terrible prenatal prognosis

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.)

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

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