Moms of Epilepsy
"You learn how long 30 seconds really is when you watch your child have a seizure."
For the Katie's Run 2016 feature story, we will be sharing many stories but with a common theme—stories spoken from a mother's heart about how epilepsy has affected their family, their life, their child. We'll post one story at a time on social media and here on our website beginning in April. Please read these stories, share them, and join us in our fight to uncover the brilliance that will cure epilepsy—forever!
Kelly – Mother of Trystan
It is strange how certain moments in your life stay with you. Sometimes not an exact picture, but maybe an impression, a smell, a feeling ... some moments haunt, others bring joy and a sense of fulfillment, warm feelings. I don't remember all of his seizures very accurately, but the first one will be one of those moments. When I think about it, I remember the confusion, helplessness, and sick feeling in the pit of my stomach. I had no idea the road we were heading down. How much that pivotal moment would forever change his life.
Donna – Mother of Alicia
In January 2014, Alicia experienced her first nocturnal seizure at the age of 22 while vacationing in Jamaica. Imagine as a mom, thousands of miles away, and hearing this information. The emotion and questions that arose were difficult to handle.
While dealing with an illness of my other daughter, I was not able to be in Jamaica with my husband, Alicia and other family members to celebrate my niece's wedding. After the seizure, my husband was trying to protect me from stress and worry by not telling me about the seizure, but I knew something was going on. Alicia was very fortunate that she had family in the health care system who were also in Jamaica so they were providing care, guidance and direction while still in Jamaica. Once I was notified of the seizure, I was able to set up appointments and tests for when Alicia returned home from Jamaica.
Sandra – Mother of Dianna
Part 2 of 2
In the hours immediately following Dianna's brain surgery we, her parents, saw glimpses of communication from her. While Dianna was in the ICU, we hung onto something as simple as Dianna wiggling her toes. This small gesture told us that she was asking for a foot massage. This meant she was communicating! What a flood of relief filled my whole being.
Sandra – Mother of Dianna
Part 1 of 2
When our daughter, Dianna, was seven years old, we were playing a game together, the two of us, when she started to tell me about this "funny" thing that happens in her head. Dianna told me all about it and declared that it doesn't happen to anyone else! After listening for over an hour I was concerned enough that I knew we needed to visit the doctor. I suspected these were seizures.
Upon visiting our family doctor, Dianna was sent for a CT scan, and I was told "not to worry" about these seizures. Well ... that wasn't so easy. During the CT scan the radiologist studied the images, and spent so long on it, that I knew something wasn't right.
Jody – Mother of Tyler
In this Moms of Epilepsy story, Jody paints a beautiful picture of her son, Tyler—who he was, what he loved, and the courage he displayed living with epilepsy. He had a big smile and sparkling licorice eyes ... but Jody's story is a heartbreaking one.
"Unfortunately my Mom's Story is also one of profound sadness ... an ending that is every mom of epilepsy's worst nightmare," she writes. "I am deeply sorry for any added anguish that my son's story brings to others living with epilepsy—my heart goes out to you—but this is the reality of epilepsy. Sometimes epilepsy kills."
Thank you, Jody, for allowing us to share your story.
We would also like to acknowledge Jody as the originator of what is now our motto: "helping to uncover the brilliance that will end epilepsy—forever." We thank her for allowing us to use it along with a small symbol of Tyler's heavenly star.
Jane – Mother of Rowan
I remember my son's first seizure. He was nearly two years old. There had been many concerns regarding his developmental milestones and he'd been making gains. We felt proud of his progress and concerned about next steps.
When his seizure started, I remember my partner immediately starting to time it. How did she know to do this? I called 911. I don't remember the call, what I said. I just remember looking at his small body completely stressed, full tone, shaking, nothing calm, no control.
How was he breathing? How would this stop? How could I tell the 911 operator what was happening? Why won't it stop?
Denise – Mother of Jonathan
Tuesday, November 20, 2012: a day that started as almost any other and then become the day life forever changed in our household.
Back in November 2012 I was a busy wife and mom to three children. I got the kids ready for the day and then ran off to work. I work in a hospital in finance and at that time my office overlooked the parking garage for the ambulance. I would frequently note when the ambulance left and think, "I wonder how this call for the ambulance has just changed someone's day." I was just settling back into work shortly after 1:00 pm when I happened to take note of the ambulance leaving the garage at about the same time as my phone rang. It was the secretary from my son's high school telling me my son Jonathan was having a seizure and I needed to come immediately. I bolted from my desk and ran for the door calling out that Jonathan was having a seizure and I needed to go. Little did I know that the ambulance I had noticed leaving was the same ambulance dispatched to the high school as the school called 911 and then me.
Geri – Mother of Katie
Part 2 of 2
I HATE EPILEPSY! That's the truth. As Katie's mom, I hate even saying the word "epilepsy" and I hated every single one of the many grand mal seizures Katie had. I never got used to them. Each one was terrifying and heartbreaking and the anticipation in between was enough to make me crazy. Watching Katie's life spiral out of control was incredibly difficult.
It was sad to see her go from very social to losing all but one friend, from being confident to being very subdued and unsettled. I didn't recognize this girl who was now altered by the drugs and the anxiety gripping her. I felt guilty because, at times, I was scared to be alone with her. I was very frustrated that I couldn't make it all go away.
Geri – Mother of Katie
Part 1 of 2
It was just before Christmas in 2010. It was a Tuesday. Her oldest brother Dillon was home from university and was at the dentist. Her brother Evan was at home nursing a migraine and her dad Don was busy at home in his office. Katie had a routine medical appointment, and we were on our way back into town afterwards. We were chatting about how hungry she was and I told her we would go straight to Subway.
"What sub are you going to get?"
She didn't reply.
I looked over. What is she doing?
"Katie ... Katie? ... KATIE!!!" I was screaming at her, begging her to stop and talk to me, pleading with God to help.
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