the meaning of even more words, and find better ways to help you with math. When I focus on making you better, I get better.

I used to worry that I was failing as your mother. Today, I no longer feel that way. While I don’t know that it’s been my direct guidance as much as the support system I’ve helped provide, you showed me in an overwhelming way that as parents, so far, your father and I have been incredibly successful.

Last night, your Dad and I watched the movie...

Sat, 31 Jan 2015 23:13:48 -0600

Last night, your Dad and I watched the movie “Boyhood.” We felt thrown off several times during the story as the boy grew up so very quickly. “Wait!” I’d say as the story progressed. “He’s already aged again? It’s happening so fast.”

It didn’t take long for the heartache to begin. I couldn’t stop thinking about how similar this situation is to our lives with you.

I’ve been realizing how much our conversations have matured. You’re still very much a young boy who believes in magic in the world. Your heart is as kind as they come. I can see how important it is to you that everyone be kind to one another. You’re so good, there isn’t an appropriate word to describe just how good.

I wonder how quickly this stage will slip away, just like all the others before it. We really can’t get anything past you anymore. We have to teach you with reason and honesty. My focus has widened beyond protection to preparation. There’s a great big world out there, and before I know it, you’ll be heading off into it without me constantly by your side.

I have to try to escape these “what if” and “it won’t be long” thoughts and feelings before they consume me entirely. Almost every single night, you fall asleep next to me in my bed. We’ve always let you lay with us for a bit and never quite cared whether it’s a good or bad habit. We know our time spent literally at your side is limited. I’ll let you fall asleep with your head on my shoulder until you simply don’t want to anymore, because I know I’d always regret not holding you closer while I had the chance.

“this is my friends list.”

Mon, 14 Jul 2014 21:19:19 -0500

“this is my friends list.”

Your Sixth Birthday - From Your Dad

Sun, 13 Jul 2014 23:16:46 -0500

Tommy, I am writing this as you lie asleep, one little hand curled under your cheek and your blonde hair damp on your forehead. I snuck quietly into your room. Just a few minutes ago, as I sat working on the computer in the living room, a stifling wave of remorse swept over me. Guiltily I came to your bedside. There are things I was thinking, Tommy:

I have been hard on you. I scolded you as you were dressing for school, you were taking too long because you were distracted with all the toys around you. I got frustrated at you for not tying your shoes properly. I called out angrily for having some of your things on the floor and when you did not clean up your room, and at breakfast, because you spilled on your shirt, you ate your food slow, and you put your elbows on the table. You didn’t bring your backpack and you forgot your lunchbox on the table. And as you started off to go to school and I left for the car, you turned and waved your little hand and called, “Goodbye, Gerdy! I love you” and I said in reply, “I love you too. Hurry up, cause I am late for work!”

Then it began all over again in the afternoon. As I came back to pick you up, I noticed you were down on your knees and there were holes in your pants. I humiliated you before your friends by marching you ahead of me to the car, while I was saying: “you have to be more careful and take care of your clothes - if you had to buy them you would be more careful!” Imagine that, Tommy, from a father!

Do you remember, later, when I was reading something on my phone, how you came in timidly, with a sort of hurt look in your eyes? When I glanced up over, impatient at the interruption, you hesitated to get close. “What is it you want?” I asked. You said nothing, but ran across in one tempestuous plunge, and threw your arms around my neck and kissed me, and said: “Good night Gerdy!”, and your small arms tightened with an affection that only you have in your heart and which even neglect could not prevent. And then you were gone, running up the stairs to bed.

Well, Tommy, it was shortly afterwards that I turned off my phone and a terrible sickening fear came over me. What has habit been doing to me? The habit of blaming, of reprimanding - this was my reward to you for being just a boy. It was not that I did not love you; it was that I expected too much of you, treating you as if you were an adult. I was measuring you by the yardstick of my own years. And there is so so much that is good and fine and true in your character. Your little heart is as big as I could describe. This was shown by your spontaneous impulse to rush in and kiss me good night, with your unconditional love, like nothing else matters. I have come to your bedside in the darkness, and I realize how wrong I have been acting.

Tommy, I know you would not understand these things right now. I love you more than anything and from now on I will be a real daddy! I will stop getting mad for no reason, I will stop being impatient, and suffer when you suffer, and laugh when you laugh. I will bite my tongue when impatient words come. I will keep saying as if it were a ritual: “He is my little boy!”

I am afraid I have visualized you as a man. Yet as I see you now, Tommy, curled in your bed I see that you are still a baby. Yesterday you were in your mother’s arms, your head on her shoulder. I have asked too much, too much.

I can’t wait to see you growing up and be your best friend. Happy 6th Birthday!

I'm sorry.

Mon, 24 Feb 2014 23:07:11 -0600

Tonight I realized that I owe you an apology. This is for all of the times I’ve gotten frustrated with you for being a “pest.” It bothers me when you don’t feel like talking and you get short with me for asking questions (which is ironic because, as an introvert myself, I should be more understanding, but that’s a post for another day). And yet many times when you arefeeling up for a chat, you simply can't stop talking. It doesn’t take long for me to get overwhelmed by that. You’re damned if you do and damned if you don’t. I feel bad about that, and I’m trying very hard to focus on you and be more understanding when you have a lot of things to share.

The truth is I absolutely love talking to you and hearing everything you have to say. Your energy and personality are magnetic. I’m proud of you and the open, honest relationship we have. You’d think a chatterbox like yourself would be and easy thing to handle. But honestly, sometimes it’s tough.

It’s very important for us to teach you good manners and patience. But it’s probably just as challenging for us to teach as it is for you to learn. It occurred to me this evening that patience is something you always have to work on. In fact, I’m still learning patience myself. I realized today that you are teaching me just as much as we are you. It may take a lifetime, but it’s something we’re doing together, and I have to appreciate that. It’s a really cool thing if you can recognize it for what it is.

What seems like bickering is actually growth and improvement for both of us. When I look at it this way, I feel bad for being so hard on you. Actually, I feel bad for being hard on both of us. I’m sorry for that. More importantly, I appreciate all the amazing things you do to make me a better person. You don’t realize it yet, but you certainly deserve the credit.

As we lay side by side in bed before you fell asleep tonight,...

Tue, 10 Sep 2013 22:05:28 -0500

As we lay side by side in bed before you fell asleep tonight, you told me:

“Sometimes at my after school program, I draw pictures of you and me walking up to our new door step together, because I miss home.”

I feel the same way, love. I just don’t have the pictures to show for it. Not yet, anyway.

Your first sick day. Just one week in to Kindergarten.

Mon, 09 Sep 2013 19:21:44 -0500

Your first sick day. Just one week in to Kindergarten.

Enjoying us.

Fri, 06 Sep 2013 11:23:34 -0500

Lately I’ve been able to do something that I haven’t had the opportunity to do for a few years. I’ve been able to arrive home at a decent hour, just as you’re coming home from your new after school program. I’ve been able to focus all of my attention and energy on you (and, of course, your dad and the pets…). We’ve been playing, coloring, watching movies together and talking about your day. You’ve been telling me funny stories and asking me to read books with you.

You’re growing into this mature boy who almost freaks me out, because I swear it was just a few days ago that you were a toddler. You say things that genuinely crack me up on a regular basis. The amount of time I spend simply being your friend is starting to become more than the amount of time I spend being your bossy mother. And I love that.

It occurred to me yesterday that we’ve started a new chapter in our lives together. We have a new home. I have a new job. You are attending a new school and making new friends. Your Dad has finished school and is about to make his next move. It’s a very busy but exciting time for us. And yet we still find the time to wind down, relax and fall asleep by each other – always with smiles of pure satisfaction on our faces.

I adore you, kid. You can’t fully understand the joy you bring into our lives quite yet. But one day, you will.