Lately things have been going amazingly well for Cait. She just passed her 13 month seizure free milestone (with no meds or modified diet – insert happy dance). My husband has taken to saying she’s in remission from her Epilepsy. But while we are flying high over here in the Shaw household, I’m keenly aware that some of our friends who are struggling with Epilepsy are not nearly so fortunate.
In particular, two moms with younger boys who have the disorder (one a young teen and the other an elementary school student) have been posting messages that ooze with despair. Another mom posted of her baby daughter’s death due to Dravet’s Syndrome. Through their pain I see a reflection of what we’ve also experienced living with this disorder.
Epilepsy does not affect just one person in the family. It affects all of us and I think as a mom it often hits hardest. Especially when there is a genetic component to the disease (in our case from my side of the family). Even though you know it’s not your fault, the decisions you have to make while parenting a child with Epilepsy too often come down to choosing the lesser of two evils.
Cait is currently doing so well that it would be easy for us to forget about all the struggles we’ve dealt with over the last 15 years. I’ll be honest, there is a large part of me that wants to forget those struggles and focus on the beautiful, creative young woman I see emerging from the dust Epilepsy left in its wake. But that would be both naïve and unfair to others who are struggling right now. Cait has reminded me over and over again that we have the responsibility of sharing our experiences with others to help them through the hard times.
Something you will never understand unless you parent a child with this disorder is that decisions you have to make are never easy. Medicating your child with anticonvulsant drugs is one of the most difficult and, at the same time, one of the easiest decisions you will ever make. For Cait we resisted medication as long as we could. My husband and I both did a significant amount of research about the side effects of the medications that are used to control Epilepsy and found, without exception, that they are horrendous. They are all drugs that affect your brain function in some degree (after all Epilepsy is a neurological disorder). So we resisted medicating our 6-year old for nine months. Her seizures were sporadic and, we believed, tolerable. In short, we were in denial.
Then December 1st, 2004 arrived and Cait began seizing over and over. After several hours it became clear to me that her brain had slipped into a horrific pattern. She was having a grand mal seizure every 30 minutes. Thankfully she didn’t go into status epilepticus (when you have a seizure that lasts for more than 30 minutes) but by the time she’d had her 10th seizure of that day, she was exhausted. And it was obvious that they were not going to stop on their own. We agreed readily to the medications her neurologist ordered. At the end of that ordeal, she’d had 14 seizures within 12 hours and I remember sitting in her hospital room finally beginning to understand how serious Epilepsy could be.
Still as a parent you never lose hope. And since Cait was so young, we hoped that after several years on medication she would outgrow her disorder, as many children do. And for a time we thought she had, indeed, outgrown her seizures. It wasn’t until her last year of elementary school that she started having seizures again. And this time they were nocturnal. A new horror and fear entered our lives.
Nocturnal seizures can lead to SUDEP (Sudden Unexpected Death in Epilepsy). For Cait these new kinds of seizures were terrifying. Soon sleep anxiety and insomnia took over her life. After three months, she was back on anticonvulsant medications. We were so relieved when the drugs stopped her seizures almost immediately, that it took us longer to notice the side effects.
It was just before the start of Grade 6, the transition to Middle School here, that Cait was newly medicated. It would take us and her teacher six months to understand just how significantly the medication would affect her life. Always a straight A-student, we had chosen to put Cait in the Late French Immersion stream at her school, hoping it would keep her from becoming bored with her studies. If I could go back now, that is one decision I would erase.
Her seizures and new medication affected Cait in two distinct ways (and a lot of other small ones as well).
The first was speech problems. Our early and voracious talker (my brother once asked me how old Cait was when she started speaking and I said I thought she born talking) soon became almost silent at school. Topamax (the drug she was on) is notorious for causing problems recalling words. She would either not be able to articulate a word or she would use the wrong word. You can imagine how difficult this was when she was suddenly taking her classes in a different language (French). She couldn’t remember her English words never mind the new ones.
The second was a lovely spectrum of confusion, slowed thinking, memory problems, trouble concentrating and the inability to stay organized. Cait remembers to this day when her exacerbated teacher borrowed the notes from the top student in her class and photocopied them because she said Cait “was the most disorganized student she had ever seen.” We didn’t realize it was the meds causing the problems at the time. For my conscious child, it was mortifying.
But her seizures stopped while on the medication with a few minor increases needed to halt any break through episodes. So Cait stayed on the medication for four and a half years. Her grades plummeted. Her social life dwindled. But she was seizure free. The drugs were working.
It was Cait herself who asked to go off the medication. Her first year of high school was filled with a multitude of ups and downs. Some were good: she started dating for the first time and the boy didn’t run for the hills when she told him about her Epilepsy; her school principal had personal experience with Epilepsy as a teen and talked to her about it. But most of those experiences were not good. Her memory problems became worse and she started to have horrific migraines. Her weight plummeted to the point where her neurologist was worried she was becoming anorexic. She seemed to catch every virus that even entered the school. She was reluctant to talk to any of her peers about her Epilepsy for fear of being judged. Her grades dropped and for the first time in her life she failed a course: Math 9. Coming from a family of academics (3 PhDs and 2 lawyers) and being an academically motivated student, the F on her transcript was the final straw for Cait. She was so humiliated by it that she demanded to go off her meds.
That was the start of what she describes as the worse year of her life. While still in the hospital she started advocating online for Epilepsy and when she came home she kept going with her advocacy work. A lot of people know Cait for that because that’s how they met her or how she became defined in our small community. When she won a national Me to We Award for her advocacy work, I don’t think many people knew that she had just gone through a horrific 12 months in her personal life.
Always a determined child, Cait was set on getting off the meds that were “ruining” her life. But going off anticonvulsant medication is never an easy task. Over the next thirteen months, Cait would have more than 100 seizures, try three different meds (one of which affected her moods so much that it made her suicidal) and ultimately go on an extreme diet (the ketogenic diet) that finally stopped her seizures completely but caused stomach pain so intense it landed her back in the hospital with seizures. When Cait wasn’t too sick to get off the sofa and go to school, she was doing her advocacy work. Her social life was non-existent but that was the least of our worries.
Looking back now, I can hardly believe that we let her go through all that. It would have been far easier to keep her on her medication. But Cait has a different perspective. She sees her middle school and early high school years through a fuzzy haze. Her memory loss from that time is truly heartbreaking and something she is just now starting to accept. She says there are huge gaps in her memories. And while the side effects of the Topamax have almost abated there are times when she still struggles to find the right word and her organizational skills are almost non-existent. Sometimes I worry what damage was done by the seizures and meds but most of the time I am just so grateful for the life Cait has today.
She is now a senior in high school. Her grades are back in the A-range where she wanted them. While she is still behind in Math (working online to finish her Grade 11 course) and has given up on her dream of becoming a scientist, she has found other pathways that have opened up a world of possibilities for her.
She is a gifted wordsmith. A better writer than I am by far. Her creativity in written, spoken and visual arts stuns me. It is as if all the pain and loss she has experienced come out in her art and her love for others. She sees those in pain more readily than many girls her age do and she is passionate about social justice.
Have we forgotten about her Epilepsy? No. While it does appear to be in remission right now, it will always be a part of who she is. Cait is learning to make choices that don’t jeopardize the life she has now. That means she has to make smart choices even when it hurts to do so.
Last week her grad class had their traditional bush party, “Sunrise.” Cait knew that she wouldn’t be able to go to it. It was in a remote location with no cell service and she had no one she felt she could go with whom she could ask to be responsible for her. One of her friends once described staying with Cait while she was having a bad day seizure-wise as “babysitting her.” She has never forgotten that and she despises being thought of as a burden to anyone. Since she doesn’t have her full N driver’s license yet, she couldn’t leave if she needed to. And she didn’t want to risk ruining her friends’ party. She said to me, “Can you imagine how horrible it would be for them if I suddenly had a seizure out there?” So we made fun alternate plans for that night and I thought she was okay with it. My heart broke a little when I saw her Twitter post from that night. She had done the right thing but being a responsible teenager is an oxymoron at times.
Watching her make smart decisions is bittersweet. I know that Epilepsy has stolen a bit of her youth from her. Some of my friends have described Cait as an “old soul.” She can’t afford to be a carefree and crazy teen. She’s always thinking of consequences: “If I have a seizure, I’ll lose my driver’s license.” But at the same time I think she has more fun in the simple things that too many of us take for granted. She isn’t scared to be silly and goofy at times. She is one of the most authentically human teenagers I know!
As we move forward, I can say Epilepsy has taught us a lot. But as she passes each seizure-free milestone, Cait also feels a bit of sadness – for those who may never hit those milestones and for herself if her seizures return. She knows that this might not be forever. She’s heard too many stories about Epilepsy returning to take any of this for granted. For now she is living in the moment, which we all need to do more of. She is determined to make her last year of high school her best year. And when I think of next year when she will leave home for university, I push the apprehension and worry aside and instead force myself to focus on the excitement for her.
To all my friends who are struggling with this horrible disorder, I can’t say it will get better because we all know that sometimes it just does not. But I will say this. If we stop and try to live in this moment, with our children, whether that moment includes seizures or not, then we can embrace the gift that is parenting. When your heart aches for your child, try to focus on the positive. For me that was easy because I had Cait guiding me. Life is just life. Life is not Epilepsy. In her own words, “I have epilepsy but I’m not an epileptic, I refuse to be defined by my disorder.”