Grapelicious Greater Love

 

Grapelicious Greater Love
Grapelicious Greater Love

Greater love has no one than this: to lay down one’s life for one’s friends. -John 15:13

How many blog posts this week will we read about love? Some of you are already groaning, I know. I am married, and am furthermore in love with my darling and goofy hubby, and even I get a little cynical around Valentine’s Day. I’m sure we could each write a treatise on our reasons for being cynical on any given topic, but today’s post is not for that.

The Bible verse typed above was spoken by Jesus to his disciples, and ultimately refers to his own sacrifice for us. But I couldn’t help thinking of it when I first saw the picture of those sweet people dressed in purple, standing on the steps of the state capitol building in Denver. I wrote in an earlier post about our daughter, Chloe, and Rett Syndrome. (Here is a link to that post: Disarming)

When my sister first found out about Chloe’s diagnosis, she wasted no time (read “within days”) contacting the local Rett Syndrome foundations and finding out what she, as the doting and most awesome of aunties, could do to help. She lives in Denver. We live in Vermont. This sucks. There is no other way I can think to say this that so fully expresses how I feel about the distance between us and our families.

Out in Colorado, it turns out there are quite a few things going on for girls with Rett and their families. This event pictured above was actually only a local part of a worldwide event that happened October 13, 2012. Sponsored by the Blue Sky Girls, and in order to raise awareness for Rett Syndrome, it was called Raise to the Top. Girls and their families gathered at buildings of high visibility and flanked by beautiful, and massive, staircases. These buildings included, along with the Capitol building in Denver, Harvard Medical Building, the New York City Tweed Courthouse, and Helsinki Lutheran Cathedral.

Staircases, according to the Blue Sky Girls website, symbolize “the strength and will that girls with Rett Syndrome have shown to keep going no matter the odds and the difficulties they face every minute of their lives.  Climbing stairs is a symbolic gesture, because climbing takes you upward and forward even if it is difficult.” Many girls with Rett cannot walk, and if they can, climbing stairs can be very tiring. For those who needed extra help, family members and local fire fighters were on hand to carry the girls up the stairs.

Oh, how I wish I could have been there to see it!

In our house that day, I so distinctly remember, Sean and I were preparing for a dinner party. I love having people over, but life just gets busy sometimes. So when our church organized a way for us to share a meal with both new and familiar faces, we signed up without hesitation. On a normal night in with friends, I usually keep the fuss to a minimum. I would much rather enjoy the company than mess with fancy food. But this felt like an opportunity to play with the party aspect a little more than usual. So I planned the meal from start to finish, appetizers to dessert. It was fun. But it was work. Add to that the cleaning of the house, and our family was in a whirlwind that day. From vacuuming to dusting, to chopping to squirting ranch dressing into individual shot glasses for a veggie dip appetizer, we were swirling ourselves into a breathless tizzy.

Late in the afternoon, Sean sat for a moment to rest. He checked his phone, because this is what we do when we sit. We check our phones.

“Allison, look at this,” he said. I was three steps from annoyed: I was busy, for Pete’s sake! But the fourth step landed me next to his chair, where he held out his phone to show me the picture posted on Facebook. The picture posted on my blog today, of my sister, my aunt, and my cousins, on the steps of the capitol, dressed in whatever purple they could gather. Purple is the color of Rett, as pink is for breast cancer.

I walked two more steps until I was sitting on the couch, holding Sean’s phone, my eyes never leaving the picture. The swirlings and whirlings of cooking and cleaning were stilled. I looked up at Sean. We had no words.

What kind of person dresses so purposefully in purple, to stand in the chill of an October day, for the love of a little girl who sits playing in her bedroom almost 2000 miles away? Greater love has no one than this: to lay down one’s life for his friends. 

After some grumbling consent, I obtained permission to post their precious faces on my blog, so I could thank them. (Thank you, you sweet, sweet people!) Since I cannot, at this moment, give them all great big hugs, I figured this was the least I could do.

Choe
Chloe

If you look, there are opportunities all around us to show our love to those we care for. February 28, two weeks after Valentine’s Day, is Rare Disease Day. We will wear purple, for Rett. Won’t you consider joining us? I’ve added some links below if you would like to know more.

International Rett Syndrome Foundation

Blue Sky Girls

Rocky Mountain Rett Association

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