"If you're going through hell, keep going."
—Winston Churchill
So ... it's late. 1:26am here in Bean Town. I was about to take a Tylenol PM to help me sleep amidst the constant parade of strangers coming in and out of James's hospital room at all hours of the night, not to mention the loud intermittent beeping of this #^%$^%^& machine which is akin to Chinese water torture, and I almost swallowed my earplug instead. I thought parenting was exhausting before. How quaint. I am definitely exhausted at the moment.
Bone-tired, I guess you could say.
Yet I need to write about this as it is unfolding. The act itself is healing, and has become my own oxygen mask and tether to the world outside of this hospital. Thank you to all who are reading and sending thoughts and goodwill. It matters knowing you are out there tuning in.
We've settled into a sort of perverse rhythm here, I guess you could say. Charlie's parents are saints and heros in their steadfast determination to help on every level. James had a great day today for the most part, including a visit from my brother Will and his son which was a balm for me and a great and active distraction for James. He can still dunk a Nerf basketball like a pro! His fluids are up, so apart from a few chemo doses during the day, James is mainly off of his metal albatross machine (which we pseudo-lovingly referred to as "Roly Poly" since it rolled with us everywhere for the first few days. He now simply calls it "Puppy". The boy wants a dog). That physical freedom has been a huge relief. Of course, the day also included a two-hour midday battle with him to take his 2nd (out of 3) dose of regular oral meds. I have battled with him for 5 years now, and these past few days have been fierce ones.
James has almost everyone here wrapped around his little finger. He still sings, laughs, and has many of us here on the hem-onc floor in hysterics. Each nurses has commented on 1) how adorable and 2) how stubborn he is, especially for such a sweet, loving, affectionate little kid. The oral meds are a battle even when they bring in the "boss nurse" aka bad cop to give him a stern lecture, and who even scares me. While he understands in theory that they will help his jaw hurt less and his nauseous tummy feel better (both side effects of various chemo meds), he steadfastly refuses to take them until we finally pin him down and enforce it. I won't say it with a spoonful of sugar: this is highly traumatic both for him to experience and for me to witness. The nurses don't seem to mind because frankly, he is still so stinkin' cute. I feel slightly validated. Now so many others are trying to get this cute kid to go in a direction other than the one he wants to - battle tested nurses who work with stubborn, scared, angry kids all the time. They are all floored at how strong-willed he is. I think he's got my dad's personality – sorry dad :-). Consider it a compliment when all this is over.
But there is a part of me that wonders … much of what has given me strength and resolve and extra courage from this fierce mama love is the fact that he still melts my heart with his sparkling eyes, his rosy cheeks, his mischievous smile. Will I love him any less when the more prominent chemo side effects start to emerge? When he acts out even more from the steroids he has to take? When, even if temporarily, his whole face changes? Will I love him any less when it widens out, when he gains weight and shows that same moon face that stares out on me from the posters of cancer kids plastered all over the hospital corridors? What about when he loses that soft blond hair?
Of course I won't. But it could make it harder to see him through the rages and the fury that the steroids will only intensify. If it gets worse, as it gets worse, will my love and patience start to thin?
Before Charlie left, the doctors asked us if we had noticed any mood changes yet due to the steroids. We had just endured an intense morning tantrum because we told him we couldn't detach the Roly Poly machine. Our answer? We stammered as we thought. Well, it is still James and his intense personality, just maybe dialed up 1 or 2 clicks. And what's ahead of us in that sense? Well ... maybe ... these go to 11.
Yes, a reference to Spinal Tap, that old mock-rockumentary which has always been a favorite of mine. How that term has a much different meaning for me now, given that James's next spinal tap is on Thursday. I wish my association with those two words still involved knee-slapping laughter, an appreciation for awesome satire, and cathartic comic relief. No more.
But a mother's love? The fellow mamas who have been through this and fought for their children through the hardest moments? These warrior mamas, their love goes to 11 and far beyond.
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