On Thursday, March 26, 2015 Kaitlyn will be celebrating a wonderful milestone – 1 year of no seizures! What a great day!! AND It’s International Purple Day! To celebrate & spread awareness, Team KatieCakes will be wearing purple and sharing Kaitlyn’s milestone via social media. Show us your purple on March 26!
#TeamKatieCakes #ICanDoAnything #1in26 #1YearSeizureFree
Kaitlyn (8), was diagnosed with Epilepsy in 2007, when she was just 9 months old. Over the last 7 years Kaitlyn’s experienced 3 different seizure types, 2 different seizure medications, and many encounters with doctors, nurses, and EMS. Even though her epilepsy was somewhat controlled with medication, she continued to have seizures.
5 years ago we formed a group called Team KatieCakes. Team KatieCakes is an awareness team that advocates for epilepsy & children with special needs. The inspiration behind the team is our darling Kaitlyn! The central message of Team KatieCakes is “I can do anything!” We never want Kaitlyn to feel ashamed of being different. Our goal is to spread awareness and for Kaitlyn to feel acceptance.
Team KatieCakes has raised nearly $20,000 in the last 5 years to support camps for children with epilepsy, support groups for families and emergency seizure medication assistance in GA. It pains us deeply to know that some children in GA aren’t able to afford their seizure medication. The money that Team KatieCakes raises for the Epilepsy Foundation of GA will go directly to their programs and services – including medication assistance.
Team KatieCakes makes a difference. Especially for KatieCakes herself…
2014 was the first year we were able to hear Kaitlyn’s perspective on what she’s experiencing when she has a seizure. Her little sister was 4 when she witnessed a seizure for the first time. Because of the support at prior Team KatieCakes events, we can talk about epilepsy in a way that they both understand.
“Do you remember all those people that were at Team KatieCakes event in August? They were all there because they love you and want you to know that you aren’t alone when you have a seizure.”
“Do you know many of those grown-ups or children at the Magnolia Run also have seizures? You’re not alone.”
The most profound result is that our entire family understands the huge support system that is behind Team KatieCakes.
What is it like to be a parent of a child with epilepsy?
We became parents nearly 8 years ago to our beautiful daughter Kaitlyn. Every new parent cliché came true that day. Over the next nine months we began to see that Kaitlyn was not acting like children her age. She was not reaching her developmental milestones and exhibited signs that appeared to seizure-like-activity. Her pediatrician swiftly sought an EEG and our concerns were confirmed just a few hours later. Experimenting with the right medication and doses began that night. For the next 4 months, Kaitlyn would continue to seize countless times throughout the day.
It was in those moments that our journey as a parent of a child with epilepsy began. We slowly began to compartmentalize our parenting. On one hand, we focus Kaitlyn’s health, her medications, doctors, therapies, diagnoses etc. Then, on the other hand, we have to block all of that out. We focus on Kaitlyn…Kaitlyn’s smile, Kaitlyn’s abilities, our marriage, our family, and our friends. If we do not compartmentalize, we end up going down a very dark, unpredictable road. Will Kaitlyn always have seizures? Will Kaitlyn be able to drive on her own? Will we always worry about Kaitlyn’s safety? We can’t predict the future, so we must constantly remember to take life with Kaitlyn one day at a time.
It wasn’t always easy to talk about our precious little girl seizing. Once we became more comfortable and accepting of her diagnosis, we were more open with sharing her experiences. We’ll never forget an interaction during the Magnolia Run/Walk for Epilepsy in 2011. A family with a newly diagnosed son desperately asked us about our experiences. It was the simple act of opening up and talking with another family going through the same journey that we found unexpected comfort. We found comfort knowing we weren’t alone.
As our children get older, we’ve been very open with Kaitlyn’s health. A benefit of being open about Kaitlyn’s epilepsy is acceptance. We don’t want Kaitlyn to feel ashamed of having seizures. This is our driving force for our participation in the Epilepsy Foundation of Georgia’s Magnolia Run/Walk every year. We participate with family, friends, and loved ones from every part of Kaitlyn’s life. During the event, Kaitlyn is surrounded by people who love, support, and accept her for exactly who she is. That is our hope for her entire life – that she can be exactly who she is and know that she is loved and accepted no matter what.
If you are walking a similar path with us, remember –
Talk openly about seizures.
Celebrate what your child CAN do.
Live life one day at time.
Visit our Facebook page http://facebook.com/TeamKatieCakes
About The Epilepsy Foundation of Georgia – http://epilepsyga.org/
The Epilepsy Foundation of Georgia is dedicated to serving more than 150,000 Georgians who have epilepsy/ seizure disorders statewide. The foundation seeks to improve the quality of life for people with epilepsy and their families through community education activities for all age levels and comprehensive set of client service programs, which include support groups, summer camps and medication assistance.