Updated: May 19, 2021
Covid did all the things to us all. It slowed down time where many of us felt as if it actually was Groundhog's Day....every day. Some used that time with great efficiency to study or focus on health.
We used our time going through every page of Joanna Gaine's Cookbooks! We consumed more butter and cream than one could imagine. We had bottles of wine delivered to our door and we ate and drank till our hearts content! Needless to say, this was the beginning of quarantine. Who knew that over a year later we would be dealing with the same isolation? Those Covid 19# were definitely a thing, and it was time to get back on to the Peleton to make some health changes. During these months, Andrew has been home recovering from a major spine surgery, home schooled and easily, COVID was a plus for Andrew to have his mom, dad, sisters and boyfriends around! Andrew did NOT lack in attention!! This was a silver lining of COVID for us.....
As far as our PKS focus, we hosted our Operation Xmas Jammies Drive through Facebook, PKS Day was not in person, but all awareness was done online. We were able to raise money through Facebook to help provide the jammies to our PKS Kids and we had a group of Engineering students who used our Jammie drive as their project, which also aided in the success this year. This was the first "ah-ha" moment for me. In the past, we had focused on our local community for support, but this year, the support took off with kids of all ages on a social media platform. We learned that young kids were passionate about our cause. This taught me that our story was of interest to all ages and we had the potential of bringing light to families who could use some sunshine.
Another "aha" moment was when Andrew, our son with PKS, turned 16 on December 26th. Sweet 16 is typically celebrated by going to the DMV and taking that driving test and holding up that paper, having mom take a quick photo, and driving white knuckled with a grin on their face the whole way home. Their world is about to become more independent, or it is supposed to. You see, these birthdays.......gulp. They get me every. single. time. I try so badly for them not to. But, it still hurts. After ALL this time. 16 years of something so profound, so life changing, so opposite of independent!! My Andrew will never drive that car. He will never go on that first date to get that first kiss. He didn't hold that certificate up to show he passed. But, he holds something that we are still encrypting, decoding and so unique. We instead, have learned to navigate with his backseat driving (laugh emoji), and we all are beyond blessed to be with him on this journey he is navigating us through, as he trusts us to drive him where he needs to go.
That 16th birthday not only reminded me of the what if's, but, it also show cased all that we are! All that we have become! How lucky we are to have Andrew doing as well as he is despite all he has been through. We made it through some really tough stuff. We have learned a TON. We have received such love from our community, family and friends that it is time to give back.
Creating a non-profit has always been a dream of mine for many reasons. I believe that the quality of a family's life absolutely reflects the special child and their happiness. Andrew's condition is so rare, and with rare comes a host of battles. Many battles we cannot win and so often we are tied up in the complexeties of raising a special needs child, we sometimes don't have the energy it takes to engage in fun. Our life does look different. BUT, I believe socializing is so important in this process of grief! I believe that with those safe friends, we can share our struggle while listening to their daily struggles in their lives as well. Our hearts begin to mend, our minds start to engage again, and this new normal and friendships is needed on both sides. Through this non-profit, we hope to extend those olive branches of friendship through sharing our stories and creating small acts of kindness through a pair of Xmas Jammies, connecting through a social media platform or other future events. The bottom line is we just need to start. I am hoping my 6 years I spent on the PKS Board helps in navigating this new non-profit adventure, but I don't have a business major. And, I don't love bookwork. But, I DO have this passion that I can't explain. A bit of fire in me, because of Andrew. It is the craziest, hardest, most painful, joyful, unexplained love one could experience. So, here we are. Our first "post" of sharing our lives with you in hopes we learn something new in this rare world we live in.
Here's a glimpse into our last year with Andrew. As you can tell- he spent a lot of time in the water!
Andrew showed us his strength with some new moves and some independence!
Project 12-04 is an inclusive and educational community focused on bettering the lives of children and families affected by rare genetic conditions. Join our movement.