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May 19-25

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A year ago today we found out that Roman had leukemia. This past month and especially this week has felt heavy. Memories of the doctors office where we found out there was a tumor in his chest when Gage and Roman were in a room right next to us have been replaying in my mind. The pangs of fear in my stomach and heart that I haven’t felt for almost a year are back. Last night before bed I just kept thinking about how a year ago, we had no idea what awaited us the next day. Going to sleep with complete ignorance our hearts would be shattered in mere hours. I had no idea our lives would change forever. We had no idea the battles, the wars Roman would fight over the next several hours, days, weeks, and months. We had no idea.  I want to go back and tell that Jaisa that her life was going to fall apart, but it would be ok. Better than ok. Amazing. I want to tell Charlie that Roman will be ok. That Roman will still accomplish every dream he can think of. I’d tell Gage his brother will be different for a bit but to rest up, because he’d be back with otherworldly energy. And I’d tell Jonesie to chill out a little, but that I’d need every snuggle and kiss he could give me. 

I’ve written a lot about how this experience has taught me about the dualities of life. I used to have a visceral reaction to fear, to sadness, to strife. I certainly don’t like those feelings, but I’m not scared of them anymore. I’m realizing that it’s impossible to not look at Roman’s beautiful rosy cheeks, without remembering how pale he was. I can’t admire his strong growing body without the pain of how frail he was. I can’t hear his adorable squeals and laughter without the realization I went almost ten months without hearing it. I can’t think of the fear of those early hours and days and not feel complete reverence recalling the miracles that happened before our eyes. It’s both the absolute worst and most incredible thing that’s ever happened to us. 

I watched Charlie hear his son might not make it and then watched him snap into faith and belief in seconds. I remember us both breaking and falling apart as they wheeled our son away in the middle of the night, anxiously watching the waiting room doors for hours. I heard the words “we will do the best we can but Roman is in a very dangerous spot right now” and then watch his tumor disappear in days. I’ve watched both of us completely transform who we are as individuals and most importantly, parents. When I’m at the brink of losing my marbles during Jonesie’s bedtime, I often think about when I was holding Roman in the hospital, that I would have given anything to be able to sing another song to Roman when he was that age. We are more patient, compassionate, and have our priorities in check despite being under unrelenting pressure for so long. I miss the freedom of no medication, but am thankful his treatment is no longer life threatening. I watch Roman kiss his brothers and I mourn that we lived in fear of germs and sickness for almost a year. I will never not have little doubts that creep in, but we now really know the meaning of faith over fear.  My heart is still broken, but it’s stitched up stronger than before. All of the pain and struggles have made life just that much more precious to us. 

Last year, on this day, we were headed to Children’s. A few days ago, on Saturday, we had the privilege of going to the Children’s of MN gala instead of the Children’s of MN ER. Quite the difference. We celebrated Roman’s exceptional recovery and the magical hospital where angels live. Late in the evening on Saturday we were hanging out with our friends Mara and Cori (and their husbands) who have been pillars of faith and strength for us, both experiencing their own traumatic events with their own children over the years. I overheard a woman say goodbye to our friend Mara. Mara, who chaired the event and is on the board of the Children’s Foundation, thanked this woman for her generous donation. I have absolutely no idea what compelled me to interject myself into that conversation, but I’m glad I did. I told her that her donation directly impacted my son, who is currently getting treated at Children’s. “For what?” She asked. I told her Acute T Cell Leukemia. Without blinking she said “that’s exactly what my son had…..he just turned 32.” What’s nuts is that T Cell Leukemia is fairly rare. It only makes up about 20% of the cases. We haven’t encountered a single person with this same diagnosis, until now. I sobbed in her arms for what felt like an hour. She held me, truly knowing exactly what we were experiencing. We exchanged stories of our lives and journeys, almost identical in so many ways. I was meant to meet Cathy that night and am thankful two dear friends were there to experience the magic of that interaction. I will never stop being in an awe of the miracles that Roman inspires for people around him. 

A year later and, all is well. 

PS - Roman’s ankle reflexes are back. It was fun being in clinic and seeing the shock on everyone’s face when they told us this. Apparently they aren’t supposed to come back until a year after treatment. Roman keeps doing what he does. Amen, little man. 


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