September 21, 2017: Seizure Activity

September 21, 2017 is a heartbreaking first. I usually give a few days warning before a story like the one I’m about to write, but September 21st arrived without warning for us. I searched the emails and photos, the texts and my memory for some sign that might have alerted us to the events of one year ago today. I found nothing. Nothing in the days leading up to this day warned us that we were about to crash back down. So we crashed without warning. We crashed and moments from this day are burned with razor sharp precision into my memory.

Overnight, H had been awake with a case of croup. I’ve written before about his croup—that first horrible bark-like cough and gasp for air, how if I respond fast enough, the cough and breathing will return to normal, but I end up awake the whole night listening to every catch in his breath. In the morning, his cough had all but disappeared and the only evidence that anything had happened was the exhaustion wearing thin my patience.

We decided to skip services for the Jewish New Year—I was afraid to expose a room full of children to H. But in the afternoon, after it was obvious that H’s croup had truly been a one night episode, we (our family of four) ran a few errands. Matt was having a difficult day. He was in pain—that ever-present pain—confused, slightly off balance, and irritable—he had yelled at G and her feelings had been hurt. We cut our errands short and went home.

I parked by the front steps and walked up the stairs to unlock the door. G and H followed. I turned the key in the lock and looked behind me to see if Matt had made it out of the car. He sat in the passenger seat with the door open, his hands on his knees as if summoning the energy to stand. I offered help and (not surprising to me) he declined. I watched him stand—slowly—his movements stiff as if every action was painful.

Then, his right leg started bending at the knee. His right arm started making jerking movements. I asked if he was doing that on purpose. I remember the smile on Matt’s lips as his terrified gaze found mine. He shook his head no. Then he started tipping over. Falling onto the unforgiving stone driveway.

I remember thinking I don’t know what to do as I dropped the bags in my hand and ran to Matt to catch him. I remember thinking that I need to be careful with my fear because G and H are watching. I caught Matt as his legs gave out and managed to get us almost to the steps—almost. I wasn’t quite strong enough. Matt’s head rested on my lap and the rest of him stretched out in what could not have been a comfortable position.

I remember thinking this couldn’t be real life as I found myself questioning every millisecond of the last few minutes. Should I have moved him? Should I have ignored his decline of help? How was I not more prepared? I dialed 9-1-1 for the second time in my life because I could think of nothing else to do. Afterward, I called Matt’s mom—my first experience dialing 9-1-1 had at least taught me to reach out for more help—and again wished I didn’t have to deliver this heartbreaking news.

I don’t remember how long we waited for the first police car or the two ambulances. In my memory, almost no time passes between my 9-1-1 call and the driveway full of emergency vehicles. But in that short panic-filled time before help arrived, when I was trapped beneath Matt who was awake but unresponsive—either because he was stunned or incapable of speech—H threw a foam ball that hit Matt on the head. (An accident.)

I remember the way I said H’s name. With a sharpness that wasn’t warranted. Mom guilt flooded in. I didn’t want H to look back on this day and blame himself for anything. I apologized a moment after I said his name and told him Mommy was just afraid and everything would be okay because help was coming. He nodded and threaded his fingers through my hair (his version of a security blanket). Guilt laced with fear and panic is not an easy emotion to sit with. I couldn’t stop shaking.

The police and ambulances arrived. Matt’s mom arrived. They speculated Matt had suffered a seizure—a common symptom for brain cancer patients, a first for Matt, who prided himself on checking “no” when asked about seizure activity on the patient intake forms.

As the EMTs loaded Matt into the ambulance and took my information, a car stopped in front of our driveway. The car belonged to one of our friends who’d been driving by and who had a son H’s age. No questions asked, this friend scooped up H and offered to take him for a playdate. H spent the rest of the day with his best friend. That friend, who saw an emergency and offered help without a second’s hesitation, effectively saved the day for H. (G spent the day shoe shopping with Matt’s mom and came home with two pairs of shoes and another on order—so her day was saved, too.)

The day was endless after that. Hours in the ER, more tests, more waiting for Duke to return my barely rational voicemails, another overnight in the hospital for Matt. I was still shaking when I went home that night to talk to G and H, answer their questions and hopefully provide them a little security after a day in which they’d both likely felt their safety nets give way.

I’ve written today’s post thousands of times in my mind. I’ve spent countless moments reliving this day, considering what parts of this day I want to highlight, for myself and G and H. What should we take from this day that has often haunted my thoughts? I came up with this:

The friend who arrived to whisk H away. He saved H’s day, and did so without hesitation. Matt’s parents. They dropped whatever it was they were supposed to be doing to help with the kids and at the hospital. The friends who called and texted and talked me off the ledge of mom guilt. All the reminders that we were never alone, even—especially—when we felt like we weren’t strong enough and had no idea what to do next.

And also, Matt’s smile. Even as his body was betraying him in the most terrible way, he smiled in an attempt to comfort us all. I believe with my whole heart that some part of him was trying to protect G and H from the truth they were witnessing. Proof that even on the worst days, even though sometimes he couldn’t help the bouts of bad temper and irritability, he wanted the best for G and H.

When the story of this year is finished, those are the takeaways I hope G and H always remember.

13 thoughts on “September 21, 2017: Seizure Activity

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