Saturday, May 22, 2010


My life is pretty much an open book. I really don't mind this. I've never really felt like a private person. I'd much rather talk about what's going on than internalize my feelings. The same thing applies with Liv's life. I always want to be approachable when it comes to what's going on in her life. If someone has a question, I'd much rather them come to me so we can talk about it. Nothing is easy with Sanfilippo. So much is unknown. We really don't know how it's going to affect her. I pray so hard that it be God's will for something to come in her lifetime that will save her life. I can't imagine not having her. Lately I've been feeling a little overwhelmed with everything in our life. Good and bad. We've had a lot of good lately which is reason to celebrate. We have an amazing group of friends that have rallied around us with some great ideas on how to fight for Liv. To sit in a room surrounded by some really big football guys, a coffee guy, other moms and dads, grandma's and grandpa's, and friends that really love us is an emotion I wish more people could get to experience. I'm overwhelmed with the good because there is sooooo much to do and not enough hours in the day to get it all complete. I don't want to let anyone down. I want to get everything done and start seeing results. It's so important for me to make this foundation a success for Livia and other MPS families. I can't and won't just sit back and do nothing. When the good overwhelming feelings come through it fuels my fire to fight even harder. When I get to see God's work being done through my daughter, it makes me proud and happy. It really is an amazing thing to be able to recognize. It's helped me to embrace the place that we are in this "new" life. I trust Him and I know that His hands are strong and will carry this burden for me. Romans 8:28 And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.

Wednesday, May 12, 2010


We are working on getting the donation spot up and going on the website. We are able to take donations to the foundation. Checks made out to Liv Life Foundation or cash can be sent to 11098 Lemon Grass Ln. Roscoe, Il 61073. Electronic debit/credit card capability will be coming soon! Your donation may be tax deductible. Talk with your tax agent to find out. Liv Life Foundation will be a 501(c)(3) organization. Thank you so much for your support.

Monday, May 3, 2010


Saturday, May 1st 2010 Jake and I accomplished something that we both thought would never be possible. Crossing the finish line in Memorial Stadium was such a great sense of accomplishment. I really feel like this is the first thing I've ever really been this proud of myself for. I can recognize that I worked really hard and did what I set out to achieve. I think through this process I've really found out who I am and what I'm capable of. This past year has been such a life altering, devastating, eye-opening, soul finding kind of year. It's also been a year of seeing God's work and glory really shine through in some amazing people including ourselves. This new path we are on has led us to meet some wonderful and inspiring people. Having these "new eyes" makes us recognize the good and really know what is important. When we crossed the finish line we found our family and saw our girls right away. It was so emotional to see a section of our Livlife black tshirts and Livia waving real big. They let Livia down onto the field and she ran into my arms. Of course I started weeping and all these emotions I was having were so REAL. I can honestly say I embraced every moment and still get teary eyed thinking about how proud I felt at that very moment. I wasn't only proud of myself and Jake for accomplishing this, but I was proud of being Livia's and Finley's mom. I was proud of family and friends for being there to support us and to represent Livlife. I was proud of the day and what it meant to me. As Jake and I walked away from our group we had to stand in a line to get out of the stadium and get our bags. As we were standing in this line congratulating one another going between laughing and crying, I looked at Jake during one of my crying moments and asked him if it would feel this good when they find a cure for MPS? He will feel better. It will feel better, and I know that day will come. But for now, I'm going to try to find that good emotion in some part of each of my days. Today I get to hear my girls laugh, see them play together and feel that love like I finished a 13.1 mile race and that's all I need to know that today is worth it and today is what I'm proud of!