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It came from you
Her perfectly formed lips, beautiful almond shaped eyes, heart-melting smile, sweet button nose, infectious laugh, and her incredible charisma, it all came from you. But what you heard on that day when they called our house was that her genetic mutation came (was inherited) from you. What we learned with that one phone call is that Pepper’s genetic mutation was inherited from daddy. What it means for her epilepsy, is that this genetic mutation is not likely causative of her seizures. Why? Because daddy has never had seizures, and does not...
read moreMama
“Mmmmm Mamma” We’ve been hearing a lot of this word lately in our house. We’re not sure if Pepper is directing the word “Mama” to me, or if she is just repeating it because she is trying to make sounds. Either way, I will take it! It makes my heart melt, each and every time. Being “Mama” is the toughest job I have ever had. It’s a no-vacation, 24 hour, round the clock exercise in listening, observing, anticipating, learning, responding, worrying, acting, loving and sometimes heart-breaking. And that’s just a good day. All of this, and I...
read moreNursing Weak
There has been a lot of talk this week about celebrating nurses for “Nurses Week”, and there are so many reasons to do so. Nurses are our front line health care workers. They do everything! And by everything, I truly mean everything. They wipe our tears, our blood, and our bottoms; they fill our veins, our bellies, and our spirit; they push us to do our best, they push us in stretchers and wheelchairs; they hold the curtain closed, hold our clothes, and hold our hands; they help us understand what is happening to us, and our loved ones, they...
read morePurple For Pepper
264 days since her first seizure… ~345 seizures in total… immeasurable gratitude for the constant love and support from our family and friends. On Tuesday March 26, 2013 our family wore purple for Pepper. Many of you showed your support by wearing purple too. We just wanted to thank you for providing us with the support that strengthens us each day.
read moreGenetically Speaking
When I was 11 years old, I witnessed my first seizure. My father fell to the ground like a sack of potatoes steps outside of my bedroom door. I was terrified. I thought he had died. I will never forget that day. My father did not have epilepsy. Instead, he had seizures as a result of a stroke he had suffered at the age of 46. It was a while before they were able to control my father’s seizures with medicine and despite being seizure free for many years following his stroke, in the end, it was colon cancer that took him from us a mere 13...
read moreLiving in Limbo
Limbo: Of the Latin root “limbus”, described as the “edge of hell”. 1: Also defined as: a region or condition of oblivion or neglect; a state or place of confinement; an intermediate place or state between two extremes; a state of uncertainty. 2: A West Indian dance in which the dancers keep bending over backward and passing under a pole that is lowered slightly each time. * definitions taken from Collins English Dictionary and Merriam Webster Dictionary Everyday we wait for answers is another day in limbo. Last week my husband and I...
read moreWaiting Room
So this waiting is really killing me. You know when you go the grocery store, or the local “made in China” discount-department-store-that-shall-remain-nameless and you see the longest line-ups to check out? You know that feeling of dread of having to wait, standing on your feet, holding more items than you had originally intended to buy, knowing you spent more than two hundred dollars on nothing? That is a daily feeling for me. Only now this feeling is more like being in the waiting room at the dentist office and knowing your turn is next....
read moreThere’s something about Pepper
There is something very magical about our little enchantress. Usually, I am really good at putting things into words, but for some reason, words fail me when I try to describe the polarizing effect Pepper has on people. She’s magnetic. She’s electric. She’s the pillow you want to hold tight, the puppy you want to hug, the pretty girl you want to see smile, the flower you want to take home, the sunshine that brightens your day and the stars that twinkle against the blackest night. She’s all of this and much more. She’s a beautiful gift from...
read moreThe Shepherds, they watched..
Merry Christmas to everyone reading this. Know that we are all wishing you the blessings of family, warmth, comfort and joy. As many families prepare to gather around at the dining room table and partake in the traditional Christmas meal, our little family holds each other close and thanks God for another cluster free day. That’s not to say we spent Christmas entirely seizure free however. To celebrate the arrival of Santa Claus, Pepper had an early morning seizure. She later decided to protest her lack of a decent nap as a result of her...
read moreOn The Edge
A sequence is an ordered list of numbers. Once you can define the sequence you can predict the next number. Coincidentally, it was the last unit I taught my class. I’ve been hardwired to recognize patterns but there’s one sequence that still makes no sense to me… As of today, our little girl has reached an approximate seizure count of 202. The last one was in the car this morning when I was driving her to daycare. I constantly check on her while I drive in hopes to catch any signs of an oncoming seizure but just when I let my guard...
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