As a parent it means your world has permanently changed. You will never see things in the same way again. You dread phone calls from their school because you know that it may be THE call. You have many sleepless nights because of seizures and potential for them, as well as several due to stress. All of the emotions, stress, and fear you experience stems from your love for your child. It will all test your resolve, but your child is worth it all.
As a nurse it is a little different. It starts as compassion, and as you bond with that child it becomes a little more personal. It can be difficult to watch them have seizure, especially as you grow to care about the kid.
When your life has an intersect between these two, there's a whole lot of emotions you will encounter. When I became a nurse I didn't think I could ever work pediatrics. I knew that having a child with severe medical problems would make it like rubbing salt on an open wound. What got me the job in pediatrics was my experience with different seizure types, and my employer sees it as a specialty of mine. I have had moments where I feel like my entire life revolves around seizures. Having my daughter has definitely had a huge impact on my professional life. It has allowed me to understand what the families go through in a way that can only be achieved by experience. My education and experience has also helped a few times in caring for her.
In both aspects you will learn what true strength is. You will see strength in the child that will surprise you. It leaves me in awe when I reflect on the strength of my child and patients I have and had. You will also find strength in yourself that you didn't realize you had. Will you recognize it? Maybe not when you feel like you need it, but even then it's there. You will see it though, when you have some time to breath and reflect on the chaotic moments. During those moments though, you will need to remember they are just that; moments.
Caring for a child with epilepsy is a labor of love. It has bad moments, but it has some pretty great moments too. Caring for an epileptic child means you always hold on to hope, even when it feels hopeless. Taking care of a child with seizures is having strength you may not even be aware of, even when you feel like you’re at your weakest. Being a caregiver of an epileptic child is knowing what love truly is, and the limitlessness of that love.
Jason Walker is a father of two beautiful daughters. One of which is severely epileptic, and has other health and developmental issues. He is a LVN for the last seven years and has worked in pediatric homecare for over four years.