Parenting Through the Unknown: How My Son’s Epilepsy Shaped My Mental Health
I am naturally an optimistic, empathetic person. Most struggles in my life, I have been able to handle head-on and not need to rely on others as support to pull me through those tough moments. These past 18 months have forced me to face and address my mental health in a way I never had before. I was programmed that I should deal with “the hard stuff” independently and that I am strong enough to get through tough times without needing others or bringing down others with my sadness/issues. I had every intention of not mentioning any of this journey with Keegan to a single person, but upon the diagnosis of his epilepsy, my husband encouraged me to share this with my close friends, which I did, and I am so thankful for.
“Mental health doesn’t take a backseat when your child is sick—sometimes, it becomes the loudest voice in the room.”
The summer following Keegan’s diagnosis, I call my “grieving period”. I felt as though I was in a state of despair, helplessness and most likely some type of depression. Every day was a challenge, but I would force myself to push forward and carry on as normal, since three humans relied on me to be there and be present. I had to step back from work and completely fell out of my typically healthy lifestyle. We had no future prognosis for Keegan outside of “we don’t know,” and as a planner, this wrecked me. Growing up, I was always taught to hope for the best but prepare for the worst. At this stage, Keegan’s seizures were at their peak, leading to some of the hardest days of my life. I had so many awful thoughts in my head, and some days saw my life as over; that these worst days were our new normal. I was grieving what I had hoped as a life for myself, working more, my son and my family would have looked like. Keegan was especially aggressive at this point as well; he was in the midst of a steroid treatment. A lot of his anger and frustration he was taking out on me physically, and it completely drained me emotionally.
I felt like the worst mom and was so lost at what to do to get out of this never-ending sinkhole of a negative mindset. When feeling this way, you start to avoid social situations and remove yourself from places where you need to put on a fake smile or make useless small talk. This further just places you in a state of isolation where your negative thoughts just spiral out of control at times. I felt like I was just in a constant state of Groundhog Day, where I forced myself out of bed, entertained the kids for the day, put them to bed, spent some time with my husband and then went to bed myself. I pushed aside most of what I was feeling (compartmentalizing) and just powered through each day to make it through to the next.
I knew that pushing aside my emotions was not best for my mental health, but I was in pure survival mode, and our kids needed me to be their mom more than I needed to have time to process my emotions. I felt that I did not have the option or luxury of time to break down and process everything I was feeling.
At the end of the summer, I realized I thought I needed help. Rather than internalizing everything I was feeling, I decided what I truly needed was to talk through my emotions with someone. I couldn’t just sit with my feelings and fears anymore. I found an INCREDIBLE therapist whom I would speak to weekly, and she truly helped shift my perspective. I still see her regularly, and she has helped me navigate and normalize all the feelings and thoughts I was experiencing.
In addition to Therapy, I started to wake up at 5 am to exercise and have “me time” every morning until I woke the kids up at 7am. As much as I hated waking up that early, I at least knew that even on the worst of days, I had done something that was just for me. The combination of these two changes allowed me to slowly crawl out of what my husband called the “pit of despair”. Because that is exactly how I had felt.
Another extremely hard and unanticipated part of the journey was how to navigate a life with 2 healthy young kids and 1 child struggling with their health. It was a constant battle because so much of my focus and attention was and still is on Keegan.
I would beat myself up constantly for not being present enough for our other two kids. Also, watching them struggle and seeing how the stress manifested in them broke my heart all over again. Leading up to Keegan’s brain surgery, our son (6 ½) started bed wetting out of nowhere, and that continued almost nightly until a month after Keegan’s surgery. Our daughter (5) developed INTENSE separation anxiety about me leaving. Once again, this was resolved about a month after Keegan’s surgery. We kept lines of communication about Keegan’s help very open and honest with the kids, which was important to my husband and me. I can’t say if this helped or not, but I didn’t want to hide away from the reality of what was happening. I never expected how the stress of their brother’s surgery would present itself in the way it did. It was so hard for everyone to navigate as we are all stressed, trying to address and validate the bigger kids’ needs, but also balancing Keegan and our mental health. It was a lot and a very tense time for the whole family. We just tried to focus on creating happy moments and memories where we could. We incorporated a lot more one-on-one or special outings with each other. Truly, the only thing that, in my opinion, resolved things was time.
A huge challenge I faced personally with Keegan’s diagnosis is that I am a control freak in all matters of myself, my family and my kids. I have had to learn to let go of that on our sons’ medical journey; some days this is easier to do than others. I have found comfort in throwing myself at what I can control when it comes to Keegan’s health; his therapies, getting him support at school, and communicating with his healthcare team. Focusing on the small things I do have control over helps me to release the big items I have no control over.
I use this “small things” strategy with my mental health as well. By capturing the little things like a new word or moments where I feel immense joy, I hold onto those moments for as long as possible. It allows me to stack up all the small wins to try and overshadow the “hard stuff” I cannot control. It sounds weird, but I do have to say I am thankful for Keegan’s age during the last 18 months.
He will hopefully have zero memories about the intensity and stress of the last year. My husband and I carry the trauma of that for him.
The biggest thing I have learned, and the silver lining for my mental health, I do take from our journey so far, is that I can rely on other people. Expressing my feelings is not burdensome to those who care about me. I have an incredible community and group of friends that truly rallied around us in our darkest times. I no longer feel that need to handle the hard stuff internally. Some days are absolutely still hard, but most days I feel like my typical optimistic self.
To be completely honest with myself, I am very confident that I have not consciously allowed myself to truly process everything that has happened over the last 18 months. I am sure with my therapist, we will slowly make our way through that Pandora’s box of emotions. But I can say I am starting to feel like myself again. I am mentally the strongest I have been since before Keegan’s diagnosis.