Turning Six Thousand is lighting the candles on your 60th birthday and announcing with joy that you are now six thousand years old. Turning Six Thousand is dancing in six thousand memories, spinning them around, upside down, backwards, and inside out, until one of them falls into place. Turning Six Thousand is ending every day with, "have all your good for you." Turning Six Thousand is hoping to raise awareness and spread hope by sharing bits of our story as we journey through Frontotemporal Degeneration with mama, as a new mama myself. 

Some nights not even the moon can convince her that it is night. So we wake up the kitchen with smells of warming her blueberry purée. Lunch and dinner are most likely to come too, along with a few Father Time tricks to speed along the seconds and hopefully land us back into bed before morning. Unless the sun rises again in our little corner of the universe, in which we start a third day. These nights are long, but these seconds, how they race by.

Twice she seemed to understand that I was pregnant. The first time she said, “I’m sorry I won’t be able to talk to it much.” The second time was when I was rubbing her hand over my moving belly and she asked, “Did he ever see you?” We wanted to be surprised, we didn’t know if we were having a boy or girl. But in that moment I thought, she knows.  And then we met our son on my birthday, the very same day that she had me. At first she didn't see him. Then after a few weeks she started bouncing up and down to his cries, as if she was dancing to the the next song playing. Now she says, “You’re so good,” to him almost every day. You never know what each second will bring, so keep climbing to the next. That’s what she is teaching me. 

Frontotemporal Degeneration (FTD or Picks disease) continues to turn the clock backward, leaving her more and more like a child, and me, her mother. We count trucks when we are in the car. “One big truck,” she says. “Two big trucks!” Counting trucks is sometimes when she seems the happiest,  the most alive. 

For years we were grasping for answers until she was diagnosed at the age of 57, my senior year of college. Her questions were morphing, along with her facial expressions, the color in her voice, and even her eyes. Her questions used to spark conversation: “How many moons are there America?” Now, at 63, she has trouble finding the words to ask. Now, this our sixth year on this caregiving journey. Now, she fights me, trying to eat popcorn kernels for dinner. Now, she can’t be left alone. I fear the day her questions end. So I fight for her. I know with every truck that she counts, that we are winning.

100 days from December 1st, our little guy will have taken his first trip around the sun. Last year my goal was 100 (+) one second video clips of my days with mama while waiting on baby. This year I am capturing these split second moments with my camera  ~ the messy, the magical, and all that’s in between.

 Here are a few sneak peaks of our 100 day project. If you would like to see the whole project, please visit my blog ~ www.turningsixthousand.com

• d a y • e l e v e n • of 100 •

“And you’re so good with Kim.”

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• day • t w e n t y ~ n i n e • of 100 •

Just a few pages ago, every word is crisply circled. Not a single word is left to be found. Not one line out of place. A daily routine that she has perfected, even though the meaning behind the words is missing. 

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Today’s has letters circled - an “X,” and “C,” and, “TY.”  A few words found. Most untouched. 

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And then she has circled, “HOPES.”

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There it is. There she is. Glimmering through. And you know, maybe this word hasn’t lost its meaning. Maybe it is still there. I have to believe it is. After all, Emily Dickinson says so.

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Hope is the thing with feathers -

That perches in the soul -

And sings the tune without the words -

And never stops - at all - 

~ Emily Dickinson 

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• day • t h i r t y ~ t h r e e • of 100 •

“Is that your little boy?” she asks.

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"In order for the light to shine so brightly, the darkness must be present." ~ Francis Bacon

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Her light shines ever so ✨bright. ✨ These patches come and they go...

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And tomorrow is a ☀️ new ☀️ day. 

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• day • f o r t y ~ e i g h t • of 100 •

“It’s not what you look at that matters, it’s what you see.”
~ Henry David Thoreau

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The way he looks at her. Just love. He doesn’t know what used to be. It’s not the “long goodbye” for him. It’s just hello. 

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• day • f i f t y ~ t w o • of 100 •

And Kim, I never wanted that Picks disease.

Oh Mama. Can I give you a hug?

I don’t know what that is. No.

It’s how you show someone you love them.

Well I don’t need it.

Can I show you? This is a hug. Now you can hug me.

Oh you want me to put it on you?

I was folding laundry, she takes the tank top from my hands and puts it on me, over my shirt.

Is that what you were thinking?

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Layers of warmth. That’s exactly what I was thinking mama. That is a hug after all. 

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“Memories you've shed, Gone for good you feared

They're all around you still, Though they've disappeared

Nothing's really left, Or lost without a trace

Nothing's gone forever, Only out of place” 

~ The Place Where Lost Things Go, 

Mary Poppins Returns

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• day • f i f t y ~ t h r e e • of 100 •

“The camera is an instrument that teaches people how to see without a camera.” ~ Dorothea Lange ❤️

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• day • f i f t y ~ e i g h t • of 100 •

Springtime peaking through.

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What’s the name of what you got me? 

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A flower. 

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Oh. A flower. 

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This was when she filled the days with questions. I didn’t know then that there would come a time when I would wish for just one. 

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I think our little purple flower may be a little too little to catch her eye. We have some planting to do, my sweet boy. With a little sun, a little rain, and a lot of love, maybe we’ll sprout a few curiosities too.

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• day • s i x t y ~ t h r e e • of 100

They are so easy to miss, these full hearted split seconds. In our little corner of the universe, it’s where time stands still.

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• day • s i x t y ~ f i v e • of 100

And another ♥️. She is so full of  h e a r t.

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Today, I am thinking about ♥️-ful days ahead for those fighting FTD. One that takes a different road after diagnosis; where treatment is a possibility, and the words, “irreversible” and “there is nothing we can do,” are never spoken. Where post-it notes of, “can I have a brain transplant?” aren’t tucked away. Where memories are kept safe, and faces never blurred.  Where a mother doesn’t have to keep drifting away, even while her daughter is holding on so tight. I know it will be different someday. I’m sure of it. And I want to fight for that mother and daughter. 

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“I dwell in possibility.” ~ Emily Dickinson

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Thank you for taking a moment out of your day to follow these 100 days. I am beyond touched by your support. If you would like to join me in donating to the With Love Campaign for research, advocacy, awareness, and support, please follow the link in my bio. Every bit goes such a long way. Please share with anyone who may find it meaningful. 

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Thank you with love, 

Kim

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Thank you for finding yourself here. I am humbled to be among such a vibrant community giving a voice to our loved ones; celebrating our joys, sharing love, and helping to build a hopeful future for those fighting FTD.

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I chose to support AFTD's With Love 2019 campaign because I love someone with FTD. Will you choose to support me? Please consider making a tax-deductible donation to my fundraiser, the process is fast, easy and secure. Thank you in advance for your support and please share my page with your contacts via email, social media and/or text message.

About FTD: Frontotemporal degeneration (FTD) is the most common form of dementia for people under the age of 60. It strikes in the prime of life, gradually eroding an individual’s personality: their ability to speak, make sound decisions, control their movements, behave within social norms and relate to those they love. FTD devastates familial relationships, finances and even the health of family caregivers themselves. Currently there are no approved treatments, and most providers lack knowledge of appropriate care. Average life expectancy is 7-13 years after the start of symptoms.