The Lunatics are running the Asylum...
I distinctly remember the day I realized I had lost complete control. I had somehow and very slowly laid down my responsibility of parenting and I had done so at the altar of fear. My moment of realization came at 9:30pm as I stood outside the door of our hospital room (luckily we had a corner room so my moment of shameful realization was only witnessed by one beautiful nurse who, seeing the tears stream down my face, touched my arm and walked quietly away saying only “I’ll come back shortly. I’m gonna give you a minute.”) I was standing outside the room anxiously looking in through the small window as the monster who had replaced my 3-year old daughter walked around the room inside, pushing her IV pole and screaming at me to “GO AWAY!” and when she saw me looking in screamed “DON”T EVEN LOOK AT ME!” and I pleaded with her to in what I remember being a weak and slighting irritating voice “Please be careful baby...” and “Watch your central line....” and “Mind your tubies...”
I’m standing in the hall 2 hours past my child’s bedtime, panicked at the thought that she could do damage to her line – and herself – and it hit me:
How the fuck did I get here?
The truth is that this took place in one of the darker periods of our experience. Fiona had relapsed and immediately been admitted, had a central line re-inserted and begun a round of chemotherapy to get her into remission as we began the process of searching for a bone marrow donor. Thirty days later, on my 36th birthday, a bone marrow test showed that she had gone from 10% leukemic to 70% leukemic. On chemo. I stood in the hall and absorbed what I was being told – the treatment wasn’t working and there was no immediate plan B – which was really plan C at this point.
There’s lots of scary shit you hear along the way. “It’s Cancer” was the first and scariest, until I heard “It’s back” which put the first to shame. What I wasn’t prepared for was the answer to my question “What do we do now?” The little 3-word answer “I don’t know” rocked me to the core. The look of defeat and fear in her oncologists face was like a punch in my throat and I began to contemplate and process the very likely death of my child.
On reflection, this is the moment I started to let go. I started to let go of my role as parent and rule-maker and disciplinarian and teacher. I let the fear of her death take over and when I did that I inadvertently passed my fear on to her. So when she wanted to stay up later and watch and extra movie, or didn’t want to take a nap, or wanted to just have ice cream cones for lunch – I said yes. And I said yes because all I could think was “How can I say no to this child who may be dying?” Yet as this structure fell away, as it became obvious that the rules no longer applied, she became increasingly challenging looking for limits and coming up with nothing. Again, in hindsight, the loss of structure and norms and rules was super scary for her. Up to this point, throughout her initial diagnosis and 5 months in hospital and her relapse hospitalization to this point, we had done an excellent job of maintaining an element of ‘normalcy’ with routine. She still got up and had breakfast each morning, there were rules about screen time and daily self care activities like baths and brushing teeth (brushing hair wasn’t an issue ;) Then we stopped doing all that and I’m sure she thought – What the fuck?
And that was why I was standing in the hall.
So that night I decided that despite all my permissiveness and all my attempts at indulgence and kindness, no one was having any fun. I was standing in the hallway, shamefaced and terrified that little beast was going to rip out her central line and she was inside the room with tears and snot streaming down her face. If I was Dr. Phil, it would be the perfect “How’s that working out for ‘ya?” moment. So I set back my shoulders and went in to face my demons – my literal demon. It was a battle of wills and an endurance battle at that – she’s fierce on a good day – and we were having a standoff at 930 at night. I walked down to the nursing station and saw this remarkable nurse and said “I need you to give me a couple of hours. I’m getting control back and it’s happening tonight...and it’s probably going to get loud and ugly. So if we can hold all her meds and such until midnight, that should give me time to get this beast back in its cage.”
Within 24 hours, I had re-claimed my role as head lunatic. It didn’t take long but it took effort and, looking back, it is the single best mistake and recovery we have made throughout this whole thing. We went back to being her parents and enforcing rules and a schedule and she began to thrive again ... and we stopped having to pretend that her behaviour was acceptable. The reality was there were some other challenges that lay ahead of us for her and having that structure, the routine was something that she needed and formed the foundation of how we survived.
Some children may not need this structure like Fiona did especially once you factor in age and your definition of ‘normal’. That said, the message here is that there is value and peace in continuing to have some sense of ‘normalcy’ throughout this. Obviously some things are going to be off the table but other traditions or things they enjoy doing that you may be able to sustain (pizza for dinner on Fridays, family board games night, watching Sunday football, whatever)
My point is that if you lay down your responsibilities to fear, it’s a fucking death spiral. You are investing a lot of time and energy to fix up your dud kid and what is the point of all of that if you end up taking home an absolute brat? No one is going to care about what they had to endure and how much they survived if the child that returns from the brink is one that no one wants to be friends with and doesn’t get invited to birthday parties because they are selfish and hard to get along with. Despite this diagnosis, you still signed up to be a parent and signed that invisible contract to try to not raise a sociopath or a con-artist or a lawyer.
Cancer or no – Do your job.