Our Life with Epilepsy

My Child’s Illness is Ruining My Marriage


This is a rather “odd” post for me. You see, at the time Emily was diagnosed with Epilepsy, her father and I were only recently divorced (about a month). That said, I know that an illness in a family, regardless of which family member it is, is difficult on a marriage; or any relationship for that matter.

I have listened to and spoken with many wives, husbands, partners, siblings, aunts, uncles…you name it…about the difficulty they endured when coping with family illness. Ironically, despite the relationship, there was one resounding similarity…the illness being suffered by the patient was taking its toll on the people all around who were trying to help.

While I don’t have all the answers, I have been able to compile what I consider the four most important tips I share with couples who feel that their child’s illness is ruining their marriage.

Tip #1 – Take a Time Out
As parents, our lives are often stretched thin trying to fit in the everyday demands of holding down a job, taxiing children to an overloaded schedule of activities, staying current with friends and family, etc… Now, throw in a sick child and all the new responsibilities of doctors appointments, medicine, new diets and routines and you literally may feel like you’re about to lose your mind!

As a couple, sit down and spell out your need for a regular “time out”. Whether that means that dad gets to spend 2 hours every Saturday tinkering in the garage without interruption, or mom gets to go to her book club meeting every second Tuesday, make sure you write it down, schedule it in, communicate it to the kids (so they can be part of helping it happen) and support each other in making it happen!!!

Tip #2 – Divide and Conquer
When you go to work each day, hopefully you have a job description and you know specifically what is expected of you. This type of organization and allocation of tasks is what helps organizations earns profit and keep their doors open, achieving what it is they are in business to do.

Same goes for organizing your family. While I suggest this a a good habit of practice for any family, I think this applies even more to families who are under the pressure of helping a child who is chronically ill. Sit down and make a list of all the things that need to be done in a day, a week and a month in your family. Beside each item allocate it to a member of the family. Be mindful of work schedules, chore preference and unique abilities. Make sure to get agreement about who should be doing what.

Next, put that list somewhere that supports you and your partner at being mindful of what is required and when. If you notice that something didn’t get done…well, that leads me to point #3

Tip #3 – Show Compassion and Appreciation
You know how this works…it’s often those who are closest to us that bear the brunt of our bad day, bad mood and feelings of despair, depression and sadness.

Make a point of showing your partner some love and compassion every day. Schedule it in!!!! going back to the example of work…you wouldn’t consider canceling a daily meeting with your boss to review delinquent accounts; after all, if you don’t collect those funds how would you expect to get paid next Friday. So, make a meeting (daily if possible), to spend 5 minutes letting your spouse know what you are grateful for. This is like making daily deposits to your wellness account so that when you really have a rainy day, you can reach in and make a withdrawal. Couples who don’t take the time to show compassion and gratitude on a regular (daily) basis, run the risk of developing anger and resentment and start the process of building walls of non-communication between them. Not only is this counter-productive in your marriage, it will spell disaster if you hit a rough spot on the road to recovery with your child. A healthily marriage is essential to your child’s emotional wellness at a time they have physically un-wellness.

Tip #4 – Don’t be Afraid to Ask for Help
There are so many ways you can ask for help. From hiring a maid service to come and do those pesky household chores you can’t seem to get around to, to getting your next door neighbor to pop over for 30 minutes in the evening while you and your partner go for a stroll around the block, being strong enough to ask for help is a saving grace.

I know, that before Emily was sick I was often unable to accept or ask for help. Now, I jump at the chance to let others be part of the solution. I know I can’t do this alone. And I also know that Emily benefits from seeing us ask and get help and let others be part of the solution.

Like I said at the start, illness can be a total drag on your relationships. But it can also act as a catalyst to building a stronger relationship with ties that bind you and your family stronger; that was the case with us. Emily’s illness brought us closer and offered us a chance to reconcile our family, a chance we are gambling on and exploiting!!!

You and you alone have the choice to let your child’s illness ruin your marriage or make it even better than it ever was before…there really is a silver lining of you want there to be!!!

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The Other Child in the Room

If your family is at all like ours, you were completely unprepared to discover that your child has a chronic illness. It’s certainly not something most families plan for. There are a lot of things we do plan for, but I’m certain this is not one of them.

While most of my material up to his point has focused on Emily, epilepsy or the ketogenic diet, I haven’t spoken much about our “other child in the room”. This is a phrase I have heard a lot and I felt it was time to share some of the ideas our family implemented to help our other child in the room.

Children are Resilient
If we’ve learned but one thing in our journey, it’s that both our children are strong and resilient. Riley, who is two and a half years older than Emily has shown a strong sense of love, admiration, patience and understanding towards Emily and her needs. I feel this is because, right from the start we treated Emily’s epilepsy as a family affair.. Riley joined us at doctor appointments and hospital visits where the medical staff took the time to make sure things were explained to him using age appropriate language.

We didn’t feel that keeping Riley in the dark about what was happening with Emily was the right approach despite some people thinking it might be too much for him and that he should be left to be a kid. Like us, Riley had some serious concerns and worries of his own; things his dad and I could never fathom since we are no longer looking at the world through the eyes of a then 8 year old. Having Riley join us helped in a number of ways:
• he realized quickly that he wasn’t going to “catch” epilepsy from Emily
• he also realized that getting to miss school to sit at the hospital for the day is really not all that fun
• he learned appropriate language he could use when speaking with other children about Emily’s epilepsy
• he saw with his own eyes how brave his little sister is since she can get poked with a needle and not even cry, a fact he remains very proud of
• most importantly, he got to see first hand that Emily was being well taken care of and would be “ok”!!

We often get so caught up worrying about the “sick” kid that we forget that our other children are affected by a family illness also. It’s important that we take the time to remind our other children how much they are loved and plan for some special one-on-one time that makes them feel special. While they don’t want to be the one who is sick, it’s natural for them to feel a little left out or unimportant; after all, all this fuss and attention is being made of their sibling and it can feel like they are being ignored.

It’s also important that they get the chance to talk about how they are feeling. Our neurologist recommended that Emily see a psychologist. We decided to bring Riley along as well. This turned out to be a great opportunity for him to speak about some concerns he was having and find his voice to tell me “mom, when we go back to school, can you tell Emily’s friends to get a teacher at recess if she has a seizure, I just wanna go outside at recess and have some fun.” What Riley had failed to tell us, was that for the last few months of Emily’s grade one year, her friends would constantly seek him out to “help” Emily if they saw her have a seizure on the playground. Being the loving and responsible brother he was, he was always at her side to be sure she was ok, but it was really stressing him out!

It’s important that while you’re busy paying close attention to the daily behaviors and changes you are asked to track for your sick child, that you also be aware of small changes that might be going on for the other child(ren). Speak to your child’s teachers and care takers and ask them to be alert for any small and subtle changes in behavior, appetite or social interactions. Often, there are many small signs that go unnoticed before something big is staring you in the eye and you’ve lost a chance to intervene at an early stage. Working as a team and knowing from the start that the illness of one child will affect the entire family unit are keys to success.

While there are many ways to involve the other child in the room, some simple tips would include:
• talk as a family about what’s happening for your “sick” child
• make some time for the “other” child to feel special and the center of attention from time to time
• don’t allow the “sick” child to blame bad behavior on their sickness
• make sure that teachers, sports coaches, extended family, child care providers and anyone who spends time with your children know what’s going on and are directed to speak with you about any subtle changes they may witness
• talk to your medical team about the right language to use or possibly the opportunity for a meeting with the whole family to explain some specifics about your child’s illness in age appropriate language.

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Some upcoming topics will include
• My Child’s Illness is Ruining My Marriage
• How Do I Discipline a Sick Monster??

If you’re a parent or a family with some great ideas or advice for the “other child in the room” please leave me a comment!


In The Begining

No parent or family can ever be prepared for the news that their child has been diagnosed with a chronic illness.  We can read all the parenting books we like, we can go to as many mommy groups as we can squeeze into the precious time we have, we can investigate everything that will impact our children from the pre-school we chose, to the food they eat, but we can never prepare for a doctor telling us that our child is “broken”.

I remember back to September 2011 when we first became aware that Emily, or precious, sweet little 6-year-old daughter had this “thing” called Epilepsy.  We arrived early at the BC Children’s Hospital, to meet with the doctor.  We had done our research and thought we had the answers.  The first thing the doctor asked was “what do you know about Emily’s seizures”…to which I so naively answered “well I know it’s not epilepsy.”  There was a silence in the room…the doctor looked up at me and said “actually that is not correct, Emily’s seizures are epileptic”.

I don’t remember much of what she said after that.  I was in shock.  How is it possible, that me, a university educated, smart person, who had combed Google searching for answers, actually came to the conclusion that Emily’s seizures were not Epilepsy?  It didn’t make sense.  I can remember the conversation moving from “what causes this?”…”we have no idea, it is idiopathic in nature” to “this is strange that your pediatrician would prescribe her this drug therapy only once a day, we ordinarily prescribe this three times per day”.  Well, that certainly was reassuring to know, since when we filled the prescription, the first thing the Pharmacist said was “Huh, that’s strange, I wonder why your doctor is prescribing THIS drug”.  It also explained why our daughter had suddenly become a walking zombie!!

And so began our journey in navigating the mystery of our daughters new diagnosis.  It wasn’t until the following summer, after many bumps in the road, which I will share with you along the way, that we actually discovered that our daughter had, what the government would classify as a “chronic illness”.   No one mentioned to us that along with these seizures that were captivating her small little body, that there were a host of side-effects such as learning delays, personality changes etc…

As I stumbled through this period of uncertainty, a period with more questions than answered, the one thing I yearned for was just one person who understood what it was I was going through, what I was feeling.  Someone who could and would guide me to uncovering the answers and energy I needed to get through those days that seemed so discouraging.

I was lucky to start working with a Life Coach shortly after our family’s journey began.  I didn’t start working with my coach with the intention of using his services to help me navigate this new aspect of my life, but ultimately, being the great coach that he is, I did use him and he helped me tonnes.  He helped me step back and get perspective.  He helped me implement systems that kept me organized and sane.  He helped me learn to create the environments that I needed in my life to manage this situation like an expert, as if I had done this before.

Our journey is far from over.  Emily still HAS epilepsy and we are reminded of the fact that she lives with a chronic illness each day when we ensure she takes her medication and spend countless hours preparing her food for the Ketogenic diet.  It hasn’t been easy, and just recently I had to fight through my tears and find the humor in her view-point when she said “mommy, daddy, out of all the tests I have had, I think the MRI is the best!  Do you know I got to watch a Barbie movie!!!”  This, coming from child who has had more blood work done than I can count, countless EEG’s and a spinal tap that landed her in the hospital for five days, missing the last days of grade 1.

Please be sure to visit the site often to take part as we tell our story and share our secrets to our success.  Check out my coaching page and decide if coaching might be a great solution for you and/or your family.