Intentional

My friend, Lis, placed this word on my heart. It really is a great word that I intend to adopt with everything I put my heart into. I really want to make a difference. I desperately want to help others, and help my family. I want to be so intentional at LIVing my life. I want to be the most intentional mother in the world!!!!! I want to give both of my girls every opportunity that I can. I want them to know how special and loved they really are. I want to be intentional in my Faith. I want to be "salt and light." I want to resonate, with my actions, what is in my heart. Meaning, my love for our Lord and his Law is how I want to LIV my life.

So, with the word intentional, I entered a contest. It may be bold what I requested, but I had to try. If nothing comes about with the contest, at least I've educated one or two more people about Sanfilippo Syndrome, and my beautiful family. Here is what I entered.

In 2011, I resolve to be intentional. Especially in my childrens lives. Livia, 4, has a terminal illness called Sanfilippo Syndrome. Finley, 2, is her sister. Since her diagnosis, we know how important it is to make everything matter, to be intentional in everything we do. Since her disorder is so rare, our foundation focus is to spread awareness and funds for research. I want to be intentional in their lives by providing every opportunity for them to the best of our abilities. I want to keep them safe. We are blessed with the home that we live in, but it is not handicap friendly. Livia's future includes, but is not limited to: multiple surgeries, loss of communication, loss of ability to eat and walk, loss of her life. I want her life to be purposeful and fun. If we had our mortgage paid off we would be able to ease the worry of paying for all of her medical bills, save for a safe and handicap friendly home, and most of all be intentional with our money to help others and provide opportunities for our kids!

We'll see if anything comes about with this. In the meantime, keep voting! Only 8 days left until the Pepsi Refresh is over. We've held 1st place for a long time. We'll see if it pays off on Feb. 2nd when they announce the winner. GO TEAM SANFILIPPO!

Whispers

For the past few months I've started whispering in Livia's ear. I say the same things over and over again. I do this several times throughout the day. My hope for this is if one day she isn't communicating, or life is very scary, I can whisper these familiar sayings to her and it will bring her comfort. I want her to always feel safe and secure with me. I want to be her comfort. She is so precious and easy going. I hate that her life isn't going to be easy. I'm not saying life is easy, but unfortunately, even if a cure or treatment does come about for her, this is going to mean routine doctor visits, infusions, etc. Believe me, I want this over the alternative. But I'm realizing that this isn't all just going to go away. This realization has made me want to work even harder. To fight for our children's lives and to tell her story. I'm proud that Livia's face is all over facebook and that she and her MPS friends are touching other people's lives. I wish it was for another reason, but it's not. This is our life and we are going to make the most of it. I wish I had all the resources and knowledge to do everything that I have brainstorming. I've been working on one of my resolutions, the not being afraid to ask for help resolution. I've had talented people offer their help and time. It's awesome. It humbles me to know that there are people who really do want to do something to help us out. If only we all couldn't just "pool" our talents, knowledge, and strength's to help one another out, don't you think this world would be a better place to be in? Anyway, I kinda got off on a soap box rant. I just want to thank all our friends and family out there who are voting everyday for the Pepsi grant. It is HUGE that we are in first place. Just a month ago the average person had never heard of Sanfilippo Syndrome, now we are ranked 1st. I think there are over 100,000 teams, people, foundations out there going for the 250K grant. It's great that we are making such a big impact. Keep it up until Jan. 31st at midnight.
As you tuck your kids into bed tonight whisper something in their ear that will bring them comfort. Even if its been a day of frustration, trouble, or sadness. You are your biggest comfort to your child. Let them know. Let them know that they are your heart. That you love them more than life!!!!

I'm proud to be Livia and Finley's mommy! I'm proud to be fighting and making a difference! Please feel free to share this picture. Make it your profile pic or just email it to your inbox. Help keep this going strong!

Pugil Stick Champion

Jake has a really good way of describing a situation or explaining his emotions by relating them to another. Yesterday was a hard day. Emotionally for me. It's unusual for Jake and I to both have a hard day on the same day, but when he walked in the door last night with red eyes swollen from crying, I knew he was having an emotional day as well. He's been having a really difficult time at school. No offense to any high schooler's reading this, but MAN.............some of you are hard to handle! He's in charge of the discipline at the HS. For those of you who know Jake, this job is hard for him since he is such a social person. Jake is such a realist and thrives on logic. (I've come to really NOT like the word LOGIC!) Anyway, the issues of school, having late nights, Livia, meetings, meeting deadlines, and worrying about an emotional wife brought Jake back to his Pugil stick Championship in the military. He compared this victory to how he felt life was coming at him. It was he and another guy in the final round of this game. He told himself that if he just kept swinging, eventually the other guy would have to stop. When Jake puts his mind to something, he will accomplish it. He won. He swung and swung and swung and eventually the other guy quit. He said that he feels like he keeps swinging at life, but life isn't giving up. Like we are taking one step forward just to take 10 steps back. I get so strong and get so focused to move forward. I'll open an email or see a photo on facebook just to get pushed down. I sooooo badly don't want our vulnerabilities exposed, however, I'm not going to be fake or pretend like everything is hunky dory. Facing the truth that our daughter has a terminal- whatever you want to call it- is hard. Knowing that we are going to fight with every last breath of our being, is exhausting, but we are all Livia has. We are not going to put our Pugil stick's down until we win. Keeping our faith and trust in God and knowing that His Will will be done can easily be pushed to the side when you have 2 young children that require all your attention. God is suppose to be placed #1 in our lives. Above everything. I hunger for His word, it really does bring me comfort and peace. I have amazing people in my life who share scripture with me and I can't tell you how much it helps me, and grounds me. It's hard, though, to make that time (for Him) during my day to bring me peace. On the hardest day's, even though I know better, I want to hide from it all.

Matthew 5:14 "Here's another way to put it: You're here to be light, bringing out the God-colors in the world. God is not a secret to be kept. We're going public with this, as public as a city on a hill. If I make you light-bearers, you don't think I'm going to hide you under a bucket, do you? I'm putting you on a light stand. Now that I've put you there on a hilltop, on a light stand—shine! Keep open house; be generous with your lives. By opening up to others, you'll prompt people to open up with God, this generous Father in heaven."

Thank you, Stefanie, for sharing this with me. I do want to shine. I don't want to be remembered as the mom who was always sad, never fun to be around. I want to walk through life with my head held high and proud of what we are doing. I want to be an example, a positive and OPTIMISTIC example. More than anything I want: Matthew 25:23 "His master replied, ‘Well done, good and faithful servant! You have been faithful with a few things; I will put you in charge of many things. Come and share your master’s happiness!’

For today, I will be happy. I will shine in my children's life. I will be a positive example for them and teach them about our Savior. I will do what I can. I will not stress about what I can't accomplish. I will swing my pugil stick because I am determined NOT to give up! AMEN!

An easy way to help

Friends and Family...........Pepsi is giving out a $250,000 grant and all you have to do is vote everyday for the rest of the month. The group that has the most votes wins. This grant would mean money for research to help find a cure to save our children's lives. This is free and easy. You can vote multiple times a day, and even text a vote in. We are currently in 11th place. That is really promising seeing how many groups are in it to win. Right now a Monkey refuge, Mark Twain's historical home re-vamp, and a girl's summit are ahead of us. I also just read that a man is staying on top of a lion's cage at some safe haven in order to raise money for their cause. I think it's great that people work so hard for the good in this world. But honestly, we are talking about saving CHILDREN's lives. Seriously, I can't think of anything more important than human life. I really do care about other causes, but I can't sway with this one. My heart is in this world for good, all good. But let's fight the good fight for our kids. Please help and please help pass the word.

http://www.refresheverything.com/curesanfilippo

My heart

Livia communicates really well with me. She is able to tell me when something hurts or when she wants something that is out of reach. She tells me what she wants to eat, or doesn't want to eat. Her drinks of preference are milk, water and tea. I love the simple requests that she makes. Her voice is like music to my ears. The reason for this post is to put something out there that may someday have meaning. It's not everyday, or even once a week. It's very random but it's something Livia try's to tell me and it's the same every time she does this. She will get my attention, look me in the eyes (which is rare) pat her chest over her heart and tell me "Mama, my heart." Sometimes she will precede the mama, my heart with "the doctor." Sometimes I think she is telling me that the doctor listens to her heart, but my gut tells me that's not it. I feel like she is telling me there is something wrong. Maybe it's nothing, maybe it's something.

Neglect

TRUTH: I've been avoiding my blog like the plague. Lately, I've been in total denial of Sanfilippo. Livia is doing really well and so I've put everything on the back burner. Liv Life foundation included, but I will get to that a little later. I've gotten the privilege of helping in Liv's classroom a couple times these past months. In the beginning of school when I would go for a visit, she would see me and then cry and cry. Now, she wants to show everything off. She's so proud of her room and teachers. I really love going and helping out. I love to see and hear about her progress. When I hear she is doing something new, I know she isn't regressing at all. I'm scared for the day (if that day ever comes) that I won't hear her precious voice. I love hearing her call for me, sing ABC's or Happy Birthday, call for Finley which comes out Ninny or Sis, ask for the Wiggles, read her favorite books, or just hear her say love you, momma. So, point being; my blog, the foundation, and the paperwork that goes along with ALL of it reminds me of the sad truth of Sanfilippo and that MY daughter has it. I pray about this all the time. I pray for God to show me guidance and to hear his voice as to what direction I need to go with the foundation. I feel so overwhelmed with the foundation. Honestly, I just don't know how to be a mom, a wife, and be an advocate for Liv life. The foundation takes a lot of work. The website alone gives me a stomach ache just thinking about it. I've tried and tried to teach myself how to be a web designer, graphic artiest, etc. etc. It takes HOURS on the computer, just me, trying to figure things out. OK, deep breath. As I type this, read it, re read it, I think to myself.......Kelly, it's better to do something than nothing. Stop complaining. So, here is my idea. If you've read my previous blog posts you know that something I struggle with is asking for help. I came up with this idea on one of my runs (when I come up with my BEST ideas). Form a Liv life council or some sort of board. Put it out there as a volunteer basis. Have meetings once a month or as needed. Tell people you will feed them to get them to your house. This I know I can do! People want to help, right? But what if I get no response, then what? Pray about it. I know that whatever will be will be. If God intends for me and Jake to be the soul runners of Liv life, then we will make it work. If he intends for this to grow like I envision it then it will. I feel like we (our family) is on our way to where we need to be in life. He is showing us people and places that I feel like will open many doors in our future. It is a positive and exciting place to be. More on this subject to come!

So, another reason I fell so moved to dive back into the world of Sanfilippo is because of my beautiful, intelligent, motivated best friend Stefanie Boyce. Every time I see her or talk to her I gain strength and knowledge. She is really an amazing person. She's introduced me to some other beautiful and intelligent woman that make me feel so loved and welcome. I really feel like I'm a part of something so deeply and wonderfully real. Anyway, Stef is working on her own ideas for the world of Sanfilippo. She is so inspiring and motivates me to just do it. Stef also comes to my rescue in my darkest times. She is the friend who calls and will pray with me over the phone. She, because of our situation, just gets it and understands everything I'm feeling when all I can do is cry. She and her family is such a blessing to our family. I thank God everyday for crossing our paths.

Stefanie was at my surprise 30th birthday party. Side note, my hubby is wonderful. He totally surprised me and spoiled me all day. I love you Jakey! So, another way I've been pushing Sanfilippo aside is by not renewing our MPS society membership. We've not been receiving the Courage publication, which I really do miss. By not getting this we've missed the last publication which not only donned the most beautiful Sanfillipo baby, Brooklyn Boyce, but also gave some really promising and exciting news for MPS IIIA. This hope that we hold for our children's future is what gets us through everyday. Whether you have a healthy child or a child with a special need, your desire for them is the same. You want the best for them no matter how many days they have on this earth. I strive for my children to be good, respectful and most of all happy. I want them to learn about our Savior and that our life here on earth is only the beginning. This is what I hold onto and because of that I can LIV each day to the fullest.

All of this said, like everyone I've started thinking about my New Year's resolutions. Here are a few that I've come up with so far.
1. Find the strength to continue with Liv Life and not give up.
2. Not be scared to ask for help when I really need it.
3. Renew MPS society dues.
4. Finish the things I've started (kinda goes with #1, but applies to other things.)

I have more, but I think the list could get crazy. Merry Christmas, Happy New Year to all of you. Remember the TRUE reason for the season and tell your children about it. They will thank you in the future!

God Bless

An idea

I was approached yesterday before pilates class by a friend, Ed. He is someone I've come to know through the Y and through running. He is a marathoner and someone I look up to. He came to me with a fund raiser idea for MPS. I instantly started crying and really couldn't express my feelings or words. I feel bad that I started crying like that. I'm not sure how he felt around a bumbling mess like that! I know my feelings came from loneliness, gratitude and excitement. What a mix! There are times when I feel so alone in this journey. Not only being away from family, but when it comes to the website and fund raising it can be very overwhelming. Gratitude because I was so thankful that he was thinking about Livia and MPS. Knowing that someone's wheels were turning about my child during their time was very touching. Excitement because his idea is fun and easy. All in all, it was nice of him to come to me about this. I hope my crying didn't scare him away and I hope the idea works!!! Thanks, Ed for being there and for keeping those wheel's turning!!!