november second

oneyearago

Today I avoided activities, cancelled plans, stayed home. I have a pretty good excuse: Ulysses is having major surgery in a few days and I can’t chance him getting exposed to any of the usual Fall sniffles that might be floating around out there. Respiratory infections plus general anesthesia do not a good combination make. But that’s only part of the story. The part I didn’t mention is that, to tell you the truth, I don’t really feel up to talking much right now. I can barely write well enough to convey how I’m feeling, but when I rely on spoken words, everything comes out wrong and I sound like a dope.

Today it has been exactly one year since I was obliviously, delightfully pregnant, and my biggest worry was whether the baby was breech or not.

“Your baby has Lobster claw syndrome” the radiologist told me, “and other problems, too.”

If you are a radiologist having to break the news to a pregnant mother on her due date that her baby has any anomalies at all, it is egregiously unprofessional, cruel and stupid, actually, to use outdated, offensive slang as your opening line.

“This is why you should have had a twenty week ultrasound,” the radiologist went on to scold me. I remember his insensitivity and I still feel sick and angry.

Within a few hours of that unscheduled, position-checking ultrasound, I was swept into a machine of maternal fetal medicine clinics and level two ultrasounds and lots and lots of doctors. This whole year has been full of so many doctors. Do you know how many doctors have used the term “lobster claw” while speaking to us? Just that one stupid radiologist. He should have known better. It was hard enough to digest so much surprising information without having to hear it couched in dehumanizing terminology.

By this time of night a year ago, I’d already learned that my baby was a boy and that he had a serious heart defect, in addition to his physical differences. We were told he probably wouldn’t survive his birth. I cried a lot.

And can you guess how  many other doctors have ever scolded me for not knowing earlier about his differences? Not one, just the radiologist I saw a  year ago. Knowing earlier would not have changed anything.

That baby has been surprising us since the beginning.

Lately, I’ve been surprised when I manage to eke out a whole hour nap from him. That baby is too busy to sleep. I strap him on my back and hope he zonks out quickly and deeply enough for me to get something else done while he’s sleeping back there. It’s not ideal, but it beats sitting incessantly in the rocking chair.

Today I woke up and remembered the foggy drive I took to my midwife’s office one year ago today. I remember hoping that it would be my last prenatal visit, hoping the baby would come soon, knowing my house was all ready, feeling excited and happy. When I made the return trip several hours later, I was someone else. I wasn’t happy anymore. I was devastated. Everything had changed.

I want to tell One Year Ago Me that the heaviest loads will get lighter, that the everyday will be full of the mundane, that the sweet small things that make it all worthwhile will be just as sweet, but matter even more.

Untitled

(vanity, thine name is not iphone self-portraits! i’m trying not to be too critical of that quick shot i snapped of myself and uly this afternoon, because i think it’s a good picture for today, where we are. it’s been a hard year, but we’re ok. and that foggy changing leaves picture was actually taken a year ago today on the drive to my midwife’s office.)

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Categories: Uncategorized | 16 Comments

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16 thoughts on “november second

  1. Aprill

    I love this picture of you. There is joy in your eyes.
    That radiologist is a jerk.

    • he was a jerk and I haven’t even talked about that experience of feeling shocked and shamed and scared to anyone. I have tried not to think about it for a year. I’m glad I have such a smiling little guy to soften the sting of that sucky memory.

  2. You both look fantastic. Many hugs and know you are in our thoughts.

  3. Deb

    Beautiful photo and writing. Much, much love to you and Uly!!!

  4. Petra Prostrednik

    Beautiful!

    • thank you. it’s been a year of growth and learning and I’m grateful to share something as simple as a napping baby and a smiling mama.

  5. You are gorgeous. And I don’t think I’ve ever had goosebumps of rage, but I did all through out this post. I am heartbroken that was the human being that relayed any information to you about your beautiful child. Happy almost birthday sweet boy!

  6. growingwildfarm

    I love that photo, you look radiant! That was such a crushing, heavy day, I can’t believe anyone could be so insensitive; but so much sweetness since then, Ulysses is such a love.

  7. Milkstained

    That’s such a beautiful photo of you both.

    Maybe ultrasound waves eradicated his ability to have empathy? What an awful bedside manner, to say it mildly.

  8. I love that I finally get to see your face here ❤

    Our babies are almost a year old. Very different years for both of us, of course; I won't try and line my experience up with yours, but wow. Somehow, still, we both got to here, on the verge of a first birthday. Sort of mind-blowing, and especially after how changed your life and worldview is from what it was before your beautiful littlest boy arrived.

    That radiologist. I think there is steam coming out of my ears right now. Oh, how I wish I could accidentally bump into him and give him an obscenity-laced, red-faced earful. I would make a scene. It's not even just for you– there's no way you were the first woman he was ever rude to. Imagine all the scores of women before you and since. What a vulnerable place to be, putting your trust in someone else to confirm for you that your baby is okay, with you super pregnant and lying there on the table, and THAT is his moment to be in charge and be powerful and hold one over on someone else? Why would someone like that ever want to work in healthcare with the public??? Effin' jerk. Ugh ugh ugh.

    Okay, ending on a good note– I think about Uly all the time. I see children with differences out in the world and the second my brain starts the automatic double-take to try and figure out what it was I just saw that triggered my conscious brain into trying to figure out what was different, the thought pops in: "That could be Ulysses. That child's mom could be April. She could be having a hard enough day, she could be a week away from a major surgery, this could be their first outing SINCE a major surgery, they might be on their way to or back from a devastating doctor's appointment. I don't know anything about them but I don't need to and I don't get to figure this one out." I credit you with every time I catch myself before staring, and therefore for every time I don't accidentally make a mom's day worse when she already has so much she's trying to deal with. Your blog and your story does make a real difference out in the world and I hope that is some measure of comfort to you while you wrestle with these big, hard things on behalf of your very little boy. ❤

  9. You are strong. You are amazing. You are the perfect mom for Uly.

  10. I was thinking before I saw your comment on the photo of you: there is such JOY sparkling in your eyes. You look so pretty!

    I’m happy to read this post, though I am late getting to it. You sound balanced and good. I know it has been a hard, hard year. But you said it so well with this: “I want to tell One Year Ago Me that the heaviest loads will get lighter, that the everyday will be full of the mundane, that the sweet small things that make it all worthwhile will be just as sweet, but matter even more.”

    xoxoxo

  11. Jenny

    I’ve been thinking of you and Uly and your family. Last night while trying to go to sleep, I remembered suddenly that Uly had had his surgery on Tuesday and that I had forgotten to pray for you guys that day. But I prayed last night; maybe you needed it more then than on Tuesday. Hope all is well.

  12. Alexandra

    Hope you all are doing good and Uly is recovering smoothly.

    Alexandra

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