by Andrew Barbour
We have a few updates to discuss since the last time we posted on here, but first and foremost, Stephanie and I wanted to thank everyone, from the bottom of our hearts, who helped us out with our Paige Patrol fundraiser. I am truly humbled, and honestly shocked, at the number of t-shirt purchases and donations that we received. Your outpouring of support means the world to Stephanie and I. There aren’t any words I can use to express our gratitude to everyone, but please know how much your generosity means to my family.
It’s funny, because to be honest, I was kind of a stick in the mud about the whole thing. I remember very clearly saying to Steph “there’s no way in hell 100 people are going to buy these stupid t-shirts” (the way this thing works is, you have to achieve a minimum number of purchases before you receive your donations). Well, turns out I was 100% wrong, as the goal was exceeded within 24 hours of Steph starting the whole thing up. I am still awe-stricken by the amount of support we’ve received throughout our journey, and specifically with regards to this fundraiser.
As I’m sure you can imagine, having a special needs child is not cheap. I have a good job, pretty good health insurance and all the support you could ask for from family and friends, but there are certain things that wouldn’t have been possible without the support from you folks. Steph has done a lot of research on “alternative” therapies and special needs programs, pre-schools, camps, etc., and they are all incredibly expensive. Steph found one school in particular that’s very close to our house, and actually ended up meeting with some people who had sent their special needs children there. We heard nothing but rave reviews, and stories about children that went through this school and ended up able to do things their doctors never thought possible. I’m not going to give you a specific dollar figure, but let’s just say that it wouldn’t have been possible to send her to this school without the proceeds from the Paige Patrol fundraiser.
Because of the generous donations from you Paige Patrol folks, we were able to enroll her in this special needs “camp” at the school right by our house. After a lot of research and asking around, we decided this program would be a good addition to her normal regiment of weekly therapies. I’ll leave the specifics of what exactly they do to Steph when she has time to post about it, but it essentially revolves around muscle memory since Paige’s brain can’t tell her how to do things we wouldn’t normally even think about, like sitting up or rolling over. Despite her limitations, Steph and I swore from day 1 we would do everything in our power to get her little brain and body functioning at their maximum capacity. And we think the work they do with her at this school is going to help her to continue to thrive and excel beyond everyone’s wildest imagination.
On Sunday, June 7th, Paige celebrated her 2nd birthday. This wouldn’t be anything more than balloons and birthday cake for a “normal” 2 year old, but for Paige, every birthday is a milestone. Being that a lot of liss kids don’t even make it to 2 years old, we are honestly lucky that she is doing as well as she is, and thriving at that. We had a party with our family and friends on our deck that weekend, and it was a perfect day to celebrate her. As a result of everything we’ve been through as a family, we don’t take anything for granted, and have learned to appreciate every chance we have to make a memory with her. Her party that day was certainly something we will always cherish in our hearts.
Our summer is going to be crazy, in a good/busy kind of way. We have something on the calendar almost every day of the month through July, from Will’s soccer to Paige’s special needs camp and everything in between. It’s good, because I think as a family, we’re starting to develop a sense of “normal” after so many unknowns over the last year. Steph and I are realistic about what the future holds for Paige and our family, but that doesn’t stop us from appreciating all of the good things we’re experiencing now.
And thanks, one final time, to those of you who contributed to the Paige Patrol fundraiser. We will always be thankful for your generosity and all the good it is doing for Paige.
Pictures from the park, our home, a Pittsburgh Pirate game, Paige’s 2nd Birthday, and Conductive Ed!