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Epilepsy Blog Relay: To my caregiver, in sickness and in health

This post is part of the Epilepsy Blog Relay™. Follow along all month!

“Who knew that when we said for better or for worse, it would be worse but for the better.” – Jean-Paul Bedard

Shonet’s Story

“I take you to be my partner. I promise to be true to you, in good times and in bad, in sickness and in health, I will love you and honour you all the days of my life.” For those of us who are married, these vows are quite familiar. In fact, we often exchange them without really thinking about what they truly mean.

Ten years ago, my husband and I did the same. Little did we know, we would have to literally live out the hardest part of them in our lifetime.

So let’s flashback to 2012, when our seizure journey began…and I say “our” because illness of any kind (especially chronic illness) not only affects the person going through it, but their caregivers as well. It was about three years into our marriage and eleven years into our dating life (yes, I know, we were babies ;-p). What had started as a normal evening, which ended with us in the ER and doctors running all kinds of tests on me.

On Driving

In an instant our lives changed forever and the first blow was my license suspension. Now, I know that seems like a small piece of this puzzle we had found ourselves in, but driving for me meant so much more than just getting from A to B. It meant independence and freedom, and not being able to do that, limited me in so many ways. So now my husband had to take on that role (which he loves to do by the way!) and drive me around everywhere. I struggled with that for a long time as I had never felt so dependent on someone, especially after working so long to grow up and actually be independent. Sometimes we joke that he is my personal uber driver ;-).

As time went on, he took on so much more than just driving me around. He became my walking, talking medication reminder, who came with me to all my doctor’s appointments and even kept my personal seizure diary updated. There isn’t a day that goes by without me hearing “Did you take your medication yet?” He is the only one who recognizes when I have a seizure or am having an unsettling day. He tolerates all the emotional ups and downs that come with seizure medication; irritation, anger, sadness, etc. (Kepprage, as some of my fellow epi friends might know). If I am too fatigued, he makes sure our life clocks on as normal; even if it is after a long day at work. He often sacrifices his own sleep, so I can sleep better. This was especially true when we had our daughter. I am probably one of the few moms who can say I slept beautifully after I had my baby because guess who did the night feedings, Dad! And he went to work in the day too! He alters his schedule to make sure he can drive our daughter to and from school, to doctors’ appointments, to weekend activities and more. He takes the time to help out with all the household chores and even backs me up in supporting my own family.

Over the last few years, as I have worked through my illness and career goals, he has joined me on the ride as a calm presence, always making sure he is there to catch me if I fall. In spite of having all of this on his plate, he never fails to make us feel special, whether it’s a birthday, anniversary or a personal accomplishment. I always cherish the card and bounty chocolate I get any time we celebrate a special occasion! He is the best Dad and husband, and looks after us even more than he looks after himself (the latter of which I have to literally impose on him and remind him of on a regular basis). And while some people would say these are just normal things partners should do for each other, I think in situations of illness and disorders, caregivers go above and beyond than what is normal, so we don’t feel the pain we go through. Several people have told me that I am lucky to have a partner that has stayed by my side even after my diagnosis; apparently it’s not always the case. And although we don’t think of it that way and I would do exactly the same for him, over time I have learned to be grateful for him. Through all our struggles with coming to terms with my diagnosis and finding our new normal, I think we have found a new appreciation for each other that is beyond what we would have experienced if it were not for epilepsy.

Ten years and counting

So as we celebrate our 10 year anniversary this year, I wanted to dedicate this post to my personal care”giver” and say “I, take you Rex to be my husband all over again. I thank you for being true to your promise and for loving me in good times and especially in bad, through my sickness and when I was in good health. I’m gonna love you forever….forever and ever, Amen. Happy Anniversary and happy Father’s Day.”

For all of us that have partners, parents, kids, siblings, family, friends, who are like family that look after us, we need to always remember that they are true warriors who watch over us every single day. And as we continue to spread our message about epilepsy in all its glory, let’s not forget to care for our care”givers” and celebrate them too.

NEXT UP: Be sure to check out the next post tomorrow at www.epilepsydad.com. For the full schedule on bloggers and more on epilepsy awareness, visit https://livingwellwithepilepsy.com.

Follow Shonet Dsouza:
I am a passionate advocate for diversity and inclusion, a public speaker, blogger and guest contributor, working towards increasing awareness on issues around invisible disabilities. I facilitate and engage conversation across various organizations, government bodies, universities, and the general community. I am an Ambassador at Epilepsy Toronto and Global Epilepsy Exchange and a member of the United Way Speakers Bureau. I work as a Talent Strategist with Powerhouse Talent Inc. assisting organizations with talent attraction, developing their employer brand and recruitment marketing strategy.

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