Last week when Sully's ANC (his immune level) was up, we ventured out for a rare trip to a restaurant. Normally we don't go out much because his ANC is low due to all the chemotherapy he is getting. He asked to go to "Hibachi" and that's exactly what we did while my other two kids were away.
The two of us enjoyed a nice dinner and lots of laughs. After our ritual conversations about politics and computers we imagined that it would be a cool Tik Tok video if instead of the chef spraying Saki in people's mouths and doing tricks on the grill that he spray the patrons with soy sauce.
It was nice to get him out and see him eat like a champ and enjoy himself. We are a good team, we had the whole table talking and laughing during dinner.
Almost a year ago I wrote this post about taking Sully to see the sunrise at the beach. It was a picture perfect morning. Sometimes I go back in my head and try and recapture the memory. The world was perfect, just another father son bonding moment in the sand and salt. As we played on the beach that morning I had no idea that he would be diagnosed with Leukemia only a month later.
We are into his treatment almost a year now, and sometimes I can't remember what it was like before he had cancer.
There are all the normal stresses of life, raising 3 kids, and running a marketing business during COVID. Then there is this fight we are in. There is an excess of doctor appointments, chemotherapy sessions, spinal taps, finger sticks, pharmacy visits, pills, potions, and creams. I juggle it all like hot embers from a fire.
Most days our collective optimism eliminates room for any doubt, and on the bad days I don't know who the fuck is juggling, but we still get through them. In a weird metaphorical sort of way I find myself trying to manage sunrise -- just get through 24 hours and make it to the next sunrise.
It has changed me. It has changed us. It has been a magnifying glass to see people's compassion and occasionally their lack of. It has made us appreciate each other and the value of a moment. The kids have stopped telling me I take too many pictures. They finally understand why I do. They've gotten used to me yelling at Sully to take his pills or get off the X-box.
Sully: he who spends an exorbitant amount of time on the X-box and Tik Tok; and I who begrudgingly bites his tongue and allows him one of the few things that gives him pleasure under the circumstances.
"Oh...... killing people or watching 'dumb TV' again?" I ask as I walk by his game room, shaking my head.
He smiles at me like I don't get it.
I do get it though. I know it's one of the few things he does where he is able to socialize with his friends. I can't remember the last time we ran together, biked, or had a catch; all things we did regularly before cancer. I can't remember the last time I saw him sweating, chasing his friends, or running from the wraith of his brother who he pissed off. I can't remember the last big sleepover with his friends. He has mostly been too weak for it, platelets too low, his ANC has been too low, or there have been other circumstances restricting him.
During one of the recent snowstorms I went against the grain and sent him out to play with his brother and sister.
"I wish I could go out and make an igloo with Milan" he said.
"Go ahead" I told him.
"Dad my platelets are low they said I shouldn't go sledding or play in the snow"
"You aren't ruled by this Sully, I don't care what they said. Go ahead, go out, just don't do belly flops into the snow."
"Are you sure, they might get mad" he said.
"We rule Sully" I said, with that same maniacal smile dads have when they build a ramp for their kid to jump with their bicycle.
I watched him out the window, jumping and running in the snow for over an hour, and making an igloo with Milan and Preston.
When he came in he was completely exhausted and took a long nap. No catastrophes.
He sits in his glitzed out gaming room day-after-day in between online classes as the rest of us come and go. But he's happy.
I hear him laughing with his friends, and every once in a while I hear someone whose voice sounds exactly like his cussing up a storm and saying things my son would never say. 😆
He is my pride and joy: my smart, handsome, blond hair, blue eyed, boy to the core. An old soul, a man's man at 10 years old. He has an undeniably happy disposition and the best sense of humor.
Last week I had the chance to speak with Bill Fetzer, a dad from Oyster Bay who runs a foundation for his son Matthew who had Leukemia. A friend put me in touch with him.
There is nothing like talking to another father who has been through this. It is a familiarity I wish I never knew, but it is a great feeling to talk to someone who has felt all the same emotions, encountered the same challenges, and is simply there to listen and fill-in the blanks for you where other people can't.
Bill's son Matthew had very close to the same type of cancer that Sully has. His battle went on for many years and there were some setbacks. Ultimately Matthew succumbed to the cancer and passed away. That was the hardest part of my conversation with him. I cannot imagine such a thing, and it was a reminder that every god damn single day with my son is a gift.
The emotions from that call and from this fight bring me to a place where I see everything as a gift: the air I breathe, the sun on my face, the touch of someone's skin. I am blessed, these are things that some people don't pause long enough to even entertain because they are swallowed up by the distractions of everyday life.
I have always been an optimist, I have always enjoyed the life God has given me no matter what the circumstances. This experience has amplified that perception. It has been sensory overload and an even greater appreciation for people and the little things. ✌️
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