“It takes a village” 2024 style

Back in January, before Eloise’s seizures or GI issues or constant emergency hospital visits even began, we were barely making it. Specifically, Brian was on the verge of a mental breakdown with all of Eloise’s constant needs and pain and issues. Back then, we had some long, tearful discussions and made some big changes.

Our plan to prevent breakdown

Back then in January, I wrote a post about our four-part plan to help:

1. Removing some of the pressure (getting her a feeding tube to help through her times of illness)
2. Not being so alone (me helping more)
3. Getting more outside help (finding regular babysitting help)
4. Making our lives simpler (trying to simplify our lives more, including finding a babysitter for puppy)

What we didn’t know at the time

We didn’t know yet that Eloise would be ill even more often — 10 viruses in 10 weeks at one count.

We didn’t know yet that I would need to learn how to create, maintain, and cook a medical a keto diet essentially without support.

We didn’t know yet that Eloise would be constantly hospitalized — as of May it was 25% of 2024 — so often we would lose count.

We didn’t know yet that Eloise’s seizures would come back with a vengeance — nearly 900 seizures just in March alone — and then go away overnight like magic (basically by accident).

We didn’t know yet that the keto diet might be the trigger for a total gut upset that included constant vomiting and diarrhea and new food allergies.

We didn’t know yet that the kind family that babysat puppy would become his new forever family — because a family without our constant chaos and trauma was a much better fit.

And we didn’t know yet that we would meet Kate a few days later, who turned out to be a perfect babysitter for the kids and a friend when we needed her the most.

How we made it through the last 6 months

They often say, for totally normal kids, that “it takes a village” to raise them. We realized that’s been true for us — but in a bit of a nonconventional way.

You see, multiple kind humans gave us money to help us through hard seasons with Eloise without us asking. And that money, we realized, is what gave us access to the village we desperately needed.

Confused yet? Let me explain.

What a village has historically looked like

Ideally, you live deeply rooted in a community with family and friends and neighbors whose lives are intertwined with yours. They are your village. And, when you need them the most, they can step in to help. Just like you can step in to help them when they need help.

It used to be normal that human beings lived in the same town they grew up in, so their villages were more likely to be well established and include lots of people. However, in modern times with industrialization and the global web to keep us connected, more and more humans are moving further and further from home (like us!). Which means physical villages today are getting smaller and smaller — if people have them at all.

So what about our village?

What a village often looks like in 2024

A modern “village” in 2024 looks very different than a village in 1924 because a lot of our village today is (as you might have guessed) virtual — humans all over the world who have become our tribe.

Take our case, where — online — strangers and friends and acquaintances have chosen to be honorary grandmas and aunts and uncles and friends to us and Eloise. People who pray for us and love us and cheer us on.

You probably have something similar — friends and family who aren’t physically in your same location, but with whom you keep in touch via apps or video calls or social networking sites.

Having a large virtual village is incredible for feeling less alone and for knowing there are people who love you (and, in our case, knowing there are people who love and pray for Eloise). Having a large virtual village is incredible for when you need encouragement or wisdom or ideas.

But what a large virtual village isn’t so great at, is giving actual physical help when you need it.

Which is why we needed to “pay” for access to a local village.

How we “paid” for a village

We are lucky that we have virtual, emotional support. But locally, what a village once provided to those in need — meals, babysitting, laundry, cooking, cleaning — is something much harder to come by. Even for people like us that feel like we have many friends and acquaintances despite not having family nearby who can help.

When Eloise was hospitalized for weeks 2 hours from our home, we didn’t have a large village that could visit or step in. So we relied on paid help for relief.

When I had to spend hours every week on Eloise’s keto diet meticulously networking, researching, planning, calculating, shopping, weighing, purchasing, dividing, freezing, and recording, we didn’t have a local village to watch Baby K. So we relied on paid help for relief.

When Eloise was having so many seizures each day that we thought we might lose her, we didn’t have a local village that made us meals. So we relied on paying for food delivery to make it through the day.

When Eloise kept having emergency visits to the local hospital where she had to stay overnight, we didn’t have a local village of relatives and friends that could take turns staying with her to give us rest. So again we relied on paying for help to get relief.

When I had mountains of administrative work to contact doctors and call therapists and organize funding and track down the right information on forums to figure out Eloise’s symptoms, we didn’t have a village that could step in for a few hours several times a week to take Baby K while I focused. So we paid for help.

And my gosh, as I look back on these 6 months, had we not had the generous finances given to us which ended up paying for everything, we would not have made it. I am fairly certain that Brian or I or both of us would have had a breakdown. And I do not even want to imagine the irreversible psychological trauma that it would have inflicted on Baby K in these early months of his life as he would have had parents unable to be there for him.

You see, in our modern times, when we have a virtual village instead of a physical one, then we rely on paying for goods and services and humans to fill in those gaps that would have been filled had we a physical village.

It’s both incredible that we can actually replace a village with money, and also terrifying for families like ours. Because if we end up in this position again and again of needing a lot of help just to survive (if Eloise’s last 3 years are any indication, then this is likely), then either we need a huge physical village or a lot of extra money.

This year, we were incredibly incredibly incredibly lucky that donations put us in a place where we had money to pay for a physical village during these last months. However, those resources have come to an end.

Losing our village

Last month, I sat down to do some calculations and realized, with total surprise, that those extra funds were nearing an end. I started panicking. Though we have rarely ordered food delivery since Eloise’s seizures stopped, we’d gotten into a rhythm of using the extra money for Kate to regularly babysitt Baby K so I could get things done for Eloise, for Kate to come on the weekends to get Brian some rest from life and kid duty, and for Kate to stay overnights when Eloise was hospitalized. Paying Kate literally saved us from multiple breakdowns.

You see, on the rare occasion that someone asks if they can send us money, we put aside anything sent into an account only used for Eloise-related needs. Yet life had been so chaotic I hadn’t really set aside time to sit down and look at the account. But, as June came to a close, I finally sat down to make some calculations — and I saw there was no possible way to continue as we were. We had some money left, but the year wasn’t done and Eloise had therapies and medicines and very likely emergency hospital visits still to come. We needed to reserve the rest for emergencies.

I freaked out, realizing we could no longer pay Kate to regularly come babysit. I cried.

“No, there’s no way we can lose Kate. She loves the kids and they love her. I want her in their lives. I want her in OUR lives.”

I started wracking my brain for where we could find other money. If we should use savings or the money we have set aside for finishing the house (which was not originally intended to be lived in year round) or fundraise or if I should start getting creative and see if I could somehow generate additional income while still caring for Baby K fulltime.

And that’s when it hit me.

I was sad to lose Kate because Kate — even though we’ve paid her for her time — had become the closest thing we had to a physical village.

Ripping off the bandaid (or plaster 🩹)

Brian and I took a long walk one night shortly after I’d realized our money was nearly gone. We talked and talked and I cried and cried.

Running out of money meant losing Kate as a babysitter, which, in turn, made me feel like we were also losing our village.

So we talked and talked and talked some more.

I realized, in some ways, having Kate regularly babysit meant that we’d gotten too reliant on, well, Kate.

If Kate could help me get time to do stuff for Eloise, if Kate could help Brian find rest, if Kate could help take nights during Eloise’s hospital stays so Brian didn’t have a breakdown, then we’d stop looking elsewhere for help. We’d stop searching for new people to add to our village. We’d stop brainstorming creative solutions Brian and I could handle ourselves. Because Kate WAS our help, Kate WAS our village, Kate WAS our solution.

So we decided that maybe, just maybe, running out of money was an opportunity. It was our time to rip off the bandaid and see if we could make it another way. Maybe we’d find creative ways to watch 2 screaming kids without Kate regularly coming to rescue us. Maybe we’d find there were more people who could help when we needed it if Kate wasn’t there.

I’m both terrified and curious of those thoughts.

So, what now?

Well, first, Kate has actually only been “gone” for less than a week so it’s still too early to know much. 😝

Second, we agreed we can still afford Kate to babysit twice per month from Brian’s salary because the kids love her and so do we and we want them to continue to know her as they grow up.

And, third, we decided we want to try to figure out how to incorporate Kate into our village as a friend rather than paid help (Also, I have a feeling she may still need to rescue us more than once when virus season comes back in full force and Eloise may need to be hospitalized again. 😅)

But, really, ultimately we need to begin branching out again — cultivating our friendships and acquaintances here in Estonia that we haven’t made time for in the midst of chaos. Like this last weekend we had our very first grill and chill on our new deck and invited our near neighbors — most of whom we had never really spoken to. Those few hours were just the start to some new friendships I am guessing. For example, as I type this, a 13-year-old girl (who is very mature for her age) who lives across the street is watching Baby K for a few hours so I can get things done from the newest set of renovations (and finish this post I started a month ago).

Sorrow and joy together

As I reflected on these last months, it reminded me of the movie Inside Out (the first one — I haven’t had time to see the second.)

Our greatest times of trauma can also be our greatest times of comfort. Because, yes, these months have truly been full of so much pain and trauma for all of us (that hasn’t quite ended). But I also look at these months and feel an enormous amount of gratitude for the people who have helped us — like Eloise’s babysitter Kadi, like Kate, like the kind hearted humans who freely gave us money, like the hundreds of humans all over the world that truly care about Eloise and pray for her and love her as if she was their own.

So if you’re here in Estonia and you want to become part of our physical village, we are always happy to expand our network of wonderful humans to include you.

(Speaking of village needs — if you live in Tallinn or Viimsi and know someone who is a trainer, we are looking to find someone who can come to our home for an hour or so and help show Brian and I how to best strengthen our bodies using weights and exercises and a few machines we have in our home. Because we’re starting to really notice that having to constantly lift and carry Eloise and Baby K is beginning to wear down our bodies, so we need help knowing how to best care for ourselves physically so we can be there for the kids longterm.)