When you become a parent, there are talks of sleepless nights, methods for dealing with runny noses and conversations about general sickness. We are warned about temper tantrums and the rise and fall of emotions.
But how to look for a seizure? Absolutely never a conversation we had.
It is one of those things that I am sure we all have seen on TV or movies, but never truly stop to think about how that may look in your world and with your kids.
As of a couple weeks ago, our life will never look the same because a seizure made its way into our reality.
Tom and I were watching TV when we heard Wally screaming. This is not abnormal behavior for Wally recently, and usually he is quite the bear to get back to sleep. He is very reactive waking up in the middle of the night, and it takes us several tries to lure him back to sleep.
So, when Tom yelled for me to come help him, I didn’t really think anything of it.
But as I walked in, I immediately knew something was wrong.
Tom had found Wally face down in his crib lying like a T, but just screaming.
The noise he was making was like nothing we had ever heard before. It was like a monotone screech.
His body was odd. It was like he was limp and stiff at the same time. He was not reacting to us picking him up at all with his body, but you could see the terror in his eyes.
I laid him down on our bed, and he just laid there like he was a doll. Normally, Wally would have climbed his way back on me immediately like a wild spider monkey, but he did not react besides the scream.
And then I started seeing his eyes roll back in his head, and I turned to Tom and said, “I think he is having a seizure.”
He was having a seizure.
We all started panicking, but Tom and I went into survival mode. I told Tom to go call 911, and I went back and forth from holding Wally and keeping him comfortable on the bed. I tried soothing him him the best that I could, all the while getting zero response from him.
His little body was limp and would go in and out of tremors, all the while his eyes were rolling back and forth into focus. When I could tell his eyes were with me, it was like he was trying to signal something to me.
We were both terrified.
And there was nothing I could do but watch. I felt so helpless, and here is my job to protect him, and there was nothing I could do to stop what was happening to him.
I am not sure the time that passed, but I would say the seizure lasted for at least 5 minutes if not closer to 10. It felt like an eternity for the ambulance to come.
Once they did arrive, Wally had stopped seizing. We decided for him to go to the ER to get checked out and be monitored in case another one came.
And here starts our education on what life with seizures could be.
I watched them put my two year old in an ambulance and then I drove behind the ambulance to the hospital. Tom rode with them, which honestly was a Godsend so I could have a break down in my car privately.
I cried the entire way following that ambulance. I knew nothing about what we were in for. I was scared for Wally. He is only two, and what does this mean for his life?
My anxiety went into overdrive.
Did we miss signs from the day?
Is this going to impact his development?
What happens if this continues?
What if? How come? Why didn’t we?
Fear overtook my ability to be logical.
Looking back, there was nothing about the day that stood out as a sign of something to come. He did not have any fever, ate normal, acted like the wild two year old that he is. There was no way for us to know.
Once we got to the hospital, the tests began.
They took a blood sample first, which they had to give him loopy meds for him to calm down to get the needle in.
The blood tests all came back normal. So no signs of viral or bacteria causes.
The next step was admitting us over night to do an EEG to get more information to a neurologist.
Wally does not like to be touched in general but add in the factors for strangers, exhaustion, and scary machines. This was torture for all of us. It took about 30 minutes for them to put all the EEG things on his head. 24 little nodules that they had to glue to his head while Tom and I both held him down. This was at 3 in the morning. I will never complain about having to wrestle him to get a diaper on again. That is a piece of cake compared to this experience.
Once it was on, we could not get Wally to sleep alone, which is a surprise because Wally has never been a fan of co-sleeping. I wasn’t mad about having to hold him for the rest of the night.
So the wait began.
The EEG monitored him for about 5 hours before the neurologist came to see us with his thoughts.
The EEG came back abnormal, and the neurologist confirmed the seizure from the reading. However, there was nothing else conclusive to share at that time.
They set us up with an MRI and a two follow up appointments: one with our pediatrician and one with our new pediatric neurologist.
Wally now has an neurologist.
My brain could not keep up with the information that was coming at me. I heard words explaining the medicine and the signs to look for, but honestly it is a blur.
The neurologist did explain that seizures are more common in toddlers than people realize. And all I could think was why no one prepared me for this. I guess the development occurs so quickly in toddlers that for some it can cause essentially “skips” in the brain communication in turn causing a seizure. They explained more, but that is what I gathered from the conversation.
And honestly I have refused to Google really anything since. I am scared the rabbit holes that I will be sending myself down to, and I am trying to have trust that we are getting the tests necessary to find out answers. My anxiety does not need to be diagnosing anything from the internet.
But the reality is that we may never have answers. It may be something he has routinely without warning or he may never have one again.
We may never know.
What I do know is that we are taking care of him, and we definitely listened to our guts that night, but it is scary to feel like we have zero control on this situation.
But here are a couple things that I have realized after having some time to process that night.
My feelings were a super power in that moment. My concern that something was off helped me in this situation. Who knew that my anxiety would help me lean into my instincts and shift into action to get care for my child?
The first 48 hours were honestly really debilitating. There have not been many moments in my life that I have felt that low and at a loss for control. I didn’t sleep, and I cried almost instantly thinking and overthinking every breath and move he made. I felt guilty for not having my eyes on him 24/7, which brought me to my knees. Through that reflection, I realized that fear could either define and limit me or I could process it and continue to move through it. I had to push myself to understand and accept that this unknown life with seizures is our new normal. That meant moving on with our days and going back to work, and not letting that fear dictate the kind of life we had. And eventually I have started sleeping again. There is not a day that doesn’t go by where I don’t think about it, but I can say it is not continued to be all consuming as it was that first week.
I am so thankful for Tom and I’s partnership. We were able to lean on each other during this to provide support, comfort, and stability through this difficult time. We both utilized each other’s strengths to provide Wally the best care imaginable, so for that I am truly grateful to be walking together through this.
I am usually pretty private with how I am really feeling with my anxiety. For the first time in my life, I actually communicated out that I was not OK. This was a huge step for me as I often don’t let people in to see that or ask for help. There were moments where thoughts entered my mind of how I could do certain things to meet all the responsibilities at home and work even though this huge thing just happened to us. I was able to catch myself and put some boundaries so I could honestly grieve. Because there is an element of grief here. Our life prior to that Sunday night is no more. And walking around like I was OK was not helping me. I was present, but I let my feelings out and shared them. I delegated things that in the past I would have just shouldered with my plate of armor not letting anyone in even though I was screaming inside that I was drowning due to the armor being to heavy. In a way this grief gave me permission to just let some of that facade go.
I don’t think we as parents are every fully prepared for these types of events. Not only the advocacy for your child and learning medical terminology, but also the emotional and physical toll that it takes as the parents who have to burden this weight. There is this push and pull of being strong and of sound mind to take in all the information and process it in order to ask the right questions and be the champion for your child but on the flip side your own needs are being stretched thin, but then you feel guilty for taking care of yourself so down this spiral you go trying to navigate a medical journey that is scary in its own right but when it is your child it is a whole other level of scary. I don’t know if it every makes sense but it is emotionally, physically, and all the things draining. It is a lot, and while it would have been nice to have known the possibility, I still don’t think you are every fully ready to be in this position. So with that I need to just focus on what I can do, what are the facts we know, and be willing to share with others more because all that is certain is this moment.
We have several appointments set up in January to hopefully find more answers, and for now he is on preventative medicine. I share this now because I felt so unprepared, and I wish I had known more in advance. While I am no medical professional, I hope that hearing some of these things may help someone in the future have their feelings and gut instincts perk up louder for their child.
In case you have not talked about seizures, here were things shared with us:
- Seizures can present in many ways: fainting, convulsions, twitching, loss of consciousness, etc. They can be talking, or in our case, screaming through it. The eyes rolling back was the big signal to me beyond his body movements.
- During a seizure, turn that person on their side and check for any airway issues.
- Loose clothing if feasible.
- Time the seizure, and document for yourself how the person acted. There will be A LOT of questions about their movement.
- Call your doctor or 911.
Wally is seemingly back to normal, like it never happened. I, however, am forever changed. Will I forever wonder if today is the day for it to happen again, possibly? Am I OK today? Sometimes the fear still over takes me. (I cried the entire time writing this.) It is still a very vivid sight and sound in my mind, and there are moments where I am still reliving it on a loop in my mind. But I know I will eventually be OK, or I will be better equipped to move through the fear when I am not OK. I think I will forever be learning how to let others in and help when I am struggling, but I feel progress happening there. I am hoping that eventually we will have answers, but I have to trust that God will provide me comfort any way that this will go.
On a side note, hearing your two year old sing Mickey Mouse “Oh Toodles” while high on sedation medication during this process was a place where I think God said “hey you are struggling so here is this moment to lean on and smile at.”