Navigating the unforeseen challenges of marriage and caregiving

When my husband, Jonathan, and I got married 17 years ago, there is no way we could have anticipated the hardship that lay ahead of us. While all marriages and relationships experience some measure of difficulty, the tumultuous seasons and trauma related to our daughter Avery’s Dravet syndrome diagnosis have been far more difficult than anything we ever expected to encounter.

In the early season of dealing with Avery’s seizures, anyone could see the visible impact of Dravet syndrome on every part of our lives. Her frequent prolonged seizures caused us to constantly fear for her life, as we experienced regular ambulance rides and hospital stays, while trying to maintain some amount of normalcy for our other young children.

This often meant that I would ride in the ambulance or stay in the hospital with Avery while Jonathan went to work or took the kids to T-ball practice, out on the boat fishing, or to a birthday party we were all supposed to attend. This tactic of dividing to survive, while necessary, sometimes began to breed a sense of jealousy or unfairness in the partnership dynamic of marriage.

In addition, the strain of trying to process this new and intense medical reality weighed heavily on both of us, and we also had the financial strain that comes with hospitalizations, prescription drugs, and medical tests.

We were in survival mode and often processed this new reality in very different ways, which frequently caused conflict. Thankfully, our tumultuous season of Dravet syndrome has seemed to calm down. As time has gone on, there is more of an invisible strain that caregiving for a child with Dravet syndrome has placed on our marriage. Most people from the outside may not even be aware of it, but it exists.

An ongoing commitment

We attended a marriage conference earlier this year, and the speaker asked us to write down anything unexpected that potentially had negatively affected our marriage. I found myself writing “Dravet syndrome” right in the middle of the page in big, bold letters. Nearly 10 years after Avery’s diagnosis, Dravet syndrome still has a large impact on our lives and our marriage.

Recently, I shared that our 10-year-old daughter still sleeps in our bed. While this has become a practical solution to get sleep and avoid the fear of undetected seizures taking place at night, it’s obviously not an ideal sleeping arrangement for a healthy, thriving marriage. This is just one example of how Dravet invades typical marital space.

Some other situations that affect our marriage: a 10-year-old who can’t be left alone or unsupervised, even in our own home; a child for whom it’s extremely difficult to find childcare and, due to seizures, whom you don’t feel comfortable leaving at home with older siblings for any length of time; a child who is unable to do regular daily tasks like getting a cup of juice or a snack, getting dressed, or bathing fully independently.

Imagine how it changes the family dynamic to have a child who, because of seizure triggers, cannot participate in many activities that the family had previously enjoyed together, or to fear leaving your medically fragile child for an extended period of time, and therefore rarely experiencing out-of-town trips or vacations as a married couple.

There are ongoing decisions to make and things to manage, like medications, doctor appointments, therapy services, individualized education program accommodations, and day-to-day calculations about the best ways to both protect Avery and still allow her to live the best life possible.

All of these things take up space, time, and energy in a marriage, on top of all the normal stresses that every typical marriage endures.

We are so incredibly grateful for our Avery, and with time we have learned to implement coping skills and find our “new normal” while living with Dravet syndrome. Still, I think it is important to recognize the strain that caring for a child with Dravet syndrome or any other disability can have on a marriage.

The impact of this reality requires ongoing intentionality and commitment in marriage. We certainly haven’t done it perfectly, but we are continuing to learn to love each other even in the hardest of moments.

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Note: Dravet Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Dravet Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Dravet syndrome.