First I want to say thank you to all who participated. We had several who participated from outside the U.S. What a thrill to know that Purple Day really is an international day for epilepsy awareness. We raised another $50.00 for CURE!!!!!!!!!! For my family, Purple Day went well despite 2 of my 3 children being sick, my husband arriving home from a business trip at an unearthly hour in the morning and of course, to really top it off, a few seizures at my brother’s wedding reception.
I am nervous to write this post. Actually, I am T-e-r-r-i-f-i-e-d with a capital T and here’s why. I know I am being irrational, but every time I start to post more on our blog, my daughter has a seizure. I know that writing a blog post has nothing to do with her having a seizure, but I still can’t help myself. There is this desperate part of myself that I have to keep in check that wants to control the seizures when really I can’t. I can give her the medicine and make sure she sleeps well, but that’s about all the control I have. Most of the time I let the rest go, but lurking in the back of my mind is the vivid image of her turning blue. Then checking to see if she was breathing, and not seeing her chest move or feeling any air coming out of her mouth as she lay on the floor of the school’s main office. Talking to the principal while the secretary called for the paramedics. Paramedics rushing in with oxygen and other life-saving equipment that I don’t even want to think about. All this in my mind while I try to remember to let her live like the seven- year-old girl that she is.
A big part of me wants to shelter her and keep her in a box. A magic box that would prevent seizures. Can someone invent that, please? I’d almost sell my soul for that, but then I remember that she is a child with dreams and hopes for the future. Did I ever tell you about her love for swimming? Seizures can be deadly especially when swimming or bathing. One of my co-workers lost her nephew with epilepsy to drowning during a seizure at his high-school graduation party. I try to push all of these thoughts out of my mind and I let her swim anyway. The more rational part of myself realizes to not let her take risks could be more detrimental than her actual seizures.
Although, her body decided to celebrate Purple Day with some seizures, it wasn’t so bad. Just a few absence seizures not a full on tonic-clonic seizure. All of her Tonic-clonic seizures have been preceeded by absence so it made me nervous, very nervous. There are people who have several hundred seizures a day or seizures that go into status on a regular basis, but I still cannot get over how scared and vulnerable the seizures make me feel. It makes my heart race every single time. Even for the short ones. After talking to the nurse at her neurologist’s office we determined that she was having break-through seizures due to a recent growth spurt. In the last several months she has gone through two shoe sizes, a new violin and several pairs of pants. So it would seem she needed an increase in her medication.
I feel like I am being extra brave just posting about Purple Day and we really did have an excellent day.
For the ultimate celebration, I invited Princess Amerah aka Justine Greene, to come to my daughter’s school and read part of her book, Princess Amerah and the Magic Dress, for Purple Day. She graciously agreed. Justine happens to have a brother who has epilepsy. It was so wonderful of her to come and share not only her beautiful book and her wonderful singing voice, but she told my daughter’s class about her brother’s experience with epilepsy. In fact he was the model for a character in her book, Walter the Watermelon Man.
Her book is amazing. Princess Amerah and the Magic Dress is currently sold out, but if you visit her website you can get on the waiting list for when the revised version comes out. I can hardly wait for the book to come out.
Thank you again for all who participated!!!!!!!!!!
Our Giveaway winners are . . . .
Christina at Overcoming Movement Disorder
Please contact me by June 3rd with your address and which book you would like either When you Reach Me or The Day Glo-brothers so I can mail out your book, otherwise I will draw another person.
Wow! That was one amazing purple day. I’d love to meet Princess Amerah someday too. She sounds awesome! Great job overcoming your fears and posting anyway!
What a tender and honest post. She is so fortunate to have you for her mother.