Dads of Epilepsy
Max – Father of Emily
For some reason, I never really paid attention to epilepsy. It always seemed to be someone else's concern as I didn't know anyone who had it, or at least I didn't think I knew anyone. It wasn't until my daughter, Emily Austin-Ward, was diagnosed with epilepsy in July of 2016 when she was 9 years old that I woke up to the world of life with epilepsy.
Emily's first seizure was on Canada Day just before the fireworks were to get started in Minden. It had been a beautiful day and we were looking forward to the fireworks like we had each year before. We were just settling in to our place on the grass in the fairgrounds when I noticed Emily was looking off into the distance with her eyes shifted to the left. I looked to see what she was looking at but didn't notice anything. So I asked, "Emily, what are you looking at?" There was no response. I asked again, thinking that she might have been distracted or didn't hear me. Still no response. At this point my partner, Amanda, also noticed me trying to get Emily's attention. We both approached her and we both realized that something wasn't quite right. Amanda said that we need to take her to the hospital. I scooped up my little girl and walked briskly towards the parking area to our van.
A flood of emotions filled me—emotions like fear for not understanding what was going on with Emily's health nor what to do about it, embarrassment for leaving the fairgrounds early and causing a scene, shock at how could this be happening to my daughter, yet a cool sense of calm that I was doing something and I needed to get it done. By the time we made it to our van, Emily was already coming out of the recovery phase and was able to respond again. She didn't remember anything and felt fine. She didn't want to miss the fireworks! We went to the Minden Emergency and were helped very quickly and gently by the staff there. As this was her first absence seizure, we didn't know when or if a second one would happen. Since she wasn't hurt by the seizure, the doctor felt it was safe for us to go home but before we left recommended that we go to the Pediatric Out Patient (POP) Clinic in Peterborough in the morning just to be sure. We still managed to see the last couple of booms of the fireworks from the van window on our way home!
"I realized that our world had changed."
The next morning seemed like any other. We awoke rather early for a Saturday so that we could make the trip to Peterborough from Minden to be able to get there when the POP Clinic opened. As we were having our breakfast, Emily had another seizure, mid-chewing. I quickly thought to video record the seizure with Amanda's iPod Mini so that I could show the doctor what was happening. This turned out to be very useful. At the beginning of the recovery phase, Emily resumed chewing and when she became aware again, didn't realize anything had or hadn't happened over the last 3-5 minutes. She didn't understand what the fuss was all about but was cooperative. Now I was getting nervous. Would I be able to make it to Peterborough with her alright or did we need an ambulance? We set out and arrived at the POP Clinic without another seizure. Once inside, the kind nurse gave Emily a popsicle while we waited. As we were sitting side by side waiting, I noticed that Emily's popsicle was about to drip. I said, "Emily, your popsicle is going to drip!" No response, another seizure, but she didn't drop her popsicle! I quickly called the nurse so that she could also see what was happening. I had a strange feeling of reassurance knowing that a medical professional was actually seeing the seizure happen so that I would be affirmed for taking the actions I had so far to safeguard Emily.
Emily was moved to a bed with rails as a precaution. Several more seizures happened that day. A CT scan confirmed something on the brain. The pediatrician was fearful that she had an Arteriovenous Malformation that could bleed at any time and advocated that Emily be sent to Sick Kids immediately and have an MRI and possibly emergency surgery; all of this on the Saturday of a holiday weekend!
That afternoon, as we waited for the ambulance from Sick Kids to arrive, I realized that our world had changed. I was afraid I might lose Emily. I called a leader in the church to say that I wasn't going to be preaching the next morning. They did what they could and made the necessary calls to help and assured me to take the time I needed. I felt very much cared for even though my heart and head were upside down. Meanwhile, Amanda was looking after our other two children and worried sick too even with regular updates from me. Emily was given Ativan to stop the series of seizures and then put on Keppra to prevent any further seizures. The medications worked. The ambulance ride to Sick Kids was uneventful but exciting because it was the first time in an ambulance for both of us. More observation; no more seizures. That night, around 11:00 pm Emily was the last person to use the MRI machine. I think the technician stayed late just for us. More overnight observation and I got to sort-of-sleep in a chair at Emily's side. The surgery doctors and the neurology doctors agreed that Emily has epilepsy caused by a focal cortical dysplasia. The dysplasia was formed in the womb and wasn't expected to worsen or get better. The doctors decided that the best approach at this time was to continue with medication since it was working - twice a day, every day.
Then, on July 3rd we were sent home! The nightmare was over. Fortunately, with the excellent care she received in the hospitals of Minden, Peterborough and at Sick Kids in Toronto, she has been seizure free since then while she takes her medication. The only drawback is no swimming or bathing on her own anymore but that has been manageable.
"I never knew that I knew so many people with epilepsy!"
Initially, Emily was very upset about being different or broken somehow. We were both glad that we had the rest of the summer to get used to our new reality of remembering to take the medicine and swimming together. I had a hard time initially. Tears were always not too far from the surface. I was exhausted and not sleeping well. When I did sleep, I had nightmares about losing Emily which only made my exhaustion worse. Fortunately, we had a week of vacation scheduled at Algonquin Park and we all could start to get used to our new world of epilepsy together as a family without the regular distractions and duties. With the support of many friends and family plus my church family and faith, I also started to recover. The nightmares subsided and I was getting some much needed rest. In August, Emily went to a week long camp. Amanda and I were so nervous but Emily was confident that she would be okay. She was fine and loved it.
In February, Emily went for a 100 hour EEG at Sick Kids while Amanda and I took turns camping out with her. In the safety of the hospital, she was taken off her meds in stages all while being observed. No seizures! Next week we will be going back to Sick Kids to find out the results of the scan and see if there is the possibility of surgery as a permanent fix preventing the seizures. Even if surgery is a possibility, at this time we think we will stick with the meds for now as they are working so well.
Since that first seizure, people have come forward to say they know someone with epilepsy or even different individuals have come forward to say that he/she lives with epilepsy. Their stories have been a real assurance that Emily can lead a happy life even with epilepsy. I never knew that I knew so many people with epilepsy! We feel truly blessed to have the support of so many family and friends.
Now that we are a part of the epilepsy world, we want to show our support and walk to support more research to help other people who haven't been as fortunate as Emily has been with controlling seizures, and to one day find a cure. Thanks for Katie's Run and thanks for your support.
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