Some days we’re barely making it

If you’re thriving in this season I am honestly so happy for you. However, if you’re barely making it day to day, know that you are not alone — we’re there, too.

For many weeks I’d brainstormed ways to get Brian time off. But he’d always refuse any suggestion of rest, saying he wanted to be with Eloise because she wasn’t feeling good.

A few days before Christmas, though, he wrote me a panicked message at 4:30am. He’d started showing symptoms of the virus that sent Eloise to the hospital with him only a few days before, and he was going to need to take off work again and watch her all day because we didn’t have help. He was on the verge of a mental breakdown. It was all too much.

It turns out even super dads have limits.

So the next day we had a long chat and went for a walk (because thankfully we did have help that day). We did what we like to call in the startup world a postmortem.

How did we get here? How can we prevent it from happening again?

As we talked through what went wrong, we realized there were four main things that could help:

1. Removing some of the pressure
2. Not being so alone
3. Getting more outside help
4. Making our lives simpler

So we made some small and big decisions both.

First, we recently learned that Eloise is likely to be ill, on average, once per month for a few years as she builds up her immune system. That’s if she’s a normal healthy kid. While that sucks for all families who go through it, we also saw Eloise is also prone to seizures if she’s dehydrated. And, on top of that, she often stops eating or drinking as much when she’s sick. And when she’s not sick, she borderline gets enough nutrition and hydration.

This put a lot of pressure on Brian (who has been her primary caregiver since Baby K was born). He was constantly fearing the next emergency was around the corner and it would be all his fault — for not getting enough food or drink in her — and then he’d have to bare the brunt of the stress. He’d have to take off work yet again and be with her through her illness or hospital stay. So we had a long, teary chat, reached out to many other families and came to the conclusion that it’s finally time to get Eloise a feeding tube. It will be a backup when she’s ill to get more fluid or food in her. And we’ll be able to use it if she’s in another season where she doesn’t want to take her anti-seizure medications. That will help remove some of the pressure from Brian to always make sure she eats enough, and also will remove the likelihood that Eloise will be hospitalized with dehydration or seizures from dehydration when she’s sick. She will still continue eating by mouth because she loves it when she’s not ill. But when she’s not feeling well, we can always use the tube to help keep her nutritionally strong.

We are so grateful that Eloise’s doctor was able to get them in fast. Brian and Eloise will take all of next week for the surgery.

Second, when Eloise isn’t doing well — which seems like most of the time these months — whoever is watching her really can’t get anything else done because she needs full attention. I, however, can get some stuff done because even though Baby K still refuses to be put down for more than a few minutes at a time, he is usually happy to be in a carrier. So Brian realized a few ways I can help is to prep Eloise’s breakfast the night before. And, also, to start getting up at the same time as they do. That way especially if Eloise is having a bad morning, I can give Brian Baby K to give him a small break and take Eloise. But, really, just knowing he is not alone in those hard times already helps a bunch.

Third, we need to find more people to babysit Eloise on a regular or emergency basis. We have a few who can help, but we will probably need help often for many many years, so we need to make sure we don’t rely too much on the same person(s). The problem is that we live a bit far from most humans, and to learn Eloise takes time. But we have to. We really have to. And it’s the same with puppy. It takes him time to get used to people and he has anxieties of his own, so we need to find people who would help, and then take the time to train them. Finding people especially feels overwhelming, but if we are going to do more than just survive, I think it’s crucial.

Fourth, simplifying is hard. A few month ago, I realized I could no longer keep up with all of the social media DMs and comments on Eloise’s posts. So I made the tough decision to stop responding most of the time. But that’s just one things. We’re also considering finding a better home for puppy — but that is such a hard decision, and it’s difficult to know what’s the right thing to do. His stress goes up when ours does (with Eloise, usually). And it doesn’t feel fair he’s stuck in our chaos. But, to start, we hope to at least finding puppysitters.

Realizing this tough season is going to be going on for probably a few more years was a tough pill to swallow. We have to find a way to make it through.

Sending love.