A big change in our lives

“Your job is to find the biggest, most important problems. And solve them.”

I’m Brian. Eloise’s dad.

I work as a product manager at a pretty great company. I often get asked what that actually means and, to be fair, I didn’t have a clue until I started working at my last company that had the role. But if I had to sum it up, it’s what I said above. Find the biggest, most important problems. And make sure they get solved.

“What problems?” You ask.

It doesn’t really matter what the problem is — nor the people or tools needed to solve it. The biggest priority is just to do whatever I need to do to make sure the problem gets solved. Which is why, over the last few years, the question I’ve learned to ask myself each day to prioritize my work is, “Am I solving the biggest, most important problem today?”

There have been dozens and dozens of times in the last four or five months that I’ve been sitting in our home office — on a work call, for example — in the room next to Mallory and Eloise. And, as I participate in yet another zoom meeting, I hear Eloise wailing and choking from reflux pain while Mallory sobs as she’s reached a momentary end of what she can handle.

In that moment, I want to run to them. I want to close my laptop, say goodbye to my co-workers for the day, drop everything I’m doing and just go be a husband and a father and work on those problems.

But, of course, I have a job, and that’s important. I need to pay the bills. I need to keep my career going. I need to make sure we have more than enough every month so we can save away for that possible upcoming disaster, needed gadget, unexpected miracle therapy, or maybe even Eloise’s fulltime care in the future. So I’ve had to take a deep breath, try to disconnect myself from the troubles of the two most important humans in my life that are struggling in the next room, and “go back to work” mentally.

It’s been rough.

Because every morning and every evening after work, I take what I call a selah. A selah is a word used in the Bible that denotes something like a pause, a rest, an introspection. And that’s, essentially, what I do.

During my selahs I usually make a coffee, go outside in our back yard, settle myself in our hammock, and be still for 10-15 minutes. I’ve found that it really helps me function. But, over the months, as I’ve laid there, staring up through the trees, listening to the birds chirp (and sometimes the neighbors mow their lawns), I often ask myself that most important, product manager question: “Am I solving the biggest, most important problems?”

Sadly, for awhile now, the answer to my introspective question has been a resounding, “No. But…”

I have an internal war going on and it feels so wrong. I hate it. As a dad, as a husband, as a product manager — all of my instincts are telling me that this is not right. That ignoring the biggest problems of the two people who are the most important to me in the entire world is just wrong.

If you read the post from Monday about everything she’s juggling, you’ll probably realize, as I have, that Mallory can’t sustainably shoulder as much of the Eloise care burden as she’s had to so far. She can’t do it all. Which means, as it stands right now, we’ve got to give up something — Mallory’s mental health or one of the many elements of high care we want for Eloise. Or get really really aggressive about finding the perfect unicorn person in Estonia to help us fulltime — and prepare for the bill that follows. And, honestly, I don’t like any of those options.

We have so many really big problems to solve right now. Problems that we wouldn’t likely worry about much — if at all — if Eloise was a typical baby. (Seriously, we wouldn’t. Neither of us is generally the type to worry.)

• Reflux pain / Diet We’re still trying to figure out Mallory’s diet so that Eloise can consistently eat without reflux pain. We’ve come a long way in the last few weeks, but the pain is still there from food intolerances. Not to mention figure out an amount of or balance of food that Mallory can eat that will stop her daily weight loss.
• Weight gain Kids in Eloise’s deletion often have trouble gaining weight and growing, and Eloise is no exception there. But it’s so hard to know what’s in our control, what’s “normal” for her 2q24.3q32.1 chromosome deletion, and what isn’t. And fix what we can.
• Feeding troubles I know Mallory has written about feeding difficulties a lot, but it’s another one of those things that maybe, just maybe, if we find the right specialist or person with experience, we might be able to make a difference.
• Introducing solids To make Eloise’s food intolerances more complicated, we’ll need to add solids to that mix. Do we introduce low-allergen, high-allergen, or gut-healing foods first? Or do we just go with Mallory’s current diet and mash that up? Is there research that shows we need to wait a little longer than 6 months? The answers are out there, I’m sure of it.
• Gross motor skills Consistently doing physiotherapy with Eloise, and the right exercises, may move up her mobility — like walking — by months if not years. We’re still quite a bit on our own on figuring out what we need to do to really support her there.
• Potty skills We need to decide how best to proceed with potty training her because starting now with something like elimination communication could possibly be the difference between her wearing diapers for all her adult life or not.
• Communication skills We need to figure out what’s the best communication language to start her on. (Baby sign language? Makaton? Assisted devices? Some Estonian version of any of these?) And learn it ourselves. And then model the heck out of it for her. Probably starting yesterday since it will be a long, uphill battle.
• Community We can’t do this alone, so we need to start and continue building a community of typical families and special needs families around us not just for moral support, but to help us with their knowledge and network for our tough issues. Mallory’s been doing as much as she can of this already. Through this blog, the facebook group, and through online groups.
• Seizures Mallory and I have already done a small bit of online research/training to make ourselves aware of the type of seizures and what needs to be done for each one, but it’s only the tip of the iceberg. We need to have an action plan (like what medicines are most likely to work, who times while the other calls the ambulance, etc.) for when Eloise starts having seizures, because, from what limited information we have, there are no kids so far that we personally know with her chromosome deletion that have not had seizures. Which means, likely, it’s only a matter of time. We can be proactive, or reactive. And this is a topic where I’d rather be ahead of things than behind.

These are all huge problems — some more solvable than others. But they really do feel like the most important problems I can be solving. I’m a product manager — problem-solving is what I do. I mean, clearly. It’s my kid we’re talking about here.

Can I solve work problems during work, and these other problems in the evening and on the weekend? Well, technically, yes. But, in practice, it’s not that easy.

By the time I’m done with work, my brain power is just done. I love what I do, but my role is pretty intense. So, at the end of the day my brain is mush. I don’t have the mental bandwidth to sit down and look at complex problems or big data sets like all the food Mallory has eaten for the last 3 months with all of Eloise’s symptoms correlated to them. I mean, seriously, I used to be an analyst. It was my job for awhile to dive into datasets and find answers. This should be my specialty.

Even if I did have the mental bandwidth, I just really don’t have the time after the almost constant meal prepping for Mallory and me (separately), pump part cleaning, grocery store runs, and various other household chores. (Thankfully, though, we’re starting to find people we can pay to take some of these things off our plates). And, of course, I’d like to hang out with Eloise, too, and give Mallory a break.

Which means most days Mallory carries the mental weight of solving these incredibly important problems alone. Just because I don’t have the mental space to lend a hand.

It kills me.

As I started a couple of weeks off of work for much-needed vacation, a few thoughts occurred to Mallory and I.

1. This year is hugely important It’s the most important year of Eloise’s life, developmentally speaking. A lot is at stake for her quality of life — and, by extension, ours. What we decide now could be the difference between her having a few words or none, being potty trained for life or not, being able to walk at 7 or walk at 2, being able to communicate with the world around her or ignoring it altogether. If we skip some things because we don’t have the mental energy or time, that could mean a huge difference in a negative way for the rest of Eloise’s life. Conversely, if we make the time and do the research and the work with her, that could make a huge difference for Eloise’s life in the positive.
2. I really need to learn Estonian sooner rather than later If I don’t take some focused time to level up my Estonian, Mallory will always have to bear all of the burden of communication with doctors, teachers, helpers, etc, in the cases when English isn’t an option. Not only is that not fair to her, but I think being able to speak to Eloise’s future caregivers in their language might make a world of difference for her care, and our relationship with them. With all the extra help Eloise needs day to day, though, I cannot see myself having the time and space to learn Estonian in my freetime if I’m working a full time job.
3. We can live on less money Until this point, we’ve been fortunate. Between two incomes and help from so many of you all, we’ve had more than enough. But we can put some plans on hold. I can not get a redbull every time I go to the grocery store. I can make meal plans in advance so I don’t order in. We can do a little more research and be smarter about what we purchase. We can live on less.

So, even though we’d jokingly talked about it and dismissed the idea over and over again over the past 4-5 months, we realized it was actually a far better idea than we realized. And decided to do it.

I’m going to join Mallory at home. I’m going to take a year off.

In Estonia, either parent can take parental leave for 1.5 years. Which means we can switch the maternity/paternity benefits from Mallory to me, which would enable me to stay home, too, without losing my job. Mallory will continue taking time off, but with unpaid leave for a year (her employer is kind enough to continue to hold her position at work for her.) Yes, that means that, month-to-month, we’ll have a lot less income. But the numbers I ran say we’ll still be okay.

I felt so much relief.

Still, once we made the decision, some parts of my brain went, “But we couldn’t possibly do this, could we?” The American parts of my brain that says I have to work work work and doing anything less is lazy. The career-focused parts of my brain that taking off for a year is career suicide and disloyal the company. The earning parts of my brain that say we can’t afford to lose one of our incomes for a year because, “What if ____ happens?”

But yeah, the answer is yes. Yes, we can do this.

And, the more we thought about it, the more obvious it became that we need to do this — for Eloise and for ourselves.

I can’t think of more important problems for me personally to solve than the ones we face right now. We’re extremely fortunate to live in a country that gives well over a year of paid time off for either parent who wants to go on parental leave. So we can do this. It is possible.

Which is why we will.

Starting August 1st, I’ll be off for up to a year. I’ll still be a product manager, still working on solving important problems that make a difference — but they’ll be problems that will, hopefully, make a massive difference in my daughter’s life. In my wife’s life. And in my own. Which means my dad/husband/product manager heart will be at peace again.

Will any of it make a difference for Eloise in the end? Honestly, there’s no way that we’ll never know. But I know it’ll make a difference to Mallory, and to me.

When we were going back and forth, trying to decide if this was the right next step, there was something that clenched it for me. When I’m on my death bed, looking back on this time, I want to confidently say I did everything I could for my family. I want to say that I worked on the biggest, most important problems — the ones that meant the most to us.

No matter what happens, I want to look back on my life with no regrets.

And me taking off for this year is the only way I know to live in a way that I’m proud of.