AFTD's With Love Campaign 2020 ~ a photo a day for the month of February

One photo a day for the month of February

29 days to reach my fundraising goal

I have found so much hope in raising awareness and funds for research, advocacy, and ultimately a cure. I would be so honored if you would consider joining me in this campaign for hope.

“Day 1/29, AFTD’s February With Love Campaign 2020
”Music for Nuh-Nuh”
✨
Today marks the beginning of the annual AFTD With Love Campaign. I hope to share a photo a day, with 29 days to reach my fundraising goal. I have found so much hope in raising awareness and funds for research, advocacy, and ultimately a cure. I would be so honored if you would consider joining me in this campaign for hope.
✨
Thank you for finding yourself here. I am humbled to be among such a vibrant community helping to build a hopeful future for those fighting FTD.
✨
With Love,
Kim
✨✨✨✨✨”

“Day 2/29, AFTD’s February With Love Campaign 2020
✨
Little hands, with big significance, he’s my caregiving partner.
✨✨✨✨✨”

“Day 3/29, AFTD’s February With Love Campaign 2020
✨
Sometimes it’s when you least expect it that grief makes its way to the surface. A baby book about trucks. Big trucks. 20 big trucks stuck in the middle of the street. While this one has been a favorite lately, it didn’t register until this moment - this book was on the shelf before him. I remember picking it out a few years ago because at the time, trucks, and big ones to be exact, were top on the list of things that made her beam. She’d count them, “one big truck, two big trucks,” she’d go on and on. 30, 40, higher. She’d keep counting. It was one of the many phases that come and then go, another one landing in its place. But not anymore. The more he grows the more she diminishes. She’s left the counting behind, but maybe not until she knew she’d have someone very special in her place. And now he’s counting trucks for Nuh-Nuh.
✨✨✨✨✨”

“Day 4/20, AFTD’s February With Love Campaign 2020
✨
Pressing her hands against her ears, she’s hidden in her blanket. All too often this is how I find her now. With even her whole face covered. I can’t imagine. I wonder what she is thinking. Feeling. I wish I knew. I wish I knew how to help her.
✨
In he comes looking for me. I had just told him it was nap-time and I was checking on her before heading upstairs. He starts singing “night, night, Nuh-Nuh” the way I sing it to him. After a few moments she uncovers her face and says, “good what you talk.”
✨
And my heart is relieved. And ever so full.
✨✨✨✨✨
”

“Day 5/29, AFTD’s February With Love Campaign 2020
✨
“Check on Nuh-Nuh” he announces, toddling off without me. On tip toes he can barely open the door, but he’s in and climbing onto her bed. “Blankie too?” Sharing her blanket has become part of the routine.
✨✨✨✨✨”

“Day 6/29, AFTD’s February With Love Campaign 2020
✨
Tonight we were building houses with blocks and we’d say, “this is mama and dada’s house, this is Mimi’s house” and we started making houses for his little friends. Then he says, “where is Nuh-Nuh’s house?” and reaches for two purple blocks. “This is Nuh-Nuh’s house.” A full sentence (and a house) for Nuh-Nuh. 💜
✨✨✨✨✨”

“Day 7/29, AFTD’s February With Love Campaign 2020
✨
“Your legs will get heavy and tired.
Then comes a moment of feeling the wings you’ve grown, lifting.”
~ Rumi, Unfold Your Own Myth
✨
These very last lines are for all of us. My hope is that we all find these moments along this journey. Weightless among the turbulent. Expanding and thriving, finding new pieces of ourselves that we didn’t know existed.
✨
He’s leading us there. And he’s checking to see that we’re with him. He continued this pattern over and over, pausing to look to her, I think to see if she was smiling. Hoping she’d found her wings too. I wish I could say that she was, or reacting at all, but that’s this disease. Still, I have to believe she could feel it.
✨✨✨✨✨”

“Day 8/29, February AFTD’s With Love Campaign 2020
✨
I hadn’t wondered what it was like from her perspective; the photos I had covering the mantel, the walls, and strung from the pennant flags I had made. I wanted the room to be filled with life. I thought it was beautiful.
✨
But I walked into her room and found towels draped over almost all of the frames. More covering the mantel, as if no one had opened the room for years. The way you might blanket the furniture if you were about to paint; she blanketed the faces.
✨
It must have all been static. It must have been loud when I wanted to create peace. So we emptied her room. I hope it is quiet for her. I hope it is soft and light.
✨
And I hope with all my being that someday we can end FTD.
✨✨✨✨✨”

“Day 9/29, February’s AFTD’s With Love Campaign 2020
✨
Self-care on most days usually looks like a second cup of coffee. Sundays, however, I’m trying to be more intentional with finding time for something that grounds me. Everyone says we have to care for ourselves before we can care for others, and now that I’ve been more consistent with a little “me time” I really do feel it. So I thought I’d share my latest escape. I’d love to know how you self-care! What makes you feel centered and refreshed? 🍊🎨
✨✨✨✨✨”

“Day 10/29, February AFTD’s With Love Campaign 2020
✨
He asks for gloves when I change her and with hands tangled in the purple fingers, he hands me wipes, her pants, and her shirt. There’s always a few moments of sliding around in her slippers before plopping them at her feet.
✨
Now he has his very own slippers, just like Nuh-Nuh. My lil helper.
✨✨✨✨✨”

“Day 11/29, February AFTD’s With Love Campaign 2020
✨
“Oh, mama,” I must say when something like this happens, because I often hear his little voice repeat it. At least it wasn’t a candle this time. Or raw meat. Or popcorn kernels. At least I was there in time before she drank it. Then there’s a pat-pat from his little hand and I hear, “Hi, bubby,” as if to cheer me up.
✨
Thank you, my buddy. You’re helping in such a profound way, and I know Nuh-Nuh can feel it. Someday I’ll tell you all about it. And maybe by then it will already be a brighter world for FTD. We’ve got to believe it will be.
✨✨✨✨✨”

“Day 12/29, February AFTD’s With Love Campaign 2020
✨
Afternoon tea for mama. We’ve made it a ritual. She’s no longer eating, only drinking. So I want her to have a delicious break from all the boost, purées, and bone broth. She loved her tea. He picks out which tea bag and dip-dip-dips it in the water. The more puddles of water outside of the cup than in, the more sweeter the tea I think. 😉 Oh, and of course the NH maple syrup from home!
✨✨✨✨✨”

“Day 13/29 February AFTD’s With Love Campaign 2020
✨
Hearts that mama painted a few years ago. We used to paint together sometimes. She’d need help remembering what to do but once she got started her brush just flew across the paper. I miss those days. The last time we tried painting all all wanted to do was taste the paint. 😔
✨
I love how her hearts are smiling. That’s how I would paint her heart too. ♥️
✨✨✨✨✨”

“Day 14/29, February AFTD’s With Love Campaign 2020
✨
I was hoping for a different ending when he handed his valentine to her. Sadly she said, “I don’t need that.” I believe that’s her response for anything that she doesn’t recognize, which now would be a list too long to list. But she reached for it. She even held it for a second. Maybe in this very moment it came back to her. All the bins of our artwork that she saved from our childhood, even old valentines that we made her. All the valentines she made us. Maybe for just a second she knew she was getting a valentine. I really hope so. I hope she knows how much we love her. ♥️
✨✨✨✨✨”

“Day 15/29, February’s AFTD’s With Love Campaign 2020
✨
Looking out the window while the light poured in, touching them both.
✨✨✨✨✨”

“Day 16/29, February AFTD’s With Love Campaign 2020
✨
“Play for Nuh-Nuh.”
✨✨✨✨✨”

“Day 17/29, AFTD’s February With Love Campaign 2020
✨
As you may have noticed, my not-quite-two year-old has found a real passion for hats (my big brimmed hat in particular). I think he’d take a bath and sleep in it if I’d let him. So he didn’t know what to think when she picked it up. She’s never done this before and it made both of us teary. Me seeing her up out of bed for more than a quick moment, and hugging my hat so close. Meanwhile his lips were starting to tremble, afraid he wouldn’t get it back. “My hat? Nuh-Nuh? My h-a-a-a-t?” A lesson in sharing from Nuh-Nuh.
✨✨✨✨✨
”

“Day 18/29, AFTD’s February With Love Campaign 2020
✨
There was a tender period of time when they were, in many ways, existing in tandem. Their understanding, vocabulary, and even what made them smile was oddly in tune with one another. Now her persistent loss of awareness is so evident in comparison to his continuous discovery.
✨
He counted “burteen” (13) cars today. She used to count cars and report back, and if a big truck came by, well that was a cherry on top. It used to be one of our activities, among puzzles, shape sorting, coloring, anything to try to slow the progression. She hasn’t done any of that in months now.
✨
But now he’s counting and pointing out colors (he loves to tell us everything that is not “owange”). He’s learning words that I haven’t heard her say in years. I don’t know exactly when the shift was, when he inched out of that precious place they shared. Today I found myself missing it; their fragile place of togetherness. Especially for her, because if it could have lasted a bit longer maybe she would have been counting with him today.
✨✨✨✨✨”

“Day 19/29, AFTD’s February With Love Campaign 2020
✨
Just like Nuh-Nuh.
✨✨✨✨✨”

“Day 20/29, February’s AFTD’s With Love Campaign 2020
✨
“Tea for Nuh-Nuh?” he insisted, pointing to the tea box. I had forgotten afternoon tea, but he wasn’t going to end the day without it. After her cup was ready he reached for another tea bag. “Me too?” So there they sat on their very first tea date. He sipped when she did and in between filled the silence with all sorts of chatter, snippets of singing, and the occasional “Dis is goowd, Nuh-Nuh.” Tea soaked and smiling, he sat there until his cup was empty, and went to bed still smelling like apple cinnamon tea.
✨✨✨✨✨”

“Day 21/29, AFTD’s With Love 2020
✨
My little big kid insisted on picking out his clothes today (stripes for days ☺️), picking out Nuh-Nuh’s sweater, and announced “helping Mama” while sweeping me out of the way. I may be mama’s caregiver, but he sure is mine.
✨
On National Caregiver’s day I want to thank Ana, Jodie, and Gina for your tremendous help and love. You are family to us and we couldn’t do this without you.
✨✨✨✨✨”

“Day 22/29, AFTD’s With Love Campaign 2020
✨
Mama, you are just so beautiful. ♥️
✨
I’m quite sure I had this same smile, hand on my head too, when I saw that we now only have $36 left our $1,000 goal! Thank you dearly for your generous support.
✨✨✨✨✨”

“Day 23/29, February AFTD’s With Love Campaign 2020
✨
“And for boy,” she tells me, placing the cup by their picture. Sometimes she still calls him “husband,” other times “boy.” Astounding. It has been over seven years since my dad passed. If I don’t have a second cup ready for his photo, she won’t finish hers and she’ll leave it on his picture. Sometimes she’ll even say, “good if you eat.”
✨
I love watching this carousel of heart unfold. “Nuh-Nuh want smoommie?” He removes the cup from the picture and holds it out to her. “Dis is goowd,” he encourages her. It reminds me of how I do the same when he has left too much on his plate. She places the cup back on the photo, he holds it out, and she’s there to place it back. Around and around they go.
✨✨✨✨✨”

“Day 24/29, February AFTD’s With Love Campaign 2020
✨
The most interaction they’ve ever had. Just a Nuh-Nuh, with a Nuh-Nuh smile, being a Nuh-Nuh. She actually tossed it! “Hewah (here) Nuh-Nuh,” he’d say running it back to her. They had their own little rainy day frisbee game. I never would have thought to hand it to her. He never would have thought ✨not to✨.
✨
I’ve been here before, surprised by a moment of connection, and then completely recharged to find it again. It’s why I ended my 100 day series with one of my favorite Silverstein quotes, but in these past few months I think I lost that determination.
✨
So here it is again, because I have to remember what this little guy instinctly knows. We all must ~
“Listen to the mustn’ts, child. Listen to the don’ts. Listen to the shouldn’ts, the impossibles, the won’ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be.”
~ Shel Silverstein
✨✨✨✨✨”

“Day 25/29, AFTD’s February With Love Campaign 2020
✨
“Night night, Nuh-Nuh.” 🌙
✨
We are at $1,110!! 🙏 Can we get to $1,500? The AFTD’s With Love Campaign is raising funds for research, advocacy, awareness, and a cure for FTD. For ✨hope✨.
✨✨✨✨✨”

“Day 26/29, February’s AFTD’s With Love Campaign 2020
✨
“Kim is there,” she says pointing to my reflection. “So you go out.”
✨
It seems she just wanted me all to herself. 😌
✨✨✨✨✨”

“Day 27/29, AFTD’s February With Love Campaign 2020
✨
Waiting for his teammate. Waiting, waiting, waiting...
✨
“Hat?” He jolted straight up like he had just solved how to get her play, and ran to get my (well, his ☺️) hat. “It must be the missing hat,” was the cartoon bubble over his head. And I guess he was spot on. What’s a proper frisbee toss without a proper frisbee tossing hat?
✨✨✨✨✨”

“Day 28/29, AFTD’s With Love Campaign 2020
✨
His head thrown back, hat sailing away, and landing at her feet; that’s the moment she found it. Soaring joy. Warmth and light for more than just a fleeting moment. He repeated his hat number until her laughter faded. Then he slid into to peek-a-boo, all the while checking in to see if she was laughing too.
✨
Two more beautiful donations today and my heart is so full. Thank you so. One day to go! 💫 The AFTD’s With Love Campaign is raising funds for research, advocacy, awareness, and a cure for FTD. For ✨hope✨.
✨✨✨✨✨”

“Day 29/29, AFTD’s With Love Campaign 2020
✨
Kisses for Nuh-Nuh. Smiles for Henry.
✨
I couldn’t do more for you than you do for each other.
✨
I know mama would wish for a brighter path for FTD than she’s faced. She would want to make a difference. I hope by sharing a bit of our days we can make a small contribution towards a more hopeful future for FTD. I’m forever grateful for your kind words, encouragement, and your generosity. Another lovely donation today and now we are close to $1,500! Thank you all for your donations and love. 💫 ”