temporarily stuck in a broken moment

There are moments in this crazy life that we all remember, both good and bad. The good moments that stay snug in my memory are my comfort & where I go when I feel overwhelmed.  Sometimes those memorable moments that stick are firsts, and other times- they feel like firsts because I somehow blocked out the first ones, the second ones, and so on. Kaitlyn’s seizures this week felt like a nightmare and it felt like the first ones, ever.

I am definitely not the most confident person, nor the most competent. However; I do usually feel like I manage Kaitlyn’s care to the best of my ability.  Except for in this week. I failed her this time, for a moment- a cluster of them really. The overwhelming guilt I feel is ridiculous and I’m annoying the crap out of myself, but I can’t seem to knock it off. Maybe writing it all out, in a confession will help.

The afternoon of her seizures had started off great really. Almost too great. She was wide awake, talkative, poetic even. Moments before the first seizure took her over, she had hugged Kai tight and told him how much she loved him, that he was “the best brother ever”. She sat with me, talking about how great her life is and said she wanted to watch Tinkerbell with me. She got cozy in blankets and I turned away to start her movie. I heard her before I saw her. The seizure growl is the worst noise- it doesn’t sound human. I see how some of us describe these as “seizure monsters”. She had slumped over and was convulsing, making the worst breathing noise. I flipped her over to a better position and started the timer on my phone. Her lips looked blue and I panicked inside and out- dreadfully waiting for the seizure to hit a minute because I knew to get the versed ready if it got to the second minute. When I changed her position, her lips went from blueish to pale, which seemed ‘better’. She kept seizing.  I fumble when I’m nervous so I draw up the versed at 1 minute, 30 seconds so if it takes a while, she’s definitely absorbing versed before minute 5. 1 minute feels like an hour during a seizure and I’m helpless. It’s not about me- but I want to fix these moments, erase them; moreover- I feel responsible in preventing them and I completely failed that. I attached the med dispenser to the syringe after drawing it up and gave her the medicine through her nose and waited more. At minute 4, the seizure stopped. Right when I felt like it was over- I think I took my first deep breath- she slumped over and started seizing again. And the breathing noise took her over again. I kept screaming “Kaitlyn- can you hear me yet?” And begging everyone & everything, real or not; to make this stop. Our sweet Kai was also there. He was running back and forth trying not to see what was happening, but not being able to get away from it either.  He was screaming for me to “call 911 now. Call the ambulance. Make someone get here.”   I heard him, but I was trying to convince him it was okay- the medicine would work any second. Why is it we’re constantly making things okay that aren’t in fact, okay at all?  I pictured the most ridiculous things while debating calling for help. I had beer on the table that I hadn’t put away yet because I spilled cranberry sauce in the fridge and didn’t want sticky beer. Who cares, right? But it bothered me that beer was sitting there, exposed and not put away. I hadn’t taken a shower. Again, who cares? The house was a mess. I didn’t have anyone to watch Kai. The firetruck and ambulance arriving would scare Kai. None of those thoughts are rational when I am in fact, being rational; but I wasn’t being rational at all. I actually had Kai put beer away. WTF, right?? I was not thinking clearly and I failed both my kids in that moment. I did give Kaitlyn the emergency medicine for the second time & the convulsing part of the seizure finally stopped. Her breathing stayed labored sounding for a bit, but I don’t know exactly how long that part lasted. I also videoed (is that even a word??) a tiny segment of the second seizure and some of the breathing. During the actual seizures, I called 911 three times but didn’t press send twice, and hung up the third time before it could really ring. I also called every direct line I have to a real person at Kaiser. Just in that moment, no one answered. Not because they failed, but because they’re human and we aren’t all glued to a phone. When the convulsing parts of the seizures were over and Kaitlyn’s breathing had returned to normal, she was still twitching. Kai understandably couldn’t handle being in the room anymore. I couldn’t relax inside at all. I called my friend Carrie who answered her phone and I crumbled. I have no idea what I said.  Not sure how she understood anything I was saying either, but she helped me find enough capability to carry on to the next moment. Once I calmed down, or thought I had, I called Kaiser again and got a hold of one of the nurses we love and when she asked me if I was okay, I said something ridiculous like, “absolutely not” and I started melting away crying again, like a big giant baby.  I’m not even sure how I talked to her or what I said. A few things she said stuck with me. She wasn’t saying it in judgment at all, but she said, “Kaitlyn has seizures.” Clearly I know this, but I felt like I learned it all over again. She set up a phone appointment with a doctor too and she went over Kaitlyn’s seizure with me. Still, I went to a dark place in my head. I didn’t trust my instincts as a mom or as Kaitlyn’s caretaker. Kai had been so scared and I wasn’t able to comfort him either.

Conversations I’ve had in the last 2 years came back to torture me- or more truthfully; I started torturing myself all over again. We’ve only had one neurologist I didn’t like. With all the doctors we’ve had, to only have one I don’t like is pretty good really. Except her words came back to my memory like a giant hand smacking me, and not the friendly foam kind. She told me seizures don’t cause any damage,  that parents just don’t like them and she always said, “if” in front of my descriptions of Kaitlyn’s seizures. I hold on to her ‘ifs’ like little destructive lifelines because if seizures weren’t really happening, then by definition;  they wouldn’t effing ever happen. If this was my interpretation gone haywire, then Kaitlyn is okay. If I was just being dramatic, then once we fix me, Kaitlyn will be fine. I’m in counseling, trying to fix me. It sounds ridiculous out loud, but if this could be my fault, I’d whole heartedly prefer it because I’d knock it off and then Kaitlyn would be the 12 year old she deserves to be. I remember a giant seizure Kaitlyn had in the hospital 2 February’s ago. I hate Valentines Day anyway, but I remember every part of that awful Valentines Day. When her seizure hit, I hid in a tiny window room crying while the x-ray techs called for help and they all tended to Kaitlyn. I cried in hallways with people I don’t know. I was a mess because there was no denying that what I saw, everyone saw too and because I couldn’t make any of it better. And there illustrates the problem with having video of one small moment of this big mean seizure- I can’t convince myself it didn’t happen. My denial and self-torture weirdly helps me carry on. Some people think I cope well, but I really don’t. I blame myself even though when I say it out loud, I know it sounds crazy.

The days after her seizures have been tough. She’s still affected by that day- her motility issues are even worse- she’s sleepier and she’s so uncomfortable still. She’s not tolerating formula like she had been the day before those seizures hit.  She bit her tongue and wanted a new one the first few days afterwards. She’s been confused- the whole week seems lost to her. Words she recognized in books before that are missing right now, but they’ll come back. She’s also still fighting another (or a continuation of the same one) tube site infection and that discomfort has taken over her little body many sleepless nights in a row.

I do know that we’ll get back to where we were- appreciating every smiling Kaitlyn moment. Kaitlyn will get back to smiling moments and telling us remarkable truths she observes in each day.  Kai is already getting comfortable around her again. He had a hard time being in a room with her after those seizures. I’ll do better next time- I really do know that. None of my self blame has anything to do with anyone being mean now- it’s just me being ridiculous. I know I’ll knock that off too. The kindest words have been spoken to me, in this week especially. I’ll listen to them, even if on a delay. Thankfully these moments that torture are overridden by moments of good, sincerity and love from those around us. I want to feel more Pollyanna about all this- but for this moment, I’m just feeling broken.