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!

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?