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Loss from Epilepsy: Traditions can be altered

facebook_1197090802(1)Our world revolved around seizures; therefore, many of our family “traditions” were altered.  Epilepsy wasn’t an “if” it was a “when”, “where” and “how” in our lives.  This was magnified on holidays and events through the stages of Clayton’s journey, especially when he was first hospitalized.  As time progressed, though, we learned the magnitude of our absence in our other childrens’ milestones and “traditions”; therefore, we adapted our “traditional” thought patterns on how we could be present and allow them to have childhood memories. I want to share with you a way that we adapted during Clayton’s initial hospital stay.

Girl Scout Cookie season

Our oldest daughter, Ashley, was 11 the year that Clayton got sick.  To an 11 year old Girl Scout cookie selling is a big deal, well maybe to the parents anyway!  I cried, literally, at the prospect of my absence at one more “tradition” in her life.  I could not man a cookie booth or bring cookies to friends and family, as each day the severity of Clayton’s condition was made more evident.  So, we came up with a solution and it worked better than we ever anticipated.  We made a sign which read, “I am selling Girl Scout cookies for my sister.  Please take a box and leave the money in the can.  Thank you – Clayton Myers.”

The can was a coffee can, decorated with bright colors, and we cut a slit in the top.  Cases, not boxes, of cookies were positioned against Clayton’s hospital room door with the sign proudly hanging above the cases.  I not only wanted Ashley to see that we were working to form a solution, but more importantly, that her brother was equally aiding in her endeavor.  As I said, it worked!  Clayton and Ashley’s cookie sale was the talk of the hospital.  I would hear money go into the can in the middle of the night from the staff; parents would wheel their children (and siblings) down to purchase cookies; we laughed at the day the cafeteria employees made a list and came up to make a purchase!

A taste of home

Not only did the sale aide our daughter, but in the end, it gave hope and a little taste of “home” to many families on the ICU floor.  In the end, Ashley received her cookie badge and (from recollection 10 years later) she sold 14 cases of cookies – the most in the troop that year. I learned from this experience that, when possible, we had to leave our memories of “traditional’ approaches to life.  Epilepsy took our carefree attitude of lugging those boxes and sitting in the cold at a cookie table that year, as well as, our son being able to aide his sister in the “traditional” fashion in the future.  Though, we overcame – together.

New traditions

Trust me when I say that this was not without heartache, tears or anger, but we look back happily at the outcome of our solution. For you, it may not be a cookie sale, it may be another family tradition which you are facing, but “traditions” can change.  Be creative, think from the heart and include your other children in the effort. The solution which you choose will be a success and your children will see that with love and adaptation new traditions can be formed.  Most importantly – Epilepsy will not win!

What new traditions have you started?

Follow Shelby McGrath Myers:
Shelby McGrath Myers is the mother to 5 wonderful children – one of whom became an angel due to Epilepsy in Aug 2012. She's founder of Clayton’s Hope Org. Based in USA.

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