Happy New Year! We hope you all had a wonderful holiday season and wish you health and happiness in the coming year.
On December 15th, Hailey and Livy celebrated their 11th birthday! They celebrated by hosting a 1920's themed party and asked their friends to dress up from that era. The night was like walking into a scene right out of the Great Gatsby.
To say they have changed our world would be an understatement. We were ready to start a family but we were not prepared for the extent of what they would teach us about life. Livy has tested us emotionally and physically but has inspired us and given us great hope. Hailey's joy and love of life and for people is infectious and she reminds us to smile every day. We are so thankful for them and the gifts they give to us.
This past month's Kids Crew initiative was to support the children's program of the Lighthouse of Pinellas. The Lighthouse provides services to children who are blind or visually impaired. Every Christmas, Santa makes a visit and hands out gifts to the children. Our Kids Crew donated all the gifts that were given out this year. Each gift was chosen with the specific child in mind. In addition to the 22 gifts donated, the crew also gave $200 in Target gift cards to help support the Breakfast with Santa event.
During the breakfast, some of our crew members volunteered at the craft tables helping the children to make arts and crafts and to decorate cookies. The Lighthouse is very special to our family as they were there to support Livy shortly after she was born. To learn more about the Lighthouse, please visit: http://www.lighthouseofpinellas.org.
The Crew also had so much fun making no sew fleece blankets! Brittany from Brittany's Blankets for Epilepsy and her mom Sandy visited us and shared their mission of donating blankets. Brittany recently was awarded $50,000 from the Tampa Bay Lightning for her community service work which she donated to the Epilepsy Services Foundation, Inc. Everyone left feeling inspired and with full hearts.
The kids then gathered at All Children's Hospital to donate the 30 fleece blankets, Jewels of Hope bracelets and warm hats for the patients. The Coca-Cola polar bear joined us for some photos and gave Livy a bear of her own. We loved seeing our crew being able to witness the importance of their giving. Thank you to all the kids and family members and friends that took time to make these blankets.
Are you ready to see the Community Action Network (CAN) for the Epilepsy Foundation spread across the country? We are currently working on the new logo and all of the supporting materials and are excited to get the program started! Jon is working on a guide that describes how people can get involved and create their own groups. He has never been so inspired by a project and is incredibly grateful to be working on it every day. He is looking forward to reaching out to those who want to get involved and are committed to making a difference. It will be an amazing opportunity for people across the country to work with the foundation and to be a part of a transformational initiative that will improve the lives of those living with epilepsy and their families.
Our new friend Cyndi, whose daughter Lyndsey lives with epilepsy, wrote this note to herself. Many experience similar emotions after a child is diagnosed with epilepsy. Our lives are changed. We walk around in constant uncertainty, always on edge.
On Christmas, Lyndsey was taken to the hospital because of her seizures. Another reminder that epilepsy can strike at anytime. But Cyndi is determined to do anything she can to help her daughter. We look forward to fighting this battle with her, her courageous daughter and her family.
"To the Mom I used to be before E,
If I had only known what you go through on a daily basis. If I had only known...being able to take your child to a sleepover without fear, or letting them sleep alone, in their own bed. If I had only known...that being afraid of being alone with them, checking on them every minute, awake or while sleeping. ..never did i imagine it could be this way. If I had only known...the dreams of your child being like all of their other friends, not being excluded. If I had only known...a simple shower could seem like their biggest enemy. If I had only known...how you try to calm their fears, to no avail. If I had only known...how their self esteem is chipped away and you do every thing in your power to restore it. If I had only known...how they are afraid to go to school, missing their friends and missing out on life. If I had only known...the side affects of medication, that is supposed to help them feel better, makes them feel worse. If I had only known, that something being dropped on the floor, could send me into a frenzy. If I had only known...how much I miss those carefree days of just the normal worries a mom has. If I had only known...the stigma along with E, is unimaginable. If only had I known...I'm sorry that so many, including myself, were never informed, not enough awareness about E! I know now, and I am fighting for you and everyone that is affected by E... I miss you, but I want you to know that I pray that you will return, sooner than later."
Please click here to visit our Livy's Hope Etsy store and view our collection of items. If you haven't shopped with us before, please take a look. When you make a purchase, you give others hope.