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. Sunrise

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!

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.

DSC_0054He 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.

DSC_1194And 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.

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16 thoughts on “The Truth Is…I’m Terrified.

  1. I cried and cried as I read this! I’m so sorry for what you’re going through! You’re not alone. My now five year old didn’t start having febrile seizures until he was almost four, very late to start. He had four of them that first six months. It was so scary! When he had the first one he was by himself in the shower.i heard him fall and ran in to see him on the floor. I thought he had hit his head, and thought the worst. It was a relief to find out what it was. But now he is still having them pretty often. The longest he goes is a couple months without. While on vacation in June he had one in the swimming pool. I don’t even know how long he was under the water. We did chest compressions and he started breathing again, but we went to the er just to be safe. He had another one in the abulance that it took meds to stop (they have never lasted more than 30 sec) and another while we were in the hospital. I live in constant fear of them now. That time I had no warning, his fever spiked so fast! He started school three weeks ago, and I’m so afraid of not being there with him. I’m not sure what the point of telling you all of this was 🙂 but you aren’t alone.

  2. I’ve been following you for a year now and find your posts inspiring! I hope your son finds healing and answers soon! That’s so scary for a mother to go through. Sending you love!

  3. Thank you so so much for sharing this post and I am truly sorry you and your son are having to go through what must be an extremely challenging time to say the least… one day at a time:-) Sending positive thoughts and best wishes all the way from Australia. xx

  4. Reading your post was heart wrenching! As a mother, I can feel your pain and desperation through your words. Thank you for sharing this with all of us as a reminder of just how precious each moment is and how we really can make it one moment at a time.

    I did want to mention an idea I saw and shared with a friend who has a son with epilepsy and night sleeping seizures as well. I read that there are specially trained service dogs to detect when a seizure is coming on and alert the parents or care giver. Perhaps this might be an idea for your sweet family.

  5. hey O.R. 🙂 First let me give you major cyber hugs (( <3 )) secondly let me say, my #2 son has almost died on my watch. I was in the room with him. (hospital) a nurse came in and gave him liquid tylenol in the dark. (it dribbled out his mouth). He moaned and ground his teeth for hours (I thought it was just pain from a procedure he'd had done earlier in the night). When the neurosurgeon came in at 6am and flipped on all the lights for rounds, he immediately called one step above code blue. I saw the tylenol down the front of his chin and realized he'd been this way for over 5 HOURS. His nurse never came to check his shunt output (should have been several hundred ccs, was less than 50) so all that pressure was building up all.night.long. He is still not the same. He had to have corrective eye surgery 6 mos. later as a result. We went through MONTHS of terror where I was afraid for him to sleep…and HE WAS AFRAID TO GO TO SLEEP. None of us slept. But time does have a way of buffering our fears, that was 6 yrs ago now. Yes at any moment he could get sick again, and we live 2 hrs from the Children's Hosp. Just breathe momma. This will go by and you'll feel safer again. All this to say, I've been there, I will pray for you guys during this time. Much love coming your say, melzie
    (my son has spina bifida/hydrocephalus)(not seizures)

    • Oh my Melzie. My heart is pounding for you right now. I am so relieved to know that you are now 6 years past that incident; I just can’t even imagine. Thinking of you too!

  6. You are all in my prayers. You are such an inspiration on so many levels. I don’t think you know just how strong and inspiring you are. Praying for healing, strength, and peace.

  7. i am very sorry to read your pain and all what your son and family are going through.
    we live in Washington DC. Our son is trouble free after a few sessions only. PM me for more.
    Take good care.

  8. I’m so sorry. I am heartbroken for you. I am glad you are sharing this trial – sharing your journey to not yell (and sending the message that yelling is not ‘ok’) has helped so many. I embark on my first challenge tomorrow.

    I am saying a little prayer for your whole family.

  9. So very sorry you are dealing with this. I sobbed reading it. You are a brave mom. Your son knows you are the one who loves him sooooooo much. He knows. You have to be brave, not beat yourself up over something that even if you had woken him up you could not predict or prevent. Stand tall, Orange Rhino. You can do this.

  10. I am so sorry you are going through this. There is nothing I can say that will comfort you, but, I will pray for your family. I will pray you receive all of the support you need during this difficult time. I will pray for healing. You are in my thoughts.

  11. Oh I just read your post! I am so sorry you are going through this… I am so sorry your son has to go through this! When things are out of one’s control it can be so difficult to know what to do. After following you for quite a while, I know how strong you are… You will push forward and keep helping your son. I think not knowing sometimes is the worst because as a mother all you want to do is help your child. You and your family are in my thoughts! Please keep us posted on #4 and how he is doing!

  12. How do recover from an experience like that? What a terrifying thing for a mom to have to watch her child go through. I’m so sorry you had to endure that.
    Not wanting to over-simplify your journey with your child’s seizures, and I’m sure you’ve probably already experimented with diet, but I couldn’t not pass this info along. I googled gluten child seizures…
    Read the comments down below, there are interesting stories.
    I know some people roll their eyes and refer to the rise in gluten intolerances as a fad, but we’ve had too many first hand experiences with people who’ve experienced major life changes just by adjusting what they eat.
    Our middle son was one of those. Major bowel issues that no doctor to date has been able to solve for us. Gluten was a big problem even though he tested negative for celiac. Rice and corn, and refined sugar had to go eventually too.
    Again, sorry if this info is old news for you, I just know as a desperate mom I was wanting to research anything that could possibly be the cause for our issues.
    I’m sorry if this comes across as being insensitive. Sometimes information is not helpful if the timing is wrong, but if it does prove to be helpful then I would hate to have not passed it along. Will be praying for you and your boy tonight…

    • Thank you Michele for sharing! It is not insensitive or untimely at all – quite the opposite. Knowing that others are thinking of us is a great gesture right now. I will check it out for certain. Best to you and your son – hope he continues to be well!

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