"Attitude is a little thing that makes a big difference." This is a famous quote by Winston Churchill that has helped to encourage me during some of the darker times of my daughter's bouts with epilepsy.
I would like to share with you the story of my hero - my beautiful daughter Tara.
From the very beginning, I knew that Tara was a tough little girl. At a mere four weeks of age, she had surgery for pyloric stenosis. As a new parent, I was terrified of losing my baby, but she made it through just fine. After breaking her arm at two years of age, I began to think she was just a "typical" child who would have the occasional broken bone or stitches. Little did I know what waited around the corner for us...
Tara was always a happy child who loved to laugh and play. At the age of four on a typical weekend playing with her baby sister, she complained of a bad headache and wanted to take a nap. After awaking from her long nap, she seemed kind of disoriented, but I discounted this to the fact that she just "didn't feel well" and was maybe "a little groggy." Within the hour after the nap, she stopped communicating with me. She had a "distant stare" on her face as if she was looking right through me. Because I had never been around anyone who has experienced a seizure, I thought she was just ignoring me and repetitively asked her to respond. At this point, my "mommy instincts" kicked in. I rushed her to the ER at TC Thompson Children's Hospital where they snatched her up and immediately began to work with her. After getting her stable, I was informed she was in a state of "seizure" and that her body organs had began shutting down. They then told me that if I had been within 10 minutes later of getting her to them that she probably would not have survived. I felt like someone punched me in the stomach. A feeling that I had let her down somehow, and the "what ifs" started rearing their ugly heads then, too. Once the shock wore off, I made the appropriate appointment with her neurologist, Dr. Knowles, and began educating myself on what was happening to my little girl. She was put on medication to control seizures, and after being seizure-free for two years, she was weaned off her medication. She was then seven years old.
From the age of seven to twelve, Tara enjoyed a carefree child's life without side effects of medication, constant doctor visits, etc. She became active in sports and loved being outdoors. Just when we were getting in what I call a "comfort zone," the epilepsy hit again one morning while getting ready for school. She experienced her first tonic-clonic seizure, and her sister and I had no idea what to do. Panic-stricken, we called an ambulance and worked with her. This started our rollercoaster ride with epilepsy. This was in October of 2009. She didn't have another seizure until August of 2010, and to date has had approximately ten seizures. I know this is a small number to many folks, but as a parent, each one is as scary as the next.
Over the past few months of her increased seizure activity, I have watched a happy child walk around in a foggy and confused state due to changing meds. I have watched her go through the "why me" questions and "not being normal" feelings. That is when we decided to contact the Epilepsy Foundation to check into information on a support group.
The Epilepsy Foundation has been a lifeline to us. The support group has helped Tara (and our family) network with others who share this affliction. It has helped us to not feel alone and educate ourselves about anything related to epilepsy. I can't say enough good things about this wonderful group of people. They have given us courage and hope.
We are always praying for a cure and take each day at a time and embrace each challenge head on. We pray that God blesses each and every family out there who has a child, sibling, parent, friend and especially those who have epilepsy. You are all special to us.
Lorna Croft is pictured above with daughters Tara (in yellow) and Tessa (in green).
If you would like to donate to the Epilepsy Foundation of Southeast Tennessee so that we can continue to help families like the Crofts, please click here. Thank you very much.