Lately in Windom (September 2019)

At the end of August and early in September, I had a lot of solo visits to see Mark. Once it was during my recovery from surgery when the kids were at Daycare Campout, once it was because I found sitters and went on a Saturday, and twice it was after sinus surgery follow ups. I had been there frequently enough that I didn't need to do any more shopping, and I got to literally just sit and hang out at his place. I hadn't had the opportunity to do that at all ever since he was placed. It had been what I had envisioned when we placed him, but it's always just way too busy with the kids, and they're constantly running out of his room, and it's just exhausting. It was a very nice change of pace this day. I also was able to take him for a haircut as well as get him shaved up.

On a couple occasions I had the opportunity to just take a book and sit down with an iced latte (Starbucks and Caribou both have alternative milks, so yay!) and just...read. And process. It was so nice!

A stark contrast from homelife ♥

Cashel was dealing with lots of jealousy this month. We had cake for Kendrick's birthday, and he got a new bike and a penny board and a few little Minecraft things. This launched into how Cashel never gets anything and how when it was HIS birthday, we didn't get to do anything fun. I reminded him that he also got a new bike just a couple years back when he turned 6, and he lit up almost as if he had forgotten about it, and, of course, wanted to make sure he was still at least faster at least.

How soon he forgets...

We had fun celebrating Kendrick's belated birthday with Grandpa, Grandma Pam and Aunt Jess early on in the month.

I seriously just cannot even...♥

I haven't mentioned this before much on my blog, but I am a FIRM believer in Chiropractic. I've had all my babies adjusted within the first week of their birth, and have not had very fussy kids. When my kids get lingering colds anymore, I take them to the chiropractor instead of the doctor, as the chiropractor can align things in their upper back and neck so that their drainage can drain properly. Same for ear infections.

Did I mention before that the babies were not great sleepers in August? Well, yeah, September was mostly the same. This particular picture was taken at 4:36, and it was after about 20 minutes of them getting up, wanting snacks, wanting milk, screaming bloody murder if I refused, and then jumping on my bed.

Back to the gym! I kept at it the whole month, and it felt SO GOOD to be moving again! I ended September with a sad 13 minute mile, but also ended the month being able to do sprints as a part of my 2 miles, and also jogging a solid mile of it in quarter mile increments. Slow progress.

My first sinus checkup was SO uncomfortable. My nasal passages were still very swollen, and the probe they stuck up there was SO painful. I was expecting much of the same for this particular update, but was in and out MUCH faster than anticipated.

We were so super bummed that the Jackson Kite Festival ended up not having enough wind that day to get the big kites up in the air. This year I opted to purchase some little kits and let the kids have fun decorating their own kites and then flying them. I'm not sure I'd go that route again next year, as there weren't enough spots around the tables for all 4 to sit down at the same time in the same area, so we had to go in twos, and it was just a long wait for us all to get done.


We've always really loved this event, and the kids were super excited to see the big skimmers again.

Sometimes you just need some mama time...at the same time...while a mile away from the minivan...while hungry and tired. I mean, it was either this, or stand there on the runway while they lay there flailing and screaming, so I've learned to make due and figure it out.

Oh, my heart :( My sweet co-worker friend Krista moved back near her family up north, and Jilly bean and I took her out to Round Lake Winery for a farewell. It's so lonely without her, but I'm so thrilled for her that she's on to bigger and more exciting things in life!

These two sweet FTD spouses came all the way down from Minneapolis to Mark's facility just to meet me! They had seen the 60 Minutes segment, and just really wanted to give me a hug and visit. Sweet, sweet, sweet people. Heck, ALL of the FTD spouses I've met are. We're all warriors!

I threw together a quick, more recent 2019 book for Mark to give him a little something to see more up to date pictures, and he LOVES it!

So most of the time when we're heading home from Mankato and need to eat on the go, we grab fast food, and there ends up being a giant food bomb all over the van when we're done. I had to stop at the store for a few things before we headed home, and the Panda Express was already closed for the night, so they begged me for a fried chicken meal from Cub. Honestly, they spilled NOTHING. It was bizarre. And they ate most of it. Mind blown.

We had ART Parent training at the school, and these are the fun projects I get to help the kids with this year in Cashel and Kendrick's classes.

Would it really be King Turkey Day if we didn't get a picture with Paycheck?

Goodness am I ever thankful for extra helping hands for the pancake breakfast. #SyrupEverywhere

I think I've figured out why Ryan never wants to eat his food at home...I don't typically feed him like this. I'm contemplating it at this point. #crackersfordays

Grandma Pam hugs are just the best!

The kids love to explore the fire trucks after breakfast!

I swear it has been probably over a decade since I've seen a caterpillar. I'm not sure why - maybe it's because I'm not looking for them? But it was cool when we found it at the apple orchard.

No bag? No problem!

This one insisted adamantly that we pick pumpkins and gourds as well. We had done that in the past, but the pumpkins were all gross and rotten before we'd get around to carving them, so we picked up a couple, but ended up having to chuck them after Cashel took it upon himself to locate a knife and carve it on his own when I wasn't looking.
I'm struggling to process these two pictures, a mere 5 years apart.

Kinsley would really feel like a little princess, with these boys letting her sit back and enjoy the ride, but I have a feeling she's gonna be a little more like her Mama, and want to take over haha

Love these two so much! And miss them!

I may have mentioned before that this one is sassy...

His smile just makes my heart so happy :)

These two guys got to be IN the parade this year! They started taking hip hop dance lessons the week prior to the parade, and since they had a float and asked if people wanted to participate, they opted in!
I think it was more boring than they thought it might be, but they got to see the last half of the parade at least, so that was cool.

One of the perks of my hard work both at my diet (cutting the inflammatory foods) and exercise is that some of the clothes that were just slightly uncomfortable now fit great! Also, I feel energized enough to take the littles more places.

Miss Kins and I got to accompany this guy on his first field trip for school! It was their fall walk from school down to the park. I opted to bring the wagon instead of the double stroller, since none of my babies will ride in it anymore :( As an aside, his eyes just slay me!

Mornings this month looked a lot like this. That's MY chair, btw, where I spend my mornings with Jesus. Let's just say it hasn't been nearly as easy this month to sit and have my "me" time in the mornings with these two.

Oh my goodness do I just love spending time with this sassy little lady these days! On this particular morning, daycare was closed for the week, the big kids were at school, and it was just us girls. I asked Kins what she wanted to do, and she said "Lake Park", so off we went! We did lots of playing, seriously inspecting dirt, and watching for fishies. She is SO my kid lol

I found these little kits at Michael's one weekend, and I was actually really stunned at how much the boys enjoyed doing these. I remember doing them as a kid, along with the little stained glass ornaments you put in the oven. Between this and the striking similarities of VSCO girls to basically any girl raised in the 90s, I mean...seems like things are coming full circle, no?

Cashel and Kendrick LOVED soccer this fall! I can see that they're both going to be really dedicated to it!
It's the one activity we've tried so far that they talk about and can't wait to go to. And they're REALLY into it during the practices. I can see Kendrick being a striker, and Cashel being a full back. It's so nice to see them into a sport I actually really loved growing up too! Soccer is just in that Ropte bloodline, I think!


The verdict is still out on whether or not the boys really like hip hop, but they're certainly giving it a try!
I think the big struggle is that they have to actually learn moves, and while their own unique styles really mimic hip hop, they don't get to just do whatever they want. That, and they've had a couple comments at school about how "boys don't do dance" or "dance is for girls", so we're working on responses to that.

Changes Since May: A Mark Update

With the re-airing of the 60 Minutes special on FTD, I've had a slew of requests for an update on how Mark is doing, and what has all changed since the 60 Minutes special first aired in early May 2019. So here goes!

First, I'll note that the footage from the special was actually from mid-February, so while it appears 4 months has passed since the update, it has really been more like 7 months. But a LOT has changed since then, so let's get to it!

For those of you just looking for a very short summary, here it is:

He seems about the same to anyone looking in, but there are more subtle declines that only the staff working with him at the facility would notice as well as myself. We're medicating him significantly more to maintain those levels, as well as paying a heck of a lot more to keep him where he is and keep everyone safe.
I am also having to help him with more self care types of things than before, and he has been gagging on food more.

Now for the more detailed version:

Location

Mark has moved facilities since this was aired. He has been across town in a new facility since the end of March. It has been a wonderful change for us, but as the disease continues to progress and we struggle to get back to a calming level with his medications, we've been asked to provide 1:1 aides for him for the past two months.

Health

Since February, Mark probably SEEMS about the same overall: Still very busy, still wants to eat all the time, looks the same, etc. The big changes really come down to personal hygiene, types of foods he can eat without choking, and the level of meds required to keep him at that level of functioning.

Hygiene

He can no longer shave his face himself. He will try, but I always have to finish the job for him. He will only allow me to shave him as well, or clip his fingernails or toenails. I do that as well, and he won't allow anyone else to as well. He is also unable to manage contacts anymore. The staff took them away, as he had been putting them in but not taking them out, and then putting new ones in. He now wears his glasses all the time.

Food

Mark is no longer to eat foods that are difficult to swallow. He is not allowed to eat things like popcorn, chips, french fries, jerky, steak, and any hard fruits, along with a bunch of other things. He had to be evaluated after a few scary incidents where he was gagging on his food from eating so quickly. They have to serve his meal in phases now so that he doesn't eat it all too fast and choke. He has to eat ground meats, and any sausages or hot dogs have to be cut up so he doesn't choke. I've witnessed this when he has had fries with us just this past weekend, and he didn't have the wherewithal to take a drink to help it go down. I also saw it a few months back when we were waiting for the Psychiatrist appointment with some Pop Tarts, and it's scary to witness.

Meds

Mark had to increase his meds significantly since the filming. It began with a Depakote adjustment, from 1000mg to 1500mg to get him at therapeutic levels after significantly increased agitation. A few months later, the inappropriate comments reared their ugly head again, and along with that, some inappropriate touching as well, which caused us to then need to increase his Seroquel significantly, from 400mg to 700mg. This caused him to then return to completely out of control urges to eat all the time. He'd finish one snack and want another immediately and it was impossible to control in any sort of manner. We tried an appetite suppressant, which did help curb the eating, but I still don't feel he's at a stable place right now, considering he's still requiring 1:1 care right now with aides that are provided from an agency.

Ability to Leave

We were previously able to take Mark out on the town when we came to visit, even with kids in tow. He would stay near us most of the time, or at least within a sight path. He would go to the same places every time, and always came back to us.

This changed in late June when I lost him for 25 minutes in the mall with Ryan and Kinsley in tow. I decided at that point that I could no longer take him out with the kids safely. We then tried again, with Mark's brother in tow to help manage him with two adults (myself and his brother) in mid-July, and that proved to be too much for us to handle again. Sadly, the most I can do at this point, especially with anyone along with me, is to take him through a drive through and go for a drive. He still asks to go to the mall or out to eat each time we see him, but not only can I not control him, but his incident this past Sunday with the gagging on fries scared me enough to not feel comfortable getting anything food-wise for him beyond ice cream. So while we're not at a point where I feel we need to be confined to the facility with each visit, we are confined to the car when we go out.

I still tend to be the person who has the easiest time redirecting him, but we're reaching a point where even I am struggling to do so, and I know this means that before long, we will no longer be able to take him out when we visit.

Costs

The updated version of the story mentioned that I am now paying approximately $13,000 ($12,600 to be exact) per month for his care. That is for the 1:1 care alone. The facility costs have been graciously covered by an extremely generous donor from New York for a year. With Mark currently at level III for care at the facility, those costs are approximately $7200/month. So full burden, although I'm not paying it all myself, is approximately $20,000. Per month. I am working with the nursing staff at the facility as I get time to figure out if we can find a way to stabilize him enough to remove at least some of the 1:1 hours, but for now, it is required from 6am-10pm 7 days a week.


I'll try to get around to doing a similar post pertaining to myself and the kids in the next few days. We'll see how well that works, considering bedtimes have not been the easiest lately.

An Update on the Kids: Processing Emotions

I think the hardest part about grief and processing emotions is that we're all at different points most of the time. I really, truly do feel like I've managed to put aside most of 2017 while working through creating my scrapbooks for that year. The kids, however? They really haven't.

We talk about Daddy here and there, but they've pretty well just stuffed most of their emotions about the situation and Daddy deep down and have immersed themselves into other activities so as to not have to think about it. Kendrick's therapists, however, feel it's time for both boys to really begin to delve into processing their emotions instead of just stuffing them.

The goal coming up here now is to bring those emotions to the forefront, and to be honest, that's a little scary to think about. I met with Cashel and his therapist at school last week for his annual diagnostic review, and let's just say that Cashel has zero qualms about pointing out all my flaws. And really, to be honest, with as much as I sheltered the kids from Mark's behaviors while he was home, I'm probably going to come out the bad guy in the story.

I met with Kendrick's therapists last Friday as well, and we're going to work together with all the therapists and the boys and I once a week to begin pulling those emotions out and working through them. Earlier this week, the boys and I met with Kendrick's therapists to let the boys decorate their own memory boxes to put the good memories of Daddy in. So far, we've included pictures of the boys fishing with Daddy and farming with Daddy. I need to go back and print more pictures out so they have more to put in their boxes for the next week.

We're having each of their teachers keep envelopes in their rooms at school so that if they are having a hard memory or even a good one and they want to put it in their memory boxes, they can draw a picture or write it down and then put it in the envelope to get it off their mind and then go about their day.

The good memories will go in the memory boxes, and then the bad ones will go in a little suitcase, where ALL our bad memories will go together. The goal is to explain that we all will together carry those bad memories as a team, as a family. That we aren't alone in those bad memories, and the hard times, and that we're there for each other.

Honestly, and I may be wrong, but I think we'll find that the boys want to focus significantly less on their actual relationship with Daddy, but rather on what we've all collectively lost as a family unit. And honestly, as much as I desperately miss Mark, I think that's what I miss the most as well.

They miss having someone else to lift ME up and be my helpmate so that we can all be a fully functional family without the burden being on me alone to parent.

They miss having someone to play with and pay attention to them when I'm up to my neck in bills and appointments and scheduling conflicts and remembering medicine dosages and figuring out what we're eating for all the meals and making sure the minivan has enough gas to get us where we're going and all the clothes are clean and that we actually HAVE food in the fridge to eat and everyone has underwear and socks in their drawers (and not strewn throughout the yard and garage - don't ask).

They miss having a Mama who can, on a whim, take a day off work when they don't have school so we can do fun things together. They miss having someone to take over some of those responsibilities so that I can relax and they can have their fun Mama back more than they get her.

Their bad memories will likely be more about me than about Mark, and that's going to be hard to hear. Because I miss their Mama desperately too. I miss the way I felt before FTD came into our lives. I'm sure the pictures look the same, but my soul feels weary and less-than, and that's something a picture can't always capture.