Jake, the girls and I are so blessed to be parts of such amazing families. Being so far away from everyone is really hard. It’s not easy going through the everyday things without some sort of support. (We do have great friends that are here, but it’s just different with family.) Having the support from our families is really a wonderful and comforting thing. My mom’s side of the family had a family reunion on Sunday. This was a yearly Thanksgiving dinner that we really don’t miss. This year we were offered to put up a donation bucket, sell our t-shirts and coffee. This was a great offer and I felt very lucky to be able to do this. On our way to the reunion, I got extremely anxious and nervous. My heart felt like it was going to jump out of my chest. I knew I was going to have to talk about Livia and her condition. Sometimes I find myself hiding from MPS and ignoring it’s even in our lives. Sometimes it’s easier to do this. But, I was about to face it and face telling people………..family……….about this devastating issue that is going on in our life. I really think my nervousness stems from my uncertainty on how we will be received. Not if we will be able to sell anything or get any donations, but if people will embrace Livia and talk to us about her situation. All the monitary, foundation work, fund raising aside, the most important thing to me is to tell Livia’s story and for her to be loved and have the opportunities that anyone else has. Of course I get nervous about saying the word “terminal.” No one wants to hear that or have to live with that. However, she is here and we get to experience her today. That is a HUGE blessing. So, back to the reunion. I spoke right before we ate. I stood, holding Livia, giving as little detail but giving as much as I could to get the point across. This was a pretty big crowd that I spoke in front of. It’s not the first time, but it was a lot of people standing, looking at us BUT, getting to meet Livia and learning about her. I could hear the shakiness in my voice, but I held my tears back. Which was a success. After I spoke, we ate. Then people started talking to me. Even in the food line, getting the girls food I was asked questions. All my nerves were for a purpose. I got to spread her story and she was embraced by so many people. I LOVE how social she is, and other children (who have no clue she is different), played and played. It was a blessing. The foundation raised money, and we even made some money to help us pay for Livia’s Genestein. Our family’s generosity, love and kind words meant so much, that I can’t find the words to fit how grateful we are. This reunion, as nervous as I was to go, has fueled my desire to do work for our Foundation. To feel the out reach of support makes me want to do more for research and to spread Livia’s story. So, for now, I want to say THANK YOU to everyone for loving Livia. For supporting our family in this journey. It would be an impossible one without all the help.
Enjoy today and Liv Life!!!!
“Therefore, as we have opportunity, let us do good to all people,
especially to those who belong to the family of believers.”
Galatians 6:10 (NIV)