It's the first week of 2021 and all I see in my social feeds are resolution posts and dozens of inspiring proclamations to do better this year. Me? It's 8:00am and I'm sitting here in the hospital with a lump in my throat trying not to spill out my emotions as I watch my son prepare for another spinal tap. Dramatic? Perhaps if you're reading this and not living through it like us.
With every week that has gone by since May none of it gets any easier, we just get a little more numb to it. From the moment we arrived this morning Sully said "I hate that place".
"What place" I asked.
He pointed to the emergency room.
"It gives me bad memories" he said.
I've felt the same way on many of our visits but never vocalized it. It's the first time I've heard him say anything like that. I don't even know how to reply to him so I just tell him it's okay.
He's so good with his routine and the array of medication he takes 3 times a day. Last night he told me before bed "don't forget dad I'm NPO for tomorrow".
"Right so no more snacks" I said as he finished a bag of pretzels and we both laughed.
NPO means no eating after midnight before his spinal tap procedure.
There are times during this ordeal where I feel like I'm just putting one foot in front of the other and trying to hold it all together for him and his siblings. Emotions run high and low and then there are the times like last night where I'm numb and I just go through the motions.
I started taking down the Christmas tree after the kids went to sleep which led into pretty much taking down every single decoration in the house and packing them away. Normally a whole day's work but once I started on the tree I zoned out and just kept going. Sometimes being a single dad running the house is fucking exhausting. I'm not complaining, I wouldn't have it any other way, but there is always so much shit to do some of which I never had to do before. There is no manual, we do the best we can, and surely make mistakes along the way. Apologies and hugs keep us thick like thieves.
I sit here in the hospital this morning watching over him and I can feel what he feels before it even happens. Empathy at it's best. I see the look on his face in the moments before they insert the big needle in his medi-port. As often as they do it I'm sure it never gets easier for him. I see the fear on his face, I know he still thinks of that one time they messed it up.
Finally that part is done and we wait while the spinal tap team begins to assemble outside the door. I watch the solemn look on his face as he sits in the bed and watches the doctors and nurses appear. Even though he is silent I can feel his anxiety. He is good though. He's all business and never complains. It seems harder for me than him.
The anesthesiologist arrives. He's an awesome doctor always full of the cheesiest jokes you've ever heard. He has us laughing quickly and I stand at the bed rubbing the fuzz on Sully's head as they prepare to put him to sleep. I tell him I'll be there when he wakes up, and of course I always get choked up at this point. I don't care how much of a macho badass you think you are, you've never felt knots in your heart like this until you've seen your own kid in this space.
Normally they kick me out at this point but today they allow me to stand on the other side of the curtain during the procedure. It feels like an eternity, and the nurse comes to my side during this time to review his blood tests and list of medications. There is a new drug, and some updates. I see her lips moving and nod repetitively but my mind is not there. I know I'll have to review it all later on the photocopy she's giving me.
The procedure finishes and when I return to the bedside my boy is asleep. He sleeps for quite a while, and while he does I order door dash so that he can't eat when he wakes up.
We eat, and then we sit all day as they pump the 3 different chemotherapy drugs into his port. I am so sad. Some days it just hits me like that. I sit in the chair next to the bed and the hours pass by while everyone else goes on with their normal lives outside of here. I work on the computer, I read a little, but mostly my mind wanders into different places, some happy, some dark.
Sully watches cartoons all day except for the time I convince him to play tic-tac-toe against me. He doesn't want his iPad or anything, he just wants to lay there today which makes me more upset.
I am so grateful that we made it through the holidays with smiles on everyone's faces. They think I'm a superhero, they have no idea how many sleepless nights I have had, and that's the way it should be.
Sully is resilient and almost always upbeat. He handles everything in stride but I could never put into words how hard or painful this has been for me personally. I'm not a superhero, a mere mortal, imperfect at that.
I enjoy bloging, I do it for selfish reasons not for sympathy. It's a great therapy and way to keep family and friends in the loop without having to answer 100 calls or texts. I get emails and connections from strangers going through similar challenges, and all I can say is keep chopping wood, this too shall pass.
I've drowned myself in work and abused my body in the gym as an outlet, but frankly the only space I find any real peace is in the company of my fiancée. Nothing makes me happier than sharing life with her, training together, listening to her quirky stories, and caring for her in ways that feed my soul.
It's dark outside. At some point we'll be released. He's retaining fluid today so they're keeping us longer. It will be a long drive home, and we need to come back again in the morning. I'll shoot for a workout tonight to exhaust myself, and this little guy will sleep off the chemo drugs. We'll string together a few more of these days and call it a week.
You make me cry, you make me laugh. You keep it real. Thank you for sharing this. As always, you are in our prayers ❤️
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