Support

I don't even know where to begin with this post. We are so blessed to have such amazing family and friends. The journey started as very isolating. Infantile Spasms is a rare, CATASTROPHIC diagnosis. I felt completely alone in a world surrounded by people. I read everything I could about my son's diagnosis. Mostly scary shit. I needed to know every possibility and every outcome. I needed to prepare for everything. We eventually made friends with others who have gone through this diagnosis and started teaching family and friends. We now have so much support and understanding of what it takes to raise Jayen. We recently handed out some Epilepsy Awareness gifts to those that work with Jayen. We printed these fact sheets and wrapped them around a bottle of purple fingernail polish.

I wasn't prepared for the response I received from Jayen's teacher. She talked to Mr. Ingram, the principal, and they are asking the whole school to show their support and wear purple next Wednesday, November 19. She is even planning on bringing in a small treat for Jayen's class and invited me to come eat lunch with them. I've ALWAYS wanted to have the school's support. I've wanted to ask the PTA to support Epilepsy Awareness but was most worried about rejection and the response that they couldn't because then they would have to do all awareness months. I'm OK with that! I think everyone needs awareness. I'm so thankful for Ms. Potter and her initiative. I know how much she loves and supports Jayen. 

The support we are receiving is amazing and leads me to sadness again. A friend of mine, Erin Seretta, recently received a devastating diagnosis for her 7 month old. Her son, Henry, was diagnosed with Leukemia. I fear for them and the isolation they might feel. I don't know exactly what they are feeling, but I remember the feeling when we were given our diagnosis. I remember the feeling of isolation while sitting in the hospital room. I remember crying every time I looked at my baby and saw all the monitors, wires, and machines. I remember wanting nothing more than to pick up my baby and run out of that hospital room and wake up from this nightmare. I pray from them and this journey they are on. I pray for this baby! This is going to be a struggle for all of them. This will forever be burned into their hearts and minds. I am here for you however I can be. I support you!

With permission to share: You can follow their story and show your support at 

Hope for Henry on Facebook.