dearly beloved we are gathered here today 2 get through this thing called life

I hate sounding like a complainer. I hate complaining. I like to think I wake up every day and notice small things, good things, that, lumped all together, day after day, matter the most. But right now, this day, we’ve got some big things ahead, and I can’t think of anything else.

If we connect other places, you probably know by now: Ulysses needs another heart surgery. I want to say that this is a total shock. But I knew it was coming. I didn’t expect it to be so soon. And I didn’t much mention it because I couldn’t think about it; I couldn’t think about it because I had to pretend it might go away. His amputations and following hospitalization depleted us. It took us weeks (months?) to recover. Sleep rhythms were disturbed, he became fearful and needy. I am not at all ready to go through another major surgery. I have no choice (he certainly has no choice). And this time, I know exactly what we’re in for. He was three months old when he had his first open heart surgery. That was hard. How much harder will it be now, at sixteen months?

Can the timing of a surgery be ironic? Because one day last week the husband and I were whispering to each other, sending furtive texts back and forth, about sneaking away on a spontaneous road trip to the happiest place on earth. We had a one week window to plan a vacation. Maybe? Could we swing it? With mixed emotions, he’s leaving his current job (which he did love) for a new position elsewhere (for complicated reasons). It’s a good decision, the right, obvious decision. And we thought to ourselves: when the unused vacation weeks from the old company are cashed out, we could pay bills (we have a lot of medical bills, you know. it’s just how it is now.) or we could go on a vacation, the likes of which we haven’t been able to make happen for years. And we said, fuck it, yes, let’s. And we started planning it and we were so excited. A fun time for this little family of ours.

I hate hearing how people deserve vacations or time off or anything at all, really. I think we can’t ever tally up all of life’s experiences in a way that makes sense. There is no deservedness and there is no fairness. As long as there are hungry people in the world, as long as there are people without medical care, there is no such thing as “deserve”. We aren’t any of us entitled to anything. So I won’t say that we deserve a vacation. But we sure would have appreciated one. My hardworking, long commuting husband sure could have used a week in-between jobs to breathe and sleep and rest and recharge. That was our best laid plan.

One day we were looking up hotel rates in Anaheim and counting driving miles, and the next day Uly’s cardiologist tells us, “if he was my kid, I’d do it as soon as possible”. How’s that for timing?

The last time we saw the pediatric cardiologist, he said that unless scar tissue growth abated, we’d be looking at another open heart surgery soon. I had to dwell in the possibility of “if” and “hope” so I could get through Uly’s last big surgery. One thing at a time. But when we went last week and learned that instead of abating, scar tissue growth had increased, that his heart function had been compromised, we had no choice. We scheduled his surgery.

I’m disappointed about not escaping for a vacation, yes. I’m sorry that the husband has to trade his palate cleansing easy family week off for a week of intense sleeplessness and worry, of course. A hospital stay with a baby is pretty much the opposite of a recharging week off! But, more much than those things is this: I am so dreadfully anxious about going through such a terrible thing again. I would do anything to keep my baby from having to experience another major surgery.

Because I’ve done it once already I know how awful it will be. I think my anxiety is completely valid, given the seriousness of open heart surgery. I am already waking from sweaty restless sleep due to frightening images of my baby being cut open. Every instinct of a good parent says to protect your baby from any hurt and trauma. I spend my all of my days tending and nurturing and loving that sweet boy. He is too young to understand why this will be happening. Keeping him comfortable and happy -as he’s such a busy, engaged, and curious, sixteen month old- will be such a challenge.

Right now, at sixteen months, Ulysses is a face-scrunching, kisses making, music loving sweetheart. His repertoire of animal sounds he can make on cue grows each day. He carries on whole conversations with different inflections of the words “that?” and “uh-oh!”. He gives hugs and lights up like a halogen lamp when his dad comes home in the evening. He is a wonderful person, and I wish I could pause him like this. I worry about the effects of surgery. The finicky things like sleep regression. The big things like neurodevelopment. I worry. I’m his mama, of course I do.

Shortly after we woke up one morning last week, I saw that a friend of mine in Germany (hey Amy!) had posted that she played Prince’s Let’s Go Crazy for her kids and they’d gone nuts for it. Sometimes you just gotta dance, you know? And so inspired I pulled it up on my trusty Spotify. From the moment the spoken word part at the beginning started, that boy was into it. He loves a good dancing song, this one. I grabbed my phone and caught some quick video. Don’t mind the grimy Christmas pajamas. I don’t live my life like it’s a photo op. I just live my life and sometimes manage to take some pictures. Here we are fast approaching his third hugely invasive surgery in less than eighteen months. It would be a lot, I think, for any one person to experience ONE traumatic medical event in a whole lifetime (I have never had such a major surgery myself). But three? In sixteen months? Well, that’s a lot by any standard. And I don’t know how we’ll carry on through it. And I don’t know how we’ll recover. And I don’t know what comes next. I just know I’m glad that he dances now.