This was a big post for me to write. Six months ago, no way could I have written this out, it was too painful. I couldn’t talk about it for a long time and as I wrote and then proofread this post it still brings tears to my eyes. Some things will just never go away. I am learning to move forward. I know that a lot of people experience some kind of trauma in their life and I am hoping that by sharing my story, maybe you will feel comfortable to share yours too.
Oscar’s first seizure was November 26, 2018, he was 7 weeks old. We took him to our nearest pediatric hospital and they admitted him. He had 7 seizures in a 24 hour period. To watch your child have a seizure is very painful. You are helpless. There is nothing that you can do other than keep track of how long they last. Otherwise you watch and make sure that your child is safe.
He was started on a medication called phenobarbital and this helped him right away. I know that other children aren’t as lucky to have a seizure medication work right away. We are very fortunate that it worked quickly. They did a lot of tests trying to determine the cause of the seizures and everything came back “normal”. They wanted an EEG (electroencephalogram) to look at the electrical activity in his brain but they didn’t have the equipment at that hospital so we were transferred by ambulance to the Hospital for Sick Children in Toronto.
We were only supposed to be there for the test and then return back to the pediatric hospital. As soon as we arrived at the Hospital for Sick Children the neurologist said “you’re staying”. I only had my diaper bag with me, I was not prepared for this literally or emotionally.
Oscar had an EEG, more bloodwork and a radiologist re-looked at his brain MRI images. When the neurologist came in to see us after all of his tests he said that Oscar’s situation was “very worrisome” I asked “what do you mean by worrisome…. is this fatal?” and he responded that we would know more tomorrow. My husband was with our daughter (2 hours away), my parents were unreachable on a Hawaiian Cruise and my in-laws live in Mexico. I was alone with my son and I was scared.
Fortunately my sister was able to take Olivia and my husband rushed down to the hospital to be with us. My cousin who happened to work at the Hospital For Sick Children stayed with me until he arrived. It was a long night waiting to hear the fate of my son. This is my trauma.
A few days later we were discharged home. We were given a lot of information when we left the hospital. I guess I was tired and overwhelmed, because I didn’t hear or I didn’t choose to listen when the doctors said that seizure medication is very dependent on body weight and that “breakthrough seizures” happen. Life went on (we didn’t have his genetic diagnosis at this point).
February 6, 2019, 4 days before Olivia’s fourth birthday party Oscar had a seizure. This was also when I had my first panic attack. This caught me totally off-guard. We ended up at the ER at our local hospital and were then transferred by ambulance back down to the Hospital for Sick Children in Toronto. This is my other trauma.
When I left the hospital in February, I had changed. I remember my mom saying, “you always look like you are about to cry” and I said “because I am”. Life got real. I knew I needed help.
Over the last year I have made myself a priority and allowed myself the time to re-build. I struggle with anxiety now and I have had panic attacks. I know that I am not alone in my struggles. I feel very fortunate to have been given the opportunity to talk with a social worker and I have a wonderful family doctor and support system. Today, I have my anxiety under control and am feeling more like myself. I know that not everyone has the same access to care or support and I wanted included somethings in the “self help” section of my blog that have worked for me. I am hoping that some of the things that I have included will work for you as well. Take care of yourself, you are worth it!