super uly 2 years old!

Just over two years ago, I was told that the baby I was carrying would probably not survive birth. If he lived, he was not expected to live long. The known facts were incomprehensible and frightening; the predictions were even worse. It was as though the child I’d been anticipating had been pulled from my gut and replaced with a nightmare.

But he did not die. He surprised everyone by living. Despite legitimate fears and worries about his challenges, he surprised everyone by being so remarkably alive.

Ulysses is TWO now, can you believe it? I cannot. He’s zonked out on my back as I type (the only way to eke out a non-car nap for this boy is to wear him, still.) and the truth is that I’m a few days late in writing here (I had wanted to post on his actual birthday) because I’ve been so occupied with LIVING with him. That’s mother-of-toddler speak for: I don’t have time to write about my kid because my kid takes up all of my time!

No ultrasound scan could have determined that I would have a baby with such spirit and vim. No blood test could have indicated that he would be a busy, inexhaustible rascal, getting into everything in a flash. It’s been two years of heartbreak and wonder, two years of not sleeping, two years of swallowing stress and collecting bills and learning so much! It’s been a freefall through dread and inadequacy, a mountain climb without any gear. It has been hard. It has been a lifetime and an instant. Only two years? Two years already? Yes.

I put together a photo story of Uly’s first two years. If you have about five minutes to spare, you might like to a peek into his life, our family’s life. You might think about Ulysses as that little guy with limb differences, or of that baby who had a couple of open heart surgeries, or maybe as the toddler who is learning to walk on prosthetic legs. Those things are true. But I hope you also think about his grin and his sparkle, his impishness and determination. I don’t call him Super Uly for nothing, you know!

The slideshow ends somewhat abruptly, but I like to think that it finishes with visual ellipses. It’s been a full two years, but his story is barely starting. . .

(i used songs on the slideshow that are part of my experience with ulysses, and are very evocative, for me, in that regard.)

Categories: amputation, open heart surgery, terrible prenatal prognosis, unexpected | Tags: | 27 Comments

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27 thoughts on “super uly 2 years old!

  1. Midge

    That is wonderful!

  2. Sweet.

  3. Christiane

    Somewhere around 4:10 in that video, poof! He goes from baby to toddler. Incredible. They change so much so fast. He’s just adorable, April!

  4. Margaret Jones

    He is so adorable….his impish smile is infectious! I love him and I don’t even know you all. Thank you for sharing him with us…..he is truly Super Uly! Happy birthday, little man!

    • thank you for commenting! sometimes I wish the whole world could see my blog and “know” Uly before ever meeting him. he is such an adorable imp, but people can be so surprised by his differences that I think they miss out on seeing who he IS.

      • Uly is just gorgeous! I love that dandelion hair and impish grin! I bet he could give my own imp a run for her money! We have some good friends in Oregan, maybe when we visit them we can come meet you guys. He and my angel girl are two peas in a pod!

  5. What a sweetie! This is a lovely tribute to the journey you all have been on! Thanks for sharing him with us…

    • and thank you! it’s hard to know what to share. I don’t want him to hate me when he’s older but I DO want to foster understanding. he is pretty sweet.

  6. I love love love the video. And I recognized many photos immediately to older post and experiences you’ve shared. Happy birthday, sweet Uly. We’re all lucky you have a Momma who has shared so much in these last two year.

    • yes, I should have made a disclaimer that I’d already posted many photos elsewhere, but quite a few of them had never been shared anywhere else before! thank you, Jen!

  7. This slideshow is so evocative, he’s a truly beautiful baby and no one grins like Uly. He has a smile to beat all smiles. I cried at all the hospital scenes, although having read about your experiences of the past two years, there is nothing like seeing the visual representation of all those days in hospital and healing/pain and heartbreak of mom and dad and Uly’s pain.

    It was neat to see this peek into the daily life of your family as well, nature, garden, laundry baskets and all. Happy birthday, Super Uly! There is one pic of you holding him, in black and white, where you both are smiling so deeply, it’s a beautiful image of motherhood. And that Arlo Guthrie song! I used to play that album for Kai when he was a baby, that took me back! xoxo!

    • thank you Omy! hopefully we’ll make it down for an Arizona trip this next year and you can meet him in person and I can see you. it’s been a long time!

  8. Brian

    2:30 is my favorite transition. It says “the worst is behind us now”. It’s still hard, setbacks and challenges and all, but the worst is behind us. Thank you for making this.

  9. Gini

    I LOVED seeing this! What a happy little boy, and what a lucky family you are to have him. Thanks for this glimpse into Uly’s life and infectious joy!

  10. Lisa

    April, that slideshow was beautiful. It’s hard to believe Uly is already two! It was wonderful to see him zooming around last week.

  11. That Asian-Looking Chick

    Happy Birthday to Uly! You did a beautiful job with this slideshow… it brought me to tears and made me smile and damn I’m just so in awe of ALL of you. Also, may I just say that your writing is wonderful, and the writing in your fourth paragraph is just completely gorgeous. Thank you for this. =) *hugs*

    • Kristi, your compliment is such a gift. I always shy about writing, it is a boost to know that sometimes people find my words moving. thank you!

  12. growingwildfarm

    A very happy birthday to sweet Uly! I agree with Omy…the hospital pictures in there got me. He does have such a personality, such a squishy grin and that winkle in his eyes. When you see it in the photos at the hospital, oh my–he is super. I know his body carries the scars, and all of you, so much, the harder parts of his first two years, but when I am with him, it is easy to forget all hose hard times, he is so dang lovely.

    • growingwildfarm

      *twinkle* in his eyes, not winkle! I hope to see that winkly boy soon!

    • the hospital pictures still get me, too! i almost didn’t include any, but that’s part (a BIG part of his story) and I think it’s important not to acknowledge it all.

  13. Jorgi

    THIS BABY. I swear, the sun shines out of his smile.

  14. Oh happy happy birthday you beautiful boy!!

  15. I loved this so very much! His sparkle and spirit show so clearly. That is what makes him so extraordinary. Thank you for sharing your sweet memories with all of us!

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