Focusing on the Time You Have, Not How Much You Have

As I sit here writing this my brother is on a respirator in a hospital room. He hasn’t been able to breathe completely on his own or wake up fully in three days. His wife sits, sleeps, and prays by his side. My parents do the same.

Family members and friends have poured in to see him over the past three days. He is loved because he has loved. We are broken because he is broken. We have hope because he has hope.

Gabe is not just my brother. He is my best friend. My best man at my wedding.

He’s also my hero, for reasons most won’t be able to understand.

Ten days ago Gabe and his wife, Kristen, headed home from the hospital. We’d be given news that over 50% of his liver was now compromised by the cancer that was in his body. His lungs had collapsed weeks before due to cancer in his chest. He hadn’t been able to walk since June 12th due to cancer in his leg and along his spine. He had three surgeries to get rid of necrotizing fasciitis, and a wound to show his battle.

The day they broke this news, Gabe and Kristen brought us all into the hospital room. He told each one of us he loved us, then asked what we were getting for lunch! He was hungry for food and to be with all of us. Their faith filled the room with peace.

They arrived back at my parents’ house on August 16th, Gabe’s 33rd birthday. We celebrated, sang, and ate together as my brother smiled, happy to be home. Many people were able to come and hang out with Gabe (he’s got a lot of friends and family!) over the next few days.

Everyone wants more time with Gabe, we all say there is not enough of it. Yet, my brother has shown from a very young age that it is how you spend that time that counts.

If you don’t know Gabe you may not realize that he has had to live his entire life NF1. As a child, Gabe was diagnosed with Neurofibromatosis, where tumors were attached to his nerve endings on the inside and outside of his body. He grew up getting MRI’s, chemo, and surgeries on his eyes and his spine. He spent an entire year as an adolescent taking interferon treatments every day to slow the growth of these tumors.

Despite growing up in hospitals, Gabe’s passion for life was always present with friends and family. He was the kid that could have done anything with his Make-A-Wish opportunity, and he decided to take his entire family on a vacation.

Flash forward 10 years later. Gabe had started a business, was working full-time and had met this amazing girl (more on that later!). No one expected his next big diagnosis to be cancer.

When Gabe started this journey, Kristen was his girlfriend and soon to be fiance. They quickly got married and began the journey of surgery and chemo against cancer together. Their love story is a unique one (but if you know either of them, it also fits perfectly!). Their paths crossed many many MANY times over their lifetime but it took a random message (Gabe has some game) on OKCupid to bring them together. Then, like an OKCupid commercial, the rest was history 🙂

As Kristen says: “Gabe’s unshakable positive attitude strengthened me, his parents and everyone he was connected to through this tough time. A warrior child turned amazing man.”

A year after this initial diagnosis of testicular cancer, Gabe and Kristen shared the great news with family and friends – the chemo had been successful. Gabe and Kristen were able to start working again and even take a long overdue honeymoon as husband and wife.

That’s why these past six months have been so incredibly challenging. After months of enjoying life together, working with the youth group, and beginning their life as a family—Gabe’s health started to deteriorate. His right leg became numb and then in April a shooting pain shot across it that was unbearable. We rushed him to the ER to get treated and find out what was happening.

After many tests, consults with teams of doctors, they explained that Gabe’s cancer was back, this time in many places.

The cancer took form in a nerve sheath on Gabe’s leg and spine. His L5, C3, and C4 are all impacted deeply by malignant tumors that are taking away movement and causing great pain. Additionally, the cancer was back in his liver and lungs.

Gabe’s faith has not wavered. His love for his wife, for his family, for his friends has never been stronger.

And in the midst of all this pain and struggle, he has not let his condition define who he is. He has never let his condition define who he is.

A few months ago he wrote many of us an email titled, “A Letter From My Heart”.

Here was my brother, told of his cancer returning, sitting in a hospital room, writing a letter to me about fear, faith, and love. Yes, he is my hero, but for so many reasons.

I see how the fear did not stop Gabe from living life.

I see how Gabe is strong for our family. I see him trying to protect us.

I see a kid who took his whole family on a vacation out of love when he could have done anything with a make-a-wish.

Gabe has been my growing up partner from Day 1. I’ve watched him get surgery, take needles every day for a year, do MRI after MRI, and deal with cancer.

But, I’ve never defined him by NF or any condition.

And I never will.

Because he never has.

I’ve seen him make friends with almost everyone he has met. I’ve seen him destroy me in video games without a second look. I’ve seen him try out for a basketball team and deal with being cut by an awful coach, only to bounce back and take the positives. I’ve watched his intelligence shine through poker. I’ve seen my brother start his own business, pivot that business, and sell that business when the time was right.

I’ve seen Gabe work hard every day for himself, for his wife, for what he believes in.

Most of all, I’ve seen my brother handle life like a chef and not a cook.

My favorite writer in the world is Tim Urban. He explains the difference between a chef and a cook like this:

The words “cook” and “chef” seem kind of like synonyms. And in the real world, they’re often used interchangeably. But in this post, when I say chef, I don’t mean any ordinary chef. I mean the trailblazing chef—the kind of chef who invents recipes. And for our purposes, everyone else who enters a kitchen—all those who follow recipes—is a cook.

Everything you eat—every part of every cuisine we know so well—was at some point in the past created for the first time. Wheat, tomatoes, salt, and milk go back a long time, but at some point, someone said, “What if I take those ingredients and do this…and this…..and this……” and ended up with the world’s first pizza. That’s the work of a chef.

Since then, god knows how many people have made a pizza. That’s the work of a cook.

The chef reasons from first principles, and for the chef, the first principles are raw edible ingredients. Those are her puzzle pieces, her building blocks, and she works her way upwards from there, using her experience, her instincts, and her taste buds.

The cook works off of some version of what’s already out there—a recipe of some kind, a meal she tried and liked, a dish she watched someone else make.

Gabe is a chef, not a cook.

He has always taken what life has given him and created something unique. I’m constantly in awe of how he does it. In fact, it challenged me in many ways to make life great every single day regardless of the circumstances.

This current situation sucks. It’s unfathomable. It makes me sick to my stomach to think about what him and Kristen are going through.

Yet, here he is, sending letters of love to those closest to him. Here is my brother, when the rest of us would be hiding from the world, inviting his family over and sharing his story of faith and belief. Here he is, in what the outside world sees as a potentially dark and depressing time, finding joy in what life has given us.

Yes, it doesn’t matter if you are talking about working with kids at school, or spending time with friends and family, or any situation.

We always complain: There is never enough time.

But, here we are with time on our hands. How we spend it and who we spend it with will always be more important than how much we have.

That’s a lesson I learned from my brother. A lesson all of us should remember.

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Join the discussion 9 Comments

  • Pam says:

    AJ – your brother’s story defines the best of what is inside the DNA of humans. He was forged in courage and resilience. He’s fortunate to have you as his big brother and you to have him. Thank you for telling his story – he makes the most of time as should we all. Peace to Gabe and your family and you.

  • Nancy Haring says:

    AJ…my heart and soul feel your pain and embrace your love for Gabe. I so often remember when Gabe was diagnosed. He was in second grade. You and I were in third grade together. You shared with me the difficult news and said you wished it was you, not you brother. Such deep love at such a young age! It still leaves me speechless!
    I was so blessed when Gabe was in my third grade classroom…always smiling and brave. I remember him having eye surgery and wanting to be right back at school. As Mom brought him out to our phys ed class, I wanted to sit with him on the bench while we watched the kickball game. Oh no, not Gabe! He insisted and Mom bravely agreed as he ran out into the field to play. Gabe’s bravery and positive daily outlook made my love and respect grow each day.
    I was so blessed to teach all the wonderful Juliani kids and team up with their awesome parents.
    The old saying, the apple doesn’t fall far from the tree. Each and everyone of you are amazing people. Such an amazing family.
    I send you love and prayers at this difficult, to say the least,time for Gabe, his family, and friends!
    Love, Nancy Haring

  • Lynn Coggin says:

    “A warrior child turned amazing man.”…these words struck me so…so beautiful! AJ, your words and thoughts in this post are so incredible. The strength Gabe, Kristen and your entire family has shown to everyone is so precious and we should all live like Gabe…focusing on time we have, not on how much time we have. I am sending positive thoughts and prayers to you all and I hope you feel them. My best to Gabe and the entire Juliani family today and always.
    With love,
    Lynn

  • AJ that is beautiful. We continue to storm the throne of grace for Gabe, Kristen and the family. God is good all the time even when we don’t understand His plan. Praying for His peace for you all. Live yoy!!

  • Andy says:

    This is a beautiful tribute. I’m so sorry to hear about your brother. My brother, Ben, was a “chef” too. I miss him.

  • Paige says:

    Beautiful words to honor Gabe. There is nothing quite like a sibling. Sending my love and prayers to your family.

  • Rebecca says:

    A.J. I’m so sorry for your loss. This was beautifully written and trully reflected who Gabe really was! He touched so many people just being himself and will be greatly missed.

  • Jo Spark says:

    Thank you for sharing the beautiful story of your brother’s life with all of us. I pray that his life will be a blessed memory for you and your family. I know that his story has certainly enriched my life, and I will remember and relay his message to those with whom I come into contact through my words, deeds, and actions.

  • […] My brother was a chef in every sense of the word. He took the circumstances that life gave him and turned them into something wonderful and new and beautiful. […]

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