We are so glad to be back home and at the same time sad that we have to say goodbye to our family and friends. We left for Indianapolis for our 1st 1p36 deletion syndrome conference during July 31-Aug 3rd. We met such incredible families a total of 32 beautiful angels just like Kaylee. It was an amazing week. I didn't expect to feel so much inspiration and joy with everyone there. I guess I didn't know what I would be feeling...but it felt so normal and peaceful...we are complete strangers but I felt the connection and the bond from one family to the next...just like long lost friends...one big family. It felt good to know we weren't alone that other families were facing the same thing. We didn't have to explain everything...we could just express our feelings without judgement. It was awesome knowing that others care for Kaylee too and aren't afraid to interact with her or ask questions. It was definitely like a family reunion! I've learned so much during the conference from different doctors and therapists, but the things I've learned the most came from each other's personal experiences, struggles, and highlights. These personal experiences is something I will always cherish and be grateful that God put these wondeful families in our lives.
Each 1p36 child is so unique and each one of them have their own time frame of when they will reach their next milestone. A certain few of these children appear from the outside, to be flying through life and it's milestones, but many harbor within them, medical issues and impending obstacles, waiting for an opportune time to show their faces. Others fight everyday, every moment, just to be here with families who would move mountains to keep them here with them. One thing they all have in common is that they are all brave mighty fighters. Our children indeed teach us so much about life and how to be grateful for the "little" things. I am forever grateful for my Kaylee "my little miracle." Watching every parent interact with their child was priceless. It made me feel a sense of calmness and joy...a feeling that everything is going to be okay along our journey. Kaylee is only 1 years old but I felt if other parents who has been down our path can do this then we can too. It was very empowering feeling! Overall, our first conference was a unforgettable event that I will always cherish and will definitely look forward to next year. I cannot begin to tell you how much all of these families and their beautiful children have come to mean to us.
If you would like to learn more about our conference, please follow Alayna or Whitney's (Adventures of raising a disable child) blog sites. They did an awesome job recapturing all the events, pictures, and speakers. Thank you everyone for making this conference so special to us. We only captured a few pictures because we left our camera in our room....wish we took more of them.
