Time to re-learn teamwork

I was going to write our 45 weeks update but this became something else.

Back when Brian and I got married 14 years ago (yes, we’re old) we had this thing. If there was a chore neither of us wanted to do, then we did it together.

Dishes? Together. Laundry in the dark smelly basement? Together. Cleaning the bathroom? Together. Taking out the trash at night? Okay, well Brian did that. But we did things that way so we didn’t build any resentment towards the other — we decided, if we could help it, we’d never do stuff we didn’t want to do alone.

I think that’s a huge reason why our marriage has been such a joy. It’s because we worked hard to keep our relationship with one another healthy.

Doing too many things alone

One of the things we’ve been discussing recently is that, over the last 10 months with Eloise, we’ve drifted away from that concept of doing the tough stuff together. We talked about the fact that, out of necessity, we started doing things separately. For example, I started changing my diet back in March to help control Eloise’s reflux because of her food intolerances. So November was the first month Brian and I could start eating the same things again.

What it’s meant in practice is that there are way too many moments now where Brian or I or both of us feel overloaded, underappreciated, and alone. Because we’ve been stuck doing hard stuff by ourselves — laundry, bills, dishes, meals, you name it.

A day of alone-ness

An example of what I mean by saying we often feel alone.

It was my day to wake up with Eloise. When my alarm went off, I woke up, put on my pumps, made my coffee, woke Eloise up, fed her anti-seizure medication, and warmed up and fed her a bottle — all in the first 30 minutes while I still was half asleep. And pumping. I had planned on also eating something myself, but gave up trying to microwave my own breakfast because it felt like too much. (I secretly hoped Brian might wake up a little earlier than he’d planned so he could heat up food for me, otherwise I would eat when she had a nap in 3 hours.) After I completed all tasks but eating my own breakfast, I gathered Eloise’s clothes while holding her and then took her to the bathroom to change her diaper and use her potty chair. Afterwards, I needed to put together her meal of solids consisting of frozen baby puree cubes, so I put her on the floor. Within minutes, she started crying. I picked her back up and tried to hold her while I weighed out her food, logged it in her book, and warmed it on the stove. She was not happy about this arrangement and the more fussy she got, the more stressed I felt. That was a lot of stuff to do by myself.

Brian had stayed up late the night before to get some time in with friends online, so he appreciated the extra 1.5 hours of sleep. But he woke up at 10:00 anyway, as per our agreement to always get out of bed by then. Once he woke up, he got dressed and immediately started unloading and re-loading the dishwasher because there was a pile of pump parts waiting for him and he knew lots of dirty dishes stresses me out. That wasn’t a fun way to begin his day. And he did it by himself.

I put Eloise to sleep. After doing dishes, Brian went to go respond to a few important emails from people who were waiting on us. Once Eloise woke up, Brian got her up and took that shift.

Brian tried to get Eloise to do physiotherapy after her nap but it didn’t work. Eloise started crying as soon as he put her on her tummy, and her other exercises didn’t go much better. Brian started thinking about the long-term consequences of Eloise not doing exercises. If he failed, if we continued failing? He felt the weight of responsibility on his shoulders. When he tried to give her a bottle later, that also went poorly. Eloise has all the signs of yet another tooth coming it, when means we are probably in for another 2-3 weeks of fever, tooth pain, poor bottle eating, and probably seizures. Brian worries she isn’t eating enough and wonders how that will affect her growth. That’s some heavy stuff to feel alone in.

Meanwhile, I began to make an inventory of what food we had in the fridge and freezer. I felt overwhelmed at the thought of making a meal plan for the week, but it had to be done because we had an order of frozen baby food coming for Eloise and needed to make space in the freezer. I made the decisions around what we were going to eat, made our grocery list, and went to the store by myself. And then faced the big task of making food and cleaning up those dishes when I got back to the house. I wished Brian was helping me chop food or do the dishes or put away the food after, but he was busy. That was a lot of stuff to feel alone in.

You see, we’ve been alternating who does what with Eloise and with chores that need doing, but it still means we are just alternating being alone. And that sucks. It’s not what we’re used to.

Can’t we just do it all together?

Sometimes I think, “Everyone struggles with babies their first year, yet they all figure it out. We should be able to do some of this stuff together, as a family — all three of us — shouldn’t we? Two parents at home should make it a whole lot better. I mean, she’s 10 months old, so things have to be getting easier, right?”

That sounds so logical. Until I start looking at the logistics of our life.

Let’s take meal times as an example.

The good news is Eloise is eating the same quantity of solids as a normal 10-month-old (though let’s not talk about milk). So that’s one thing that’s going well.

However, unlike her peers, she can’t just sit in a chair and feed herself — we still have to spoon feed her every bite. Maybe there are some kids that are similar at this age, but I would assume their parents can expect that within a month or two, though, the kid will be at least feeding themselves part of the time and that will give the parents some rest. Yet we have no idea if (let alone when) Eloise might ever be able to feed herself. Some kids with her deletion are able to self feed (though I have the vague idea that they weren’t able to until much later, like around age 4 or 5). Some kids with her deletion are unable to self feed ever (not to mention many kids with her deletion are tube fed). Which means, right now, if we want to eat “as a family” it means one of us has to make or heat up a meal by ourselves while the other one cares for Eloise (she’s in a phase right now where she doesn’t tolerate being put down very well). Then, once the meal is ready we can feed Eloise with one hand and feed ourselves with the other so we’re eating “together,” but, honestly, that’s exhausting. Plus, if she’s distracted she might take a whole hour to eat.

Also, many babies by now can just eat the food their families are eating at mealtimes — but cut up into smaller pieces. Unfortunately, we aren’t there yet. While Eloise has been able to handle chewing on a banana or eating chunks of mandarin oranges without the membrane (which makes me feel so much relief), 95% of her food is in puree form because she hasn’t developed the chewing abilities for textures like puffs or cookies or bread. And we have no idea if she ever will. Besides, because of her size and low milk intake, we have to give her high calorie foods like oil, egg yolk, and meats at every meal — which isn’t what Brian and I are eating. Even if our meals were the right type of food for Eloise, though, neither of us have the energy to puree our meal to make it for her, and then clean up the mess after.

So, right now, all three of us eat separately. If we’re the one taking care of her, we try to sneak in our meal whenever she’s asleep or ask the other of us to take care of Eloise while we eat.

It’s a lot. It’s exhausting. And it’s just one of many tasks that we’ve been flying solo at for awhile that adds up to feeling more alone.

This week had been rough

Add on top of feeling alone the reality of a week that was tough and it just makes everything a bit worse.

There’s been a lot of vomiting. (She definitely has been sick with something.)

There’s been a lot of crying. (She’s been in so much pain that several times she couldn’t help but scream for nearly an hour.)

There’s been a lot of seizures. (Most days this week she had around 5.)

But, still, thankfully, there’s also been a lot of joy or we wouldn’t have survived.

Everywhere I look, it seems like way too many parents of profoundly disabled kids like Eloise are just barely hanging in there. They are stressed and worried years later and, often, their marriages don’t survive.

That cannot be us.

We have to figure out a way to, sustainably, take care of this munchkin and ourselves and our relationship — all at the same time.

I don’t know how we’re going to do it, but we’ll have to figure it out.

There has to be a way

When we hit a patch where life is tougher than usual, Brian and I always draw nearer to one another. We talk and talk and talk and talk and brainstorm and pray and talk until we figure out a way forward. Until we figure out how to live life in a way where we both win. Where we both wake up for the day excited for what’s ahead. Where we are satisfied with how we are treating one another.

So I know we can figure this out. Just, with the stress of seizures and figuring out again how to do life together while taking care of munchkin and her high needs, it might take us a little while.

Always the relationship optimist, Brian says it’ll only take us a day or two.

I hope he’s right.

Hug your loved ones tight for us.

We’ll let you know as we figure this stuff out.

All our love,

Slightly overwhelmed Mallory, Brian, and still sick Eloise