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.

Categories: Uncategorized | 11 Comments

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11 thoughts on “dearly beloved we are gathered here today 2 get through this thing called life

  1. He’s such an adorable baby and I feel so much the pain and worry you are going through. You are eloquent in your misery and so humble in your awareness. I am sorry you have to go through this, that he does. It sounds scary and terrible and disruptive and so painful to send him exactly to the place where he will go through another huge surgery. I wish for him the love that is everywhere to seep into every pore and give him all kinds of comfort. And you too. And thank you for being real.

  2. layne

    Seeing him dancing and crawling post-amputation just makes the whole thing so much more real. I am so sorry. I know there is nothing you could hear (short of, ‘sorry, it was a mistake, no more surgeries needed!’) that would make anything any easier, but he is so obviously doing well for any baby and you are so, so obviously doing amazingly well as a parent in a situation for which there really are no good road maps or guidebooks. You have such a beautiful family. I so wish you could get the vacation you need.

  3. amanda

    What a little powerhouse of happy Uly is. Thank you for sharing his strong, dancing joy.

    This must be — every single one of these surgeries must be — so frightening. I can’t wrap my head around it. But I know your grace and strength — I’ve been watching you do it since he was born. layne said it so well. There are no good words I can add except my care and support. xoxo

  4. Amy

    That made me so happy! He’s gorgeous, love his little suit, so pretty.

  5. What a gorgeous, happy boy. You capture everything so beautifully–I am amazed by your writing, in the midst of this particular (or any!) life. I am scared and hopeful for you, wishing you all peace and rest and a good night’s sleep, health and luck.

  6. Christine

    that video was awesome!

  7. We are sending comforting thoughts and prayers your way. I don’t know how you have gotten through all you have, yet you do because – as you said – it is life. You are a strong mother and Uly is blessed to have such strength in his life. The video was awesome. Obviously his heart and his amputation are not slowing him down!!! This too shall pass…

  8. Well, I think you guys deserve a vacation because you do even if life is not willing to make room for one now. I’m sorry Uly has another surgery ahead and wish (as always) that I lived closer so I could do something to make things easier for you all while you head towards it and get through it. Thank you for sharing the video — that baby boy is awfully adorable.

  9. First, I didn’t think it was possible, but yes. I love that little bouncing baby boy even more now. Him and Lamp could cut a serious rug. One day…

    Second…I hate second. While I’ve sorta been in your shoes, because all surgery sucks and is a worry to us mama’s, I know that I have NEVER been in your shoes. Heart surgery and amputation are off-the-charts worry territory. I know my stomach would be in knots as well. What you are doing is not easy. I will be sending all the love, prayers and positive thoughts I can your way.

  10. Jenny

    I’m thinking of your family this week. My kids are on Spring Break and, although I know you didn’t say when Uly’s surgery will be, I assume it must be soon. I just want you to know that this frequent visitor of your blog is thinking and praying for you, for Uly, and for his surgeon and nurses.

  11. I am sorry – was that the air guitar I saw him playing? What a hoot!

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