morecowbellforkids-blog

[morecowbellforkids-blog]

Tell Me This Is Normal

Originally posted on Medium // August 20, 2015

When you’re about to enter parenthood, you are warned that crazy shit happens. You hear horror stories — hell, you can binge watch horror stories as they happen thanks to TLC and other reality TV havens. But none of that crap was for me. Not with either of my pregnancies. I didn’t read any What You Can Worry About For The Next Nine Months book cover to cover. I didn’t even read through each of the 36 weekly emails I got when I signed up on Mom-To-Be websites after getting that first positive test in 2011. I practically prided myself on NOT being into Research — when really this meant I was listening to ALL the stories of my friends and family members and doctors and mentally taking notes. I felt that was enough. I felt prepared for motherhood. I felt like I could do it, especially because I had chosen a great, strong and kind man to be my partner in crime, my husband Mike. We could handle anything, whatever crazy shit came our way.

Both of my pregnancies, two years apart, were smooth sailing in calm waters. A couple little testing hiccups, sure, but zero complications and then <POOF!> at 40 weeks and 2 days I gave birth to healthy and happy baby boys — Desmond in 2012 and Liam in 2014. They were both long (22") and they were both sturdy (8lbs and 13oz — 7lbs and 13oz, respectively). They cried immediately, nursed within an hour of birth and, man, I was really nailing that motherhood shit!

Desi’s first couple of years were pretty great, too. Of course we had our WTF moments — nursing was actually really hard at first, and then harder still, months later, and then holy crap the weaning. That was tough. But he was an awesome intro to parenthood; he slept through the night at 9 weeks, he walked and talked early, ate all kinds of foods. He was and is a little active rascal and we adore him. The hardest health thing we had with him was Halloween 2014 when it didn’t sound like he was breathing well. We worried. His doctor worried. But an inhaler and some education on how to help a child whose respiratory system reacts to colds with asthmatic symptoms cooled our worry jets. Manageable. Easy.

His brother is pretty rough and tough, too  — you have to be when your brother comes barreling down the hall to give you a ferociously loving hug and you are only six months old. Liam has always been capable and strong.

Liam has had two febrile seizures within the last five months (March 1st and August 15th). We anticipate more before he (hopefully) grows out of them.

Now, I know febrile seizures are not the end of the world. I’m on Facebook. I see children suffering insane fates and conquering exponentially harder illnesses. These children are heroes. Their families are warriors. They have all of my appreciation and awe.

But witnessing your child seize is terrifying. And sharing our story with friends has made me realize it’s much more common than I ever knew.

I can’t get the image of my son’s 13 month old body convulsing sporadically out of my head. When I close my eyes I see his eyes rolling back in his head. When I stand still I feel his body popping and jumping uncontrollably against mine.

It turns out both febrile seizures to date were caused by an ear infection. The infection caused the spike in his temperature which caused the seizure. Logically I know this. My rational brain understands that febrile seizures are not only common for babies and kids, but they are also (thankfully — so thankfully) not harmful.

In the moment it’s hard to believe it’s not harmful, though. It’s hard to believe it won’t cause permanent damage. It looks like agony.

At the ER the night it happened, and at the doctor’s office the next day, I told everyone who would listen that they need to remind me just how benign these seizures are. Because while I get it — I do — I also can’t forget how helpless I felt, and how worried I was, and how Not Okay he looked.

Liam started seizing while I was holding him, shortly after I gave him some pain reliever because he was running a 103+ F temp.

I missed his first seizure by 20 minutes; I only kind of knew what to expect.

That first time, five months ago, I hadn’t been out of the house in weeks, had a long-standing date with girlfriends I never see anymore, yadda yadda yadda. The Mother’s Lament.

It was March 1st, he was 8 months old. I nursed him for his bedtime feed, then kissed him, his brother and my husband and drove like a bat out of hell across town to make the dinner reservation for me and my girlfriends. I told my husband before leaving that I was going to “be a good friend” and “not talk about my kids” or “check my phone a bunch” because Dique is an AWESOME dad and is totally on it. They didn’t need me.

Liam seized probably right as I was walking in the restaurant’s door and I didn’t find out for 2 hours. After dinner we all checked our phones. On my phone were many missed calls and a few texts from my husband that started “Don’t freak out…”. Yeah. I freaked out.

It was the worst night of my life. The guilt, the stress, the sadness. All of it. I rushed into the ER disheveled and embarrassed and ashamed. How could I?! How could I have gone OUT and left my family and NOT checked in?! Of course no one but me made me feel that way. Of course he was fine. He nursed right away, we left after an hour or so more of monitoring. My husband had forgiven me before I turned up at the ER, and I’ve just about forgiven myself.

So last week, when I was holding him and he started convulsing, I very matter-of-factly told my husband, “Liam’s seizing, please call 911.”

Des, our three year old, was three feet away at the kitchen table in his normal spot, playing with normal pre-dinner table-top activities. Kinetic sand, play dough, Lego — you know the drill.

I stood up and held our baby. “Liam. Liam. Liam. It’s okay. You’re okay. We’re okay.” On repeat. Then we went into the bathroom and I ran cool water on him — we learned later you don’t need to do this (just strip your kid down to a diaper and wipe a room-temp wet washcloth over them). He’s been really congested, and I couldn’t hear him breathing — it was so shallow — so I blew air into his mouth and nose. The paramedics and ER team didn’t make me feel bad about this, but turns out I didn’t need to do that, either. Seizure breath is really shallow. Like really, terrifyingly, “are you even breathing at all!?” shallow.

His lips started to tun purple. His eyes rolled back.

I relayed all actions to Dique like “Okay, now this is happening, is this what happened with you? Tell me this is normal.” while he was on with 911 — which seemed to take forever to pick up.

Then, Liam stopped seizing. And stared blankly at nothing. And the medics were on their way. And he wasn’t responding to me.

So I did what any other parent in my shoes would do and focused on Making Everything Okay for the sibling. I told Desi to look and listen for the sirens, the helpers, because they were coming to make sure his brother was okay. And that everything was fine. And to come downstairs with us.

I carried Liam out into the street in a frog towel as the medics arrived and they swiftly escorted us back into our tunnel entry where we laid Liam in a stroller — still no cry, still no real noise. Just blankness.

Oxygen mask on.

Desi came hopping down the brick steps. “Mama, look at all these helpers!” There were at least 11 respondents crammed into our tunnel — 2 engines, a chief’s truck and ambulance had arrived.

Finally Liam cried.

“Ohhh!” We all exclaimed.

“Hey buddy, there you are,” said one of the medics.

Desi was dancing on the brick staircase, now, hopping from one step to another. I scolded him. No-nos are still no-nos, even during emergencies… right, parents? We don’t play on the freaking bricks, buddy. I am too stressed for this shit. Stop. It.

When they took Liam to the ambulance, Mike walked with Liam and I carried Desi. I saw my big boy’s serious face change; I saw fear as he watched his little brother strapped to the gurney inside of the ambulance. We started talking about the tools inside that would make Liam better. That good guys carry tools around — always— so they’re always ready to help us.

Soon huge handsome firemen were giving Desi high-fives and me hugs and driving away. There was one woman there and she said “You did great. You did all the right things.” 

I kissed Des’ neck so I wouldn’t cry.

I told Dique he should go with our baby in the bus, and I’d gather our stuff and call our parents and meet them at the hospital after dropping Desi with grandparents. But in talking through what had happened to Liam, I knew Des would be too worried away from us. I knew he had been affected, and that he would need more information and more reassurance before feeling safe. So we went back inside, made calls, packed up for a long night at the ER, and headed out.

We were walking down the stairs from our flat to our car and Desi stopped, surveying the scene that had, just moments before, been packed with paramedics working on his brother. He looked back at me and said “When I’m grown up like those mans and lady I’m going to be a doctor so I can save Baby Liam.”

I was so proud of him I felt my heart swell like the Grinch’s on Christmas Day.

“That’s a great idea!” I said. “I am sure so many people would be so happy to see your face when they need help.”

That was his first ever “when I grow up I’m going to be…” statement. I couldn’t have written a better one.

As we drove to the hospital, a mere 10 minutes away, we saw another ambulance and Desi declared his brother was inside and that we needed to follow it. Taking him to the ER with us was the right move, even if it was way past bedtime and challenging to have the witching hour in such a sterile space. So we watches Cars and Thomas while we waited for Liam’s fever to break.

It broke. We picked up amoxicillin for his ear infection and extra pain meds… and reviewed what to do the next time a febrile seizure strikes.

Because the odds are, there will be a next time.

At the ER they nurses said that by the 3rd or 4th seizure, parents get the hang of it. That they don’t call 911 unless it’s been 2 minutes and the seizure hasn’t stopped on its own, or if the convulsing is only happening along one side of the body. I honestly can’t imagine not calling. I understand that it becomes easier, I get that you learn protocol.

But. I need someone professional, an expert, to tell me that what is happening is OK. To tell me that this is normal.

Because holding a seizing child is like holding an earthquake. You assume is will end, but you don’t know when. You guess there isn’t much damage, and that any damage near the epicenter can be remedied (in our case, ear infections can be cured with antibiotics and time). You hold on for dear life and hope your assumptions are right.

Liam means “strong willed warrior” and if this is his biggest battle, I’ll take it. It’s so manageable compared to everything else out there. But it still is agony to not be able to provide a solution to your child. All day I am providing solutions — that’s parenthood; I hate that you don’t have that ability with seizures. There’s no control, only chaos. All you can do is just hold him, wait for the earthquake to end and know our sweet warrior is fighting back.

[morecowbellforkids-blog]

My Feelings

When Liam’s temperature and temperament have been restored and all is well.

And then he spikes another fever.

[morecowbellforkids-blog]

You know that old saying...

“A little indulgence and navel-gazing soothes the soul”...?

Is that not a thing? 

I’m pretty sure that’s the underlying reason behind at least 99% of blog creation. 

That’s why I created this page, anyway - to process some feelings, to post some learnings, to cope with life. Our youngest son is seizure-prone; he’s had four seizures in seven months. Each of them have been terrifying and none of them have been harmful to our boy.

He has febrile seizures - seizures brought on by a rapid spike or very high temperature. He is not epileptic. We have not had him evaluated by neurologists and don’t plan on it, currently. We do have a strong family history of febrile seizures and his have all been textbook. Thank goodness. And while we wish we didn’t have them to deal with - they are also super manageable. Just terrifying to witness.

I’ve written a little about our experiences on my personal Facebook page but, frankly, I already blow that shit up on the daily with mamahood pictures and short essays. I didn’t and don’t want to always share things that happen with my kids there, even if I feel the need to share them. I’ve been trying to rediscover and reclaim my identity ever since feeling lost in the SAHM swirl, and didn’t want to make Facebook the place where I only and ever reported on life from the parenting trenches. And if you have a kid who seizes when they are sick, you feel like you’re in a battle. I don’t want my personal PTSD from Liam’s seizures to cast a cloud over the absolute awesomeness of our daily life. Two years from now, I won’t need Facebook’s algorithm to remind me of the seizure anniversaries. Don’t worry. I’ll know. 

March 1, 2015 

August 12, 2015

September 30, 2015 

October 15, 2015 

And more are coming. 

So, hi. Welcome to My Coping Mechanism. It used to be wine, chocolate and crying in the shower. And it still is wine, chocolate and crying in the shower. But California is in a drought and I’m trying to get my rig back to tip-top shape so this, my dear readers, is the healthiest way for me to cope.

If you’re here you found me through Facebook (hey, friend!), my mom (thanks, Mom!), or because of a hashtag you searched. #NiceToMeetYou 

If your kid seizes when they’re sick - I’m so very sorry. It’s so shitty. It’s manageable - it’s definitely not the worst problem to have - and it’s absolutely terrifying. And I’m sorry. 

And while I’ll write a lot about it in future posts, if you want the basics of what febrile seizures are, how they are caused, and what you can do -- read this. 

Until then - hi there. My name’s Kate, my husband is Mike, our boys are Desmond (3yo) and Liam (1yo). Liam will be the lucky little boy to grow out of this seizure phase. My three boys are the loves of my life. My family and family-of-friends mean the world to me. Alcohol, couch-naps and swearing are my vices. 

He’s totally fine. We’re totally fine. We’re just gonna need more cowbell.

Thanks for listening.

xx, Kate