“There has to be a better way.” I’m sure that’s what some people were thinking when they saw our Facebook Live post earlier this week outlining how we’re going to start rewarding hospitals/homes who send us pictures of their staff, families and/or patients posing with cards for 3 quarters with a portable entertainment system.
I figure if I’m able to make a Facebook Livepost as myself in first person then I can do a follow up blog post in first person as well – #Secretsout. First off, I agree that there was probably a better way to announce how and/or why we’re going to dedicate a large set of funds strictly to reward and entertain kids who are confined to their beds. Secondly, I understand I probably could have gotten an official vote from the board on their opinion on whether and/or how we should use the potential incoming funds. Should we save those for our When We Grow Up dreams or simply focus on the more immediate needs?
Although things have been stable, I figured that since I was going through my least favorite set of testing, EEGs, I could make an executive decision to help kids who are going through similar situations. This EEG test will always hold a negative, albeit special, place in my heart since, as touched on the Can’t Complain blog post, it was during this set of testing that I received some of the scariest news before my surgery. Then it was during another EEG test that I had my one and only grand mal seizure, which derailed my safety net that I set up for myself.
With November being epilepsy awareness month, I’ve been sending special shipments to kids whose parents used hashtags related to epilepsy, ranging from something I agree with (e.g. #seizuressuck) to something more broad (e.g. #epilepsy). As always in those letters, I tell the children they were/are a VIP (Very Important Patient/Person), so they deserve extra cards. Then I highlight how they’ll be in my prayers since us overcomers have to stick together. Here are some examples from those recent deliveries this month: