A Letter from Dad

To My Kids: 

Today is Hazel’s birthday, a celebration of her presence on this earth, an anniversary of the day that we met the little firecracker that would forever change our life, for the fourth time. Our culture celebrates birthdays for a number of reasons, the least of which is often the fact that we simply “survived another year”, however this year, in our family, that reason more than any other seems extremely poignant. On this day that is meant for celebration and happiness, presents, family, laughter, and love, I am compelled to address this letter to all of the special children in my life. May my words impart some sort of guidance, some level of wisdom as you grow into the leaders of our tomorrow.

I reflect on my 34 years and cannot remember all of the details, but major events – births, deaths, triumphs, successes, surprises, and devastation – create the story of my life. Certain years have been better than others, but they are all my years, my memories. Some memories are filled with pain and I will look back on 2017 with vibrant, mixed emotions. Our family has witnessed incredible heartache, agony, fear, and a roller coaster of successes and setbacks in 2017. The journey from April 17^th to today has seemed long and arduous, but has passed in mere seconds. In these six months I have aged easily two years, the burden of worry and sorrow weighing heavy on my brow as we have fought the diabolical foe of childhood cancer. I have often seemed distracted, irritated, tired, unhappy, or simply beaten, but please understand that has nothing to do with you and how proud I am of each of you.

My beloved little ones, you mean everything to me. You are my entire world, my breath, the beat of my heart, the joy in my soul. All that I do is for you: the late nights and long days, the trips to far-away places, the pain, the anxiety, and the sadness I bear only so that your lives may be made easier. Since the day I met each of you, I knew that I was in the presence of greatness. God has touched each of your lives in numerous ways and I hope you spend the rest of your days walking with Him.

This year has been tough. It may seem that since Hazel’s diagnosis all of my focus has been on her, but please know I would do the same for any of you. I would at any second trade my life for each one of yours, without hesitation, without thought. I have often prayed those very words as I sat through every surgery, every infusion, and every doctor visit with Hazel. I prayed it as I sat in the room next to Gideon writhing in pain from appendicitis, and I would again pray it for each of any of you in pain. Being so young, you cannot understand the connection that I have with you, but I know you are aware of it. I see it in your eyes, feel it in your touch, hear it in your voice. You are more than part of me, you are all of me, everything good about me. You are the greatest thing I have ever done, you are my life’s work, and I marvel everyday because I know you are each so much better than I. I can’t wait to see what you do in this world and I feel privileged to be part of your lives.

I want you to know that I see you. You are all special to me and it is important that you understand some of the reasons why:

Paul, you were my first glorious glimpse into fatherhood. I was beyond excited, but scared, unsure, perhaps intimidated, but you calmed me. You showed me I had a greater purpose and I immediately fell in love with you. You are the most compassionate person I know. Your heart is so much bigger than mine and you have such empathy for those around you. People are drawn to you and will follow you because they trust you and know you are a man of character. Your grin is infectious and can turn the toughest situation into a bearable one. You are always concerned about Hazel and you two have such an incredible connection. She comes to you for protection, love, and guidance. You comfort her always and I have no fear that some day when I am gone, you will live on as her champion.

Gideon, you are strong and rational. You are confident in your decisions and are not afraid to stand up for your opinion. You buck the norm and unabashedly present facts to support your point of view. You are also loyal and love fiercely. Your friends hold you in confidence as someone they can trust and who will be there for them no matter what. You are intuitive and constantly think of practical things to help Hazel stay safe and healthy. The week after Hazel was diagnosed with cancer you presented to your class so that they would understand what your little sister was going through and how you were going to keep her safe. Hazel looks to you for help in many ways and you are so  tender and gentle with her. You have shown her what it means to be brave and I am assured that your relationship will only grow stronger as time passes.

Aurora, you are Hazel’s best friend, now and always. You are bubbly, fun, vibrant, and gorgeous. You stole my heart from the first time our eyes connected. Even today I fear if I stare into your deep brown eyes for too long I will be swallowed up by their grandeur. You are confident and have an amazing wonder for life that constantly brings joy to others. You explore and experience our world in new, exciting ways that makes the mundane seem spectacular. Hazel looks up to you and mimics all you do. You have taught her that all situations can have a silver lining. You will forever be Hazel’s teacher and a close confidant that shrouds her in love.

No one could have prepared your mom and I for dealing with cancer, nor could we have imagined that some of the most difficult situations aren’t even in a hospital. They are the intangibles, the collateral damage of dealing with a life-threatening disease that is all consuming, touching every aspect of life. Your lives have been touched by so many, but none so much as your cousins. We have spent much of this year “quarantined” from the cousins for one reason or another, all cancer-related. We have shed many tears over decisions that we have had to make this year, including missing birthdays, family events, and experiences with the ones that have always been so close to us. I have a few words for your cousins during this time of reflection as well.

Kip, you were my kids’ first friend. You are so smart and loving and kind. You yearn to be with my children and some of their fondest memories have been spent running around the Big House escaping “The Monster” with you. You all have grown up together, experienced life together, and continue to learn from one another. You taught all of my kids a sense of community, and I will never forget that. Upon Hazel’s diagnosis you were worried, concerned for her and for your other cousins. The first time you saw Hazel after she got sick was hard, but it had no bearing on your love for her. You have remained an important part of her life and have helped instill some normalcy to an otherwise abnormal time.

Grace, I worry as much about you as I do my own children. You are curious and stubborn, but love to have fun. Your nose crinkles when you smile and your eyes tell of a far greater intelligence than any of us can possibly know. You love my kids, ache to be with them, if only in proximity because you share a common bond. You and Hazel are closest in age and she could not wait until you could walk so that you could explore the world together. When you two visit, the air is filled with eruptions of giggles and squeals, laughter and the pitter-patter of adorable little feet. I know you don’t understand what Hazel is going through right now and that is for the best. You take Hazel’s mind off of the struggles of her everyday life and allow her to be a kid again. She loves you and always will.

Sam, you are boisterous, infectiously happy, and fearless. You are the luckiest of us all. You will grow up not even remembering that Hazel experienced cancer, save for some photos, my writings, and stories that your family tells you over the years. Hazel loves you and has always called you Baby Samuel. She has gotten to be your protector, caring for you as her own precious package of excitement. Your eyes light up when you play with Hazel. You were a gift to her, the opportunity to be older and to teach someone things that SHE has learned about this world. She is your mother hen. I pray that all of your memories with Hazel will be happy ones and that someday, your kids and hers will play together as you two do now.

Hazel, finally my dearest I am to you. Someday all that will be left of your cancer will be scars. Scars can be ugly and they can be painful, but they tell a story. Your scars will be a tapestry of triumph, a tale of love that is woven throughout generations. Your scars will be nothing but shadows of the healing grace of God and the strength of human nature. You are now and have always been beautiful. You are focused and unwavering in the face of adversity. You are strong…so much stronger than I. I admire you and you lead me in reverence during every day of this journey. I am so unbelievably sorry that I cannot protect you from this, but I am doing my best to get you through it. I would do absolutely anything to take your place. I am sorry that you hurt, I am sorry you miss out on life right now, and I am sorry you have cancer. I love you and I promise to never leave your side.

The reach of cancer is inescapable, it is perpetual, it is everywhere. Just within our family, Hazel’s cancer will have a presence in nearly a dozen children’s lives before the age of 10. Some of you will see it first hand, others will hear stories and see pictures, but you will all have more experience with cancer than I did as a kid. That seems sad and unfair, but perhaps some good can come from it. I hope Hazel’s story will give you strength. Maybe her scars will teach you how to heal and maybe her struggle will teach you to be strong. I do not know what the future holds, but I believe in you, my kids.

I still hate cancer, but I love you all deeply and love will overcome.

Happy Birthday Hazel, just one of many.

All My Love,

Dad

“Love…always protects, always trusts, always hopes, always perseveres. Love never fails. And now these three remain: faith, hope and love. But the greatest of these is love.” – 1 Cor. 13:6-7, 13

True Power

I am not afraid of tomorrow, for I have seen yesterday and I love today. - William Allen White

I am not overly philosophical, but watching my angelic child suffer from blood cancer has provided many opportunities for me to explore my inner demons. I have learned many things about myself and about human nature in the past five months, the least of which is not the strength we can draw from one another. Dealing with a life threatening disease in any capacity causes one to pause in deep contemplation, if for no other reason than to attempt to make sense of your current situation. I have struggled with many internal battles, none the likes of what Hazel is dealing with, but emotionally I have been torn down. I have had my morals rocked, felt my inner strength tested, and dealt with the nagging enemy of depression that is always just a few steps behind me, nipping at my heels.

My contemplation began in the early days of Hazel’s diagnosis, touching on the realities of life and death. How would I deal with outliving one of my children? What would it do to my faith? Would I ever recover from such a horrible, unimaginable tragedy? I never found the answers to those questions. I suppose I could say that I forgot about them as Hazel’s condition improved and we moved further away from the remote possibility of losing her. But that isn’t entirely true. The truth is that I never fully answered those questions because I am much too afraid of exploring those dark depths of my heart. Selfishly I never want to experience that feeling of loss; attempt to heal the gaping hole that not having Hazel would leave in my life. It’s as if by exploring those thoughts I somehow give power to the cancer that could rip her from my grasp; that by acknowledging her plight it becomes more “real.”

I have often waxed nostalgic in this space about what cancer “does” or what it “takes” from us. There is no doubt that cancer has changed my life, but it is only recently that I have truly begun to understand on a highly conceptual level what a disservice that type of thinking has done for me, and for us all really. Like many of you today, I was afraid of cancer. It was the only thing that I prayed my daughter did not have as I entered the hospital and began the process that would eventually lead to her diagnosis. When the news was delivered I thought nothing could be worse, there could be nothing more terrible than being told Hazel had cancer. My fear stemmed from my limited understanding of cancer and how it is treated. It was tied to what I had experienced in the past with my grandmother, a heart-wrenching, physically-painful fight that ended in loss. In short, my fear was based on the unknown, not the known.

My fears are not unfounded as we know that for as many lives that have been saved within the walls of Nationwide Children’s Hospital, just as many have been lost. Every time we visit the hospital, we walk the same hallowed halls that hundreds of other parents have walked, many of which were experiencing the worst days of their lives. Death is a difficult concept to bear, but when it is associated with children it becomes the purest evil that I believe our world can see. To watch someone lose a child is to see them be destroyed from the inside out; to literally lose the will to live their own life. Suddenly nothing matters anymore. They have no goals, no concern for what is going on around them. They become a shell, a ghost of their former selves with a far off stare of hopelessness.

A lot has happened in our cancer journey. We have finished a treatment phase, went through a long purgatory waiting for blood counts to rise, successfully started another phase, finished that phase, and are now in the middle of a more intense treatment regimen. We have seen additional side effects come and go, dealt with common bumps, bruises, and fevers; visited the hospital more than seems possible in such a short time.

We are adjusting to this life and learning what it means to live with cancer. I hate to say it, but at times this life feels almost routine. We have never been where we are now. We feel suspended emotionally. Not sad, not happy, but just here. For the most part, our life now only includes cancer and doesn’t totally revolve around it. But there are still days that we live with fear.

Our fear is what gives cancer its power. By fearing cancer and what it brings, we give it authority over us and over our lives. The reality is cancer is nothing more than a genetic mutation. It doesn’t choose its victims, it doesn’t fight with any type of focus, it is not malicious. Cancer simply is. We attach power to the word with our own emotions, but we can choose to take that power back. We can choose to manage our fear, control our emotions, and understand that cancer is a malady of this earth, and this earth alone.

I have for too long made cancer the main antagonist of this struggle. I have focused my story on the villain, and not the heroine. The reality is that cancer has taught me nothing. Cancer is nothing. Cancer just happens, it’s a disease, a meaningless biological change that affects a human body, but cannot touch the human spirit. Hazel has shown me what it means to be strong; she has shown me what God can do with a little faith and a lot of love.

Inside of Hazel’s tiny, frail frame, God has housed a spiritual powerhouse. In her birth, she served as the anchor for our family, the final stone to complete our small family arch. If her mother and I are the foundation stones, Hazel most certainly serves as the keystone. She locks us all in place and allows our family to bear the weight of the world as it rains down upon us. With her here, we shall never fall.

Even in her sickness, Hazel has united a diverse community, a family of believers and non-believers, strangers, friends, and advisors all connected through their love and care for her well-being. Hazel has taught us to be strong, to stand up for what we believe in, and to use love to combat the forces of evil.

Since her diagnosis, my perspective of Hazel has changed. I first thought of her as a cancer-stricken victim, fighting for her life against an unfathomable foe. She was so weak, so fragile, as she lay alone in her hospital bed. I wondered, “How could someone so small battle something so big?”

As her treatment progresses, I have begun to see Hazel for what she truly is: an inspiration, a fighter, a warrior impervious to the struggles that she faces every day. She has shown me what it means to be created in God’s image. She feels everything, sees everything, and experiences everything in life with incredible gusto. Hazel has not conquered her fear of cancer, she just never had any in the first place, and that is true power.

“…but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” – Isaiah 40:31

The Passing of Time

It has been said, 'time heals all wounds.' I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone. ― Rose Fitzgerald Kennedy

Time is an ever-fleeting commodity, a proposed theoretical record, a temporal measure of our existence on this earth that can be experienced by individuals as well as academically understood on a worldwide community-based level. We each experience our time differently. Time does not change. Minutes do not speed up or shorten, time is not lost, nor is it stolen from us. Time can feel limitless, stretching across an immensity so consuming that a second can seem to take forever to pass. But time can also be so transitory that a year can feel like a single passing moment.

We all have the same number of hours in a day. No one has more or less time than anyone else from a scheduling standpoint. It’s easy to think of our “time” as simply the days, weeks, and months that are filled with jobs, parties, hobbies, responsibilities – the things we put our efforts into to create a “life”. But what is a “life”? What does it mean to live? I think it means to be grateful, to celebrate, to rejoice. I think it means to experience as much goodness as we can on this earth. I think living means to enjoy our blessings, to love our family, and to draw closer to our friends.

Hazel’s battle with cancer continues to teach me many things. Since her diagnosis, I have seen my young daughter in a new light. I have first thought of her as a cancer-stricken victim, fighting for her life in the direst of circumstances. I then saw her as an inspiration, a fighter, a warrior impervious to the struggles that she faces every day as her treatments continue. But today I see Hazel much differently.

Hazel is now my teacher, a sage mentor that delivers lessons not through what she says, but through her actions. At just 2.5 years old, Hazel has already experienced more than I have in my 34 years. She has seen more specialists, undergone more medical testing, and fought more battles than I have. Her pain has been greater, her tears richer, her struggles more relevant. And yet, her joy and love of life continue to bubble to the surface, overpowering all the sadness that surrounds her current situation.

Hazel remains an enduring testament to thankfulness, childlike wonder, and grace while dealing with a terrible, life-threatening disease. Hazel has shown me what it means to be created in God’s image. She laughs, dances, and giggles often. She loves fiercely. She is compassionate, she is empathetic, and she is trusting. She is, perfect.

Over the past months, I have said “Cancer teaches me this” or “I have learned this from cancer”, but that puts my focus in the wrong direction. I have for too long thought of cancer as the biggest concept in this struggle. The reality is, cancer has taught me nothing. Cancer is nothing. Cancer just happens, it's a disease, a meaningless biological change that affects a human body, but cannot touch the human spirit. Hazel has shown me that, and I will forever be humbled because of it.

Hazel has taught me to trust in what we cannot see. She has taught me to love deeper, rejoice more fully, cherish what I have, and to be ever faithful. Hazel has done this, NOT cancer. Because for all her pain, all of the anguish, the confusion, and the doubt Hazel has not once acted like a victim of her circumstance. She has not mourned, she has not complained, and she has not given up. I owe it to her to do the same.

Hazel has taught me to aspire to faith that can move mountains. She remains patient, focused, driven to live life and to love it regardless of the obstacles in front of her. At times, I see so much of God’s hand in her that I am overcome with emotion. It’s as if her struggle has awoken my spirit, set something astir inside of me and I am restless. I am charged and empowered, liberated from the shackles of everyday life because my goals are so much greater than this world can fathom.

Hazel has shown me who Jesus is through her and for that I am forever in her debt. She has taught me that time is precious, yet meaningless all at once. The amount of time we have on this earth means far less than what we do with that time. Tomorrow is not guaranteed, for me, for you, or for Hazel. But today can be great, and it’s up to us to make it that way.

Jesus Christ is the same yesterday and today and forever. – Hebrews 13:8