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....