7/8/11 marked our 2 year walk with Sanfilippo. It’s hard not to re-live that day. It’s hard not to re-visit those emotions we experienced. It was devastating. However, I also remember our friends and family that rallied around us. Finley was baptized soon after we got Liv’s diagnosis. I can remember sitting in church, tears streaming down my face, and Jake making the announcement to the congregation. I felt all eyes on us. I remember the accapella group, Sweet Adeline’s, signing that day. That was the first time I started “feeling” music. Shortly after that date, we had a laying of hands on Livia at George and Cindy’s house. I’d never experienced anything like that before. It was comforting to have our family surround us during such an unsure time. Susie Burwell, our pastor’s wife, gave Livia a painted stone that came with the word “healing” on it. This marked the beginning of Livia receiving prayer shawls, blankets, dolls with knitted clothes, angels, books, cards, and other things that I’m leaving out. The point is, it marked the time in our life when everything changed. We had to start living a new “normal.” Our focus changed for our children. Our Faith started taking the wheel, and the words compassion, perseverance, generosity, patience, and determination took on entirely different meanings because we were and are…….. LIVing it.
This 2 year Dx day, emotionally, is hard for me. As much as I’m fueled to fight for Liv’s Life, the everyday mommy can’t help but re-live that heart ache. As much as I wish I could take this away from my beautiful baby, the fact is, I can’t. However, I can take care of her and give her everything I can. I want to provide a life for my girls that will make a mark in their legacy.