Heather’s journey
BY JENNY AND HEATHER
This is the story of Heather’s journey with epilepsy. I’m her mom and am writing this with Heather at my side. Two perspectives, 42 years of experience, and goals just like yours … to live life as happily, productively, and as healthily as possible, and when discouragement comes knocking, to not answer the door!
We will start with today’s Heather at age 42 – like having dessert first – just so you won’t let the scary start to her life overwhelm. She is beautiful inside and out – grant a mom this prejudice. She is bright, loves her work at Publix, is learning to play the viola (adding to time spent with piano, violin and accordion), has a mischievous streak, has been called “fashionista” for her way with clothes, loves to hug, and is very thankful to be part of the JoshProvides family. I am too. What a wonderful organization, born out of tragedy yet giving hope, heart, and knowledge to all who come seeking. We would love to have had this great resource when Heather was young, but truly better late than never! Thank you, JoshProvides!
Heather was born on the first day of winter. She was healthy and happy and passed all her milestones. Then came the fateful day at 9 months of age when she had an immediate reaction to the pertussis vaccine. She had 27 grand-mal seizures the first day and many more in the ensuing month we spent at Tampa General. My late husband David and I watched in horror as our dear baby underwent endless tests, endless lab draws, and strings of doctors who were quite openly unsure of the outcome. It was a nightmare of huge proportions as we watched Heather lose her happy nature and sink beneath the lethargy and stupor of a now unthinkable chemical cocktail – phenobarbital, Dilantin, and Tegretol.
The next 11 years were to be a battle of random seizure clusters averaging 30 over a day’s time and ending in 2 days of a comatose state. They always began in the night or with a fever. Drugs were raised, lowered, added, removed. I would describe this time as living in the trenches with a heavy dose of shell shock. Suffice it to say, we met the challenges as best we could.
By her 12th birthday, like a prayer answered, Heather’s seizures succumbed to the chemical changes of puberty, and she was free of the clusters. Instead, she began to have occasional myoclonus, a rapid jerking of one or more limbs without losing consciousness. This first played out when a strong jerk caused her to throw a box of hundreds of beads across her play room. We were mystified as we did not witness the event. Heather could not explain what happened. It took several such episodes before we actually saw what was happening. The myoclonus turned out to be a blessing. It became her warning. With a simple rescue pill, she could stop the myoclonus before it progressed into a grand-mal.
So, this is where we are today. A much better position. Of course, Heather and I still have many concerns about significant med side effects, her future living situation without me, transportation, guardianship, etc. My heart still breaks for the normal childhood joys that she missed – campouts with scouts, sleepovers, being invited to lunch or play at other children’s homes. That will never go away – an unhealed wound. Yet, I rejoice in the miracle of all she can now experience, in the perspective gained, and in the fact that most of what I greatly feared did not come true. What can we say to those early on in their journey? Never underestimate your ability to get through the challenges. JoshProvides opens the door to what matters – friendship, caring hearts, and knowledge. Science advances more rapidly than ever. As I write this, actual disease modification treatments are under way as opposed to a sole focus on meds! Just imagine!
We are so glad to know all of you and look forward to many happy years together. Thank you for your kindness. Near and far, you are always in our thoughts and prayers. We rejoice in your triumphs because we know the price you have paid to get there.
Jenny and Heather
