Baby Lock Ambassador Lindsay Conner recently released an applique quilt pattern that’s perfect for beginners or anyone looking for a fun weekend project! The Heart Grid Quilt comes with a personal story, to raise awareness around childhood epilepsy. Read on to learn more, and be sure to scroll to the end of this post for your chance to download this pattern from Lindsay's Etsy site.
Our Epilepsy Story, by Lindsay Conner
A couple months after sending our little guy off to kindergarten, my husband and I knew that something was wrong.
We’d noticed it off and on for the greater part of 2019, but were never quite sure if our eyes were playing tricks on us. Often when we talked to our son he’d start to respond, and then his eyes would stare off into space for a few seconds. We’d call his name with no response. When he came back around, usually 2 to 5 seconds later, he wondered why we were looking at him so funny.
I Googled this phenomenon, and came up with a concerning possibility: a disorder called Childhood Absence Epilepsy (CAE). Kids with “absence seizures” have frequent, short-term blank-outs where they are unaware of what is happening around them. For our son, it often happened when he was concentrating, like playing a board game. We noticed that tiredness was often a trigger. Some days we didn’t notice any. Other days, it would happen a dozen times a day, only for a few seconds at a time.
Eventually, we decided to schedule the test: a sleep-deprived EEG. My then 5-year-old son was required to sleep only 4 hours the night before the test, which took a lot of creative maneuvering. We had a massive “stay up” party in the living room, complete with dance music, movies, various creative stations and dollar store toys!
The next morning, we traveled to our children’s hospital for testing. One by one, colorful wires were glued to his scalp. A nurse wrapped the wires in white gauze, and instructed him to try his best to sleep while she repeated nonsense phrases like, “Seven…. purple…. cow….”
The diagnosis came quickly. Within the week, we had a new prescription and a new identity: parents of a child with epilepsy.
As we’d come to learn, Childhood Absence Epilepsy is a little different than other conditions, in that there’s a chance kids can grow out of it. They can take medication to control the seizures, then get tested a few years down the road and find that they are able to wean off the meds. And thankfully for us, the first medication we tried has controlled the seizures.
Our family’s story and my son’s diagnosis have inspired me to make this quilt and to tell our story. Thank you for reading! If you or someone you know would like to chat about our experiences with absence seizures, you can read my original post about the quilt here and leave a comment to connect. I’d love to be a resource to anyone who is going through these scary unknowns and provide some hope in the form of connection.
About the Quilt
This Heart Grid Quilt has 4 dark purple hearts, symbolizing the 1 in 26 people who will live with epilepsy in their lifetime. Epilepsy affects children and adults of all ages, races, and ethnic groups. It is the fourth most common neurological disease.
It has 21 light purple hearts, which stand for the 1 in 4 children who will live with some type of neurological condition, including autism, seizures, strokes, and more.
You may also know someone who is living with epilepsy. Epilepsy can affect anyone with a brain. Seizures can strike at any time, without warning or reason.
Additionally, one-third of people living with epilepsy have seizures that cannot be controlled with current treatments. The uncertainty of when and where the next seizure may occur has a dramatic impact on the lives of all people living with epilepsy and on their loved ones. You can read more about childhood epilepsy here.
Download the Heart Grid Quilt Pattern from Lindsay's Etsy shop here. We invite you to also considering making a donation to the Childhood Neurology Foundation or the Epilepsy Foundation to help support the work of these great organizations to help support people who are affected by epilepsy.
Note - this pattern was available for free download from March 22 to April 5, 2021.