December 13, 2017: A Private Talk

In yesterday’s post, I alluded to G and H, but I haven’t written much about their experience, how their father’s cognitive decline and his Dexamethasone induced anger was impacting them.

On December 13, 2017, I was doing my best to protect G and H from seeing what was happening with Matt. The night we (Matt and I) argued about scissors, I put on a movie for them to watch upstairs so they didn’t have to see or hear our argument. I made sure their routines were completely unaffected by our medical schedules. They didn’t miss an after-school activity, a homework assignment, or a playdate. Their Chanukah presents were wrapped and their class parties were planned.

But the invisible monster that had grown claws and fangs had grown too large to hide despite my best efforts.  That cruel transition that had started so many months earlier with Matt napping while the kids asked to play had taken on a new element.

One year ago today, after lighting the second Chanukah candle, G pulled me aside and asked to speak with me in private. A private talk, she called it. We went to her room and she pointed to a framed photo of her and her father—the same one that now holds a position beside the “World’s Best Dad” trophy—and she told me she was looking at the picture and was sad that her daddy wasn’t the same anymore. She said she missed the daddy who could play and was nice.

I hugged her, my heart breaking into an infinite number of pieces for her, and told her I missed him, too.

The daddy who could play: Matt struggled to find a way to interact with G and H. The day before he’d tried to help H set up a new toy, but for some reason—processing issues, cognitive issues—simply couldn’t. He’d ended up sitting on the side, watching H struggle to put the toy together on his own. H had been in tears until I’d finally stepped in to help.

Why hadn’t I stepped in earlier? Because I knew Matt wanted to set up the toy with H. I couldn’t truly understand why he didn’t set up the toy—what in his brain was failing him—but I knew he wanted to. The intention was there, and I wanted to give him the chance. But I didn’t want to distress H. The challenge was to find that balance. The heartbreak was that balance might not have existed.

The daddy who was nice: Matt’s anger—induced by Dex and the tumor pushing on so many parts of his brain and maybe, possibly, his situation. Matt’s anger found its way to G and H despite every effort to protect them, to step in and redirect his anger onto me.

When Matt was clearer, on his good days, he could recognize what was happening to him. He could recognize that not only was he confusing words and struggling to process questions, but that his anger was severe and uncontrollable at times. In those clear moments, I could ask him what would help him calm down the next time he grew angry and we discussed what might work to ease that rage. He didn’t want to be angry. But in the moment, when he wasn’t clear—the anger was its own force.

One year ago today, I tucked G in and swallowed tears and guilt—I’d wanted to protect her and H. I’d wanted their childhood to be easier, nothing but sunshine and smiles. And it wasn’t. All I could do was remind her Daddy didn’t want to be angry and he did want to play; his brain was betraying him and it wasn’t his fault. It wasn’t her fault, either. I reminded her that we were seeing the best doctors and we had a lot of reasons to hope things would get better.

Yesterday, G wrote a note to Matt (which she allowed me to share). She told him about sleepover parties and basketball practice, and told him there was so much good stuff going on now.

G’s and H’s childhood isn’t simply sunshine and smiles. From the beginning, that might have been an impossible goal, anyway. But their childhood isn’t all grief and heartache either. It’s a mix of everything. Sunshine and smiles and grief and anger, heartache and happiness, laughter and loss.

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