The Halted Days

Some days, like today, are completely up-ended to ensure survival. I'm always running on survival mode these days. It's been quite a few years since I wasn't. The things to survive have only been added to rather than escaping or being rescued from. Maybe that's what life is. But I miss not being in survival mode. Especially now. I keep pressing forward most of the time. Because my choices are to press on or to give up. And the latter is abhorrent to me because of all that would be affected. However, once in a while a day comes along when I just know that pressing on will destroy me. I come to a complete stop those days--not always by choice. But I have had the wisdom to recognize and not push myself at those moments. 

It usually takes a day, but I have had it last 2 or 3 days a couple of times. And these halted days feel a bit like I have given up. If outsiders were to observe, that is probably what they would think I'm doing. But I know what giving up would entail. And I haven't done that. I have retreated into some semblance of a shell to wait out the inner storm. There may be tears. There may be no eating. There may be Hallmark watching. There may be blank stares into nothingness. There may be mindless playing of my Harry Potter Puzzle game. There may be little communication from me. There is likely not going to be any cooking or cleaning or any other responsibility done because if I do I will crumble completely. 

Today felt especially hard. I had been doing all right. Then one thing from yesterday started a chain reaction, spiraling me into fear, hopelessness, questioning. Everything that I have to do for the next several months swooped in to suffocate me. I hurt at every angle and my body decided to feel all the pains, too. I'm still not great, but I was able to rally enough to eat dinner and handle bedtime with the kids (including beginning the next book in our family reading of the fabulous Captain Underpants series--which is saying something for my improvement).

Two things bother me in all this:

1) being a female with spaghetti brain and emotions and how one thing set off all of this. I know it means I need to do so much more to get me off the cliff I'm at. But none of the well-meaning suggestions from others really work for our family right now. Not unless you can finagle us to qualify for home health help, or reliable, trustworthy, FREE child care or house cleaning services. Or a free secretary to come help me with all the mental load things I had hoped Mon Amour would one day step up and help me with but now is physically and mentally incapable of doing. 

2) wondering if this halted state is going to occur more often after Mon Amour dies? I finally finished reading a very difficult-for-me book by a widow who had some similarities to me in being a caregiver to her dying spouse while caring for little children. And I remember her saying that her recovery after his death was actually faster than spouses who deal with their partners' sudden deaths. Because we spent much of the mourning phase as we watched the terminal illness take our spouses. 

So maybe I have "hope" that it won't be as much. But I have no doubt that they will be there. As long as I keep finding relief in my Savior (a great message I got to listen to at a Women's Conference this past Saturday), and holding on to the hope He gives, I will make it through. I just needed to write about it. Because this blog is to lay out all the stuff--the good and the difficult. To help me one day and maybe help someone else, too.

"You're Thor? Well it hurts."

Had to think of a lighthearted title to go with an unintentional stab today. We are blessed to receive long term disability and Social Security for Mon Amour. Without them we would be in trouble. Losing Mon Amour's job before HR mentioned he should apply for disability made for a very scary time. I'm not afraid to work and I'm skilled to re-enter the work force at a salary that could cover what Disability and SS cover. However, Mon Amour's health conditions mean I cannot leave him alone for too long let alone our 3 children at home. 

Yes, I could send Monkey #3 to public school (which we really don't want to for a multitude of reasons, one includes her own health). But there are still Monkeys #4 and #5 who aren't school age, yet. My work from home skills are being taken over by AI. Last year I spent lots of time and money to set up a home business where I teach preschool music classes. But I started that route when I wanted it to be a supplement that I could build as the children got older and could take more responsibility in their home schooling. I'd set up all but one step when we learned of his terminal diagnosis. I have calculated--I would need to teach at least 20 classes to make what our family needs to stay in our home (which is our 2nd goal after our 1st of continuing to home school). And most of those classes would need to be the higher level curriculum which I'm not trained for, yet, and which I wouldn't be able to keep up with company policy for amount of students because of size restrictions my city has placed on home businesses. Even if I was allowed smaller classes, I would need the interest. I'm struggling getting 5 students signed up for my 1 class. I can't imagine being able to find 100 students every semester, even with the 3-year commitment in the higher curriculum. So I am seeking out other work-from-home jobs while trying to take care of all the other tasks this new chapter as added in to my life. 

Disability and SS just barely cover the regular monthly expenses we have. They never account for the medical bills which we can't plan for as easily. I'm a Dave Ramsey financial fan, but we're not at a spot where we can set money aside for even the one month emergency fund. We're trying, but there's just not enough. 

I'm not necessarily ashamed, but I guess I have a twinge of embarrassment or guilt that we now have WIC. We have used free lunches the schools give in the summer for the last 2 years. And now I go to our nearest food pantry each week to stretch what we get with WIC and our smaller grocery budget. Over and over I quote the scripture of "If I had, I would give." Because I have done so in the past, and hope so strongly I can be in such a position again one day. But right now, I'm not. And it is extremely humbling. It can make standing in line at the food pantry difficult. 

However, the people I have met in line have been kind and interesting. Sharing umbrellas in a snow fall. saving spots in line for the elderly and disabled so they can wait out the cold in their vehicles. Telling stories of their lives. It's enlightening and camaraderie. The volunteers are upbeat, polite, patient, and also kind. I've appreciated their familiar faces even if they don't necessarily recognize mine. I have appreciated their kindness to my kids the couple times they've had to wait with me. And I appreciate that they will walk my box of food to my vehicle and load it for me. The last several weeks, the various gentlemen who have loaded my van have given me the head's up to be careful getting the box back out because it's heavy. Lots of canned goods, so understandable. A nice "be careful--it's heavy" each week. So kind.

And today the gentlemen was also being kind. He'd been teasing that I would eat all the donuts we had been given. I had laughed back and told him I didn't actually like sweet foods much, but we'd be ok because I had a husband and 3 kids at home. To which he smiled and agreed there wouldn't be a problem then. But as he finished loading my van, he said, "Make sure your husband gets that for you--it's heavy." 

And I smiled. Because that's what I do. 

Even though it stabbed my heart. I can go up to a few hours some times without having to be reminded of all the things that are up to me now because my husband can't. And then the reminder comes in one of its many varied forms. And I ache. I ache for me and the tiredness that overwhelms me. I ache for me at the broken dream growing old together and attempting to help each other even in our weaker states. I ache for my husband who had the ability to help in even the little things taken away. I ache that he aches over all this, too. 

Someone recently wondered aloud to me with no answer because neither of us could really say: Which is worse? Losing someone suddenly or losing them gradually? Because I've seen many friends and loved ones lose someone suddenly. My own brother, when they found his cancer was back, was gone within 3 weeks. Not as sudden as an accident might be, but it was still pretty quick. We had the blessing of saying goodbye, which the even more sudden deaths do not. And I feel it is a blessing that we have an unknown but far from sudden amount of time to create memories so we are ready when the good-bye comes. But that blessing can also hurt. Especially when it comes with limitations of what he and we can do. 

So, there's some honesty for you as you glimpse at what our life is like right now. And what my emotional state often is dealing with. In order to not dwell on something negative, especially right before I go to sleep, here are two completely unrelated positive that brought me joy today:

1) after several years of wanting to, the kids and I finally started to create our fairy gardens today. We're doing the Dollar store and Goodwill way, but it's fun. So cute to see them make theirs, and really stress relieving as I created mine.

2) FB reminded me that Monkey #3 crawled for the first time 6 years ago, when she was 15 months old. Countless things about her life are a miracle. From the experiences of her and her life, it's hard not to see the blessings we've been showered with even in this harder bend in our road.

Caregiver of Young and Old

Warning: This post full of TMI about bodily fluids/excretions. 

Over my years of friends, social media, magazines, and other sources of people's personal stories, I either heard about what it was like to be a caregiver of young or a caregiver of old. I haven't heard very many from those who are both. I'm sure there are plenty out there. But not many come up in my searches. Maybe because we're so exhausted from the 2 same but different roles that we're not writing the experiences down. Or maybe we're too embarrassed to share what it can look like. Like the last 2 weeks. Our family managed to get 4 differently bodily excretions within the same 20 foot radius. In case you aren't sure what those 4 could be, they were Blood, Feces, Urine, and Vomit. In that order.

Mon Amour stumble-fell while putting the kids to bed 2 weeks ago. Smacked his head into their triple bunk bed. Broke his glasses frame which cut his eyelid. In the time it took me to get to him and help him to the bathroom where I could tend to the wound with light and not scaring the kids from the sight, we left a lovely trail of blood with some occasional stop off spots that brought about larger areas of drippage.

A couple days later the younger boys had a small bout of diarrhea that lasted less than 24 hours. But it was one of those "I feel fine but when I passed what I thought was gas it was more than gas and....oops" kind. As someone in Mon Amour's family said when growing up, "Never trust your bum" to which several years later one of our Monkeys modified with "Never trust a toot!" This is the only reason I ever bought (and kept) pull-ups during the kids' early toilet using years because it's hard enough to manage all those bathroom skills when you're little. Let's not add to the mess when your body betrays you and doesn't give you the time to properly use those bathroom skills. But even with those, the messes still happen. Gratefully all stayed within the bathroom and none on the carpeted bedroom or vanity/foyer area.

But along those lines is my Monkey #4 who has sleep walking issues. I'm positive he has bladder issues that need a doctor's attention, but his doctor wants him to spend a year focused on his bowels as that can often be an underlying cause. I don't doubt that, but I'm 99% positive that is not his problem. However, I'm doing my due diligence by the doctor and spending yet another year of making sure Monkey does not need to use the toilet within the first 3-4 hours of sleep. Otherwise he does so while walking in his sleep, and his occasional disorientation from that either prevents him from getting to the toilet on time or leaves him in places that aren't the bathroom. I get a lot of midnight clean-ups from this, as you may imagine. And this one, not even a week after the Bunk Bed vs Glasses Fall, had the trail of urine follow the EXACT trail of the blood.

And then one week after that, Monkeys 3-5 and myself all came down with some degree of a cold. We had managed to avoid it all cold season, so we kind of knew our number was up. Gratefully we kept Mon Amour pretty healthy during it. And the rest of us were mostly the runny/stuffy noses. Except for Monkey #3. Who will always get a cough even when no one else does, because that's what happens in her CDH-inspired life. And not just a cough for a couple days. It will last her weeks. It's why we isolated the first 5 years of her life, and still go into a mild isolation when things get medically tense around us. 

But not only does she succumb more easily to colds and coughs than the rest of us, she also has a strange eating thing. I don't know if it is CDH-inspired. I've asked around with other moms to see if it's a normal thing and only heard of one child who has this (who does not have CDH). But if she goes too long without food, she starts to vomit. She holds absolutely nothing down, including sips of water. It took 2 trips to the ER and 1 to the pediatrician before we just chalked this up to making sure she always has something in her belly. (Which has been difficult during her 3 bouts of gastroenteritis in the last 4 years!) Gratefully, the pediatrician gave us a bottle of anti-nausea/anti-vomit pills. She has to take half a pill (thank you pill cutter that we've had since she was an infant!) to try and stop the vomiting. Usually it works immediately and she's able to keep things down within 10 minutes. A couple times she unfortunately vomited soon after taking the pill so the effects weren't able to take effect. 

One of those times--because she's supposed to wait 6-8 hours between pills and we weren't sure if we should try again with another pill so soon and had us waiting several more hours of vomiting and nearing dehydration--sent us to the ER yet again with 6 month old baby brother in tow because they couldn't tell us over the phone if we could just give her another dose. We were finally admitted. By that point, it had been 6 hours that if we had been home I could have given her the dose myself. But they administered the dose. Gave her some goldfish crackers, a cup of Gatorade, and a stuffed Peanuts' Woodstuck toy. A friend described it as the most expensive Kids' Meal we would ever pay for. I insisted she give the toy Woodstock to her baby brother who had endured 3 hours in the ER with us and who, at the time, had only 3 stuffed toys compared to her dozens and dozens.

Sorry, for the tangent. It's a "fun" story to tell related to her stomach issues. And is part of being a caregiver to a "medically complex" young child. Especially one who would occasionally in typical toddler-ness fight us about eating even when she knew that if she didn't eat enough she would start to vomit. Over the years we have worked it out well. She doesn't need to eat full meals. Just a couple of bites of something every few hours. Then eat enough at dinner (and make sure she has a snack if dinner is 3+ hours before bedtime) to last her through sleeping and not wait too long after waking before eating something. She's mastered this very well. 

But not a couple of days ago....maybe? I'm still confused as to what happened. She had had an enormous dinner the night before because it was one of her favorite meals. She didn't eat to the point of feeling full and stretched, but she'd eaten plenty. And had done the same all day. It was a really good eating day. But the following morning she was starting to feel the effects of the cold that had been creeping in the night before. We already knew she wouldn't be going to her swim lesson. So I ran out to do an errand, and while I was out I got a text from Mon Amour that she had vomited. That wasn't part of the cold symptoms for everyone else. There were no other signs of being gastroenteritis. She hadn't been feeling badly beyond cold symptoms. And she had eaten well the previous 24 hours. It was a bit uncharacteristic as to why it happened. Maybe her cold made her food move through her system faster? Maybe stomach issues could be creeping in to being some of her cold symptoms? Who knows.

But it was her typical course of not being able to keep saltines, bread, or simply sips of water down. Mon Amour has not been main caretaker during her life so, of course, had no idea where her pills are or how to cut and administer. Thus I had to get home to not only get her the meds before she got worse but also finish cleaning up the vomit that had managed to be along the exact same trail as the Blood and Urine! (Mon Amour had cleaned up what had gotten on clothes and whatnot, but the nitty gritty of what made it in the harder to see places was up to me.)

So what is it like to be a caregiver to young and old at the same time? For me, one of the things is this. Mess after mess after mess. Messes times four., sometimes messes times six since tweens and teens bring their own messes, too. It's not the toy or book messes that the kids can help clean. They're the "it's a dirty job and at this point of our family's life Mum is the only one with the knowledge, capability, and ability to clean it" job. Some times it's nice to feel needed. Some times I'm exhausted from what seems to never end. Some times I'm on automatic and I don't even realize because it's just part of our life now. 

But this part of our family's phase will change one day. And I'll encounter other things. For now I'll do the tasks that present themselves. If only our carpet cleaner weren't half broken and would perform the drying function as well as the washing function so we didn't have to stay off the wet, cleaned carpet for 2 days. Oh well. Can't have it all!

Navigating My Roles

Currently my husband and I are blessed to have couples' therapy. We probably only have a few sessions left, which worries me as Mon Amour declines and other things will arise because of that. But for now it has been mostly helpful. I feel at least heard and understood by my therapist. It has been nice having someone else besides me let my husband know where I'm coming from so that my husband doesn't just think I'm an emotional, over-reactive woman who is not the same person he married. Because while all those 3 are true, there are reasons behind them that he just didn't want to listen to. And the therapist has been able to help him see those reasons since Mon Amour wouldn't listen when I tried to explain them. 

One of the things I'm struggling with as a caregiver spouse is the level of our relationship. Our therapist said to try to beware of our relationship becoming a parent-child level and try to keep it at adult-adult (or spouse-spouse) level. I wholeheartedly agree with that. But I'm also trying to figure out how to do that with our new dynamic.

We are blessed that at this moment, Mon Amour is not wholly reliant on me as caregiver. He can feed and dress himself, but both take much longer in order to ensure his safety. He can communicate with others, but a person not used to his speech patterns may need me to help interpret what he said or where his thought processes are going. He finds his own ways to occupy his time and interests. Because of his abilities, we don't qualify for outside help. Which is nice in some ways. But it is also stressful for me in other ways and where I struggle in not becoming parent-child level. I think it might feel less like that if I weren't already the caregiver to 3 (sometimes 5) children at the same time.

It's been emotionally building up in me lately. And I felt that writing about it would help me in processing and coping. It can't hurt to have it documented as well. Especially as it's hard to know what is Gertsmann-Straussler-Scheinker disease, what is Cerebellar Ataxia (which is caused by his GSS but many others with CA experience same symptoms), what is his oncoming dementia (again part of GSS but needs its own category because of the significance of it), and what is him experiencing this new path of his life that he isn't always aware how it is affecting him. I thought I would list some of the things as they come to mind, and they won't all be in one post. Some I may not remember right now, and sometimes I need to be able to talk more in-depth

*Mobility. 75% of his mobility he can handle on his own. 5% needs me to enable him to do without incident: clear toys out of his path, watch out for cracks that could send the walker flying, be there when a step is involved in case he loses balance while wielding cane or walker. The last 20% needs me or someone else: wheelchair for outings, holding doors with no ADA features, folding up the walker to get out of the way, unfolding the walker to use, moving the walker as he gets out of a vehicle or navigates multiple stairs.

*Falls. He has a LOT of falls. Thankfully most of them are still minor trips, stumbles, collapsing into chairs while trying to sit or stand. (I should note that he doesn't count something as a fall unless he ends up on the ground. That is not how the Occupational Therapist classifies them. So if you were to ask him, he would say his falls have increased but not that many. The OT definition shows he falls every day.) About once or twice a week he has a minor-medium fall. About 15% of these I don't know about because I was out with the kids or asleep or it was noisy enough on the floor of the house I was on that I didn't hear the fall from the floor he was on. He tells me after the fact, especially if he had significant pain or bruising come from it. About 70% are ones where I run to him and ask if he's ok or needs anything. In those minor-medium ones, he doesn't need my help. But I have to check in case it was a more significant fall. 

It's hard to juggle being concerned or an available caregiver but also trying not to embarrass or degrade him. He wants his autonomy as long as he can have it, and I respect that. But every day is a question of how much autonomy should he have in any given situation, and the answers are not a linear decline. They are a roller coaster of highs and lows. 

10% of the falls are significant and require me to some capacity. He fell in the downstairs bathroom once, getting wedged between the toilet, half in the shower, and with the shower rod and curtain having fallen on him. It was just such an angle that he couldn't get his footing under him and grab a hold of something nearby to hoist himself back up. A similar fall by the bed and his nightstand did the same thing. Others of those falls have me examining if he is bleeding (which he isn't and why I put them in this category), or later ascertaining if there is significant bruising or strange lumps from the fall. Sometimes it is me checking on one of the children who was affected by the fall's impact to some degree. Sometimes it is cleaning up a mess or throwing away a damaged item. Most of those falls he rallies as best he can afterwards. But there have been a couple where he broke down emotionally. I'm sure it is for varying reasons, so I'm not sure if he wants me to stay for comfort or if my presence makes it worse. I try to ascertain without exacerbating the situation, but I never know what I'm doing.

5% of the falls are the extreme ones. Where there is bleeding involved, worry of concussion, or slight loss of consciousness or seeing stars. 5% might be a large percentage for that. (I like percentages but they're all guesstimations.) He's had about 5-10 of those falls in the last 2.5 years, including one just last week. So maybe that's more of a less than 1%. But they have been traumatic enough to strongly lodge in memory. They are what make me extremely wary, trigger my anxiety, and have me worried that each fall could be in the extreme category and always have me running to check on him.

Occasionally I can tell by sound that a fall was minor-medium and not one that needs my immediate attention. So I don't run to him. I call out "is everything ok?" It seems really callous to write that out. But for his pride, and my anxiety and heart rate, it works for us right now. He answers quickly if it is something he can handle on his own. If he doesn't answer quickly, then I hurry over to check. 

Recently, because I've been in situations when I can't get there right away, if I hear the sound of a fall that needs quick checking I send one of the kids. I probably shouldn't. But they need to know how to assess, handle, and help in the falls, too, because I have to prepare them in case I'm not there. 

*Incontinence. If he ever gets around to reading this blog, I apologize to Mon Amour for including this topic. But it plays its role. Most people without mobility issues just get up and go when they need to go. And if there is urgency, they can move themselves quickly. But Mon Amour's particular mobility issues make that difficult. In the restroom he has to manage fiddly things like buttons or zippers that are difficult with his hands which have lost their dexterity and fine motor strength and grip. Pushing and pulling the pants themselves is a hazard because of balance, and the focus on that takes away from the focus of keeping things in. 

Now, yes, months ago when he realized this, we started looking into adaptive clothing. He wears sweatpants more than he previously did in all 40 years combined. He is not a fan, but needs must. We've looked into other adaptive clothing, but we haven't set aside budget for those just yet. We have also talked about incontinence underclothing and I have researched those a little but not much as that is a direction he isn't ready to take yet. I would particularly like it if we could find cloth versions. We were a cloth diapering family for our youngest 3 monkeys and it is so much more sustainable and affordable. Then again, I've never had to work with adult sizes so....

For his entire life, Mon Amour has opted to sit for all bathroom functions unless things are crowded in a public restroom and a urinal is the only option. As a girl and one of the youngest in the family, I cleaned the toilets in my home countless times. I have 6 brothers. 😱 I don't care what society says about a man who always sits to do his business, but I have counted my husband as the kindest, most respectful man there is for understanding why sitting is always the best option! So a positive in all of this is that when standing for restroom business was no longer safe with his balance issues, it didn't take away from his "dignity" or "autonomy." It didn't even need an adjustment, except for the previously mentioned crowded public restroom.

Because he moves slowly out of ability, necessity, and safety, he has found it is generally best to head to the restroom as soon as he has an inkling of any kind. He also goes when opportunity presents itself before we embark on something (a drive, church meeting, etc) which, as we have taught the kids via Bluey, is a Tactical Wee. It has managed most of the mobility + restroom needs pretty well. But there are still occasions he doesn't make it in time, especially if a bowel movement is involved. We spent several months thinking it was possibly from something he ate. But it was happening regularly with no rhyme or reason. We don't have an exact answer, but both of us suspect that either GSS or CA has affected that. He does his best to clean up the effects of that on his own, though it would go faster and be cleaner if he would involve me more with that.

*******

Those are a few that have been on my mind lately that can upend the dynamic of trying to be spouse-spouse. I think in my younger days I figured one day if I married that I might end up with caregiver responsibilities once we were both quite old and our bodies naturally started to decline. I figured it would be a sweet privilege after so many decades together. I have learned from many of my more elderly friends that that is not the case. In some ways it is harder because watching the decline hurts more. Or because you yourself are older and not able to help as much in the way needed. I'm sure there are other ways that it does not feel like a sweet privilege. But the decades they had together makes a difference in knowing their spouse as well as other responsibilities. I haven't even known my husband for a full decade, yet. There are still so many things I'm learning about him. And we are in the extremely changeable part of life in being parents to little children. I am dealing with so much of NOT knowing how to be a parent. I'm still figuring out so much of how to be a wife, particularly a wife to Mon Amour. I have extremely little to fall back on in support and reassurance of my place and abilities in our marriage and our family. Add on figuring out life with a rare terminal illness that not much of the world knows about--including the very few who have the disease. 

I have no idea how to navigate. I'm completely relying on my Savior at the moment. And my only answer: Just Keep Going (but take the breaks where needed). This hymn comes to mind:

1 Jesus, Savior, pilot me
over life's tempestuous sea:
unknown waves before me roll,
hiding rocks and treach'rous shoal.
Chart and compass come from Thee:
Jesus, Savior, pilot me.

2 As a mother stills her child,
Thou canst hush the ocean wild;
boist'rous waves obey Thy will
when Thou say'st to them, "Be still!"
Wondrous Sov'reign of the sea,
Jesus, Savior, pilot me.

3 When at last I near the shore,
and the fearful breakers roar
'twixt me and the peaceful rest,
then, while leaning on Thy breast,
may I hear Thee say to me,
"Fear not, I will pilot thee."

by Edward Hopper

The Holidays 2025: A Verbose Account of More than Just the Holidays

I have a love-hate relationship with social media, as I do with pretty much most technology. Social media has plenty of negative aspects to it, but also some good. Some times I want to rid myself of all social media usage. But several years of isolation showed me that was my news source from many friends and family. We lead busy lives, and if anyone is like me, I don't generally like having to repeat myself over and over about things. Posting in one place where others may see and choose to read feels like giving the updates many ask for without bothering them or taking up much time on their or my side. 

I have noticed over the last several months I have posted less. This makes me happy as well as sad. I've spent years telling myself I should post less for privacy's sake and for the wondering reality of "how many people actually care what I say?" But I also enjoy posting/sharing/writing/processing/venting/finding the silver lining. Even when it was just single ol' me, I liked to share what goings-on I involved myself in and various thought processes as I grew in life's daily grind. My hands protested too much hand-written journaling, so blogs and social media became that outlet. 

I gain much from my personal writing, and it is the main reason I do it. I know there are some loved ones out there who like to know what I post, and I appreciate that. Some times I make a post with them in mind. And then there are the rest who don't necessarily seek out what I write, but read it occasionally and are kept informed and still supportive of me. Honestly, I think that's how most of us use social media and I don't find that a bad thing. We all have hundreds of loved ones and acquaintances and many of us like to touch base in spite of not always having the time to do so in the "old-fashioned" ways. And that's one main reason why I don't completely forsake social media.

So, it's mainly for me, but I know there are others who read when they choose. And that latter part has kept me more quiet of late even though I want to write so much. Part of why I created this blog was so I could have that writing outlet. I know not many read my blogs, and I'm absolutely ok with that. I want to share if they want to know, but at least it won't come up on a feed and cause them concern. Because if I shared on social media everything that came across my mind to share as I process everything in my life, I fear I would raise a lot of concerns. I can't always find the Pollyanna silver-lining as easily these days. I'm not depressed, but I suffer from some depressing things. And while I'm usually doing well and pressing forward, some times I'm not. Those are the times I most want to write down, because that has always been my best way of processing since I first began regular journaling when I was 10. I'm not a fan of toxic positivity. I need to have my negative emotions as much as the positive. But I don't need others to be worried.

There are hundreds of people who send us positive words, hopes, and vibes. Who pray for us. Who serve us with their time and skills. Who have given to us financially or materially. We have been so, so blessed by so, so many. I don't want to ever take all of that love, kindness, and support for granted. I don't want to sound ungrateful. But I also don't want to sound like a beggar, needing others pity or help no matter how much I need it. It's not that I don't receive service and gifts well. It's that I feel undeserving of so much when so many others need help, too. When I am a capable adult who needs to learn how to cope now because this is how my life is going to be for an unforeseen but definitely lengthy amount of time.

So in all that, I didn't post much about our holidays. Embarrassment? Shame? Privacy? Scared for people to know the full truth of our situation? I don't know. Still processing it. Every time I wanted to post, I couldn't. But I still want to write about it. So, I'm writing here.

2025 schedule meant Monkeys 1 and 2 would spend Thanksgiving with us and Christmas with their mother. Ever since they moved out-of-state and this schedule was put in place, Mon Amour and I decided we would always have 2 Christmas celebrations in our home. In the years when Monkeys 1 and 2 come for Christmas break, we have "Christmas Eve" the night they arrive and open presents on their first morning with us. It enables the family to have the entire break to enjoy the gifts we received (usually food). It gives the rest of the break a low-stress atmosphere where we can focus on our family and the Reason for the Season. On actual Christmas, we open neighbor and family gifts we have been receiving. It gives Monkeys 3-5 a sense of a "2nd Christmas," and takes away any upset feelings because their older siblings constantly talk about their 2nd Christmas that they had/will have at their other home.

On Thanksgiving-scheduled years, we have Thanks-Christmas-Giving where our main Christmas celebration happens during that short break. It becomes a very full week because a family birthday is usually in that week, too. Majority of the presents are that week. Then I get to enjoy a low-stress December as the big Christmas things are already done. Again we can focus on our family and the true Reason for the Season. On Christmas in those years, we still try to keep some of our traditions like Presents (Promises) to our Savior, favorite Christmas shows while sleeping by the tree, and Charcuterie for dinner (which we don't do at Thanksgiving because, well, Thanksgiving). I might do stockings a 2nd time with a couple of small things, and maybe 1 wrapped gift for each child. And there are the neighbor and family gifts. Again, a "2nd Christmas" for the youngers because they know that their older siblings will be calling to talk about all the things they got at their other house. We know it's now about things, but for little children that can still be hard to see their home get so little while their siblings in their other home get so much. We are more about experiences and traditions than stuff. And it helps us teach them more about the Reason for the Season (which is the birth of our Savior, if you didn't know that's whom our family celebrates). So, that's the long explanation of how our family handles the holidays as a young, blended family. 

Thanksgiving 2025 was approaching after Halloween 2025. Funny how that always happens. After the year we'd had, I did not feel up to hosting a Thanksgiving meal let alone 3 holiday celebrations. And as much as I get along with Mon Amour's side of the family, I really wanted to be with mine. I longed for familiarity and simpleness that came from childhood memories and associations. And nothing could bring that more than Thanksgiving with my parents. I'm so grateful they agreed to have us, and that my mom went all out with her amazing meal. She isn't a fan of cooking, but she is so good at it. In their retirement years, my dad has enjoyed taking up the majority of the cooking tasks and my mom has enjoyed her well-deserved break after several decades of cooking for my family as well as her growing-up family. Her working so hard on that meal was one of the greatest gifts I could have after this past year. She also unexpectedly gave each of us our own nativity Christmas ornaments and that was a sweet surprise.

Monkeys 1 and 2 were with us, and we played so much Nintendo as a family that it probably wasn't healthy but was great for the memories. We got to experience the Giving Machines for the first time, which was really special. And we had Christmas morning. 

Christmas 2025 was not going to be big. We couldn't afford it. I was able to get 3 inexpensive things for each child's stocking. I got mini boxes of cereal to keep our tradition of our own cereal. And I got each person in the family their own book, something my librarian-self has always had much pleasure (and thought) in. This was an extremely "doable" Christmas considering I had to pack it all with me to my parents' home, and I didn't want to make a mess there that would annoy or inconvenience my parents who were already being so generous. It made a very nice reason but also excuse. Because if Christmas had been in our own home, that's all they would have gotten anyway. We can't afford 5-7 regular boxes/bags of cereal. And we can't afford full stockings even if every year we have always gotten stocking stuffs from Dollar Tree. We couldn't afford taking each child to Dollar Tree to pick out a gift for each family member. Gracious, I cried for an hour after buying the books from the bookstore and at least 3 times almost went back to return them. They cost so much! Christmas isn't about the gifts. But as a mother who loves to consider what to get for each one of my children, the joy of giving was tainted this year because of medical bills, disability overpayments, and trying to figure out how to meet basic needs. 

I often feel I am living so much of my life backwards. I had a house before I had a family. I have young children while friends my age are seeing their children go to college and get married. I have friends in their 70s and 80s becoming spousal caregivers or entering widow(er)-hood, while I'm doing so in my 40s. I grew up with the example of a family's finances starting out meagerly as the couple was establishing their family and career, and that things would improve as time went on. But we started off doing well and slowly over time have gotten worse financially and in our ability to provide. My kids have gotten spoiled from too many "eating outs" (90% of those were delivery since we lived in isolation), because the only way I could deal with the stress of isolation was not having to cook (something I unexpectedly grew to hate). Now I have to explain that no we can't stop by to grab a kids meal or just some fries. That we shouldn't have been doing it as much as we had (seriously--So. Much. WASTED. Money. Even if for a small part of my sanity). 

Please don't get me wrong. Outside of ridiculous food ordering from our 5 or 6 favorite food places over the last 6 years, we aren't an extravagant family. Monkeys 3-5 wore hand-me-downs the first 3-4 years of their lives. When they grew/grow too big for what has been given us, we buy everything else but underwear and socks from thrift stores. I have held on to Monkey #1's clothes for 6 years waiting for her sister who can now fit them. Is she also wearing her older brother's hand-me-downs? Yes. Did my 2 boys as infants wear pink winter coats and a pink snow suit because that's what we were given for their sister? Yes. Have we worn shoes till the soles are half off? Yes. Am I still wearing clothes from college, high school, and even junior high? If they fit, yes. My towels are the towels I grew up with as a child that my mom passed on to me. Many of my socks have holes in the heels. I have put my out-of-shape body more out-of-shape by doing so much of our DIY yard on my own because it saves money. I keep my house at 62 degrees in the winter and 80-85 in the summer because it saves money. Many of our toys are from our buy nothing group, or really cheap on Marketplace, or gifts from others. Sooooo many other things that our family does to not go crazy spending money so we can spend that money on the needed things and the occasional frivolous thing like souvenirs on a vacation or a brand new toy or book for a birthday. This was how we had to live after my income ended so I could stay home. Probably should have been more thrifty, but during new baby years I didn't keep track of the finances and more was spent than should have been. We were never destitute, but we didn't have as much in savings as I would prefer. Then 2024 brought a decrease in income and an increase in medical things. 

All that long-winded, TMI tangent is to say that Christmas 2025 of necessity had to be small. Christmas 2024 was actually meant to be a small one, too. Usually everyone receives a book from me, a main present, small presents from siblings, a full stocking, and their own foods (cereal, crackers, chips, soda). In 2024, I shopped every bargain aisle I could find for stockings, books, and foods for several weeks before Christmas to keep in our budget. We were going to forego the main present for each child except the baby (who accidentally ended up with 3 toys I got for a bargain on Marketplace). But someone must have put us on some Sub for Santa-like list, because we were unexpectedly gifted a few things that made the Christmas the largest one our family had ever had. I was so grateful for the generosity and thoughtfulness, but even then I was feeling deflated knowing that Christmas 2025 was going to look very meager after that. We would have our little Thanks-Christmas-Giving, and that was it. No full stockings, no charcuterie, no personal foods, no presents from siblings (that one really hurt).

I had prepped Monkeys 3-5 for several months that Christmas would be small and that was ok. That we would watch lots of Christmas movies together and go find our free adventures like we usually do. 

That Christmas would be peaceful, focused on family and the Savior. As it should be. They were perfectly fine with that. There was no whining or begging, not even wishing (especially after hearing their older siblings talk about the wish lists they made at their other house). They were happy with the family time and that meant a lot. But I as a mother couldn't help but feel like a failure. I know I'm not. But that's what was happening.

Just before Thanksgiving, our very dear family friend who has been through "all the things" with me and us these last few years asked if she could provide a Christmas on actual Christmas for us. I thought it might be stocking stuffers and a present for each child--pretty much what one of 2nd Christmases would usually look like. I agreed. And while I missed not thinking out and planning Christmas for my family as I usually have, I also realized for the first time that even our small Christmases could be a bit stressful for me to execute. I was given the gift of a NO-stress Christmas which I never knew I needed. Plus there was the excitement that I had no idea what anyone was going to receive, including myself! This has not happened in almost 20 years.

As we spent the holiday season between Thanksgiving and Christmas watching dozens of Christmas shows and movies, we enjoyed an easy time together. Hardly any arguing. Lots of laughter. Lots of resting. No doctor appointments. Very few falls. Relaxation upon relaxation. It was heavenly peace, truly. Then a lady from church gave my kids gingerbread kits to do--something we've never done before and had a blast with.

 Then I had the idea that even though we couldn't do neighbor gifts like previous years, we could make our own Christmas cards for the neighbors. The kids enjoyed using our craft supplies and then handing the cards out. 

Then 3 anonymous gifts were left at our door among our sweet neighbor and family gifts. These anonymous gifts enabled us to pay some medical bills and renew a family pass to a venue we have come to love from a Christmas present last year but were sure we would have to let go.

On Christmas Eve, our own personal Santa came with her elves to deliver Christmas to us. And did she deliver! Her whole family had ended up jumping in to help out. They gave us overflowing stockings, the foods as per our traditions and then-some, several presents, and even the Charcuterie. 

I thought last Christmas was big by our standards. This Christmas was astounding. They were so incredibly kind and generous, and our Santa-friend planned the whole thing out. She told me that she really enjoyed being able to plan it all (I completely understand that feeling). It was uplifting and humbling. It was a joy to see what everyone received because it was as much a surprise to me as it was them. 

And even more so where it came to my presents. It took several years before my husband noticed there was nothing in my stocking, or that I only opened one or two presents and they were usually what I had gotten for myself. He took more initiative after that, but I will be honest that over time he has become so-so when it comes to giving presents. (I chalk it up to the declining health, honestly.). 

*Side Note: Last year I told him my present to him and his present to me was that I was going to give a concert for him. It took almost 11 months, but in early November I sang a slew of Broadway songs for him as I stood on the church stage in my old college choir dress. The concert was full of flaws and wasn't as elaborate or practiced as I would have liked. But I had the joy of singing/performing, and he had the joy of listening/watching (because he really does like to--I didn't force that!)*

Having an entire stocking plus several presents was something I hadn't experienced since living at home with my parents. It was unexpected, joyful, and fun. And seeing my husband and Monkeys 3-5 experience the same just had me overflowing in all the good emotions. 

It's not in the gifts. It's not in the receiving although that was pretty amazing. It was the love and thoughtfulness from so many others. I didn't want the holidays to go by without me writing down about the generosity of others that made this one of the most special Christmases. There were times I didn't want to bother with the tree or other little Christmas traditions. But I knew it was important to our children to continue making joyful Christmas memories while their father is with us, to hold us through in future Christmases when we will miss him being a physical part of our celebrations. The youngest may not remember it much. But I believe Monkeys 3 and 4 will remember this Christmas that was made possible by so many others, especially our personal Santa and her elves. 

Oh--and what did we do from Christmas through New Year's? Aside from enjoying our Charcuterie for 5 meals? And daily drinking my husband's favorite Wassail? And eating so many different snack foods whenever we felt like eating and Mum didn't have to cook? We watched Doctor Who. Lots and lots of Who. Several Christmas specials plus 3.5 seasons! It was glorious. We all loved it. The youngest has been flying toy Tardises around ever since. All 3 kids have been playing various pretend games that involve Whovian villains. Each one keeps saying they want to be the Doctor for Halloween. Mon Amour and I talk about our first experiences with those episodes and what they mean to us now. We're Whovian nerds and proud of it.

How Have I Lost It: Let Me Count the Ways

 It's the holidays. I've heard many times this can be a hard time for those who grieve. Didn't understand until my brother died 3 years ago, a week before his Christmas birthday. By the next Christmas--two years ago--my sister-in-law had also died. Last year we had a diagnosis for why Mon Amour was struggling physically and adjusting to what that would mean while we hoped we could get genetic testing to find more answers. We have been blessed to receive answers no matter how dire those answers seem. I've had several comments on how well we are "taking all this." I "take this" because of my faith and beliefs, particularly in my Heavenly Father and His Son, my Savior Jesus Christ. But I'm not always taking it well.

This has definitely been a difficult season for me this year. Not just a season. The last 7 months. I hold on to the many blessings we have been given physically, spiritually, financially, medically, and intellectually. We've been able to settle some things. We have learned lots and still have so much more to figure out. We have had family experiences. We have had many laughs. We have talked about death, eternal life, connecting with loved ones beyond the veil, resurrection. It has been incredible.

But it has also been hard. I blog to get everything out. That includes the good with the bad. Many years ago during some then-hard-to-me trials, I chose to develop a Pollyanna personality that tried to find the good. Something that I could be glad about or more particularly grateful for no matter what my situation. This mentality/habit has pulled me through many years and lifts me through these hard times as well. But I don't want people to only see my Pollyanna side. Because it's not always bright and seeing the positive. If you want to see my true grief and coping, then I will share the down times, too. Not for pity but for understanding and for honesty. In case anyone has a hard row to hoe, you will know I've had my own. And I've done it with plenty of tears and complaining as well as peace and enlightenment.

So today I thought I'd give a quick list of a few times that I completely lost it emotionally this holiday season. Some lasted a couple minutes while driving. Some lasted several minutes in my room or in the garage. A few were in front of the entire family because I couldn't get to a private space. The worst may have been for a solid half hour in front of my whole family as we were parked in a Target parking lot. (Sorry to whomever was in the car next to us.)

*the kitchen got messy again after I had worked so hard to keep it clean

*while trying to get the kitchen back to a decent cleanliness, I cut my left index finger very badly. A combo of stress and low sleep, I was scream-sobbing on that one as I couldn't get the bleeding to stop and then got woozy. It's been weeks, the cut has healed, and the finger still hurts. I keep wondering if somehow I channeled all the emotions of that moment into that finger.

*while trying to figure out formatting for calendar labels for next semester's workbooks. 

*thinking I had accidentally thrown away a gift card we were anonymously given and wondering how we were going to handle groceries for the next month without it. I was overwhelmed with the needs of my family while feeling irresponsible and unworthy of others' generosity. It was a huge low for me. (I found the gift card later and said a few prayers of thanks.)

*on my way to and from the bank to handle, yet again, figuring out bank account(s) to deal with Survivor Benefits for Monkeys 3-5 as well as myself. The frustration of that was nothing compared to the dread that wanted to fill me from all things financial these days as well as the persistent feeling of always being alone now

But my Pollyanna nature has to end on a positive: I don't think I cried at any of the plethora of Christmas movies/tv we have watched as a family all season. Not even "It's a Wonderful Life" or our Dr Who specials. Ones that would usually get me, didn't get me. Maybe because I was cried out by the time we got to them. But, as my goal states on my Finch app: Allow myself to feel my emotions without judgement. I feel no shame or embarrassment (except maybe for the neighboring car in the Target parking lot) over my many crying outbursts. They were needed. They were cleansing. They were honest. They help me to keep moving on.

A Year Since THE Fall

 As we go through our usual family fall activities of a pumpkin patch, costumes, Trunk-or-Treat, I remembered that Mon Amour had his fall a year ago. A year ago today he was having maxillofacial surgery. Sitting there, waiting for him, it was hitting me very deeply that our family was forever changed in its direction and future. We are so blessed a year later to have all the answers that we do, even if they aren't the most pleasant. But as I'm caring for 3 sick family members and steeped in personal stresses, currently I'm just so worn out. I love having the family traditions of fall, even if we've had to adapt some of them. My life is full of many positive things and I make sure to acknowledge them and hold on to gratitude. However, I am also realistic and know the need to be in the emotions that want to be felt as well as how stressful things take time to be worked through. I'm taking the family sickness to slow us all down for a bit and just have a few lazy days watching Halloween movies and shows together.