The Johnson Blog: November 2019

I was about to head out the door for the day, when I thought it seemed odd that my jacket was so short. It then dawned on me that it was actually CASHEL'S jacket. So two things: 1) I'm getting small enough to fit into his stuff, which is crazy, but also, 2) He's such a big kid now that his jackets fit me. Both are mind-boggling to me right now. He's 7.

After 15 years of the same table, dwindling number of still functional chairs, I sold it. The buyers showed up just a few hours before our new table and chairs arrived, but it looked pretty darn empty when the table and chairs and china cabinet were all gone.

The things that set me off on an emotional rollercoaster each day are so random. Take this stack of leftovers, for instance.
Mark LOVED leftovers, whereas I was not a fan. I'm still adjusting to making less food overall, because so much of the foods (including anything made with tomatoes or cheese) that I make my family, I can no longer have without rough side effects on my stomach. So I make the kids food, they eat (sometimes), and then I have this pile of leftovers. I really, really miss him eating all my leftovers and giving the chef high praise.

Sometimes our video chats on the Facebook Portal get a little weird...

While my two older boys have been in therapy for the past two years, some days I wonder if we're making any progress whatsoever. I got this email from Cashel's teacher, and I sat silently sobbing at my desk. Two years ago, Cashel was angry. He was hurting. He was embarrassed about being different. He missed his Daddy. He was on the verge of a complete meltdown, and while that came a number of months later, it is a DRASTIC change from how he is processing it all now. I am SO proud of him for not only acknowledging that FTD is a huge part of his life, but also educating his peers about it and owning his life situation so well. I know adults with less emotional maturity than my seven year old. To those of you working with my boys: Thank you. What you are doing is making a difference.

My little Star of the Week :) I got to have lunch with him, and read aloud in front of his class a special note that I wrote to him. ♥

Hand washing is a never-ending saga in our house these days...especially with little Miss Kins. I should've bought stock in hand soap.

I sure miss seeing the sunrise and sunset more regularly.

I had a kid-free weekend in early November so I could go to speak at the National Caregiver's Conference in Chicago. It isn't often I get to drive off into the distance with no carseats in tow!

Goodness, I miss this woman so much! Coley has been one of my very best friends for over a decade! I never get to see her (case in point, the last time I saw her was when her oldest was still in her tummy...in 2011). We had such a great time together over dinner, then some wine back at the hotel.

These ladies are all so great! I enjoyed getting to know them at NCC19! The two on either side of me are dear FTD spouse friends of mine, Dr. Martha Garmon on your left, who is just on the verge of releasing her latest book, "The Care and Feeding of Caregivers", available for pre-order on Amazon), and Sharon Hall on your right, who has been a fierce advocate for caregivers through http://ftdarn.org (FTD Advocacy Resource Network).

I was on the "The Power of Storytelling in Advocating for Change in Caregiving" panel with this powerhouse team! Truly, I felt so humbled to be included in the panel. (Your) left to right is: Elisa Camahort Page {Founder and CEO of Cygnus, Founder Ternkit Consulting and former founder/COO of Blogher, Inc.}, [Myself], Amy Goyer {author, writer, speaker and AARP’s national Family and Caregiving Expert, columnist, and spokesperson}, Gina Martin {photographer for National Geographic and founder of the Bob and Diane Fund}, Jay Newton-Small {founder of MemoryWell}

I decided that after 18 years of the same Bible, it was time to upgrade! I went with the Beautiful Word one basically for all the incredible journaling space.

I forgot how yummy Noodles and Company was!

I swear they were MUCH more excited to see me when I got home than they appear lol

Every year, our elementary, middle and high school puts on a wonderful Veteran's Day program. Last year and this year, Cashel got to sing in it. I went with my girl Jilly Bean - isn't she so beautiful? :)

"No standing or dancing on the chairs while we're eating" is one of the much, much lesser things I never thought would come out of my mouth when I thought about parenting as a young adult.

I feel sometimes like if I didn't have a million things floating around in my head, I might think of being more creative like they are at the SEED program. These minute-to-win-it games got these guys working together and having fun and not decking each other, so...why don't I do it at home? They're so simple! I mean, this one was, "Here's a stack of sticky notes. See who can put them all over the fridge first." Another one was moving cotton balls from point A to point B with vaseline on your nose. And yet...it has not yet moved over to home life.

This pretty much sums up the last few months of 2019 for me. It's a big accomplishment, and re-writing not only from VB6 to C#, but also switching back end databases...this was a challenge. There were, of course, minor bugs to be ironed out, as would be expected with any new software, but it was such a relief to finally be done with testing and have it at a point where it's just maintenance.

So I'm driving down the interstate back from Sioux Falls with the kiddos, and randomly, this little piece just flies off and is gone. So weird.

I miss this woman SO, SO MUCH! Krista...come back!!

I've been ever so slowly updating our appliances. Apparently the extra large drier was a great place to hang out after I took the warm clothes out.

Uncle Daniel was back in town for a number of weeks, and the boys didn't hate it ;)

Saturday mornings in November, December and January the big boys had basketball camp at the school. I'd usually drop them off, then go get myself some coffee, then come back. Both Kinsley and Ryan refuse to be held most of the time {usually only unless I'm completely exhausted in all the ways, and then they BOTH want to be held at the same time}, so it's usually like this a lot. My little entourage ;)

Definintely getting a basketball hoop up this spring. They both LOVE basketball, but they both also are not even sort of a little bit good at it. So...lots of practice!

There are moments where I feel like I just woke up from some haze and the kids. Usually, it's a collective thing, but this particular picture...I mean...I feel like he looks like a teenager here. Most of the time I can keep my composure, but sometimes I struggle to hold back the tears. This was one of those moments.

I'm so proud of how far he has come from a year ago! A year ago, he didn't want to see Daddy, talk about Daddy, visit Daddy...he was in a bad place about it. This year, he regularly asks about Daddy, wants to join in on video chats, and when we visit, loves to give Daddy hugs and kisses, and specifically asks to have his picture taken with Daddy. ♥

I mean, it doesn't hurt that Daddy is the only one with a legit gaming system to play...

Daniel has been such a great brother to Mark. I know this has been a really hard, emotional battle for him as well, and it's very difficult to continually watch Mark decline. Sometimes I find myself not even knowing what to talk to Mark about anymore. I usually tell him about my day, ask how his was, tell him how the kids are, talk about what I've been doing around the house. But Daniel and Mark? They have this brother bond, and they can talk about cars and sports and childhood and family and they have memories that I don't. It's endearing to watch them interact.

In case anyone was wondering...THIS is why his recliners keep breaking.

This made me chuckle, thinking of when I was a kid and my Dad had gotten home from some training for the Air National Guard and brought home a gas mask. I can't remember if it was Dave or Dan, but they put the gas mask on and walked around terrorizing Jason with it lol Memories!

I recognize that profile ;) Kendrick has come a long ways himself. While he still has bouts of rage and anger, they're not as frequent. He truly, really loves his Daddy so much, and I'm hopeful that before Mark isn't with us anymore, he can come to a better place with it like Cashel has.

Most of the time you don't see pictures of me at the facility, ESPECIALLY when Daniel comes along. Why, do you ask? Because I'm usually laying in bed with the little ones climbing on me. It's my opportunity to actually lay down and ::gasp:: rest. Mark usually comes back and forth and will come and lay down with me, say some obscure thing, then get up and walk away again.

I can't imagine what it's like for Mark to watch the kids growing up in little snapshots like he does. It is so endearing for me that Kinsley has grown so attached to him like she has. It doesn't make sense, considering she was 6 months old when we moved him to assisted living. She radiates joy and love and I'm so honored to be chosen to be her Mama. She loves her Daddy ♥

Moments like these are going to crush me a year from now, I have this feeling. Seeing us interact as a "real" family, even if just for a few moments...it is so hard.

♥

I thought this was cute...until it totally wasn't anymore.

Our church accepts donations for the Operation Christmas Child program that gives Christmas boxes to underpriviledged children around the world. I love when it's dedication Sunday!

This was the COOLEST light show we found on our way up to the cities.

The place we stayed...I feel like someone went right inside my brain and then created the space. We will absolutely be back. Heck, I might just go back by myself sometime. It was such a haven!

Remember that time when I went on vacation when it was something like 40 degrees outside and I only remembered to pack tank tops?

Goodness do I ever love this woman! Erica's husband Larry also has FTD, and we are such kindred spirits ♥

I'll stop talking about this little trip, but I did a full recap here if you want to check it out.

I spent so much time researching and test driving vehicles in November (and since this is February, I can say also in December and January - oy!) I came across this sitting out on a Sunday morning and was intrigued. I hadn't heard of this one before. (Yes, this is foreshadowing)

All the hearts for these two ♥

And now, for a series of pictures that pretty much sum up our Thanksgiving

We took a plate of Thanksgiving from the Johnson's to Mark at his facility for supper after the big to-do in Storden. Daniel's wife and daughter had come out for the holiday, so we made it a girls' (and Ryan) trip.

And then...we did some Black Friday (on Thursday) shopping just for fun. It was less chaotic than I remembered from a decade ago when I went for sure. I suppose it helps when you don't have anything that you really wanted or needed.

We SO enjoyed having Iryna and Sofie come and join Daniel for the week. The kids loved baking cookies and snuggling and reading books and all the things with her, and it was, for once, nice to NOT be the one everyone wanted to climb on!

They were also able to join us for our decorating day, in which we decorated a half-lit tree. This tree...well, let's say it's done after doing its job for 13 years, but man...I can't count how many times I've replaced the dang bulbs in it and nursed it back to health. It just wasn't to be this year. So...next year, it'll be a new tree to make new memories.

This shirt surprises no one lol

My sweet niece Sofie picked up the camera and got a few shots of me helping Kinsley put some ornaments on the tree.

One of my very favorite pre-Christmas traditions is to get Chinese takeout after we decorate for Christmas, and then watch Christmas movies in new Christmas jammies.

I used to consider these our "Christmas Eve" boxes, as they would open them Christmas Eve. But then I realized that it made no sense to give them Christmas jammies and movies and ornaments right before Christmas was over, so I started last year giving them to the kids on this particular night, and it has been fun!
It's before they're over-tired from festivities and waiting for the big day and out of sorts, and we get to slow down and really enjoy it together.

Freshly jammied babies, ready to settle in for Christmas movies with their new hot cocoa mugs.

The Johnson girlies

The boys with Uncle Daniel

Last year I got them personalized popcorn tins, and this year personalized mugs. They were SO excited!

Ryan was being a bit of a pill about getting his picture taken with his, I guess.

Snowman time!

Ryan tends to be the most clingy to Uncle Daniel. It's so sweet ♥

I'm cherishing this every last minute I get. I know she's my last one who will nap on me. I don't always get the opportunity to sit and snuggle, but with a few extra adults in tow, I got that luxury this particular day. She's so beautiful! The Lord knew I needed her.

Cashel occasionally writes me little notes like this, and it's so sweet ♥ I will say, though, that his accolades have me chuckling... "Thank you for doing stuff and other things" lol Kinda like, "I know you do all these things and all this stuff, and I really have no idea what any of it is, but thanks" lol

The gym visits continue. This is pretty much my gym face lol I love going to the gym, but not in a "I LOVE to go to the gym" way. More in a it feels good way, but not where I'm typically smiling and bubbly.

This guy started being REALLY into helping in the kitchen. He wanted to "help me" make cookies, but to be honest, he did this all on his own, with me just explaining the measurements and how to properly measure flour.