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!

Awareness

This is such a critical time, and awareness is what we need! There is hope for a cure or a treatment on the horizon. As a family, we have so many ideas and with our new website we will be able to promote awareness and fundraise. This was on TV not long ago and it's a great way to spread the word. Please join us in the fight to save Liv's life. Check out the link's below to see what some other people are doing to raise awareness and fight for their own children's lives as well as all children affected with this unfair, nasty disorder. Please feel free to contribute your ideas to spreading awareness or good fundraising ideas. kelfish121880@hotmail.com


www.couragemovie.com


http://abcnews.go.com/Health/video/graces-story-10012107&tab=9482931&section=1206835&playlist=3547557&page=1

Perspective

The ability to perceive things in their actual interrelations or comparative importance. This is one definition of the word perspective that I'm keeping in mind.
We all have things in our lives that we struggle with. Whether it be our weight, finances, dedications, friendships, relationships, addictions or even our day to day tasks. Something in your life is a struggle. I've had a few issues that I've been struggling with lately, and one of them is something that has been on my mind almost daily since Liv's diagnosis. It's a friendship that I am missing terribly, but I feel like I shouldn't be the one to come forward. I have to come clean about something, and most of you who know me might already know this. I am a stubborn person. I have a hard time admitting when I'm wrong or backing down from a thought that I think is right. In a way I'm glad I'm like this because it makes me a strong person. However, it can bite me if I'm not careful. This past weekend, I was given a perspective on this situation by someone that I respect their opinion and loved what they had to say to me. I was given another perspective just yesterday during a play date by another friend that I am just getting to know. Both of these women had really good things to say, and I learned a lot during both of these situations. The weekend perspective was that I need to be the bigger person and make the first step to rekindling my missed friendship. I don't know how my missed friend is feeling or what the situation was in her life to make her make the choices she made regarding our friendship. In the end, if I really miss my friend and cherish our relationship then I need to tell her. The second perspective that I learned jut yesterday was that people don't deserve to be judged. Someone might seem unapproachable but turn out to be just the type of person you need in your life. It's like how the old saying goes, "don't judge a book by it's cover." It's simple but true. You never know what someone is going through in their life to make them they way they are.
I try to put myself in other people's shoes regarding our situation. I probably wouldn't know what to say or know the best way to ask someone about their daughter's terminal disorder. It's a very scary thing. However, I'm still the same Kelly Fish Hubert that I was in kindergarten, and I do miss my friend. I'm working on that stubborn person inside of me and figuring out how to make the first step. I think this might be a baby step, but it's not really a fair one because I don't know if she even reads this. I know I should just pick up the phone and call, but that seems too hard. Maybe a letter or email will be what I do. Either way, I need to do it. Kristy, you are my sister in Christ and I love you and Brian for who you are and the good things you are doing in your life. Thank you for the advice, I do respect what you have to say.

For Brittany

Amazed

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?

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.