I just looked at the last time I blogged and holy cow…things have been a little busy here! So, let’s get to it! From The end of July until September I was busy working on our Annual Fragile X Walk. Every year we hold a walk at a local park here in St. Louis to bring our local families together, have a great time together and spread awareness. We had the most beautiful weather, a great turnout and we raised over $18k!! This was my first big event with the Fragile X Resource Center of Missouri and I am so glad to be part of this organization. They have been nothing but welcoming to our family, I have made some incredible friends who just get everything you are going through and I love that Carter has found some friends in this group that understand the things he goes through as a sibling to someone with Fragile X. If you do not have a local Fragile X Resource Center or you do, but you want to connect with us, please do. We would love to welcome you to our group!
In August, Jackson started his school year and it has been absolutely amazing! We were a wreck thinking how this transition would go, but he surprised us yet again! His first day he got out of the car, took his teacher’s hand, waved to us frantically, said goodbye 50 times and ran inside! He was so happy to be there and that put us at ease. It has continued to be fantastic for him as he is now using a PECS (Picture Exchange Communication System) Sentence Strip to communicate they things he is working on verbalizing and he is doing amazing with that. He has a book at home and one in his classroom at school. You keep the book in the same location, so he knows where to find it and then he grabs a picture that says, “I want” and then he grabs the picture of what he wants and puts those pictures together in a sentence on his velcro strip. The goal is that he continues to work on saying the full sentence when he brings us the strip. Sometimes he will just tell me “Strawberries”, but I will stop him and have him say I. Want. Strawberries, because we know he can do it…he just really wants the strawberries and bypasses the full sentence sometimes. I can’t blame him as I love strawberries too!
In September, not only did we have our Annual Fragile X Walk, but Dan joined me on the Fragile X Resource Center of Missouri’s Board of Directors as the Vice President. I have to tell you how lucky I am to not only have him as my partner in life as we raise these two boys and navigate our Fragile Xperience with Jackson and now have him by my side as we work to grow this group in our local area. We are now busy working on Board Member Elections, updating the Resource Center website, figuring out charitable contributions and planning next years events….all while having full time jobs, raising 2 young boys 5 and under, hockey practice/games, PSR, etc. It is crazy most days, but they are worth it!
This month we celebrated Jackson’s 4th birthday and it was such a great day! We had the Bubble Bus come and entertain us with their amazing bubbles and music, yummy food and more importantly amazing family and friends join us! And as I am sitting here typing this we are packing to head to Chicago today as we make our first trip to visit Dr. Elizabeth Berry-Kravis, affectionately known as EBK in the Fragile X community. She is an expert in the Fragile X field and we are so excited to make this trip and hopeful for what the visit will yield.
As you can see we have definitely been busy, but it has been a good busy!
XOXO
Our Fragile Xperience 