Strategies to thrive for when life sucks

Life with Eloise is an absolute and utter joy. Until those days when it isn’t.

Like the last few weeks, when our happy Eloise became a barely-napping, barely-eating, always fussy baby from the dark beyond.

Like Tuesday, when her seizures started again after a glorious, seizure-free February.

Like Wednesday, when she wouldnt take a single nap.

Like a few minutes before I typed this, when Eloise screamed bloody murder after we gave her the new anti-seizure medication.

These times have not been Brian nor I’s best moments.

Am I complaining? No. Okay, well, maybe, yes a little. But that’s not the point.

During life with a kid who is profoundly disabled and medically complex, unpleasant surprises are going to keep coming. And there’s absolutely nothing we can do to stop them. We love this munchkin, and we will do everything we can to give her the best life possible. But Brian and I both agreed a long time ago — we aren’t going to sacrifice our mental health or relationship over the altar of Eloise.

A long time ago we resolved that we will find a way to take care of this kid and take care of ourselves and take care of our relationship. And it won’t just be a life of barely surviving. We have to figure out how to thrive while we do it.

It just may take us awhile to figure out how to make it all work. But the good news is that we really are getting there — we’re already doing better than we were a few months ago. Yet we still have a long road ahead of us.

In the meantime, it seemed like it was time to update you about our progress on that journey.

This is part 2 of our blog from several months ago — Time to re-learn teamwork.

Starting to find our groove

A few months ago I said Brian and I needed to re-learn teamwork. Our entire marriage we’d made sure neither of us were doing the tough stuff alone. But along came Eloise, and Brian and I realized we weren’t working together anymore — somehow, we were working in shifts. And that made us feel like we were left to face the hard things alone.

That wasn’t okay. Long term, we could see how that would build up resentment. I could imagine our future conversations,

“You abandoned me when I needed you the most.”
“What! How could you say that!?! No, YOU abandoned me!”

We’ve been told by more than one professional that parents of kids with disabilities have a higher divorce rate.

Man, y’all, it’s easy to see why. The stress of this life sometimes is NO joke.

It.

Is.

Hard.

Yet still, just yesterday I looked at Brian and said, “You know what? Every month we get better and better at doing the non-Eloise-crisis-stuff.”

He agreed.

We’ve realized that managing all of this kinda fits into a few different categories

1. Eloise care
2. Handling routine chores
3. Filling our cups
4. Hacks and coping strategies

1. Eloise care

The first thing Brian and I nailed down a few months ago was our daily rhythm of who handles what with Eloise (at least while both of us are still at home — which will change in a few months).

At first we decided we’d try out Brian being the main Eloise caregiver during the day and me doing most of the other “stuff.” We had planned to then switch roles to try it out the other way, but within a few days we realized the arrangement was working really really well — and decided to keep it as it was.

Here’s kinda how we do life with Eloise things right now:

• Mal: Middle of the night feed This arrangement has never changed. Brian cannot hear Eloise at night, and I still need to pump once anyway, so I feed Eloise solo and pump when she wakes up at 4 or 5 in the morning.
• Mal & Bri: Morning wake up We used to alternate one of us taking care of Eloise one morning, and then the next day we’d switch so that the other of us could sleep in. But doing all that stuff in the morning by myself made me especially feel overwhelmed. So we decided we’d share the load. When Eloise wakes up, we both get up. I get out of bed first and make Eloise’s morning medications while Brian wakes up by snuggling with E. Then, after Brian is done giving her meds, I take over and feed her a bottle while I pump and Brian empties the dishwasher and drinks his coffee. Teamwork feels far better than what we were doing before.
• Bri: Daytime caregiving & dishes Brian does better when he has just one big task to focus on — which, in this case, is Eloise. And our dishes throughout the day. He’s responsible for E’s diaper changes, getting her to sleep, feeding her, playing with her, and doing her physiotherapy exercises. Sometimes, though, if it’s been an especially rough day or week (which has been a lot, lately), then I take Eloise for bits of time throughout the day as he needs a break.
• Mal & Bri: Schedule and therapies When Eloise is not protesting naps from tooth pain, we have a pretty set rhythm. Wake up in the morning. Brian gives her morning meds. Mal feeds her a bottle. Then, while Mal finishes pumping, Mal does occupational therapy with Eloise by using various toys and textures on her feet and hands. Brian then takes her potty and takes over for the day. Eats solids. Takes a nap. Wakes up. Does some physiotherapy. Puts her on her potty chair and changes her diaper. Eats some milk. Plays using a little therapy. Eats some food. Plays. Takes a nap. Repeat.
• Mal: Errands/chores I do better when I have lots of different things I can be doing, and the freedom to switch what I’m doing all the time. So I do all of the grocery runs, therapies coordinating, doctor contacting, online ordering, food making, community building, writing, and decluttering around the house. I try to set some basic goals for each day on our whiteboard.
• Mal: Evening Eloise After my evening pump, Brian hands Eloise to me for a bit of a rest for himself. I finish up giving Eloise dinner, get her changed and ready, and then put her to bed while Brian cleans up the day’s dishes.
• Mal & Bri: Day off We both do better if we have one single day off. It’s a luxury most parents don’t get, we know, but right now while we can do it, we are. So on one day, Brian does all household chores and everything related to Eloise from start to finish to give me the day off. The next day we switch and he gets the full day off.

So that’s how we deal with the day to day Eloise stuff, but there is still so much more that needs done.

2. Handling routine chores

We quickly realized that we have little to no control over whether Eloise has a good day or a bad day or a seizure comes and ruins everything. But what we do have control over is the daily chores that need done outside of it. So if we can get systems in place and get those working well, then it’s less stress we have to face when Eloise is struggling.

We haven’t solved it all, but we’re working on it. Our goal is to get to a point where we don’t really need to think about any of the following — everything’s already planned out and working like a well-oiled machine.

• Dishes Brian unloads the dishwasher early in the morning. We both try to keep loading it throughout the day. When Eloise goes to bed we wash the first load of dishes and pump parts. Then do one more load overnight.
• Everyday cleaning At the end of each day, after Eloise goes to bed, Brian and I both try to clean up and pick up our main space in the hour or two before we go to bed.
• Deep cleaning We gave up trying to figure out how to make deep cleaning work, so we gave in and finally paid some lovely humans to come and vaccuum, mop, dust, and wash stuff up for us.
• Physical exercise Brian has figured out a rhythm here, I, on the other hand, have not yet. We rent a rowing machine for less than the cost of a gym membership. Brian rows for 25 minutes during one of Eloise’s naps. And he has fitness bands that he uses for his arm and leg muscles during the time Eloise sits on the potty.
• Trash Whoever notices a recycling bin is full takes it out and puts it in the entrance way. When I head to town for weekly errands, I bring it with me and drop it off at the recycling spots on the way.
• Laundry On Mondays I wash and dry everything (Estonian friends, we made a very American investment and bought a dryer — it helps!) and throw the clean stuff on our couch. I aim to have it all put away by Wednesday.
• Grocery list We have a shared trello board as a mobile app on both of our phones. If we run out of something like toilet paper or diapers, we just add it to the groceries board and I use it to shop when I make my store runs.
• Longterm “To do” list On the same trello app, we have several lists for things like house projects or stuff to talk with doctors about, etc.
• Weekly “To do” list We have a whiteboard up on our kitchen wall where we have days of the week separated out. I come up with a general plan of what I’m going to accomplish that week and put it up on the board, usually on Sundays. If Brian or I remember something that needs done, we add it to one of the daily lists for the week. Anything that doesn’t get done we carry over to the next week or erase it completely.
• Meal planning We haven’t really figured this one out yet. I feel like we’re constantly trying to figure out what to eat, when to make it, and if we need to just fall back on frozen pizzas. This week we’re going to try a service that has all the ingredients and portions prepared for different recipes and see if that works as a solution. Until now I try to make large batches of food when I do cook, and freeze a part of it so we always have something to eat that’s ready made. And on the same trello app I have a list of what meals I need to make that week and what’s in the freezer we can eat.
• Breakfast We buy oat milk and have purchased a lot of flavored meal replacement shake flavors, so this is my breakfast right now. I can prepare it in the mornings as I get Eloise’s bottle ready and drink it slowly.
• Lunch If I’m watching Eloise, I try to heat something up and eat while I’m with her so I can use her nap times to read and rest. If Brian is watching Eloise, he uses her nap times to heat up his lunch and eat.
• Dinner We both usually wait until Eloise is in bed to heat up and eat supper. Which is later than we’d like — around 8:30 at night — but we haven’t yet figured out how to have all 3 of us eat at the same time.
• Date night Every week during my grocery store run, I pick out something a little special for our Friday date night. Like fried shrimp or onion rings or Finnish rice cakes. Once we get our snack ready, we watch one of the movies we already own — which takes out the pressure to find something new to watch each week. Afterwards, we discuss our feelings and what we enjoyed and the main themes of the movie.
• Bonding Each evening we make sure to pause and hug. Then we tell each other what our favorite parts about the day were. Then we pray and ask if God has any other parts of the day He especially liked — the answers are often surprising and add a bit more sweetness, especially when the day was pretty rough.
• Meds On Sunday evenings I put together a week’s worth of Eloise’s seizure medications and put it in a basket so we always have it ready in the mornings and evenings when we need it.
• Doctor/specialist correspondence We have a physical calendar we keep in the kitchen with all the therapist and doctor appointments written down. So we don’t forget, I try really hard to respond within an hour to any message we get, and pay any bill immediately.

3. Filling our cups

We can’t just be machines that are endlessly productive, ticking things off of our to-do list. Because Eloise needs so much attention and focus so often, that means we’re constantly on high alert. As a result, our bodies produces a bunch of the stress hormone cortisol — which is great on the rare occasion when you run into a lion and need to run for your life. But not so great when you encounter the lion called “Eloise’s surprise pain” multiple times every day for years and years.

Which is we need to do what we can to really make sure that we are using our rest and leisure time to really really fill us up.

Part 1: Doing stuff that makes us feel rested

Brian and I have both made an effort to really pay attention what makes our bodies sigh in relief.

Scrolling social media? Not really.

Watching Netflix? Definitely not.

Listening to podcasts? Sometimes — depends on the podcast.

So we’ve gotten really really picky about what we do with our freetime. To make sure we’re really making the best of it.

For me, the easiest go-to is reading a fiction book. Also, so I don’t have to think about what to read when I finish a book, I’m reading a 16 part fantasy series called “Wheel of Time.” Another thing I enjoy is playing piano and singing musical theater tunes. And the last thing that seems to really restore my soul is painting something.

For Brian, he has picked up airsoft as a hobby recently to tinker with the equipment and get out and get his body moving. Like many guys, he enjoys playing a short list of video games with some good friends. And, on top of that, really enjoys participating in online role playing games. But if he doesn’t have a lot of time, he has a short list of youtube channels and podcasts he likes to listen to.

Part 2: De-stressing and simplifying our environment

Filling our cup goes way beyond just doing things that make us feel good. Because if the house is a mess or super cluttered, then both of us feel stressed. So we know we need to go beyond this.

1. Getting rid of stuff Yes, we are definitely Americans. Our Estonian friends often kindly remind us we have way too much junk (Americans, you’d think we have hardly anything but to Estonians we look like hoarders). Brian and I have been trying to get rid of stuff bit by bit over the last year, but I’m going to do a 30 day online course of reducing stuff further.
2. Making space for creativity Months ago, before Eloise even had her first seizure, Brian came up with the idea to re-arrange our home so that we have a room completely dedicated to our creative endeavors. So we now have a room where I can easily paint, play piano, journal, or put together LEGOS because it’s all right there on the shelves. And in the same place Brian can paint his mini figures, 3D print whatever he wants to, play guitar, and work on his airsoft gear.
3. Beautifying our environment This one is more for me than for Brian, but it makes a huge difference. If there’s something in the back of my mind where I silently scream, “GAH I HATE THIS _____!” then it’s been my goal to change it up. Like the kitchen cabinet knobs that were almost non-functional. Or the coffee mugs that I just didn’t enjoy. Or the orange wall my friends helped me paint light blue. These may seem like tiny, insignificant changes, but they made a huge difference on my mental health throughout the day. Last summer we also made the decision to pay for professional landscaping so that when we looked out of our huge living room window, we could feel a sense of peace.

Part 3: Prioritizing sleep

I would say we’re not the best at this one, but the reality is that on most nights, Brian and I both get anywhere from 6-8 hours. So that’s actually pretty darn good.

I generally try to stay away from computer screens and social media and problems that make me problem-solve an hour or two before bedtime. Basically, from 8pm and on, I usually just read my fiction book or talk with Brian. After my last pump for the day, I use a red nightlamp in bed and read until I get sleepy. Then fall asleep almost instantly by around 11pm.

Brian actually uses his time before bed quite differently than I do. The time from 9pm to midnight is his own rest time where I don’t generally ask anything of him. This is when he really fills his cup — he talks with friends, plays video games, or does roleplaying game stuff. And then goes to bed around midnight or 1am.

Eloise will then wake us both up around 8am most mornings.

4. Hacks and coping strategies

There’s a bunch of other stuff we’ve found helpful that didn’t really fit into any category, so I thought we’d make a list so we can remember — and just in case you need one or two, too.

• Make playlists When I’m feeling low energy, I figured out during one of our hospital stays that if I put on a playlist that makes me want to dance, then things seem a lot easier. (And I DO often dance.)
• Use Trello for keeping track I mentioned before, Trello is an incredible free resource that helps Brian and I keep track of what needs to be done, what’s in our freezer that can be eaten, what we need to to talk with doctors about, what groceries to buy, and way more.
• Follow Lifegiving social media accounts If I am going to be on social media, I want to feel encouraged or build up. So I have an instagram account just for Eloise and it’s there that I have collected accounts that make me feel better. There are a ton of great mental health therapists I follow like Yolanda Renteria, CecileTuckerCounseling, SitWithWhit, or SarahBCoaching. Or kid therapies and advice like Curious Parenting, Kinactive Kids or SensoryProject208. Or everyday life of other disabled kids and their parents like Keep_going_owen, Special books by special kids, Falesha, MarySusanMcConnell or even another Eloise called RemarkablyEloise.
• Grab a friend When there’s something I know that makes me feel good but it’s hard for me to make time to do it by myself, then I have learned that I can ask a friend to come join me. Like friends who came over and went through their email inboxes on the couch next to me as I did a painting. Or others who met me at a nearby park for a nature walk.
• Accept help People offer us help. All kinds of help. Before Eloise, I used to think it made me weak or somehow less of a human to accept it. But now, whenever possible, I like to say “yes!” Because we definitely need it.
• Think of easy snacks and meals I have been building up some easy, healthy meals and snacks for when I just don’t know what to do. Most recently, my favorite lunch has been a bag of frozen veggies, along with “krab” sticks in margarine. And my snack has been just peanut butter.
• Get a good coffee machine When you are low energy, it is so nice to look forward to a really great cup of coffee with a real foamer. Brian and I have a nespresso machine and it is just an incredible investment. Neither of us miss coffee shop coffee.
• Have an “I DID” list While I have a “to do” list like everyone else, I also add other items to it throughout the day that I completed that weren’t on there. So at the end of the day I can see I accomplished way more than I thought.
• Be hospital ready Eloise’s diaper bag we always carry with us has enough supplies for a 24 hour emergency hospital visit — including toiletries and clothes for Brian or I. We also have an actual hospital bag filled with stuff for Eloise for a 2-3 day stay. And then a small bag with my stuff if I’m the one going and a small bag with Brian’s stuff if he’s the one going. So that if we have to call an ambulance, almost everything is ready to go. (Another hack which makes it easier to re-pack once you return home. Everything is in plastic baggies. And all baggies have washie tape labels with what’s in them, so I can re-pack them easily when we get home.)
• Carve out “me” time When I take care of Eloise, one thing I do is to try to do as much of the “have to”s while she is awake — dishes, making and eating my own food, etc. That way I can use her naps as a time to read my fiction book and really take a rest.
• Get rid of clutter Maybe this is obvious to you, and maybe it isn’t, but the less stuff you own, the less stressed you feel. Especially if you get rid of stuff that you feel like wears you down. We’re working on it.
• Community build This actually takes up quite a lot of my time, but it’s been so worth it. I’ve spent a lot of time connecting with like-minded humans, both parents of kids like Eloise, parents of kids with profoundly disabilities, or just great people who love us. They rejoice when we’re happy and grieve when we’re struggling — and it makes us feel way less alone on this journey.
• More life hacks If you’re a worn out caregiver, consider trying Mama Bear Daily. Dr. Mary Susan McConnell is a wonderful human being and mom of a profoundly disabled pre-teen, in that order. The episodes are audio only, fresh Monday through Friday, and are 5-10 minutes long. One of my recent favorites? “Today, any task that you say you yourself, ‘That will take me less than 60 seconds to do.’, just do it.”

Remember that some days are just gonna suck

Some days, some weeks — heck, even on occasion an entire month — I feel okay. I feel like “me.” I have capacity. I can be interested in other humans and ask them questions. I am able to learn something or tackle a big task. I look forward to and even think a little about our future as a family.

And then, sometimes, all that capacity melts away in an instant.

I could be the most physically fit human on the planet, completely unphased when my 1km easy walk suddenly turns into a 40km uphill climb. But if my backpack breaks open and all my supplies spill out into the valley below, I’m not going to get very far.

Those are the days when something goes wrong. Really really wrong.

In those times, no matter how good we are at managing the rest of our life outside of her, sometimes it’s just going to be tough.

Like right now, as Brian holds a crying Eloise with earplugs stuck in his ears because he’s just exhausted from weeks of a struggling Eloise.

But we know that, thankfully, not all days will be like today. Not all weeks will be like this week.

So we just keep plugging along. Trying to figure out ways to make our life easier and more fulfilling and our relationship with one another stronger, so that we have more and more capacity.

We are going to make it. We are going to learn to thrive, even when everything around us falls apart.

Over and out from the Taulbee household,

Mallory, Eloise, and Brian

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