Seizure

Seizure

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.”

Beginnings and Endings

I have found that with parenting, once a new phase begins you are not only dealing with the excitement of the new phase but also the feelings of leaving another phase behind. The art of watching your kids growing up is bittersweet.

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This last week I have been pondering on this thought quite a bit as both of my kids are going through pivotal moments. We registered George for kindergarten, and Daphne is now potty trained and moved out of a crib.

I am not ok.

The stark difference of what these things mean has left me in a weird place.

THEY LOOK SO GROWN.

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I am so excited to see George start big-all-day-kid school. I love learning, and school was a magical place for me growing up. I see that curiosity in George, and I know he will love it. But there is also this sadness that there will be so much of his world that I no longer know. I wrote about the emotions of sending him off to preschool this fall, but something about kindergarten is even more momentous.

And with Daph, potty training is such a big step in toddlerhood. For the most part, I am so ecstatic to no longer have diapers in my house. I feel a sense of freedom for us all with letting her learn more about her body and taking control of herself. She also moved out of the crib like it was no big deal, however my insides were breaking since that bed had been a crib for both my babies over the last 6 years. And while I am so proud of her walking into this next phase with so much confidence, part of me knows that the diapers and crib were the last of the babyhood stage.

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The thing about independence is that I believe it is the thing we all hope that our kids have when they get older, but man is it hard to see it slip away.

It’s funny that there are many stages that we see coming, like registering for Kindergarten. I have seen this coming since he was born. Yet it is still hard to know I am watching a season of our lives end this year. I wonder all the time if we are doing this phase justice and doing all the we can to make it positively memorable and impactful.

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Then there are other stages that you don’t even realize are gone until you are well into the next one.

There was a day with both kids that it was the last time I rocked them to sleep, but I don’t recall thinking let’s change up the routine. I couldn’t even tell you when that stopped for both. In my head, I am distraught because how could I forget that!

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I am not sure which is harder on the emotions: the ones you see coming and plan for or the ones that change with more subtlety. Either way when the worry of one phase ends the worry of the new phase comes flooding in to take it’s predecessor’s place.

As we are entering full force into the big kid years, I am trying to remain present. As I watched Daphne this weekend, I was reminded that it is all fleeting. I wonder all the time if the snuggles George asks for will be the last ones or when Daphne decides she doesn’t want to make me a bedtime snack of plastic food before I tuck her in. My heart just breaks thinking I might miss the significance of the last ask. So let’s read an extra book or build one more Lego structure.

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It is like there is a little mourning that happens with things of each phase. There are days that I really miss the sweet newborn stages, but then I see moments like tonight where George came in to comfort his sister when she was hurt. If he stayed a newborn, I would never get to experience watching their relationship evolve.

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But that is the push and pull of parenthood I guess. There are often times we are looking for a phase to end and rushing into the next one (hello George at 4…). Then other moments I never want to leave the sweet innocence, or I look back and weep that they have grown so much in a blink of an eye.

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I am not sure I am really saying anything profound. Parenting is this weird mix of polarizing feelings. I am sad my babies are growing into big kids, but I am happy seeing how fun the big kid stage can be. I am sad that it seems that they need me less, but I am happy that they are figuring out their own way. I am sad that there are things about their lives that we will never experience again, but I am happy to welcome all the new experiences we will have together.

With the beginning of each new season, brings an end to another. There is some poetry in that I suppose. I could see that if we stayed in a season for too long, you would lose sight of it’s beauty. It does give us something to hope for with the change, and something to look fondly back on when we have forgotten the mess of it all. I guess we are in each season as long as we need to be, and we can thank God for that.

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These kids I tell ya. The things they do to my heart!

The Do It Dad

When Tom gets a project in his mind, he just does it.

And when the project is for George, there is no stopping him.

He loves taking Gdubs out to the shop with him. George is also obsessed with the shop so it works out. Whenever he gets out of the car, he starts sprinting towards the garage and throws a fit if he can’t get in there. Clarification, George is the one sprinting. Tom is the grown-up here.

George tries to open the door himself.

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George loves to help Tom. It started out with Tom making George a mini shovel, and it has spiraled into Tom making an entire set of miniature tools and machines for him out of spare wood.

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George is very aware of what each machine does and wants to be part of the process.

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This is where his independence sores.

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While he has no fear in this shop, he is fairly respectful of the capabilities of these items.

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He surprisingly has not gotten hurt once out here. The driveway however is a different beast. He is going to be covered in scrapes and bruises his whole life because he tries going faster than his little legs will carry him.

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Watching them bond is so very special.

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Tom is so good with him out here and makes sure to create an experience that George thrives in and will enjoy.

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Nothing is sweeter than watching my blue-eyed babes.

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He is growing up before our eyes, so these moments out in the shop are priceless.

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There are so many lessons yet to be had out here I am sure. It’s moments like this when he is out here kicking it with his dad that I will cherish forever.

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Also George climbed up this gate all by himself. So either we start teaching him as he sprints forward, or who knows what he will get into.