It's been awhile. Like, a LONG while. I have been trying to keep up with so many adventures that finding the time to keep up with blogging has been a challenge. Let me try to bring you up to speed.
Since November 2017:
Team Parker raised $7,011 to advance KIF1A research during Party for Parker! Special thanks to the Eagles Aerie of Springfield, Missouri for your significant support and allowing us to use your facilities! Brendan and Chelsey Roberson put on a beautiful performance and we would not have had such an amazing event without Susan Middleton, Jana Starnes, Tona Rowett, and many generous volunteers and silent auction donors. Your support means the world to us and KIF1A families from around the world.
Thanksgiving and Christmas made time fly by at warp speed, as usual.
I had the honor of rallying the KIF1A community over two months during our participation in The RARE Carousel of Possible Dreams, a first of it's kind crowdfunding campaign supported by The Festival of Children Foundation and Global Genes. By February 28, 2018 (World Rare Disease Day), KIF1A families and friends raised over $30,000 for KIF1A research.
We moved to a more Parker-friendly house with fewer stairs for us to navigate. While we thought we moved into a long-term, possibly "forever" home in 2014, shortly before Parker's first birthday, we soon realized that Parker's mobility challenges became more difficult with our split-level floor plan. Parker loves his new house and for bonus points, it's located much closer to his school.
Parker turned five. You read that right, FIVE. I'm still in denial.
Parker graduated from preschool, which included the BEST teachers and classmates we could have ever asked for. (In denial about this one as well.)
Parker started Kindergarten. It's only been a little over a week, but he seems to love his new "big boy school" and his whole new team of teachers and therapists.
For some personal updates: some of you probably know that I started this blog after I quit my job at a wonderful international nonprofit. I just could not keep up with everything going on with Parker and our growing KIF1A community, on top of the more than full-time workload. I've also assumed the role as "President" of KIF1A.ORG, although this organization is truly parent-led with leadership from multiple KIF1A families. Not only are we a parent-led organization, we are all volunteers. 100% of donations raised goes to KIF1A research.
Since money doesn't grow on trees and I haven't won the lottery yet, a year ago I took an 8-5 office job at an amazing firm in Springfield. I actually get to take lunch breaks and never work after hours or on the weekends. While my work-life balance has improved drastically, there still aren't enough hours in the day to keep up. Thankfully, the firm has agreed to let me work reduced hours at four days a week instead of five, starting in September. This will give me the much needed time to take Parker to physical therapy and his various doctor appointments and even work on KIF1A.ORG projects. Maybe I'll even have time to do some laundry. But that's pushing it.
While I can't promise how often I will keep you updated on Parker's adventures, I will post as often as I can. If you want to keep up with our growing nonprofit organization, be sure to follow KIF1A.ORG on Facebook and Twitter!