Lately in Windom (December 2019)

My favorite visits with Mark are the ones where I get to take him to get all dolled up and cleanly shaven!

Our favorite Jody turned "8" at the beginning of December, and we felt she deserved some praise! The cake was a disheveled mess, but it was very tasty :)

I love watching this little guy grow. ♥ He's all of a head shorter than me, at 7.95 years old, but still likes to crawl up on my lap like a little kid.

These two enjoyed visiting where I work for our little Christmas Open House. They felt pretty powerful in Mama's chair ;)

So, so, so, so much sass with this one!

Watching Christmas from the eyes of your kiddos is the most magical thing.

Sometimes, every once in a great while, when it gets too quiet, it's not a bad thing ♥

This little lady has her fashion sense down, no?

My biggest kiddo did a great job at his Christmas Concert! ♥

When they're all just sitting there like this, it's a given that you ask them to smile. Chances are about 25% that it'll happen, but still lol

Little known fact about me: I LOVE to travel by myself. LOVE it. There's something about not having to answer to a single other soul. No one to ask you questions or confirm anything. You can eat where you want on a whim (or not eat if you don't feel like it). There are no rules. There is no true timeline. You get to do your own thing.

This particular month, my travel was for an impromptu (all-expense-paid) trip to NYC for the filming of the Mel Robbins Show for a segment they were doing on Caregiver Burnout. To be honest, prior to this trip, I was struggling - a LOT - with self esteem. I mean, a TON. It was the subject during therapy a lot, and I had a really hard time rising above. But NYC was really good for me in realizing that while I may be doing a really great job struggling through all the "stuff" I've been dealt, I feel like all those circumstances have changed me so much so that I don't know who I am much of the time. But NYC...NYC made me realize that I am still me. It made me realize that I actually LOVE myself! I really like who I am. I like who God has changed me into. I enjoyed SO much not being a burden on anyone on account of my husband or my kids for once. To be able to get lost in the city and not panic or have people yelling at me. Forgiving myself for not having charged my phone and guessing my way back to the hotel. To just wander with no agenda felt so nice.

It seems like everywhere I go, no matter the circumstances, I am constantly having to apologize for someone knocking something over or running into someone. Kids running amok, much to my chagrin, at the facility or at the grocery store or Target. My husband causing issues at his facility. Apologizing for things other people say. I have seriously spent so much of the past 3 years apologizing for everyone else and trying to train my kids up right and keep my husband happy and not inconveniencing other people that I forgot that it isn't ME that I apologize for. It's who I have had to be in response to extreme circumstances that I have very little, if any, control over.

If NYC taught me anything, it's that I am still the same considerate, kind, loving, generous, punctual, calm (and so many other things) person that I've always been. I like me. I really needed that.

As an aside, I did recaps of the trip, so I won't be talking more about it in this post.
Day 1
Day 2

Oh yeah, and here is the YouTube full episode of the show, if you haven't seen it yet. (Fair warning: Don't watch it if you don't want to cry, because the chances are high that you just might)

Spoiler Alert: During this filming, my friend Sarah (the one who planned all this behind my back, ya turd lol) surprised me! I was so stunned to see her, but it was such a wonderful surprise!!

Have I mentioned before that I'm becoming a pretty enormous fan of sushi? I mean, I'm beginning to think I may just be getting to the place where I might even consider ::gasp:: sashimi.

After my whirlwind week, I was so excited to bring Mark home for the day with an aide so that he could go to the boys' Christmas concert and have a small Christmas celebration with us at home. ♥ He did so, so well (aside from the whole trying to get out of the car going 70+mph on the highway a few times - crazy how stuff like that doesn't even phase me anymore.) He made it from 8am-3pm without melting down, but was ready to call it a day the minute I dropped him back off at the facility.

It was so good to see him sitting around our table with us ♥ Granted, I will say that I cannot fathom having him home at this point, considering I couldn't ever leave the kitchen to watch anyone because he has zero sense to not do things like...eat food directly out of the oven or steal food off other peoples' plates. It was a constant vigil, and I was so thankful that I had brought his aide with him.

And then...life goes on! We love attending our city's Christmas by Candlelight event every winter.

I absolutely LOVE it when these two get along so well! I just wish that they would get along during more than just while they play video games or watch youtube videos of other people playing video games. Since I limit it so much anymore, let's just say they don't get along all that well a vast majority of the time lol

My sweet baby girl! ♥

There's always that one...

We didn't make a whole lot of Christmas goodies this year, but these Rolo pretzel ones are just too easy to not make.

I had pretty much forgotten about our game closet as I had lost the key for the locked closet a while back. But alas, it was found, and Kinsley's first game request was Toilet Trouble lol

Loving this hand-me-down from Mark's Grandma ♥

I love baking with my kiddos! It's so fun to watch my kitchen turn into a DISASTER area lol

A couple notes: 1) Somebody needs to get this kid a tissue, 2) Thinking I need to scrub that residue off my pans a little better, and 3) probably a solid 50% of these ended up going in the garbage on account of not being able to pass them off to anyone else, and my kids not needing ANY more sugar lol

Waiting is SO HARD!

Yep - still in that "naps are for the birds" phase lol

Christmas Eve Dinner = YUM!

We see these angry eyes a little more than we'd like to these days. I much prefer my sweet little guy over this, but alas, some days we get what we get.

"Santa" was a little overwhelmed by all the delicious choices...

Christmas Eve was a bit...off this year. I had stayed up fairly late to get the house cleaned up, Santa gifts laid out, milk and cookies set out for Santa, and was just thinking about going to bed when Miss Kins woke up (she had passed out early after a no nap day) at 10:30pm.

Christmas morning! I've learned that the trick to getting pictures like this is to tell them they aren't allowed to open any presents until they sit and smile for a picture lol

The big kids weren't super thrilled with their gifts this year lol See, they got some (SUPER expensive) tickets to Florida for their gift, but they don't think that tickets should be a gift and they should just get them for free, so opening clothes and socks and underware made them pretty upset. (Of course, they changed their tune when we were on our way to Florida)

It's so fun getting girly things for this little lady!

My favorite part of Christmas morning is waking up and watching the kids get excited over their gifts while I sit back and sip on coffee with a big cinnamon roll.

This, for me, was the BEST part of Christmas. I was stunned to see Mark play games with the kids, and it just made my heart so full!

♥

Man, do I love this little family of mine ♥

This was the point at which we knew it was about time to leave. You can see the frustration and agitation in Mark's face here. I've learned to pick it out right away, and we have to leave shortly thereafter, as he gets very agitated.

Here it is again. The "can you just get off me and leave now?" look. It's hard :(

He did eeek out one more smile for Mr. Ryan, but didn't have enough left for Kins.

Mama snuggles were NOT so appreciated with valuable tablet time. They don't get it very often, so when they do, the world disappears.

This picture may not seem like much to anyone else, but to me, it was such a special moment. I didn't realize the kids took any pictures of it until I found this later. I was laying on the bed with Kinsley, and Mark walked over, crawled in bed next to me, put his hand on my waist (which he never does), smiled at me, and gave me a kiss. Of course, I left that day a wreck. I had forgotten what that felt like.

We decided to check out Minneopa Falls that day, and let's just say that it was exhausting and loud.

These two...they are the reason I keep lifting at the gym fairly regularly. If not for the gym and building muscle, I'd be incapacitated right now.

The last non-vacation pic of 2019! Minneopa Falls is gorgeous anytime of the year, but this particular day was beautiful! I have a couple short ones recapping our Christmas with cousins and the big kids' and I's trip to Jacksonville, so stay tuned.

The Beginning...

We had such a nice visit celebrating Christmas with Mark today. December has been a very busy month for visits, so I'm hopeful that January will calm down a bit. We brought him home for church on the 15th for the kids' Christmas program there, then followed with lunch before taking him home. Beyond that, I've been to Mankato either with the kids or on my own a handful of times this month. We've definitely enjoyed our time, which has been so welcome.

I got an email from one of the nurses at Mark's facility yesterday morning that we will need to call back in Occupational Therapy to come evaluate him again, as he has had periods of not remembering to actually chew food when it is placed in his mouth. On one account, the nurse had to physically remove the granola bar he had placed there out of his mouth. They even found his pills just sitting in his mouth one time, so they are going to begin getting his Depakote in capsule form, as the others can be crushed. He has been eating chopped meats and soft foods since mid-summer, so this would be the next step, which would be pureed meats and possibly even thickened liquids.

I know it's difficult to really grasp how on earth someone who looks so "normal" overall can be slowly approaching the end, but that is what this is...the beginning of the end. I've watched time and time again in the support groups I've been in that when they reach this point, it is sort of the downward spiral. It will be more difficult for him to eat over time, and eventually, he'll forget how to eat altogether. Choking is a major concern as well, whether that would take his life in itself or if he would aspirate food and begin the issues many dementia patients see over time with aspiration pneumonia, which weakens them over time.

I spoke with another nurse tonight and she was looking to me a bit for guidance, as they haven't had a resident with this type of dementia before, so it is all catching them off guard. I plan to visit with them a bit more either tomorrow or Friday when I make another visit up without the kids. We want to make sure we're all on board with what comes next, and to re-visit his wishes, which we laid out long ago. Sadly, his wishes (as are so many of ours, even while not sick) were to not take any advanced measures to prolong life, so when he is unable to eat, we will not be adding a feeding tube, which just...well...that's difficult to process. Unfortunately, with this horrific disease, there really are no "good" choices.

I'm doing okay right now with it, with tears coming in small spurts and then dissipating as quickly as they came. I've been preparing for this for a long time, but it's still hard. He looks scared sometimes, but he still has the same calm demeanor he always has. It's endearing that he still knows us all well and gets excited to see us. He called to video chat a couple times tonight after we got home, and at one point when I walked out of the room, Cashel said he called him over and repeated twice, "I love you, Cashel", which just... 💔

It's hard to know that I am slowly preparing myself mentally for this, but to watch my kids and the rest of the family who aren't prepared for this...that's hard. We have had a number of really great visits lately, and I fear the kids will begin thinking that since Daddy is allowing us to stay longer and is interacting with us a bit more, that maybe he's getting better. I'm not even sure how to approach it, if I'm being honest.

It's difficult to explain how a day can be so joyful and yet so difficult. I am so grateful for the memories we've been able to have with him lately, but man is this hard. I am so comforted to know that God loves him even more than I do, and that he doesn't desire that Mark should suffer in this way. To know that he is guiding Mark to the point where he is made whole again. But it's crushing to think that for him to be present with the Lord means he would be absent from us.

For no one is cast off by the Lord forever. Though he brings grief, he will show compassion, so great is his unfailing love. For he does not willingly bring affliction or grief to anyone.
Lamentations 3:31-33

Weekend in Minneapolis (November 22-24)

The kids and I went on a fun, albeit short adventure for a weekend in Minneapolis at the end of November, shortly before Thanksgiving. On the way up, we came across the light show at Sever's, just north of Jordan a bit, and it was SO FUN to drive through and break up the monotony of driving for hours in the dark on a Friday night.

We made it up to our VRBO home around 8pm and were so warmly greeted by the hostess. I had seen the pictures on the site before booking, but this place was amazing! I cannot fathom it during the summer when you can enjoy the deck, pool, neatly manicured gardens, and the fun, deeper back yard that backs up to a stream (can we say fishing perfection for the kids?) I think it's safe to say we'll be back to this one sometime!

The next morning, we slept in a bit and enjoyed the cozy living area together, playing checkers and noshing on some breakfast.

After the KIDS got ready (forget about Mama haha), we had to go outside for a bit to explore, and the kids LOVED it!

By around 9am, we got ourselves ready and loaded up in the minivan and made our way down to St. Paul where we met another sweet, sweet family living with the devastation of a Daddy with FTD. We just LOVED being able to spend a little time (albeit crazy) with them at the Science Center in St. Paul. The Largent family is just the sweetest, and the kids enjoyed getting to know each other.

It seems odd to me that I feel like I've known SO many from the FTD community, and yet I've never actually in person met another person living with FTD aside from Mark. Note that Larry can very well walk and has no issue with it, but he has zero issue with sitting in a wheelchair while his wife pushes him around the science center. And as wives of those who have FTD, we become so accustomed to doing whatever it takes to make our spouses not cause significantly more trouble than our small children: Oddly enough, it seems "normal".

It's hard to see how the kids are affected by this awful disease: To see his little girls crawling up in his lap and try to hug him and see them swinging at the kids and Mama having to come in to the rescue. We lived it for far too long. My dear friend Erica is doing a remarkable job with all she has been dealt, but while we see the smiling faces and see them embracing Larry, it just breaks my heart knowing the reality.

Fun side note: I had just dragged Ryan and Kinsley, kicking and screaming, out of the dino exhibit prior to this picture. You can still see Ryan eyeing it. Kids, man...kids.

This Mama and I are kindred spirits for sure! It's amazing with the FTD community how you can just take one look at each other and fully (or, at least mostly) comprehend it all. The loss we've experienced is incomprehensible to most people, but these FTD spouse friends I've made...especially those with littles still at home...we just "get" each other, and it's refreshing. We don't pity each other, we just hug and smile and cry together, and it's the one silver lining of this whole awful thing. Love you, Erica!

After our time at the Science Center, we drove around a bit while the babies napped, grabbed some fast food and then found some fun parks to explore.

We had another uneventful evening back at our VRBO, resting, vegging out, and just spending time relaxing together.

We LOVED our stay at "The Best House" in New Brighton, and would HIGHLY recommend it to anyone who is looking for suggestions!

After checking out, we headed to the Mall of America to spend the rest of our morning at The Sealife Center, which was a HUGE hit with the kids!

On our way home, the kids got a couple treats from the huge yellow barn (Minnesota's Largest Candy Shop), which they LOVED!

Every once in an incredibly great while, the stars align and my kids flat out just behave for me. It feels so validating to finally see my kids the way they are for other people...around me. The most difficult part for me about having kids who have lived through trauma is the capacity for anger that builds up in them, and being so young, with no outlet for it, I bear a LOT of behavioral issues that don't always come about anywhere but at home. So for this short visit to the candy shop, to see my kids all behave, actually listen to me without me having to raise my voice even, and then stand quietly at the counter while the cashier checked everything out...it was one of those satisfying moments where you realize that your kids might not turn out so bad after all.

After getting them all sugared up, I dropped them off with my dear friends Trisha and Matt at the movies so I could have some downtime. And I have to say that while Trisha saw this and was all, "Oh my goodness - I look awful" (or something along those lines), I think it speaks to how gorgeous she really is that she thinks *this* is so bad. Thank you, guys!

My initial thought was that I now had about a 3 hour window to do some vehicle shopping, but I very soon after realized that it was actually Sunday, and the dealerships were all closed, so...to the mall it was!

I had to start by finding an actual shirt to wear for the day, because I had accidentally only packed tank tops to go under other stuff, and well...a jacket doesn't exactly suffice for a day.

Side note here: This seems like such a simple thing, to walk down a candle aisle, but for a Mama who just spent two and a half days feverishly trying to keep 4 little kids from touching and breaking things at a beautifully decorated VRBO rental, it was like, "FREEDOM!!!" haha :)

After loading up with new bulbs and decor for Mark's tree, I grabbed some lunch/supper and went to go eat with him at his facility.

I wrote about our visit to decorate Mark's apartment for Christmas at the bottom half of his last update here, so I won't repeat myself, but in a nutshell, it was good :)

And that's pretty much it! It was a trip that I actually look back on fondly (aside from the dino exhibit stress, which I'm not yet chuckling at). I'm so grateful to be able to continue having these experiences with my littles right now. They seem to be growing faster than I blink these days, and while I still feel like I'm in the midst of a whirlwind at all times, unable to catch my breath or even take a step forward, as I look back through the memories as the days go by, I'm reminded that we are fortunate beyond measure. We have our faith in God and the provisions he has given us of peace and joy that surpass understanding in the midst of our trials. We have a warm home, more than enough food to eat, comfortable beds, an abundance of clothing and so many other creature comforts that we cannot even count them all.

Much love to our dear friends, the Largents, as we continue on this journey together. ♥