Emma had another melt down Saturday night. It went on for well over an hour and it began with wanting to eat whipped cream though it was time for bed.
“Whipped cream?” Emma cried repeatedly.
Joe and I tried to use the following; it’s time to go to bed, it’s dark outside, which means it’s time for bed and you’ve already brushed your teeth, as reasonable explanations. None of these statements made a difference nor did they serve to appease her. When she realized eating whipped cream at 9:00PM wasn’t going to be allowed she said, “Vanilla milk?”
We repeated the same logic to a mind in lock down mode. It was futile and we knew it. Weather the storm, I kept thinking, but had a tough time being calm about it.
Eventually I raised my voice, “Emma! You cannot stay in my room and scream. You can scream in your own room. Where do you want to be? In your room or Mommy’s room?”
The fact that I was now raising my voice while telling her to lower hers was not lost on me. Nor was the idea I was having a difficult time controlling my own emotions, yet was demanding she control hers. It reminded me of once during a parent/teacher conference at our son, Nic’s school. It had been a rave review and finally as things were coming to a close I asked, “Is there anything he needs to work on?”
“Well he has trouble controlling his impulses sometimes,” his teacher said.
“His parent’s are still working on that one too,” I responded.
To which his teacher laughed, “Yes, I suppose we all are.”
It was with this in mind that I was able to say, “Let’s take a deep breath, Em.”
“Stay in Mommy’s room,” she cried.
“Okay. But you can’t scream, take a deep breath,” I said.
“Whipped cream,” Emma cried. And on it went. In many ways it was worse than the other night when she was crying for the four-wheeler because this time her screams were even louder and she went on even longer. And then she began hitting herself in the head. Hard hits with clenched fists, curled in frustration, seeking to cause pain. I can only assume the physical pain from hitting herself lessened the emotional internal pain and frustration she was feeling. I had to hold her wrists so she couldn’t hurt herself and thought of all those young women who seek solace in cutting themselves. It is a terrible thing to witness your child causing injury. That it is their own body they are inflicting the injury to makes it all the more upsetting and baffling. Other than physically restraining her and trying to speak in soothing tones, I felt unable to help her.
Eventually she calmed down enough for me to let go of her wrists. “It’s going to be okay, Emma,” I said.
“Whipped cream?” she whimpered.
I thought of how when Nic was a toddler I would try to distract him when he was upset. “Hey Em, do you want to see some photos?” I asked, pulling out my iPad.
“Whipped cream?” she said, looking at the pictures.
“Look! Here you are with Toni riding Beau,” I said.
“Beau,” Emma said, flipping through the photos.
“Wait, look here’s Nicky riding Beau.”
“Toni,” Emma said. Then she added, “Whipped cream?”
“Oh look Em!” I said, hoping to keep her distracted, “what about this? Who is that?”
“Joe!” Emma said staring at the picture of Joe two Christmases ago.
After ten minutes or so Emma said, “No more photos.”
“Okay. Do you want me to talk to you?” I asked.
“Yes,” she said, surprising me.
I decided to do something I use to do with Nic when he had trouble falling asleep. I would use a soft sing-songy voice about walking through a meadow and finding a trail that wound through a field of wild flowers. I would go on making it up as I went until Nic would eventually fall asleep from the sheer monotony of it all.
“Your walking along a path,” I began.
“Whipped cream,” Emma whispered.
“There’s a field of wild flowers all around you,” I went on.
“Emma stop talking,” Emma said quietly.
“The wild flowers are so beautiful, pink and purple and blue. There are lupine and poppies and Johnny jump-ups,” I continued.
But before I had gone through five or six wild flowers, she curled up as close to my body as she could without actually being on top of me, pulled my arm so it was wrapped tightly around her waist and immediately fell asleep.
Later as I was thinking about how upset she had gotten, how inexplicable it all was, I remembered how Emma often has terrible upsets in the evening after a day or days of amazing progress. It’s two steps forward, one step back, the unsteady progress of a mind trying desperately to make sense of it all.
When we were in Panama waiting for Emma to wake up from the anesthesia after her second round of stem cells, the attending physician said to me, “It’s never like this,” he held his hand up at an angle pointing his fingers upward. “It’s more like this,” he waved his hand up and down steadily raising it up. “There’s progress but it’s up and down.”
“As long as she’s showing progress, you’re on the right track,” a neurologist once said to us early on after we’d received her diagnosis. “Just don’t let her get away with too much,” he added as we left his office.
That Emma is progressing is something no one would dispute. She is making progress, however shaky it may be, it is still progress.