It is what it is

Seizure
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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.”

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George Turns Eight

We are going blindly into each new phase, just hoping that we are creating good core memories and raising a good human being. Most days I go to bed thinking how I could have done better, been more present, shown more patience, etc, etc, etc.

George, however, had a big year regardless of my over-worrying. Being our first born, he continues to show me the way.

We really turned a corner in school this year. This last year came with many learning moments, advocating for his needs, and trying different approaches to his education. He has been a little wild since the day he was born, and we definitely saw him mature over the last year to settle in at school. He has learned so much, and now he is a reading machine. Tom and I cannot spell things out in code anymore because he catches on faster than I can get the letters out. He also continues to challenge me to not project my definition of success on to him. Every day, I am also learning from him to be patient and lean into alternatives to be intentional with him. As he is learning about the world, he continues to open my eyes right along with him. I am so excited to see how he continues to grow this next year.

He is starting to hone in on his interests. He is really loving soccer, and with each season, you can see his determination grow. While I am sure we will continue to see his signature helicopter move for a few seasons to come, he has started to show some real promise and skill. He joined Cub Scouts this year, and from the first meeting, I knew that we had found his thing. He has loved every activity and moment as a scout. He cannot contain his excitement at each event, and it is so fun to watch the joy he has. It’s definitely a core memory watching him place at his first Pinewood Derby contest. He also dialed in on Star Wars, Pokemon, and Minecraft this year in a way I was not prepared for. So many times this year, he has shocked me with his understanding of the complexities of these universes.

The dynamics of relationships this year made a switch. It was very evident that we had entered the big kid phase. We are now in the stage that not everyone is automatically his best friend, and friend groups are being made. You can see little pieces of his innocence falling off as we have to step up our game in the types of conversations we had. We talked through how he navigates relationships with kids who are being unkind and how to remain true to who you are even when the crowd is going in a different direction. You never want to see your kid go through these challenges of peer pressure, but we have had to have hard conversations about our actions and what they say to others. There have been moments that we watched him struggle and as much as I want to shield him forever, I cannot. At the end of the day, I am so proud that George walks confidently in who he is mostly unabashed about what others think of him. I wish I had even an ounce of his confidence and carefreeness, because he either thinks everyone loves him or he does not seem to be bothered when they don’t. We received many comments from teachers about how kind he is and how he would tell classmates no when difficult situation arose. He is also extremely loyal to his people. If he has imprinted on you, you now have a hype squad for life. It was so fun to watch him create those connections this year.

Ultimately, this kid is too cool for me. He is so smart and follows his dad in quick wit. He tugs at my heartstrings. He is hilarious and creative. He is passionate and strong-willed. He can deliver the best stories and the strongest hugs. He finds the silver lining in everything and finds the meaning to things that others may have cast away. He is always a little wild from the way his hair constantly stands straight up or the way he brings his energy into every room he enters. Nothing is simple with this kid except that he has my heart forever.

Having him changed me forever, in the best and messiest kind of ways.

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Year 11

Today, Tom and I celebrate eleven years married.

As we reflected on this year we really couldn’t think of anything gigantic happening.

But then we started thinking about all the small moments we had this year.

George is really blossoming and figuring out his way at school. He is learning to read at lightning speed, and he joined Boy Scouts this year. Watching him become someone outside of our unit is such a bittersweet thing!

Daphne started and finished pre-K, and we really are starting to see her come out of her shell. She is a beautiful soul, and I cannot wait to see her in kindergarten.

And Wally. We are starting our last firsts. He is our last baby, and so with that comes all the firsts for the last time. He is the last to learn to walk in this house. He is the last for us to hear talk for the first time. We are trying to embrace all these little moments with him.

And with that, on the plus side, I am out of the breastfeeding fog. This is always a freeing moment. While I love being able to provide that experience for my babies, it really does change our life when I am not tied to that time table of feeding any more.

We also both experienced a lot through work.

Tom is now certified as a combat firearms instructor and a law enforcement jiu-jitsu instructor. He is very passionate about training officers, and these both were significant steps in his career to learn more about his field.

This last year seems like a blur to me work wise. I had so many growing moments with “other duties as assigned” and had to pivot many times in my leadership role. I took on supervising two other departments temporarily while other things at the institution shifted into place. Both of these areas where new and made me stretch in ways I could never have imagined. I led campus wide initiatives to impact culture changes, which can be hard but also fun and inspiring to navigate through the challenge. Fortunately, I am surrounded by phenomenal colleagues who help me learn each day, and I am grateful to be where I am. I am extremely proud in the work that I do, and this year, while hard, made me realize that even more.

We didn’t last long as a no-dog home, and we brought Daisy into our lives. I honestly don’t know how we could have found a better dog after Grace and Crosby. She is seriously the most docile and sweet thing who we have had to do zero training with. She just is a happy go-with-the-flow kind of dog, which perfectly fits into our crazy little family.

Being together this long is no easy feat.

It is not as simple as “just don’t give up.” Every day is its own small thing. There is always something to solve together. It could be paying down debt, who is taking Daphne to gymnastics, what new show are we going to commit to binging, or how do we advocate for our kids’ needs at school.

Marriage is fixing and deciding these things together. You pick someone that you want to do the hard stuff with, and then the good stuff is the bonus part. These decisions become more impactful when you choose someone to share them with.

We have learned that everything happens one step at a time. We didn’t just all of a sudden become married over a decade. It was a lot of little commitments to each other over the years to get here.

We still have the ability to surprise each other. Both of us are still striving every day to be better than we were the day before. So in a sense, we have never gotten truly comfortable and said this is good enough. We are still learning about each other and ourselves. We have both gone to counseling, and we are constantly looking for opportunities for growth. We make an effort with each other every day to connect in some way. And for us that is the only way that this has been successful.

15 years ago, many people considered our success a long shot (or a no shot). Just a summer romance that would sizzle out. But here we are coming off of a vacation with three kids happier than ever. Eleven years married and many more ahead!

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37

As I sit here at the end of my birthday today, I can only smile at the life that I have been given.

There are certain moments of the year where I get reflective and take a moment to be thankful of what I have been given and my current place in life. Things have never been completely easy, and this last year was certainly not a walk in the park. However, my birthday has always been one of those times each year where I can pause and soak in my blessings, see how I have grown, and be thankful for those surrounding me.

This past year was a true testament of how investing in my own growth matters. It was the first year that I can honestly remember ever that my anxiety was not crippling. There were many trials this year that would have sent a younger me in a spiral. Now, has the constant overthinking stopped? Not at all. However, I have become more confident in who I am and learned strategies to knock away the self doubt.

I don’t have to be perfect. In fact, I am far from it. This year I am finally coming to terms with this. God uses broken leaders. There has been peace in finally accepting that I don’t have to be perfect all the time, and being broken doesn’t mean that I can’t still move forward. It only took me three decades to get here, but we all run our own race. (Hebrews 12:1 is one of my favorite verses.)

I talked about the start of my counseling journey last year after giving birth to Wally, and honestly that was a game changer for me. I have learned so much about how to truly accept myself and starting to understand I am not responsible for other people’s opinions. This is still a hard journey, but at 37 I am finally letting some of the things go instead of replaying old conversations that happened yesterday or even 20 years ago. It’s nice to look back at the post, and realize that the work that I have been putting in has been paying off.

I may not be the strongest, but I am stronger.

I may not be the wisest, but I am wiser.

I may not be the healthiest, but I am healthier.

I may not be the best, but I am happy with who I am.

There is not a quick fix in this life, and I am by no means perfect, but I am finally enjoying the journey. Intention has been my focus. I have learned this last year to control my thoughts more deliberately or to reconstruct them when my anxiety does settle in. I have learned to engage in projects with my whole self and know that I am there for a reason even if I don’t understand the why. I have learned how to be better than I was the day before, and even if I wasn’t there is humility and peace in trying again in the next moment. I have learned how to believe in myself.

In the end, I have my family and a purpose in life greater than I could have ever imagined. If my kids were to look back on this moment, I want them to be proud of who I am, and I finally feel at ease with that thought.

So here is to another year around the sun as broken as ever, but more free than ever before.

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Experiencing the Middle

Tomorrow Daphne starts school. This is significant and I have many emotions, but at the same time it feels so different than when we started school with George.

George was our first. We didn’t know what to expect with him. I was overcome with fear and anxiety on how the experience would be for him.

With Daph, we are more familiar with the process, and she will even have the same teacher that George did in preschool. We know that she is in the best hands to bring her into the school atmosphere. She will be just down the hall from George, and there is comfort knowing they will be so close together. He has already said he will watch for her at recess.

But there are still emotions being here in the middle with her.

I don’t have the fear of the unknown like the first time around, but I also know she isn’t my last. I feel excited for her. We all seem more ready for the experience. I don’t feel the hesitation that I did with George, nor the bittersweet that I know will come with Wally being our last.

Do I worry about how the experience will go for her? I mean come on, have you met me? I am always riddled with anxiety, however, I am finding myself at peace much quicker with her. I am so excited to see her go off to school.

She has never been out of our house for any type of school, and one hour of gymnastics once a week for the last year is most social interaction she has gotten outside of our family. So in a sense there is still a lot of unknown of how she will engage with her peers. But I know as soon as she warms up, she is going to make some great connections.

I really feel like she is going to soar. The brain on this child is limitless, and I know we have only tapped into a small portion of her capabilities here at home. She has a heart of gold, and the kindness that she has for others will take her far. She is the type of child who will flourish in a school atmosphere, and I can’t wait to hear all about her experience. This time around all I can think of is all the great things she will have access to and how much she will enjoy things. I am not worried about letting go with her at all.

Which is somewhat weird because I am sad thinking of some day this little girl won’t sneak into my bed and her sweet little voice will be a distant memory. Also you would think being a female, I would be worried about all the social pieces that come down the road with her and school. But I am not worried at all. I am ready to see how she embraces the challenge and confronts the pressure head on. She is so strong-willed and tough as nails. I don’t know what it is about this transition that seems just so natural and normal for her, and again there is so much peace with her going. She is far more a stronger person than I ever was, and she is so smart and capable.

Maybe there is just so much going on around in our lives that I just don’t have time to really wallow in how she is growing as I did with George. Who knows?! But I will take not having a breakdown in front of her teacher because I am so caught up in the ‘what if’ emotions.

She has been living in George’s shadow for most of her life, and now Wally takes up some of the attention that was aimed at her. Again, she is our middle. So I am thankful to see her go off into school where she can start making her own path independent of her brothers.

With George I think we were all scared when this day came because it was all new to us. When it comes to Wally’s time, I know I will be the most emotional parent there because it will be a sign of all the littleness leaving our house. So for now, with Daph, we are able to really sink into this time and enjoy it. It is nice to experience it like this for our middle child.

Here’s to you Daph and all the things you will learn this year, and the person you are becoming.