Our life went from “normal” and uneventful to dealing with a scary diagnosis and multiple medical appointments in the blink of an eye. We had to quickly adapt and learn many things I had never even dreamed of. I wanted to share our journey about living with a child with epilepsy.
We have been living with a child with epilepsy for almost 3 years now. I am hoping our story gives hope to someone else and can help someone who is just starting on this journey. Many things have changed and improved in the last three years, but we still have unanswered questions.
October 3rd, 2020 is a date I will never forget.
It was an amazing day and was the last “normal” day. At the time we didn’t know that life as we knew it would change forever.
We planned to have our son’s birthday party on October 3rd, 2020, but ended up canceling it because his little brother was sick. We still wanted him to have a special day. So, my husband and I decided to make it a fun day with our kids. We played games, ate cake, and spent quality time together.
We took a picture of all 3 of our children right before our son blew out his birthday candles. The smiles on their faces are priceless. They are all so happy and it was such a great day!
What we didn’t know at the time, was the next day our lives would change as we knew it forever. It actually brings tears to my eyes thinking back on it now.
The next day, on my son’s actual birthday. His 3rd birthday. He had his first seizure.
Up until that point, he was a normal healthy little boy. One minute he was running and playing and the next minute he was having a seizure. It was terrifying beyond words. I can’t describe to you the helpless feeling I had watching my son go unresponsive. Not knowing what was happening or why it was happening was horrifying to experience as a parent.
While he was having his seizure, I was so terrified and I could not think straight. I couldn’t even remember our address.
He was brought to the hospital via ambulance. We were told that sometimes kids just have one seizure and then they never have one again. We were not that lucky.
I barely let him out of my sight for about a week. He slept between my husband and I so I could keep a hand on him to make sure he was breathing. I was definitely a helicopter mom, which was completely exhausting!
After about a week, I was starting to let my guard down a little. I was starting to let him out of my sight for very short periods of time.
Exactly a week after his first seizure, he had another one. We were just sitting down to eat supper and I had my back turned to him while I was getting the kids food ready when I heard a loud thud. As I turned, I felt that sinking feeling again. This time he fell off a chair hit his head. So, he also had to deal with concussion symptoms after the seizure as well.
I had to focus on taking a few deep breaths to avoid panicking. Thankfully my husband was home. We immediately took him to the hospital again while our amazing neighbors watched our other children.
This time, he had several tests, labs, etc. and was given a referral to a pediatric neurologist.
I can’t even begin to describe how terrifying it is when something like this happens to your child. It’s hard to feel helpless. It’s hard when you aren’t sure what is wrong or how to fix it.
Our lives have certainly changed since that time.
He is on medication to prevent seizures and he hasn’t had a seizure in almost 3 years! He’s growing, learning, and thriving. What he has overcome is amazing.
I don’t want to focus on his medical journey because that is another story for another time. I want to focus on the changes that have come from this.
Our lives have changed whether we wanted them to or not. Some of the changes have been good and others have been not so good.
Difficult Changes
- We have to make sure everyone who watches our son has training on seizure first aid and is comfortable caring for him if he would have a seizure. This limits who can watch our children, and leaving him is always difficult. The back of my mind always wonders (no matter how trained and capable the family member or friend is):
“What if something happens? Will they respond appropriately?”
- He started school this fall and that was also a difficult transition. It was hard to let him go, even though I knew it was what he needed. It took more work and effort on both my part and for school to make sure they were prepared and everyone was trained.
- Our oldest is 8 years old and she has been trained on what to do if her brother has a seizure. It makes me sad to think that is something my 8-year-old knows all too well.
- We watch him more closely than our other children. It was hard for about 6 months after the second seizure to even let him out of my sight. I slept with my hand on his chest for months afterward. I was so afraid he would have a seizure in his sleep and I wouldn’t be there to help him.
- It definitely put a strain on our marriage the first year or so.
- We had a hard time leaving the house without him because we were worried about something happening while we were gone.
- We were both stressed about his medical condition, managing medical appointments, caring for him, etc.
- There were many increased costs and that was challenging for a while.
- We didn’t have as much time to help our relationship grow and thrive and we had to learn new ways to spend time with each others.
- It was hard for a while, but we kept working together and kept communicating to help our marriage thrive again.
- I was very anxious about it for a very long time. I had to work very hard to decrease my stress and anxiety. Check out this post for strategies that I use to decrease my stress and anxiety levels.
- It can be a bit overwhelming dealing with multiple medical appointments and just fearing the unknown when living with a child with epilepsy.
Positive Changes
It hasn’t all been negative changes for our family either.
There are some great things that have come from our epilepsy journey and living with a child with epilepsy.
- I started working part-time, instead of full-time, so I can stay home with our children more. That is an opportunity I will forever be grateful for and I will never regret making this decision.
- I can tell you that my stress is significantly lower since I started working less.
- It has brought us closer together as a family and has improved our communication skills.
- It has brought us closer to our community. So many people in our community have helped us in ways we could never imagine. It’s amazing the support we have received throughout this journey.
- I work in the medical field and it has brought me an even greater appreciation for my fellow workers in the medical field.
- It has helped me to be more grateful for what we do have and helped me to focus on living more in the moment. Check out these great tips for how to be a better mom and wife.
The Epilepsy Foundation has been an amazing resource for questions and training. This is a resource I did not know even existed. Since my son’s diagnosis, we have discovered all of the wonderful things they do for patients and families. We have both utilized many of their services and also donated what we can towards this amazing foundation.
I would highly encourage anyone that is affected by seizures to reach out to your local epilepsy foundation for resources and help. They are such a wonderful resource! I can’t give them enough praise!
After this diagnosis, we have a new “normal” for our family. I would do anything in the world to take all of this away from him, but that is not our reality.
Our reality is that we have to manage this disease while also helping all of our children have as “normal” of a childhood as possible. We are grateful that he’s been able to go 3 years (and counting) since he had a seizure. But it’s a balancing act.
We are grateful but we also know that things can change in an instant. His medication can stop being effective at any time, and the seizures might return.
We don’t know the future, but we have to be prepared for things to change and we have to be prepared to deal with those changes. But in reality, our life and our health can change quickly at any time for any of us.
We must teach our children how to overcome obstacles and how to make the best of what we have. We have to be grateful for what we have at this moment in life.
We have learned so much and grown as a family in the last 3 years. I am not writing this for people to feel sorry for us because right now things are really going so well for us. Living with a child with epilepsy hasn’t been all that bad for us compared to what some people have to go through.
I am writing this because I hope this can give some inspiration to others going through a hard time. There is a light at the end of the tunnel. It might take a while to find it, but there is always some light. There is always something we can find to be grateful for.
The best advice I can give someone on a similar journey is to take things day by day, give yourself some grace, and find some ways to help you relieve stress.
Also, make sure to hold your family tight, give them extra hugs, and be grateful for what you have at this moment.
