Friday, February 26, 2010


I often wonder what life would be like if we didn't have Sanfilippo in our life. It's been my goal to find the positive in this "new life" we've been given. Some days it's really hard. It's especially hard when the dark out weighs the light. However, I've found that the light prevails and there is so much positive to focus on. For example, Sanfilippo has brought knowledge, compassion, strength and focus into my life. Because of all of these things I'm a better person. I can be a better mother, sister, wife and daughter. Another example, are the people that we have met along our way. The people that we don't even know are out there, that our story is touching them in some way. This amazes me. We have been so fortunate to meet strong and encouraging people that inspire us and help us through our tough times. We've made friends along the way that are truly a God send! I've been so touched by the family members that are out there that want to help make a difference by bringing awareness to the people around them. My cousin Allison is making purple bracelets for all of her friends to help spread the word about this ugly disorder. She has touched my heart! I've been passing letters (hand-written!!!!) between myself and another cousin. This is something I look forward too, and another little thing that means so much. Livia is touching the lives of so many people and I can't help but feel like it is a blessing. I'd give anything to trade places with her or just take it away all together, but I can't. I've been given insight into what our future might look like. It's scary, but I'm able to cherish all of these blessings and LIV each day with purpose. I have no time for drama, excuses or petty fights. So, because of Sanfilippo I feel, in a way, I've been cleansed of negativity. With saying that, it's not like I skip around all day humming to myself and feeling on top of the world. I'm far from that. I just have a new sensitivity to my surroundings. I see things so differently now and I appreciate the goodness and kindness of this world. Life is about choices, I can choose to lay in bed and cry all the time or I can choose to pick myself up and enjoy what life has to offer. We only have one life, don't you think we should make it a good one?

Monday, February 22, 2010

Here are some updated pics of the girls. They are really starting to interact and play together. Finley is trying so hard to keep up with her big sister. She is crawling, or so it resembles a crawl, and walking around furniture. Time really goes too fast, but each day my girls are doing something new. For this I'm happy and excited to show off these pictures.

New Songs

I came across this song by Brett Dennen a few months ago. I was in my bathroom getting ready for something and I had one of the music stations on that comes with our satellite. I was listening to music not really paying much attention to what was playing. This song "By and By" came on and for some reason it just caught my attention and I stopped what I was doing to make sure and catch who was signing it and write down the title. My first thoughts when listening to the words were of Stefanie and Justin. They have become (in such a short amount of time) more than just friends! They are real people that have inspired, comforted and loved us through this difficult time. It is such a blessing that through this terrible diagnosis, that both of our families are going through, we have been lead to one another. I can't imagine going through this without having someone that can relate to exactly what we are going through. So I dedicate this song to them beacuse they have touched our lives and make us want to be better people. I love you Stef, Jut, Jay and Bee-Ba!

The other song is a Hymn that was sung at our home church this past Sunday. I love the church that we are attending in Rockford, but there is no place like home! Something that I miss so much is singing from a Hymnal. It's not like the songs that we sing at Rockford First aren't great, and don't speak to me because they do. However, I really miss Hymns. This particular Hymn, the Hymn of Promise really touched me and my life. Unfortunatly I can't download this song to my page directly, so I'll write the lyrics at the end of my post. I think I'm going to go buy a Hymn and start reading them.

In the bulb there is a flower; In the seed, an apple tree; In cocoons, a hidden promise: Butterflies will soon be free!

In the cold and snow of winter, There's a sping that waits to be, Unrevealed until its season, Something God alone can see.

There's a song in every silence, Seeking word and melody; There's a dawn in every darkness, bringing hope to you and me.

From the past will come the future; What it holds, a mystery, Unrevealed until its season, Something God alone can see.

In our end is our begining; In our time, infinity. In our doubt, there is believing; In our life, eternity.

In our death, a resurrection; At the last, a victoryUnrevealed until its season, Something God alone can see.

Wednesday, February 10, 2010


Since Christmas I feel like I've been living each day in a bit of denial. It's easy to do since we have such a great routine. I feel like I've put MPS away to try to bring back myself. I was tired of being sad everyday. I was tired of looking at Liv and feeling that pit in my stomach. For awhile, it worked.

Livia had her preschool screening last week. I was extremely nervous about this because I knew that I was going to have to talk about her condition. George and Cindy came up to stay with Finley so that I could give my full attention to this endeavor. When we got to the screening they took us to a table that had all of the children's files. They got Livia's file out and right there was an Internet print out that said Sanfilippo Syndrome and a bunch of highlighted sections. This isn't how I imagined this would go. We then went into a room with two very nice ladies. One was a speech therapist, the other was the school psychologist (this was just by chance that we got her). They started talking to me about what Livia was capable of (at this point they did not know about her condition). I was trying so hard not to lose it, I didn't want to cry. I lost that battle. I started crying and trying to explain MPS. I gave them a booklet on SS. They were both very kind and very interested. I gained my composure and was able to talk with them. Livia was happy and content the entire time. I was asked to leave so they could spend some time with Liv. She waved and said bye-bye mama. I waited for them to come get me and we were on to the next step of the screening. When we were done I had errands to run to get ready for Livia's party. My first stop was the bank. I sat in the parking lot and cried. The thoughts that ran through my mind were that I could not do this. I felt like I was not going to be capable to live this life. These are terrible, awful thoughts that no one should have. All this time Livia was in the back seat reading a book and eating a snack. She was happy. This preschool screening brought me back to reality. I called my dear friend Stefanie and vented to her since I knew she would completely get what I was saying and how I was feeling. She helped me to calm down and reassured me that everything was going to be ok. It's hard to face your fears and this was one of my first fears. I also realized that this is my reality and God gave me a responsibility to take care of these angels that He put in my life. I know that Jake and I are going to give our girls the best life possible. I know that I am capable of providing any type of care that will be needed during this life. God knows that we are strong and that we can face this. We have no other option.

Awhile ago I posted a question on Facebook. I asked "What is your comfort?" I wasn't surprised with every one's answers. They were mostly answers of family and food. I agree, these are comforts to me as well. I was surprised that only one person, my sister, mentioned God. I've found so much comfort in our Lord that I'm even surprised by this. I say this because when I was younger I had a really bad experience at church. I felt pushed away and I didn't feel welcome. I was a young kid that didn't understand this. I felt very uncomfortable and confused. Going to church became a fight, at times, with my parents. I wasn't getting much out of going, and why would I want to be in a place that I felt like I wasn't welcome? I look back on these situations and it saddens me that I was lost in a place that was suppose to be a comfort. Jake, the girls and I have been going to Rockford First. We have visited so many different churches in the area, but Rockford First is a fit for us. One of the recent series was 24/7 and the message was "comfort." It was on the book of Corinthians. This was such a powerful message to me. I became so inspired and knew I could face whatever challenges are put in my life. I know that the problems in my life are not bigger than God. "All praise to God, the Father of our Lord Jesus Christ. God is our merciful Father and the source of all comfort." (2 Corinthians 1:3) Through this journey I've discovered so much about myself. I've discovered a person within myself that I didn't know existed. I've found a new Faith, that I'm not ashamed of, I've found focus, strength and more love that I can't even explain. I've also learned that there is so much hurt in this world. I feel like everyone has some kind of heart ache. Maybe it's a situation like what we are going through, a troubled marriage, the loss of a loved one, cancer, addiction, miscarriage, the list could go on and on. Why is it that we have to experience these situations? Maybe they are situations that are to teach us something. Maybe God is watching how we are handling ourselves and the people around us. In my opinion, God does not put these situations in our life. I do know that when we discover that God is our source of comfort, we should help others do the same. Pastor Jeremy said that being comforted may mean that God gives you the ability and strength to overcome a very difficult path. The problem doesn't go away, but God inside of you becomes larger that the problem. This is my comfort and this is what I have to hold onto.

Livia is 3 now, and her birthday was a huge success. We had a house full of happy people that came to celebrate with us. Jake and I put on a small magic show to go along with the Abby Cadabby theme. Jake was so funny and had the entire house laughing. He is a natural born entertainer, and was definitely in his element. Livia had some of her friends over and she loved showing them her toys and running up and down the hallway. I loved having a house full of friends and family. I love to entertain and feed people. I had so much good help that the day was stress free!

Finley is growing by leaps and bounds. She still has a "fro-hawk" or so her daddy calls her spiky hair. It's getting longer and thicker in the back, so I'm sure it's going to lay down any day. I really don't want it to lay down, it's really cute! She is crawling and just the other day I sat her by the couch and went into the kitchen and looked back at her and she was standing at the couch! I was so surprised I cried a little! She has such a great personality, and I can tell that she is going to be outgoing and independent. She is such a blessing, and she helps me to get through some of the hard days.

Jake and I are both preparing for the Illinois Marathon (Half) in May. I'm looking forward to warmer weather and getting outside for some fresh air. This is such a hard time of the year. I love the snow when we first get it, but I'm ready for it to be gone during February. I'm getting spring fever really bad!

I have to say one more thing before I turn in for the evening. I'm so appreciative to all the people that don't even know us, or know us from a friend of a friend that reach out to us. Just today I got a very nice FB message from the wife of a guy Jake went to HS with. They don't live far from us and often travel right by Roscoe to go to Chicago. She kindly told me how she reads my blog, would love to meet us and prays for us everyday. I remember meeting her husband once, but this small act of telling me she thinks about us means so much. I can't even explain how much this helps me. I cried when I read her message, but I can honestly say that it made my day. Thank you to everyone out there that cares. I care about you too!