"When life gives you a riddle
But won't give you a clue,
And solving it yourself
Is way too hard to do,
Well you may find that the answer lies
Right in front of you."
Last November, life gave us a pretty big problem in finding out that Grace had a neurodegenerative genetic disease. While that problem sort of still seems insurmountable at times, Princess Sofia was right, the answer was right in front of us.
Grace got a Disney Junior CD for Christmas, and this catchy song keeps me singing along whether or not Grace is with me. "Friendship is the Formula" comes from the Disney Junior show Sofia the First, a princess with a big heart for friendship
"If you have something tough to do,
Just gather up a friend or two.
‘Cause friendship is the formula,
Just me, plus you, and you."
After Kyle's column ran in December, we found out just how many friends that we truly have, from Montgomery County and beyond. In the first few days after it ran, we got dozens of notes, e-mail messages and even phone calls to tell us people were praying for us and would support us every step of the way.
Grace got cards and stickers in the mail, and we got such special cards from all over the country. I have always loved getting mail, so it was so much fun to go to the mailbox each day to see what was waiting for us.
One friend made a very special gift just for me. She crocheted a prayer shawl, and wrote a note explaining that she made it with soft yarn and prayers. The note also talked about the colors she chose and what each one meant. Red is for love, courage and warmth, maroon is for bravery and strength, magenta is for spirituality, brown is for steadfastness and purple is for truth and wisdom. Every time I see it, it serves as a special reminder that so many people are praying for us.
Shortly after the first of the year, mom and dad ordered the purple "A Grace Filled Journey" prayer bracelets, and we have so enjoyed seeing the photos of people wearing them, and knowing all those people are keeping us covered in prayer.
And after showing us love with your prayers and your kindness, Montgomery County stepped up in a big way, with your donations.
After the first of the year, we joined a campaign called "ICan for INAD," started by other families whose children have been diagnosed with INAD. They may be few in numbers, but they make up for that in heart and big dreams.
We are trying to raise $150,000 over the course of the next two years to help fund a study, practically in our backyard at Washington University. Kyle and I were fortunate enough to meet the researcher in person. He shared with us how he came to study INAD, as well as his upcoming project, which he is very optimistic will help to find treatment options for INAD kids.
In less than two months, our friends and family in Montgomery County (and beyond too) have helped us to raise nearly $10,000 that will be added to the funding that other families are collecting. Talk about humbling.
As we sat discussing the study with the researcher, I don't pretend to understand much of the science he talks about, but I know that we can help raise the funds to keep it going. So many of you have already helped, and other fundraisers are in the works as well. Your generosity continues to inspire us, and together, we can!
You see, when you have something tough to do, just gather up a friend or two. Just me, plus you, and you. We thank each and everyone of you who have joined us on this "Grace Filled Journey." We couldn't do it without you!