the hotel

I wrote most of this right after the hotel visit and never quite finished it until now. (Brief update on Emma is included at the end for those short on time.)

There was a convention (or two or three?) in the city the weekend we needed to find a hotel. The only one Tyler could find rooms in was this one, and it was the busiest hotel we've ever seen. Cowboys were everywhere. I'm no detective, but I'm pretty certain one of the conventions included cows.

In the last 4 months, we've spent 1.5 months apart, spanning across 4 hospitalizations. This time she'd been hospitalized for 2 weeks. I could see it on their faces now. The stress and exhaustion of being separated again, the anxiety of not knowing if it was going to happen again or for how long, the missing having a mom there, and the worry over their sister.

When we stepped out of the van, they grabbed onto us, and it felt so good to hold them again. While the rest of us picked up luggage and hospital bags, Violet, who is somehow my size now and towers over her big sister (nearly a foot taller than her), gently took Emma by her arm, carefully helped her out of the van, and walked her through the hotel with us and up to our room...cowboys randomly appearing to open some of the doors as we went.

Life is always chaotic with five kids. Especially in moments like this. They all want to talk, share, connect. Hearing their voices, the things that they talk about, the little gems of themselves that they choose to share with me, is all a treasure. I had missed it.

Our evening was full of eating, briefly exploring some of the city within walking distance, and a lot of talking. Emma was too tired to join us for the outside portion, so T2 offered to stay with her and watch a movie. (You can see them in one of the windows of the building in the lower right photo.)

When the chatter of the evening finally gave way to sleep, I laid there, listening to the quiet. The hum of the air soothed the room, lulling them all to sleep. We left the curtains open, allowing the nearly wall-size glass window to show us the the city all through out the night. Dark skies against the glow of buildings, highways, and streets below. Headlights passed by, going from here to there. I watched. Finding relief in the simplicity of it, until, at some point, sleep came.

Twenty years. That's how long we had been married. It hit suddenly, too. Almost like waking up young one day, only to wake up the next and realize midlife had arrived. During hospitalizations, we only get passing hugs, as we trade places, no time with each other. But here he was, sleeping, and somehow he made everything feel safer.

The sun was coming. I watched as the subtle rays of twilight played across the room, dancing with the shadows. It touched the edges of the table, the folds of the blankets. It tickled their faces, as their eyes remained closed, unaware. I fought the urge to catch it, knowing the beauty it brings when contained in a photo, but chose, this time, instead, to watch. The quiet and calmness of the moment was welcomed...needed.

My mind took me back to earlier days. Before all of this. When it was just him and me. We made promises to each other of something better. A life we would create, the children we would have, and the dreams we would chase.

The contrast of then to now brought with it a wave of grief. So much of it went so differently than we thought it would. Less than a year after we married, a cascade of events would start, would span years, and would lead us to where we were today.

Having a child so sick that they are going to die without intervention, then going through that intervention, and watching them bring her to the brink of death to save her, while watching others around us dying from the same process, is a very harrowing process. It changes you, permanently.

TV portrays children like she was as having to live in a bubble of sorts. Cut off from all family. Parents as well. I just watched it the other day on TV. But, in reality, these days, at least, it doesn't happen quite like that. They get them to a certain point, then send them home with you, giving you restrictions and rules to follow. Basically they give you a different type of bubble to live in, until their immune systems are up and running.

Flu from church was why she went into severe bone marrow failure, first started transfusions, first went into isolation, and is why we began androgens (most would have transplanted at this point). Three years later, pneumonia, picked up from Costco (the one time I brought a little one with me, who caught it), was why we were forced to go to transplant. Then the Epstein-Barr virus "woke up," after they destroyed her immune system, and is why she developed a virus-driven lymphoma while also having a sudden brain bleed. And a harmless-to-almost-everyone-else BK virus, another one that "woke up," made her urine look like blood for months and was attacking her kidneys.

That was some of our experience, up to that point, in dealing with viruses with a child that was severely immunocompromised. So, when we were finally taking her back home, still very weak, to wait it out, doctor-ordered restrictions fully in place, we knew we had to take it very seriously. She had been through enough. We would all protect her. And so we did.

It was only supposed to last a year, the waiting for her immune system to work. But then it kept going just a little bit longer. And a little bit longer. They told us when it comes in, it should come in fast. But eventually we reached a point where we realized it's not going to happen. Something went wrong somewhere along the way. This isn't how it was supposed to go. The doctors felt like it was due to the ebv-lymphoma because everything was going right until then.

Barring some medical breakthrough, we knew her overall illness, Fanconi Anemia, meant her life would be shorter. A transplant only gave her more time. It didn't cure her. So, we had initially planned to pack in as much adventure and experience as we could once she was better. Yet, here we were, stuck. It's like being broken down in the desert for years when you thought you were on your way to <insert an amazing place> before you die. Not to say that we have treated her like she's on the brink of dying, we haven't. We hoped she was far from it. Still do. But when you know the reality of the illness, and you watch so many others around you with the same condition dying young over the years, it's how it feels. We have no security that we'll get 20-30 more years. She doesn't have time for this to not work. Let's get going. Quickly. But we couldn't. It was maddening.

As one year turned into two years, two turned into four, and when we're in the midst of it, not knowing how this is going to end, we began to feel tremendous pressure to break all the restrictions and just let her live her life. But, based off of past experience with viruses, based off of seeing children like her die from infection, we knew it would be risking her life. How do you choose to do that?

It turned into our very own, real life, thought experiment, like the trolley problem. Where a trolley is headed towards five people, but there is a lever you can pull that will send the trolley another direction. Only on that other track there is one person it would kill. Do you pull it, and become the cause of that one person's death, and save the other five, or not?

Only for us, the dilemma is that she has a shorter life, do we choose to extend it as long as possible by protecting her physical health until her immune system comes in or do we choose to throw caution to the wind, assuming it's never going to happen, and let her live it as fully as she can, knowing it has a good chance to shorten her life tremendously?

It was its very own special kind of mind game that we couldn't seem to escape.

We gave Emma the right to choose what she wanted to do with it. But she didn't really like her choices either. She wanted to live and experience life. In the end, we tried to, very thoughtfully, push the restrictions pretty hard during the summer. If we weren't allowed to go to the movies, we decided to go during the middle of the day when everyone was at work or school, choosing movies that had been out for a while, and things like that. Then during flu season, we were much more careful. So, we did get some adventures in there, just limitedly.

Six years later (nine years total), we finally made it to that finish line. The transplant had finally done its thing. Her immune system functioned well enough that they said no more mask, no more social distancing, no more having to be careful. We could go back to being normal, whatever that meant. But most importantly, alllll the adventures could start.

Except, in a weird twist of fate, six months later, all the restrictions were back with the pandemic, and we would find out that bone marrow transplant patients would be among the highest risk group. Because apparently we had signed up for the Isolation Earth version when we came here. We found ourselves feeling trapped, just like we were before, and we felt the same pressure to hurry this along. We don't have time for this. So, we dealt with it by buying an RV and driving off on adventure after adventure, refusing to wait any longer. And that's what we were doing when all of this started with Emma. We were in the middle of a trip when she began to struggle. There was always this expected future, one where we'd get a little time to live a normal life again. Finally get to take her to Disney World, the promise we made to her during transplant, giving her something to hold on to when times got really hard. Only she was never able to go because of the never ending restrictions. Except for those six months of freedom we had. Our only mistake was we didn't know we only had six months.

But now things are like this, and I'm so afraid we've ran out of time. I hope a new normal comes. One where she regains full motor control. Where she can draw again. Where she can play games. Where she can eat by mouth. Where she can have energy and do things.

I watched Emma sleeping, thinking of the little girl she used to be. Thinking how fast time goes by and how quickly things can change. Violet next to her. An amazing daughter and friend. The other children slept in the room adjoining ours. I looked back at the sky, and I felt the heaviness of it all.

The sun was about to rise. Tyler had gotten up to get ready, when I asked him to come back and watch the sunrise with me. He sat down, we snuggled in, and we watched. And just for a moment, it all felt okay.

Since being home, Emma has eaten very little by mouth. She has been able to tolerate her new feeds much better now. They are going in slower, and they're also giving her less calories than before. The hope was that she would eat more by mouth, making up the difference, but the opposite has happened (almost no eating by mouth). I haven't mastered how to add in all the water she needs on top of all of her formula, but it does feel like we're making progress.

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