The Truth Is…I’m Terrified.

I learned on my Orange Rhino Challenge journey to stop yelling that if I ignore feelings, especially the ugly ones, they bottle up which stresses me out which triggers me to yell (or want to yell.) So while you might think this post has nothing to do with yelling, it actually has everything to do with yelling. Here are some ugly feelings I have had that I need to get out before a yell does. 

So…as many of you have noticed, I have been basically radio silent for the last three weeks. The first of those I was on vacation and pushed myself to really detach from everything so that I could really enjoy the last week of summer with my family at my favorite place: the beach. Even though two kids visited the emergency room (horrific rash and popped ear drum) it was still a wonderful, beautiful, peaceful week.

We returned the Saturday before Memorial Day. We returned tan, rested, happy and rejuvenated. Then Memorial Day happened and well, Memorial Day kind of sucked in our house.

As many of you know from the first year of my Orange Rhino Challenge, my youngest son (#4) suffered from intense seizures from age 14 months to age 18 months. (read here) Thankfully, a brain MRI showed no brain tumor.

Party at my crib! 9:00, 2+ hours past bedtime!

And thankfully his in-hospital tests two weeks before Christmas that year showed no signs of epilepsy. On February 6, 2013, the day I celebrated one year yell-free, he had another seizure, the worst one to date. The medicine to stop it didn’t even work. He didn’t come to until he received oxygen at the hospital. Thankfully, a few days later, we discovered what we believed to be the source of the seizures: black mold underneath the cabinets where all his toys were stored. We immediately removed the black mold. Since then, #4 had high fevers but never again had a seizure. A coincidence? We thought not. Oh how we felt certain that there was a correlation between the two and that since the black mold was gone, his seizure history was well, history. In fact, this past February 6, 2014, we celebrated one-year seizure free.

I am sure many of you recall my emotional post about how I just couldn’t stop crying that day (read here.) I felt such, such relief to have the, what were determined to be, febrile seizures behind us. I felt like I could breathe again. That I could go out without my phone attached to my hip for fear a seizure would strike and I would have to rush home. I felt that I didn’t have to watch him as closely on the jungle gym out of fear that he would have a seizure while playing. I felt that I could turn off the video monitor during nights when he had high fevers because I felt positive he wouldn’t have a seizure. I felt that I could finally stop worrying, or well, at least worry less because I am a mom and I will always worry.

And I felt that I could leave my fears behind.

My fears of watching him have another dreadful seizure. My fears of him seizing in his sleep (again!) and choking to, well, you know. My fears that I would somehow miss the signals of an oncoming seizure and therefore not be able to stop it in time (like the last one.)

Oh, oh it felt so great to leave all those fears behind. So much so that on the Sunday before Memorial Day, a few days shy of 19 months seizure free, I turned to my husband as I put medicine away and said, “Hey babe, #4’s emergency seizure medicine is past date and so we can throw it out, don’t you think?” Yes, oh yes was I certain we wouldn’t need it. And yet, the cruelest, ironic, surreal, unbelievable moment occurred not 19 hours later.

#4 had a seizure.
An absolutely awful, horrific, seizure.
The worst to date on so many, many levels.

Per #4’s request, I put him down for a nap at noon. What three year old asks for a nap?! He felt warm so I took his temperature but the thermometer said 99.6. And well since he hadn’t had a seizure with fever in 19 months, I didn’t think twice. I didn’t even think about it over the next two hours for the other boys were out with my husband and I had the house, the peaceful, quiet house, alllll to myself. It was a guilty pleasure and I embraced it whole-heartedly. In fact, so much so that two hour nap window passed rather quickly. I looked at my watch, thought, “Hmmmm…he should be waking up, I’ll go get him.”

And I did go get him.
But he wasn’t waking up.
He was in a full-blown seizure.

Biting his tongue. Staring into the distance. Shaking on one side. Not responding when I said, “Mommy is here.” Not responding when I said his name. He had even peed himself which he has never done in a seizure. I normally respond calmly to such situations but not this one. It scared the crap out of me as it caught me so off guard. I called to my husband who had thankfully just arrived home and then called 911.

The police arrived five to seven minutes later and I immediately asked if they had oxygen as I knew that was what he needed to end the seizure. They did and they hooked him up to a tank right then and there. He continued seizing. Normally after the oxygen he snaps out of it. He didn’t. The paramedics arrived a few minutes later and #4 still wasn’t responding. By now, I estimate that he had been seizing at least fifteen minutes…or longer. The longer the seizure (even if febrile) the worse. It took another five minutes or so for him to come to. But when he did, oh, oh it wasn’t the same as the past seizures.

He still didn’t respond when I said his or my name. He couldn’t grab my hands and when I held his, he couldn’t squeeze. He didn’t turn towards me when I said, “Who loves you soooo much?” He didn’t do anything. His eyes were wide open and it was clear the seizure was over, but oh, oh the effects were strong, stronger than before. In fact, he didn’t talk for two hours after. He didn’t walk normally for at least a day. In the past, he was back to a crazy toddler within twenty minutes of snapping out of it.

Folks, there is no sugar coating it, it sucked. And to be honest, I blamed myself and I still kind of do. Why didn’t I check on him more? Why didn’t I stay with him? Why did I ignore the moan? Even though I know it wasn’t my fault, even though I know that I couldn’t have stopped the seizure, even though I know I did nothing wrong, I still blame myself. I would do anything to have made that seizure not happen, and not just because it was an intensely awful experience for my son, but because in the after effects, in the moments where he wasn’t himself, I felt, no truly, deeply feared, that I had lost a part of my child.

The rest of the week #4 suffered from a 105-degree fever and virus. We were on emergency room watch because not only wasn’t he eating or drinking, he was also quite lethargic and complaining of neck and head pain. It wasn’t a fun week. He has recovered from it all and is happily at pre-school, but I haven’t recovered. Because I know what is next.

This Wednesday I will take him back for more brain testing. There is a growing concern that because #4’s febrile seizures are so long and complex (mirroring that of a temporal lobe seizure) that he is in the small percentage of children for whom the febrile seizures aren’t the cause of, but rather a strong predictor of, epilepsy. As our pediatric neurologist said, “We need to know if he is going to have a seizure while playing by himself or in his sleep.” Yes, 4 out of 5 of his seizures have been in his sleep. How much does that suck?! Talk about scary.

It has taken me two weeks to share this because the seizure experience was so bad that I have been walking around in a state of denial for two weeks. So bad that I just feel numb. So bad that I am not even talking about it which really, is just not like me. I just don’t want to think about that moment, I don’t want to think about the fact that all my old concerns are now real and alive again. But they are. They very much are. I am back to the world of living on seizure alert, of worrying that another seizure will happen and that like #4’s past, the next one will be longer and more intense than the one prior. Even if his tests are clear Wednesday and show no signs of epilepsy, I now have another year ahead of me to be on alert. And that my friends, is immensely overwhelming and scary, for both of us. For all of us. And well, I am not even writing about the immensely overwhelming feelings I have about what if the tests aren’t clear?! What if he does have epilepsy? The truth is folks, I am terrified about it all, about having to live on alert again, about what the future tests hold. I know I “can’t” worry about the future, but gosh is that hard right now.

And yet, for the first time in two weeks, just from writing this post, I feel slightly more confident that I can handle it, I feel slightly less terrified. Yes, my mind just went to The Orange Rhino Challenge. How do you like that 😉 A year not yelling seemed so daunting. But I did it. I survived it, I managed. How? I went moment by moment, day by day, and I did it with support. And that is what I will do now, here, in this situation. Moment by moment, day by day, I will celebrate being seizure free and I will seek support from friends, family, and doctors to get through this period. And we will get through it. We will. We will.