A Dad by Any Other Name

"To her, the name of father was another name for love." – Fanny Fern, Fresh Leaves

“I lub you Daddy,” Hazel yells over her shoulder as her mom pushes her little pink tricycle in a meandering circle around the empty parking lot for what seems like the millionth time. I grin in the dark as she giggles and babbles away, listening to the stories that can only be told by a 3-year old girl entrenched in a make believe world. Hazel is filled with wondrous joy as she explores every inch of the parking lot. The warm breeze blows the small tufts of hair off of her forehead and her light blue sundress dances behind her like a small rip curl following the wave that just flowed through a calm section of ocean water.

Its 10:00pm on a Tuesday evening and yes, our daughter is playing outside. Her medication reacts with sunlight and gives her bright red hives on her skin if she plays outside during the day, so we are obliged to play late at night after the sun sinks low behind the horizon. Our street is quiet and the night sky looms overhead, dark and expansive with small pin pricks of light that indicate where stars would be visible if it were not for the light pollution of street lamps lining the streets of downtown Marietta. I lean back and peer up into the darkness and let my mind wander.

In the short span of about 30 seconds, my thoughts come as a revolving door of checklists: “I need to get that manual done at work so I can move on to the training content that needs developed; Do I have any freelance projects to work on tonight?; How much money is in the bank?; What bills need paid tomorrow?; What is our schedule like tomorrow night?; I need to paint the house; My truck needs some work; I should probably try to workout sometime; When do we go to Columbus again?; I hope Hazel’s numbers improve; Are we doing the right thing; What am I forgetting?” Each additional thought gets stacked on top of the previous ones, like a precipitous tower of cups, each filled to the brim with information, swaying back and forth sloshing their contents out a little at a time. As the tower builds in height, I struggle to maintain its balance, and often fear that my focus on the cup on the top will cause me to trip over the smallest imperfection in my path below, burying me in a torrent of broken cups and lost causes.

It has now been over two weeks since we last visited Nationwide Children’s Hospital in Columbus. Two weeks of no procedures, minimal medications, and fairly normal life. Beyond a few visits to local medical facilities for blood work and eye health checkups, we haven’t even thought about visiting a hospital. Hazel is off of all oral medications now except for one on the weekends and our next scheduled clinic visit isn’t until the end of this week. She has done amazing, is walking around, plays nonstop, sings, dances, and laughs all the time. By all accounts, we don’t have much to worry about right now and should be relaxed and just floating through life until our next chemo encounter.

But oddly my level of anxiety has actually risen instead of declined. I don’t have as much to be concerned about so therefore I worry about the lack of things to worry about. I add other non-Hazel related things to my list to make up for the amount of time I worried about Hazel. Then I feel bad because I am NOT as worried over Hazel and think I should probably worry about her more. This positive feedback loop of neurosis slowly loosens my once firm grip on reality and threatens to create chasms in my relationships with others, the least of which is my family.

Since Hazel’s diagnosis I have built my persona around managing information about her illness. I have created binders for her medical records; developed my own charts in Excel to monitor her blood counts; gathered an entire database of information on Leukemia; read books, medical journals, and nearly every resource I could get my hands on about her treatment. I have gotten to know her doctors extremely well, have the hospital hematology department on speed dial, and have a notebook that I keep a running list of questions on for clinic visits. I can recite her medications, their schedules and dosages by heart; always have a copy of her treatment roadmap on my person; and have a bag I keep packed for overnight visits at all times. That Boy Scout motto – Always be prepared – yeah, I take it to heart.

But for all of my preparation, my research, and my worry, have I really been able to change the outcome of her treatment at all? Have I truly been a benefit by serving as a walking Leukemia encyclopedia, spouting off percentages, study protocols, and side effect ratios? Nope. Probably not. Maybe. Who knows?

The cold, hard truth is that all of that preparation and learning and focus is not really for her, it’s for me. The results of all of my “work” over the past two months do not directly affect Hazel. Much of this journey is a waiting game; watching how her body responds to treatment, and then allowing our oncology team to make the best decision for her moving forward based on their experience and available research. In some respect though, none of us have any control over how Hazel will fight her cancer. At times this all seems like a big exercise in data collection and archiving, versus a hard-fought battle against an invisible foe.

For someone with a Type-A/organizer/fixer personality like myself, cancer is a tough disease to deal with. I can’t really DO anything that will make a long-lasting impact on Hazel’s prognosis. I control nothing and have no capability to offer assistance in any way. I don’t have a medical degree or ten years of focused research background in Leukemia. I have no pharmaceutical experience and I cannot prescribe chemotherapy based on Hazel’s height, weight, or diagnosis. But I can do one thing that will have an impact on her life: I can be a Dad.

I can hug her tight against my chest to show her I love her. I can sit in tiny chairs for tea parties, draw pictures with crayons in notebooks on the floor, and make one of the best playdough balls you will ever see. I can be the guy that builds tree houses, gives advice, tucks bedsheets, and kisses foreheads. The person she runs to with scraped knees, when her bike tire goes flat, or a clap of thunder scares her awake at night. The fixers of toys, the hot dog chef, the human jungle gym. I can be that guy, that job I can do and do well. Being a Dad is more than a hobby or a current fixation to me; it is a lifelong obsession, it is a calling, it defines me.

Each day brings new challenges, not just with Hazel’s cancer, but with all things that are brought to my feet as a father. I often struggle with these challenges silently, doing my best to hold the onslaught of troubles that sit on my family’s doorstep at bay. But in these times of anguish, as I grapple with my own reality and try to manage all of the emotions of childhood cancer, my character is forged. Like my father, and his father before him, I stand resolute; chin up, chest out, eyes focused far in the distance, to a better time for my family. A time free of sorrow, sadness, and pain.

Come what may, I can still be the protector, the comforter, the friend that Hazel needs; now and in the future. I can still be her Dad.

I feel a slight tug at my pant leg and look down into two piercing blue eyes, “Daddy, peez poooosh me.” Ok, baby. Let’s go.

“We love because he first loved us.” – 1 John 4:19