Nighttime used to be peaceful in our home. I cannot quantify how quickly they have changed in a matter of a few months. Our nighttime is now filled with tiredness, anxiety and uncertainties.
That evening, I was the first to get to Bella.
Her cry was short, but it was loud.
I will never forget the sound of this cry as the muscles in her chest contracted and the air rushed between her vocal cords making that clear and distinct shrieking sound.
As I held her in her bed, her body stiffened and her arms and legs started jerking.
My husband and I rolled her to her side, and I held her close as she slipped away into an epileptic trance.
I cried and repeated her name, begging the seizure to stop.
As the seizure ended, another one came.
Each one came with an intensity that brought a chill to my bones.
As she was convulsing into another seizure, Petie ran out of his bedroom and all I remember was him saying “I’m scared, make it stop.”
Bella was blue, unresponsive, and seizing again.
Since September, Bella has been experiencing both tonic seizures and atypical absence seizures. Each episode has come in clusters, hitting us like a ton of bricks. In each incident there were multiple seizures ranging from 5, 15 to 21 at a time, and for each cluster we ended up in an ambulance heading to the hospital.
The Just-Right Meds
Despite a quick diagnosis of Epilepsy, so much is still a mystery for us and we know that we are on a long road ahead to gain seizure control. We are learning that there are a variety of treatments for epilepsy. According to Epilepsy Ontario, up to 60% of people with epilepsy can control their seizures using medications. We are hoping that we will reach the just-right meds to control this beast.
Bella originally started on a medication called Clobazam, but after the first cluster of seizures we slowly switched to Keppra. We are patiently learning that the goal of drug treatment is to obtain the best possible seizure control with the fewest side effects, and we are still in the early stages of finding the right balance of the medication and dosage for her. To keep track of Bella’s daily dosages, I found going back to the old school paper recording useful for Peter and I. As we alternate who gives the morning and evening meds, having this monthly calendar in the bathroom has helped keep us on track.
After each episode of seizures, Bella’s medication dosage has been increased. With this change she has been going through a period of side effects. In our home we call this the ‘witching hours’. From 3pm and onward Bella would show signs of irritability, nervousness, and aggression. Some strategies that have helped us through this adjustment period were long car rides, various fidget toys, and a change in environment.
Bella is 15 and cognitively at a 1-year-old level. When she goes through these feelings, she grabs, hits and pinches. I don’t do well with change, however I owe it to Peter for helping us stay positive and reminding us to be patient. He constantly reminds me that it’s the medication that is doing this to her and to think about how Bella must be feeling right now as she goes through these changes that she can’t even control.
*deep breath in…. and deep breath out.
We got this.
My DIY MedicAlert
With the unpredictability of Bella’s seizures, I am often consumed with worry because I have no control over what will happen. While the diagnosis of epilepsy has placed new demands on our family, we are slowly learning ways to cope with this new reality. Both Peter and I worry if Bella will be safe whenever she is returning back to the clinic and school each time. I’ll be honest here, it takes time to entrust Bella’s health onto someone else as we want to ensure that she is physically safe, and is still provided the opportunities to continue her daily routines.
If you’re like us, Amazon is our best friend. Here is an adjustable rubber MedicAlert bracelet we purchased for Bella to provide emergency responders with the information about Bella’s health.
And, check this out… for a total of $7.99, I created my own MedicAlert QR code for Bella. I created a viewable Google doc that had all of Bella’s medical information:
- Medical Background & Emergency Contacts
- Epilepsy & Seizure First Aid
- Anaphylactic First Aid
… and made it into a QR code! Next, I purchased these plastic cased key chains from Amazon. This key chain attached to Bella’s pouch that holds her seizure rescue meds and Epipen. I made this so that whoever is with her can scan it to proactively learn about what to do if they were in an emergency situation.
This key chain was also put to use at each emergency hospital visit. Whenever a doctor or nurse came to ask us about Bella’s medical history, they were able to access all the necessary information from the key chain. In our latest ambulance trip, the paramedic asked me what Bella was allergic to and all I had to do this time was say, “Scan this”. The paramedic responded to me, “Pardon my language, but you’re a fu%*ing genius.” In my head I replied, “I know” ;)
Turning to Tech
Our evening routine is very consistent now as it revolves around the 12-hour span of when we have to give Bella her evening dose of medication. For the first few hours of the evening, Bella sleeps in her own bed. We have a Wyze camera on her, so from 6:30pm-9:30pm Peter and I take turns like a security guard on night shift with eyes on the iPad to watch her every move. From 9:30pm and onward, we transfer Bella into our room where we co-sleep with her, as this gives us a sense of security to be close to her for all the ‘what-ifs’ that can happen at night.
Peter is great at researching online stuff. After reading a few reviews and speaking with our neurologist, he started looking into smart watches to give us a peace of mind at night. Bella now wears an Apple watch and we purchased the SeizAlarm app that is connected to both of our phones. The SeizAlarm app is a user-friendly detection app and a help-request service. It can detect irregular movements to alert us automatically when repetitive motion or a heart rate outside of set boundaries is detected. In our one-month trial period, Bella experienced a cluster of atypical absence seizures. The app detected the instant spike of her heart rate just before she went into the seizure about 80-90% of the time. The app is not 100% full-proof as there have been false alarms, however it is working for us right now.
The Sibling
Let’s not forget about Petie. Having a disabled sister with complex medical needs does affect him in some way and in some capacity. Epilepsy by nature is unpredictable and I’ve noticed that in our home now, we all watch out for each other more than ever before. It’s like we have an unspoken understanding that everything could change at any given time.
It’s difficult for both Peter and myself to pay attention to Petie sometimes as so much of our energy is focused on Bella and her needs. The first time we ended up at the hospital in the middle of the night, Petie came along with us. When Bella was finally stabilized, we asked if he wanted to go to my parents’ home or stay with us. Despite his own deprivation of sleep, he responded with “Just tell me what is easiest for you. I want to make sure Bella is okay.” Petie has always been the young carer, supporting his sister in every way possible.
Peter and I continue to try our best to continue to talk to Petie to keep him informed on what is happening as we also want to make sure that his concerns are not being ignored, minimized or overshadowed by Bella. We also try our best to make 1:1 time with him so that he knows that he has our full attention. But in all honesty, we are lucky to have a strong support system of family and friends who help us during these unexpected times. My parents help us a lot so that Petie can have consistency in his life when we are in an emergency mode at the hospital. We also have close friends who we know we can call on for simple things like school pick-up/drop-off.
The Balancing Act
I am currently still on secondment as a Health & Physical Education curriculum consultant at Ophea. The work I do at Ophea is my respite, and I love every part of it. I get a balance of working with students, teachers, school boards and other like-minded organizations in this sector. The best part of my job is that I’m able to bring my lived experience as a parent and advocate in the disability community, to ensure that disabled students have the accommodations they need in order to participate and experience the joy of movement across the school day.
In November I was invited to sit on a panel at the National Physical Activity Summit hosted by ParticipACTION in Ottawa. Key multi-sectoral stakeholders from across the country were in attendance to contribute to the development of an Active Canada Action Plan. The Minister of Sport and Physical Activity was part of the panel discussion along with key leaders representing school physical activity. I was so excited to bring my disability lens to the table, as this was my chance to participate in a valuable discussion regarding key issues and opportunities to support physical activity in school communities across Canada.
Enroute to Pearson airport, Peter phoned me to tell me that the school shared that Bella was experiencing seizures. He told me to continue my trip to Ottawa, and to just be ready if it got worse. I actually made it to my gate, however Bella’s SeizAlarm app was going off on my phone. I knew what I had to do as a mom, but I desperately wanted to be on this panel. My speaking notes were all prepared, and this was my chance to bring students like Bella to the forefront. I left the airport to go back home. My tears came rolling down, as this was a reminder that this is my new reality. As much as I wanted to sit on this panel, I knew I had to go back to be with Bella.
My role in advocacy has been critical for helping with my stress, as my work is my outlet to bring awareness for disability justice in education; this is my jam. I texted my colleague and friend who was also sitting on the panel to let her know how sorry I was that I had to bail and go back to Bella. She reached out to me later that evening when we were at the hospital and I’ll never forget her text, “You are right where you are supposed to be.” I needed to hear this.
So what, now what?
During these past few months, the beast of epilepsy has overwhelmingly tested my strength, patience and trust in myself. Epilepsy continues to be a tough battle we are in right now, and despite these terrifying moments, it has brought Peter and I and our family closer together. We are trying to take each day as a new beginning for Bella, and we remind ourselves that we will handle this one day at a time.