Honesty

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.

DONATION SPOT

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.

13.1

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 said.........it 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!

Will you be here tomorrow

Let's face it, no one can really answer this question. Our hope is yes, of course I'll be here tomorrow. My thoughts on this are not so much for myself, but for Liv. I realize this is a pretty awful thing to think about and pretty depressing for a Monday morning, but this is my reality. In the back of my mind is a constant thought of losing my child. A pit in my heart that no one should have to feel. I try so hard to not let this thought surface because I can feel myself going to a dark place. The truth is, it's always there in some way. Last night Jake and I watched "The Blind Side." What a great feel good movie. I cried through most of it. During the movie (I can't tell you at what point) I felt anxious about Livia not being with me. I do mean in that moment in time, not a thought of her being gone forever. I knew she was comfortable in her bed, but I needed her with me. I wanted to feel the warmth of her body and smell her sweet smell. I was surrounded by her pictures, and in a way, it made it worse. Then I started thinking about her not being there like really not being there. Then it felt really bad. I can't IMAGINE not holding her or hearing her. I had this thought awhile back when Livia was in a different car than us. It was Jake, Finley and I and the thought came to me that someday it may be like this, just the three of us in the car. It's so hard to imagine that time and I know I shouldn't because no one REALLY knows what our time looks like on the earth. We can only hope that tomorrow will come for us and we can be happy about yesterday. As dark and as hard as these thoughts can be on me, I can find the light in all of it. I can LIV today so full and make it a point to love my kids just a little harder. I find joy in the smallest things that before diagnosis I would have taken for granted. I love watching my girls eat! Even in the frustrating moments of dirty diapers, teething and loads and loads of laundry............I'm lucky to experience it. Don't get me wrong, I'm human and I get angry and frustrated but I have a constant reminder to just take a deep breath, get over it and move on. There are more important things to put my energy towards like living my best life today and praying to be blessed with tomorrow. I love you Livia and Finley more than you'll ever know. You make my today worth it!

Philippians 4:6
"Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God."

www.livlife.us

This is so overdue..............I really have no excuse other than I just haven't made the time to blog. We've had so much going on in our lives. I've found that keeping busy makes me a happier person. I'm not one to sit still for very long. We have been so blessed with some AMAZING, self-less people. Our friends the Phillip's have a church in Poplar Grove called The Grove Fellowship. Jake and Brian became instant friends when we moved here. Brian helped with a group Jake is involved with at the High School, Change Inc. Brian has an amazing staff that volunteered to help us get our beautiful website going. Max and Matt helped design and start the site. We had a couple face to face meetings where I laid out what we were looking to do and gave them my ideas. They took everything I told them and enhanced it more than I could have expected. Our logo that Max designed is so perfect. Having something like this has enabled Jake and I to work towards something. Before our website I felt so out of control and lost because there was nothing I could do. Having this site and starting our foundation is bringing a little bit of that control back. I feel like we are working towards something. We are bringing awareness to this scary disorder. We are able to tell our story and be proud of it. I am so proud of my family and my daughters. My hopes and plans for this site are to of course bring awareness. I also hope that once we become not-for-profit, we will be able to have fundraisers and events to make money for research. I have so many ideas! With all that said, thank you to the Phillip's for always being there for us. Brian and Kristy are inspiring and make us want to be better people. Max and Matt, thank you for your self-less desire to want to help us. You will forever have a special place in my heart.

We are so excited that we have our first batch of T-shirts made with our logo on them. They are done in time for the Illinois marathon. Dad and Carol, thank you so much for helping us get this task accomplished. I haven't seen them yet, but from Carol's message and talking to my dad today about it, I hear they are AWESOME! I love you guys so much and am so appreciative of this.

I have so much more to write, but feel like it all doesn't belong in this post. I'm working on making more time for this blog. It feels good to write, and I know people like to hear what's going on with us. Thank you to everyone who's taken the time to look at our website. If you haven't seen it, check it out..................www.livlife.us!

BEAUTIFUL

It has been so refreshing to wake up with the sun beaming in. It makes the house feel so good and it makes my attitude that much better. Livia and I were able to spend about 3 hours outside together. Finley joined in when she got up from her nap. It was so great to watch Livia play on her swing set and run around the yard. We went on a walk when Finley woke up and stopped at a couple neighbor's houses and the kids played together. I love watching Livia interact with other children. She thrives around her friends. The fresh air and the sunshine felt so good. I think I even got a little color on my cheeks. Livia was so tired at bedtime. So was mommy! I'm really looking forward to the summer when Jake can join us for this fun. Yesterday was a really BEAUTIFUL day with my two BEAUTIFUL girls!

Quiet

The house is quiet, both girls are sound asleep. All I hear is breathing through the monitors, and Lola snoring. This is a hard time for me. This is when my mind wonders and my thoughts consume me. It's one of those moments where I think to myself, a time like this before Liv's diagnosis I would be like............yes! Peace and quiet for mama! Not that I don't need my own space and time, but I'd much rather have someone up with me right now. I'd rather be listening to a baby cry or changing a diaper or playing than having these awful thoughts. My girls help me get through these tough times. Livia's laughs and babbles are music to my ears. Finley's response to me and the games we play are so precious. Lately Livia has been coming up to me when I'm doing another task, like washing the dishes, and pulling my body around and tugging on my clothes saying "come on mama." Or, if she is having fun doing something on her own she'll just motion me with her hands to "come on"! I absolutely love this. I love that she wants to play pilates with me. It's a modified version of airplane. Finley's personality is shining. She recognizes when she makes me laugh, and then ham's it up even more. Her 4 front teeth show now when she smiles. I love to tickle her tummy. Why does life have to be so unfair? I have these precious wonderful gifts, but in the background is this ugly and difficult thing. I try so hard to push it aside, to be strong. This is a good time in our life, and in some ways I think I might be in a little bit of denial about the whole thing. It's better when I can take it one day at a time and not think about tomorrow, but some days, like now, I have a hard time controlling my mind.

"CRY".................thank goodness!