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1.31.2011

waiting....


Waiting. Something I still have not settled into. I am so impatient. It will be one of many of my mountains to climb.
In 7 hours we will find out if we won the Pepsi refresh everything grant of $250,000 towards research. I have to be honest. I thought tonight was going to be date night. We had it on the calendar for a month. As I went to the bus stop this afternoon to get Jayden, thinking our 1st place pepsi spot was secure, I logged in to facebook to see a rush of panic on the news feed. 2nd and 3rd place was all I read. A pit in my stomach formed as I frantically thought of ways to secure 1st. I postponed date night and kicked it into high gear.

I called K LOVE and was on hold for 30 minutes. I shared the story with the DJ's and they said they would share. I hope they did but never heard it. I posted on their blog, facebook and sent them an e-mail.

I wrote a blog and cried out on facebook and to all my e-mail contacts. My mother-in-law, cousin and Beeba headed to the mall and met a few friends and high school students with flyers and we started going up to people to ask them to text. We were there until we got kicked out. Many of the phone stores helped us by letting us send texts from their demo phones (I think we got at least 100 votes just by doing that).

I held my baby Brooklyn and approached people, begging for votes. "Excuse me. I am not selling anything. This is Brooklyn, she is dying from a rare disorder called Sanfilippo. If you text, would you mind texting 105582 to 73774......" over and over and over. It got to the point (because mall security on their segways were stalking us) that we all split up and I was by myself getting votes. I realized I will do what I need to do to save my babies...even alone.

There were about 15 or so of us with tons of flyers (Thank you Micah and Kathrina, Jay (Michelle for watching Bonn), Sarah and Jason, Alexis, Kailey, Taylor, PJ, Micheal, Emily, Joan, Sarah Kinney) roaming the mall.

At one point, we all met in the food court. A couple of us were sharing our story to people eating. The older security man on the segway finally "caught" us and kicked us out. Micah exchanged words with him and he called for backup. :) The "backup" came, and laughed when he saw that we were no threat and left. We explained we would leave and we were not selling anything, just trying to save lives but Mr. Security wasn't having it. As this was happening, a perfect stranger overheard, and came to our defense, arguing with security for kicking us out. A perfect stranger. I was moved. She sat back down with her family and we started to pack up but I couldn't go without thanking her personally. I got down on my knees next to her table, grabbed her hand, and thanked her. The tears began to flow hard as I thanked her for coming to my defense. It meant so much. You know, one of the things that has been so hard (for me and other Sanfilippo families) is that people who say they "love" us don't show it by voting. We know because we can log in and see. It just hurts. And here, a woman who doesn't even know us is showing the love of Christ in huge ways. I refuse to focus on those few that have not voted and choose to focus on my friends and family that are, and women like this woman. This is what God is supposed to look like.

At one point, the woman hugged her son tight and I just knew we had made a difference in her life too. Another Hispanic woman approached us as we were leaving and asked if she and her family could pray for Brooklyn. We of course said YES, prayer means more than votes, and she and her family began to literally cry out to heaven on our behalf! Another perfect stranger! She was crying out to Jesus for my baby for 5 minutes!!! I KNOW God heard her and I hope that she is blessed for the blessing she gave me. So-here we are....15 deep with strangers in a food court on a Monday night, crying, praying. THAT is kingdom stuff, folks. That is the blessing of reaching out and being met in brokenness.

We split up and some groups went to walmart, jewel, target, village church, the fire station, all over Gurnee to get votes. My friends stood outside in the snow, stepped outside their schedules and comfort zones, and got thousands of votes. One student, Micheal Roemer, got over 1200 votes today!!! That is one person. A 18 year old!

In my car on my way to Starbucks...I hear a Sanfilippo dad on K LOVE sharing about voting and Sanfilippo! My heart knew that was a confirmation that we were not alone! A 16 year old sibling even got her brother on a billboard in times square with the text info! It is AMAZING what ONE person can do...but even more AMAZING it is when a bunch of ones become a group!

I even went to Boarders and Starbucks myself (with Brooklyn) and begged strangers to vote...and all of them did AND took the time by showing interest in our story to ask questions! They shared on facebook and the coffee girl at Boarders even cried! Most people, generally are good and that makes me hopeful.

We celebrated by meeting Jut and Jayden at Wendy's. It was so emotionally draining. This entire MONTH was draining. We know God has placed us on hill to shine, but it is so hard to co-exist in heaven and earth. I want so much to be with my children here on earth forever. I dread their funerals. Every day I have to "promote" Sanfilippo, is another day I acknowledge their funeral day. I hate that. I know they will be restored, cure or not, fully in heaven but its the waiting....

HELP! we keep moving from 1st to 2nd to 3rd!


Voting ends at midnight!

this is your final reminder to vote. please text 105582 to 73774. log on to www.refresheverything.com/curesanfilippo and vote with facebook (the box on the left) or all your different e-mails (on the right). Sign out and sign back in each time. Today is the last day to vote and it keeps changing moment by moment. We have even been in third place! That means no money! HELP and forward this to all your friends! SAVE my children and many others!
Thank you!

Save these children with a simple vote.

The Boyce family, Beach Park, IL, received news no parent wants to hear Oct 09. Both children, Jayden, 4, and Brooklyn, 1, will die from a rare genetic disorder in their teen years, called Sanfilippo. Sanfilippo (MPSIIIA) currently has no treatment or cure. Their little bodies can’t break down hephran sulphate, a sugar the body naturally makes and stores primarily in the central nervous system and brain. Over time, their bodies loose all function and developmentally they never progress past the age of two. Because of the rare nature of the disease, effecting 1 in 70,000 children, it is not profitable for pharmaceutical companies to invest in research. It becomes the sole responsibility of loved ones to raise money for research. However, the Boyce’s are part of a parent organization, Team Sanfilippo Foundation, who is currently in the running for a $250,000 grant through the Pepsi Refresh Project to fund gene therapy research. There are three ways to vote and you can help the family by simply casting votes and telling friends to do the same.

Text 105582 to the number 73774.

Go to www.refresheverything.com/curesanfilippo .

Create a profile and vote with all e-mail and facebook accounts you have.

You can also search refresh everything on facebook.

Voting ends January 31, at midnight.

to India we go...a preview

here is a video link to see a group (from the same church) going to the same places that Jut and the guys will be going

http://www.youtube.com/watch?v=icQlE7g1xXc

http://www.youtube.com/watch?v=luzbgGqS_Pc

1.27.2011

Angel Bee part 2...and a mini van




Angel Bee ...part 2



Tonight, the four of us attended another basketball game to solicit text votes from the varsity girls audience. The people at Zion are awesome. We LOVE Mr. Bible, Mrs. Clark, and all the wonderful cheerleaders that helped us during half time and gave us permission to be there. So you kinda need to read the blog entry Angel Bee to understand....but I wanted to add to that moment. Tonight, the gracious cheerleaders invited Brooklyn to "bee" a cheerleader with them. She sat with them during the half time sparkettes routine and even joined them on the sidelines as an honorary cheerleader. She loved it and even tried to clap and dance a bit. I was very moved that they took to her so easily. Kinda hard not to with those curls :) Anyway, we had a great time and got a lot more votes so that was awesome. We will be with our "own" high schoolers this weekend at winterXtreme so we will be unable to attend the Saturday afternoon games but Jut and the kids may venture out to the evening games at 6 and 7 to go out during half time. even if we are not there, they are going to announce it and they hung the posters in the gym. Also, a lovely security lady I spoke with is taking flyers and announcing it at her church in North Chicago and telling all her family to text! Thank you, Zion family!

See Brooklyn LIVE!!!
http://www.youtube.com/watch?v=ahIHFiIVlU4

A mini Van

We were a little late to the game because Jut was selling a mini van that Uncle Dan and Aunt Jill donated to their trip to India. We are choosing to believe this was a God thing. A man saw the van on craigslist. He called Jut and was trying to talk down the price. Jut was getting an uneasy feeling about the guy becuase his offer kept getting lower and lower. They settled on a price and Jut asked for it in cash. He showed up in a broken down van with his wife and 3 kids. He didn't have any idea the money was going to India, or that Jut was a Christian. Basically, Jut told him what was wrong with the van, and they took it for a test drive. The guy looked at Jut and said that he didn't know much about cars and would just be trusting Jut. Good thing Jut is as honest as they come. Long story short, the guy claimed to be down and out, had 3 kids and just needed this van to get back on his feet. He was a Christian, and had been praying and this van is just the thing he needed to help climb out of this hole. He had all the cash he had and was still $100 short. Jut had a change of heart and decided, as this man repeated, I'll send you the rest next week, I'll send the rest I promise. He had given all his money away and asked Jut for one more favor, $20 to get gas to get back home, so Jut gave it to him.




We don't know if this was a good line or not...but I am learning it is not about the character of the person you are giving to or what they do with the gift you gave that matters. What matters most to God was if you were obedient and gave. Hard lesson to learn, but Jut is a great person to learn generosity and obedience from.

What's gene therapy?

Reposting this from our Sanfilippo Family:

A lot of people have been asking me what this Pepsi money means. What is a gene therapy and how is it applied. Through a friend of a friend, here is the explination.The basic principle of gene therapy is to introduce a corrected gene to the body so it is taken up & begins to work properly. In the case of Sanfilippo Syndrome the gene that is involved in specific enzyme production for each type (A, B, etc.) is damaged. The corrected gene is put into a “vector”, or harmless virus, which is introduced to the body. This allows the gene to get into the cells where it can begin to function & produce the missing or broken enzyme. Unlike ERT (enzyme replacement) & drug therapy which requires lifelong dosing, gene therapy is done once – if successful the body takes over & reproduces the corrected gene.Dr. Fu tested her gene therapy on Sanfilippo Type B mice using a single IV injection. Her research is so significant because the AAV9 vector she used passes through the Blood Brain Barrier & the corrected gene is widely dispersed throughout the entire body. Dr. Fu was not only able to extend the lifespan of the Type B mouse colony, but more importantly showed clearance of the storage caused by Sanfilippo & improvement of cognitive & motor functions.Based on her results the next step is human clinical trials. It will take $1,200,000 to do the necessary toxicology, trial design, vector production & FDA submission to get there. Ben’s Dream – the Sanfilippo Research Foundation - has already granted Dr. Fu $200.000 to start the process. If won, the Pepsi Refresh grant will provide another $250,000 toward that goal – focused on vector testing & production.Dr. Fu believes that she can apply the same technique to Type A. A Life for Elisa – the Sanfilippo Children’s Research Foundation - has granted $160,000 to replicate her Type B results on Type A. This money is outside of the dollars needed to bring Dr. Fu's original research to human clinical trial.Even with the Pepsi Refresh grant we still need $750,000 to get Type B to clinical trial. If we are unsuccessful, it will not be possible to advance A or any other type beyond mouse research. We need to work together to bring Dr. Fu's original research to human clinical trial as soon as possible.This, to me, sounds like a lot of money and almost unreachable. But is it???? We have so many people that are on our side to fight this fight with us. I would think that if we all rallied together, raising this money would be simple. If everyone in the state of Illinois donated only $1, that would be $12 million dollars to save a lot of childrens lives. (excuse my french!!!) Time IS NOT on our side. Everyday means a little more build up (GAGs) which means, well, I don't want to think about what that means. Let's put our heads together and let's raise this money. Come on Illinois, make a difference!!!!

1.26.2011

TO INDIA WE GO


Justin and team leave for India in less than a month and the trip is fully funded! They would like to personally thank you for all your support and any additional funds they receive will go directly to help free women enslaved in prostitution and building water wells.

Please see the link below for a video from the guys! http://toindiawego.com/


1.25.2011

Angel Bee


Tonight we went to a Zion Benton High School Varsity basketball game. It was sort of last minute but my father-in-law has been extremely proactive in the last week to promote the Pepsi voting project. He has gotten the text number (text 105582 to 73774) on marquees around town and pulled some strings at Zion and we quickly became tonight's half time show.


The people at Zion are awesome. They are like family to us. We have so many people that have been spreading the word it is amazing. We also have a huge texting base with the high schoolers. One girl told me that she takes her parent's phones and has programmed a daily text reminder! They also are wearing t-shirts and bracelets to promote voting. But even more special to me personally, I had a "moment".


You know, one of those moments in your life you will never forget. It was simple but couldn't have been more special. My sweet baby Brooklyn was a bee this October for Halloween so the costume still fit and the Z-Bees needed a mascot. I got her all dressed up and we headed to the game. We all had purple on with my little bee in yellow and black, with pretty purple beads on. I made the bow with antennas.


At half time, we proceeded onto the side of the court. As I tried to get signs for everyone, t-shirts to throw out for the cheerleaders, and a big banner, Brooklyn was wiggly. I fumbled and decided I would put her down. At this time, the announcer began reading about texting and voting, explaining a bit about their diagnosis. Our family held signs with the number on it. And as I was taking in the moment, I watched my little bee, fearless, walk to the center of the gym. Hundreds of people in unison "awwwwed" and this little, innocent, bee in the center of the gym smiling and hamming it up. She stayed there and danced around, glowing. I didn't want the moment to end. There was not an eye in the place that wasn't on Brooklyn and she loved it. The announcer ended and people texted. But in that "moment" time stopped.


As a mother, one of the hardest things to let go of were dreams (or expectations) that I had for my children. They were worldly, and I have found a place, for me personally, that I know they were not right to have in the first place. I dreamt she would get married and have kids, go to prom and drive a car. I had dreams that she would get good grades and have friends. I dreamt we would laugh and argue together as she made her journey through life. The other secret dream I had was that she would wear a uniform and be a dancer or cheerleader. Silly now reading my dreams. None of which had any eternal value. At all. So the lesson I now know is that stuff really doesn't matter. REALLY.


My dreams look a bit different now. I want most of all for Brooklyn to feel loved and accepted-which is really the motivation behind all my previous dreams, but it just looks different. Way different. I feel like in that moment tonight she was shining. She was showing how beautiful SHE is. She had a moment in the spotlight. No one making fun of her. Everyone loving her innocence and her basking unashamed at who she is. I guess, in that same gym in 15 years, she may not get that moment to fly in a cheerleading routine, or take the floor for her half time dance. She may be on the side, even getting laughs or stares. But not tonight.


I was proud. I was happy. Happy that in THIS moment, she was shining and for all the right reasons. Not a selfish bone in that little body. Talk about crowd participation. Talk about joy.
A beautiful soul from heaven. Both of my children have not be poisoned by this world in many ways. They are the blessed ones. They will never be a part of this world and for that I am grateful.


Hebrews 13:2 talks about entertaining angels and I am beginning to think that I am raising 2.


1 Keep on loving each other as brothers and sisters.[a] 2 Don’t forget to show hospitality to strangers, for some who have done this have entertained angels without realizing it! 3 Remember those in prison, as if you were there yourself. Remember also those being mistreated, as if you felt their pain in your own bodies. HEBREWS 13:1-3 NLT










1.21.2011

The Habel Girls

Stephanie and Kaitlyn Habel have stolen my heart. Two Junior High girls have done more to raise awareness than many people will do in their lifetime. The apple doesn't fall far from the tree...they come by it fair with a long line of givers in their family tree.

They vote, they decorate their school bags and t-shirts with Sanfilippo promotional things, they are at all the events, they dye their hair purple, but the biggest thing they do is watch our kids, not once, but twice a week! They are simply amazing young women....beautiful inside and out! Thank you girls! We love you!

1.19.2011

PRESS RELEASE


FOR IMMEDIATE RELEASE
Jan 22-Jan 31


Save a child’s life with a simple vote.

The Boyce family, Beach Park, IL, received news no parent wants to hear Oct 09. Both children, Jayden, 4, and Brooklyn, 1, will die from a rare genetic disorder in their teen years, called Sanfilippo. Sanfilippo (MPSIIIA) currently has no treatment or cure. Their little bodies can’t break down hephran sulphate, a sugar the body naturally makes and stores primarily in the central nervous system and brain. Over time, their bodies loose all function and developmentally they never progress past the age of two. Because of the rare nature of the disease, effecting 1 in 70,000 children, it is not profitable for pharmaceutical companies to invest in research. It becomes the sole responsibility of loved ones to raise money for research. However, the Boyce’s are part of a parent organization, Team Sanfilippo Foundation, who is currently in the running for a $250,000 grant through the Pepsi Refresh Project to fund gene therapy research.

There are three ways to vote and you can help the family by simply casting votes and telling friends to do the same.

Text 105582 to the number 73774.

Go to www.refresheverything.com/curesanfilippo . Create a profile and vote with all e-mail and facebook accounts you have.

You can also search refresh everything on facebook.

Voting ends January 31, at midnight. To learn more about the Boyce family, visit http://www.buildwiththeboyces.com/


1.13.2011

My Gentle Giant


I have realized a bit-why I have been "struggling". I think part of it has been my narrative-writing and sharing my life story with a group of people, and...the Pepsi voting. It is normal for me to sort of emotionally "crash" after an event. I mean, I am so overwhelmed by people's love and gratitude. God wired me to handle things differently. I am fine at the event and have no problem sharing our story. In fact, I like it. I like sharing about Jayden and Brooklyn like any other proud parent and I like people being educated about Sanfilippo and how they can help. It makes me feel like a good mom to share and I love people wanting to know. But, a few days later the reality of what Sanfilippo means for my babies hits me. I wasn't just educating people or telling wonderful stories about my children, I was describing how they will die. How they will become mentally absent. How they will need feeding tubes and I will be feeding my 10 year old, baby food and changing his diaper. My Jayden. My Brooklyn. When all is said and done. I go home to Sanfilippo and the reality that this deadly, silent intruder is still in the corner waiting to take my babies. MY babies.

Events thrust us into the spotlight. People's status cries out for our kids. I see my face as someones profile pic. I see pictures of other Sanfilippo families, some in hospitals, some of children that have passed....It is so hard to look sanfilippo in the eye for a night, let alone exist in it for a month straight. I am sun burned a bit. Don't get me wrong. I want all this. VOTE VOTE VOTE! keep my pictures out there and keep updating your status and tell your friends. It is possible that with your vote, a treatment or cure could come in time for my children! Whoo Hoo!

But-it is living in these two emotional worlds that is hard. I have been trying for days to say something profound so I can write it on my facebook and it would cause thousands to repost and tell everyone................but I guess I am not that sly!

But today, Jayden did something profound that speaks louder than words. Here is what soul we are fighting for. A soul that we want around longer to bless this world. The soul of my baby boy.
Every day, Jayden gets a notebook home with the teacher's report about his day. This is very helpful because Jayden can't communicate about his day beyond, "my dad". :) Here is what his notebook said today:

I heard a story about TWINKLE TWINKLE LITTLE STAR

I learned about PAINT AND GLITTERED A STAR

My teacher was so proud of me for GETTING MY OWN SNACK AND DIPPING MY PIZZA IN RANCH

I played with CARS, BLOCKS, KITCHEN, SNOW (IN THE CLASSROOM) and LOTS OF FRIENDS TODAY :)

Today was special because I TOOK CARE OF A SAD FRIEND

WHEN A FRIEND WAS CRYING JAYDEN WENT UP TO HIM, TOUCHED HIS HEAD AND WAS TALKING TO HIM. HE SAT DOWN IN FRONT AND WAS TALKING :)

JAYDEN WAS DANCING AND SINGING.

Does it get any better than that?!

Jayden- Mommy loves your gentle soul and your freight train body, Big man! Don't ever loose that, buddy!

1.12.2011

Finding Beauty Amidst Brokenness

I found this and thought I would share


Today’s devotional: finding beauty amidst brokenness
Can beauty come out of brokenness? When you or a loved one is reeling from an illness, injury, or a personal loss, it feels difficult (or even offensive) to talk about finding beauty in the midst of pain. But many people and events in the Bible illustrate God’s startling ability to bring out moments of grace and beauty out of even the most wrenching despair. In this Slice of Infinity devotional, Jill Carattini writes:
Beauty in brokenness? Without glorifying suffering, there is an unexpected beauty that can shine through stories of struggle. One friend is a paraplegic broken in the use of her body, and yet she has a beautiful spirit. Not limited by her brokenness, she uses her own difficulties to help others, and teach others about true ability and disability. Tony Snow, former White House Press Secretary, considered his cancer a “calling” and for an article written in Christianity Today said, “We are fallen. We are imperfect. Our bodies give out. But despite this—because of it—God offers the possibility of salvation and grace.”(1) That possibility of salvation and grace is beauty in brokenness.
Somehow, uniquely, God desires to use those difficult moments of our lives to bring forth something extraordinarily beautiful. Even the natural creation attests to this truth. In fall, we marvel at the gorgeous, lush colors of burnt amber, burnished orange, brilliant red, and bright yellow leaves, even as that beauty belies the slow and gradual death of those leaves. Winter buries those leaves under the cold, dark blanket of snow and frost. And yet, death brings forth life. Spring bursts forth year after year with jonquils, iris, lilies, and all the beautiful pastels of new life.
Carattini points to the Israelite king David’s well-documented despair and suffering as an example of pain from which God brought something beautiful.
What about you? Are you struggling to keep afloat amidst pain, loss, or other setbacks? The closing words of this devotional challenge you to put your hope in Christ:
Today, if you are experiencing hardship, difficulty or personal darkness, seek the light and beauty of Christ, for he longs to be present to you, to give you a garland of beauty instead of ashes, to call you by name, and to bring forth treasures of darkness. He is there in the brokenness with you.

1.05.2011

Conditional Love...raw and uncut

It sneaks up on me. I am going along minding my own business, and WHAM! The world creeps in-I am angry. I think that I am managing, that I am doing ok. And then, a thought, a simple crack in the foundation and the dam collapses. I am trying, but some days, when I am least prepared, it comes. What, might you say?

Doubt. Doubt that God really loves me. Even reading that makes me uncomfortable. See, selfishness and pride are two of my biggest struggles. I have existed most of my life looking out for number one. In fact, I would say that it has been encouraged, even taught to me much of my life. (I am really feeling vunerable as I type this for some reason but it is on my heart). I am only recently learning what love "really" is. I can honestly say I don't know if I have loved anyone or anything...and i don't even know what love even feels or looks like. I know I have given and received levels of love. Like, I love J and B, but unconditionally is a different story.
Sure, I am and have been loved by others. Other people, especially Jut, are good a loving me. But, I don't know what it feels like for me to actually unconditionally love. If I am completely honest, I love conditionally. It has always been about me underneath. Yuck.

I mean, what am I getting out of this relationship? What do I have to do to get what I want? Or, I will sacrifice only when there is a payout for me. Even with my children. I had children not so I could love them and let them be who God wanted them to be. I had plans. I am disappointed God chose this path for them. I wanted children so I could say I was a mother. Don't get me wrong. I LOVE my husband and kids. I just don't think I LOVE them to the degree that I am called to love. Unconditional, sacrifical love. Like loving Jayden when he is hitting me. Loving Brooklyn when she is kicking me. Loving Jut when he is asking me dumb questions.

Part of me is so angry that I am still changing diapers and for decades, I still may. It makes me angry that for as long as I have children, they will be dependant on me. What I would give to have my child wipe their own butt, feed themselves completely, get dressed independantly, and still exist in me-ville. I want to sit on the couch and watch TV when my kids are playing with their friends. I can't. Sanfilippo or better yet, God is forcing me to look at my motivations at EVERYTHING and I am ashmed to admitt I don't like a lot about who I am. (Actually-God is refining that specific desire to appreciate being involved :)

I even hate to admit this, but without being careful, even my children's circumstance can be a platform for me to endulge in...me. I mean, I can throw a mean pity party and tell you how bad my life sucks and turn this into being about me. But, it is not. My life is about God's story and I am not just "saying" that. I want that to be true. Desperately.

I want to learn how to love. I want my life to totally be a sacrifice. I don't even know where to begin. I see it in others so naturally...like Jut. How can he give so much of himself to me and the kids and want nothing in return? How can he wake up countless times a night and still get up early with the kids, letting me sleep, and not hate me? I don't get it.

Part of all this introspection comes from writing my narrative. It is a 45 minute/9 page single spaced, story of my life. I was in VP3 before and I know what this is all about. I warned my group this year to beware of the stuff that is stirred as you write it. Areas of your life you have to look at, admit are a part of you, and tell people is not fun. To tear off scabs and cut open scars, standing naked for all to see, is not comfortable. And, when you let God in to light up the dark areas, you have to look and deal with the parts of yourself that you don't want to see.

For me, it is admitting I suck at real love. I have never really known how to be both independant and trusting. I have been hurt a lot by others in my past. I have learned how to fight and hurt people with words. I don't know how to say sorry. I don't know how to sacrifice. I don't know how to live like Jesus. I don't like the charge Jesus gives for us to be servants. The last will be first. I don't like that. It goes against my very grain. I want to be first, or at least better than the next guy.

Which brings me back to God. I have come to a place in my walk where I want to be obedient. I want to do things for God because He is God and I believe Him. Where I struggle is believing that He loves me. I mean He says He would sacrifice nations and people for me. I know God is good, but my life doesn't "feel" good. He has given permission for Satan to sift me like wheat! Sanfilippo, the daily life of it, doesn't "feel" loving. What has He sacrificed on my behalf? His son? I am forced to sacrifice my son and daughter. Every day doesn't "feel" like a gift. He wants me to be obedient, but he also wants me to love Him. Not because I have to, but because I want to. Even exposing my thoughts to the light seems like blasphemy!

I am just wrestling. I guess this all leads me to a place of brokenness. A place of need. A place that says God, forgive me. Teach me how to love you and love others like Jesus. I don't know how. Forgive me for putting my will above yours. My needs above others. Gently help me die to myself and embrace your way because I feel fragile and broken. I want that desperately. I want to find your joy, your peace, your rest. Mine just doesn't compare. I want to love well. I want to feel love from you, Lord. I want to know that Your will is loving. I want to not waiver in my thoughts about you. I want to be a Christian, but in spite of that, I want to be honest. I want to trust all of Your Word. Show me how Psalm 91 is true in my life. Be my shelter. I know you are God. I want to feel it. Amen

1.03.2011

VOTE NOW!!!!


Save our children with a simple vote.

Team Sanfilippo, a group of parents who are committed to finding a cure for this horrible disease, is in the running for a $250,000 grant from Pepsi. For the entire month of January, people can vote for their favorite projects. The top finishers win the money. We want to use the money to fund a researcher at OSU, who is working on finding a treatment using Gene Therapy.


We need VOTES.

You can vote 3 ways - text, email and via facebook - each day.

I know it is a lot to ask, but if all of my facebook friends and blog readers vote, it gets us that much closer to a cure. Do it in honor of Jayden and Brooklyn. Ask your friends and family to participate. Share the links on facebook or your blog.

Here are the details for voting:

1. TEXT to contact “73774” (it stands for Pepsi) the message “105582”
2. ONLINE Vote at http://www.refresheverything.com/curesanfilippo with every valid email account you have (work, personal, yahoo, hotmail, gmail, etc.) After you vote, click the Facebook icon on lower right to share our voting link with everyone on your FB. Remember, the sound of the Pepsi can opening verifies you are now logged in. To cast your vote, you must click the ‘vote for this idea’ button again.
3. ONLINE VIA FACEBOOK You can upload a Pepsi application that lets you and your friends vote from your FB page. http://apps.facebook.com/pepsirefresh/idea Or, click on a
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