Thursday, July 21, 2011


Today is day 6 away from my girls. This past Saturday, Jake drove the girls half way to meet his mom and dad to drop off Liv and Finley for the week. Tomorrow, Jake and I will drive to central Illinois to meet them and stay home for another week. This past week has gone really fast. The anticipation of "getting a break" from the everyday schedules and routines was very exciting. I was looking very forward to getting my own time, getting things done, spending time with Jake, and eating meals in an un-hurried fashion. I started to miss them on day 2. I realized that as hard as my everyday life can be, I wouldn't trade it for anything. My girls bring so much joy to my life. They really give me purpose and drive. When they aren't here, and I have so many ideas of things I'd like to do, I catch myself sitting on the couch watching a movie. Now, this is nice to do occasionally, but not day after day. I have gotten a lot accomplished with the foundation, with help and direction from Ed. This is different. When it comes to the foundation, as hard and overwhelming as the work can be, I've never been so determined and focused to accomplish something as I am with Liv Life. I know this is my calling. To be completely honest, when things were hard or confusing to me in the past, I'd find any excuse to run from it. I never had the confidence or know how to want to figure out what I didn't understand. Typing this and re-reading the previous sentence make me really sad and embarrassed. On the other hand, it gives me complete confidence and reassurance that I'm doing what I should be. I've never been so "on a mission" before this. Not only with the foundation, but I'm learning how I want my children to be raised. I'm reminded that God chose me to be Livia and Finley's mom. God chose me to start this foundation. I feel affirmed. I'm also reminded how much I love my girls. I don't like or want to be away from them. They both bring unique newness to my life, if that makes sense. I've heard people say that they relive their life through their children. I feel like my children have given me new eyes. I see and feel life differently because of them. Just like with the foundation. I would have NEVER, in a million years, thought I would be running a foundation, and liking it. Writing a blog and hearing that my words impact others. Even being a mother. This isn't how I imagined motherhood. Honestly, it's better. It may have more work and more heartache attached, but it's mine and it's comfortable. This break and reminder has been great. I appreciate this time to gather my thoughts and re-focus. I'm so excited to see my girls tomorrow. I'm excited to keep working on the foundation. I know good things are in store. Be reminded that a break is sometimes all you need!

Tuesday, July 19, 2011

Volleyball Benefit

Our cousins, The Black's, organized a volleyball tournament to benefit our family and help with some of our medical expenses, bills, and costs. They put in a lot of hard work organizing the tournament, getting prizes, food, and of course players! It was such a wonderful gesture of help and love. Unfortunately, Livia got sick once we were at the tournament. She, myself, my mom, and Finley left shortly after we arrived at the Mad Hatter tournament. Jake was able to spend the day and was even able to step in and play, which I know he thoroughly enjoyed. We had a lot of family volunteer their time to help that day. We want to thank everyone that organized, played, volunteered, donated, and helped out. The money that was raised at this tournament is nothing but a blessing and we are so appreciative of every cent. It will help us to pay a few of our medical bills. Please watch this short video that Glenn Black put together from the photos that he took during the tournament.

Volleyball Benefit from G Black on Vimeo.

Saturday, July 9, 2011


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.

Tuesday, July 5, 2011


It's once again the little things that mean so much to me. Nowadays, it seems like I'm constantly observing. I'm a "watcher" by trade. It seems that I intently, and constantly, am observing what my children are doing. I especially keep an eye on them when we are out of our comfort zone (our home). I'm so nervous when we are out in public, at someone else's home, or somewhere that Livia can get into something she shouldn't. I'm also very nervous when she interacts with other people. I'm nervous about how they will respond to her. I'm always very quick to explain to people that may not know Livia or her situation that she just doesn't understand personal space. You see, Livia is very loving and affectionate. When she likes someone, she's hooked! I'm always so grateful when someone pays Livia the attention that she is looking for. When someone takes the time to play with her and talk to her like any other child, is golden. It warms my heart so much when I see compassion come through and I can step back and let Liv be who she wants to be. To see my child embraced for who she is, is all my heart desires.