My Very Own Rare

Something has been walking in our yard. It seems to be a timid and indecisive creature, for the footprints in the snow go a few feet into our yard before turning at an angle and then heading back out to the woods again.

When we were first looking for a house here in Vermont, I longed for a place with s p a c e. I wanted to wake up in the morning and see a creature nosing its way through my space. I imagined deer, maybe a moose. I would have been delighted to glimpse even a bunny.

The house we landed in has some amount of space. We are bordered by woods instead of fences, but the proximity to civilization seems to discourage all but the bravest of skunks, who has made himself a home under our shed. I have never seen the skunk, though I have smelled him. Our dog, Domino, has tried to invite the skunk out to play, and was rebuffed in the most offensive of ways.

But I still look for creatures. When the motion sensor light outside of our bedroom window lights up, I sometimes spring out of bed, fumble for my glasses, and look. And each time I’ve done that, I have seen nothing.

So when I saw the tracks in the snow behind our house, too deep for a squirrel, to wide apart for a stray cat (and single file, so…deer?) my hope for a little astonishment at what the nature behind my house could offer was piqued.

I’ve been watching. I have seen new lines of tracks added, always a few feet into our yard, before turning back into the woods.

I have begun to look at the tracks with the same wonder I would have given whatever mysterious creature has made them.

Last week the forecast was calling for snow, enough snow for a snow day, enough snow to cover the tracks I had been watching. Before the flakes began to fall, I took my camera out and took some shots. I knew the tracks would be gone by morning. So I snapped and snapped, playing with settings on my camera, never fully satisfied with the shots, but still, now I have evidence of a possibility, a hope, I had long since set aside.

When Chloe started school this year, we knew she would love it. She loves noise, kids, and chaos. But we didn’t know just how well she would do.

Chloe has Rett Syndrome. Rett Syndrome is absolutely one of things that makes her her, but it limits her in many ways. She started school on her fifth birthday. At that time, she was learning to use her walker effectively, but in her cleverness could figure out every trick we threw her way to get her to stand independently. We knew she could walk on her own, but she did not believe us. She still does not talk.

Since she has started school, we have received dozens of notes sent home telling us that Chloe had not only stood on her own, but had walked as well. The latest informed us that she walked the perimeter of the cafeteria on her own with only a couple of breaks.

The whole school knows. The whole school cheers her on.

I fill up inside with things I can barely name. Gratitude– to teachers and aides and friends and therapists. Awe– because up until now I did not even know what the sight of my daughter walking looked like.

There is a small part of me, though, a drop of vinegar in my otherwise clear drink of joy, that holds back.

Because with Rett, it could all disappear. One by one, each skill we exult over, could be lost. Like a new love, the elation is dizzying and heady, but I hold back, just a bit, because I know the reality.

Still, this mother’s love runs deep, and I cannot stop myself from taking picture after picture, and video after video, and up until now I have never ever thanked God for my phone that let me capture my sweet girl walking through Toy ‘R’ Us aisles, letting her feet take her right to the toys she wanted to see. (Thank you, Lord, for that technology.)

There was a time even the slightest step from Chloe was rare. Her steps are more frequent now, but I am still snapping pictures, my breath caught right in my throat, the same as when we first were able to get her just to stand on her own. And we would count as she stood.

Five seconds.

Ten seconds.

One minute!

Then we would count her steps.

One step! 

Sean would call to me from the living room, and I could never get there fast enough.

Two steps! 

I will never forget the day I picked her up from preschool and she walked the two steps right out of her walker to greet me with a hug.

Twenty steps!

Until the steps became feet, and the feet became yards, and the yards became laps around the gym.

Chloe is our very own rare. But how rare is it for a child to dig so deep into you that she steals your worries and what-ifs away with a smile, with a hug so tight you forget to hold back, hold it together, hold anything but this tiny girl who uses your shoulder like a hankie as she burrows her head into your chest? What is rare about this strange heartache that comes with being a parent?

I will get out my camera.

I will rejoice over every step, even if the snow comes tomorrow and whisks them away.

On Friday, February 28, the world will bring attention to rare diseases on Rare Disease Day. Rett Syndrome is not the only rarity in the world, but it is the one that has touched us. The color for Rett is purple, and we will be dressed in purple to show Chloe and all the girls with Rett that we love them, and support them. Dig in your closet and find something purple to wear with us! 

You can find more about Rett Syndrome and Rare Disease Day at these websites: International Rett Syndrome FoundationRett Syndrome Research Trust, Rare Disease Day

And for more about Chloe and what our rare means to us, see: Disarming, Grapelicious Greater Love, Super Sister, and Fits and Starts, and Someday, Nothing to Prove



6 thoughts on “My Very Own Rare”

  1. Another beautiful post. I rejoice with you at Chloe’s progress. She shows her love tot you in so many wonderful ways. Cherish these days.

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