I’m currently working on a letter to mail out to friends and family, an informative explanation about WHY Ulysses is having his lower legs amputated. I’ll post the letter here when it’s ready, but right now, this is a little about my motivation for writing such a letter in the first place.
I know that people don’t always know what to say to someone who is anticipating their baby’s amputation surgery. But more than the surgery, it’s clear to me that people do not always know what to say to someone who is anticipating their child becoming a bilateral amputee. We’ve had people ask us if we’re sure it’s necessary. We’ve had people ask us if we’ve considered other options. We’ve had people who don’t know anything but tell it how great it will be. I know it’s awkward. But questioning our judgement is insulting. And if we didn’t think this was best, we wouldn’t be doing it; so telling us how “great” it’s going to be is not helpful. We are utilizing current medical technology to give Uly the best shot at independent mobility. I think science is freaking amazing. I think we are crazy lucky to live now, in this hi-tech future. But it’s not going to be easy. The last thing I want to hear, as we’re gearing up for this (“this” being not just the surgery, but a whole lifestyle) is sugarcoated positivity from someone with no firsthand knowledge. (firsthand reports, though? different story!) So I aim to lay it all out there. Why he’s having his lower legs cut off. What the surgery will entail. And how it’s not just chop-chop and slap on some prostheses. Seriously, I wouldn’t make such a callous remark myself if I hadn’t already heard so many. People say ignorant things.
So as I’m composing this letter for friends and family, I keep thinking how grateful I am that I will be able to include a reference to a relevant public figure. Did you watch the Olympics this summer? Were you as awestruck by South African runner Oscar Pistorius as we were? Oscar also had his lower legs amputated as a baby. He had a congenital malformation similar to Uly’s (correct me if I’m wrong here, but whereas Ulysses has tibial hemimelia -absence of the tibia bones- Pistorius was born without fibula bones) and, in severe cases, amputation is still considered the best strategy.
It’s not wonderful that Ulysses was born with missing bones. It’s a challenge no one would choose. But the synchronicity of seeing a bilateral amputee all over the media this year IS wonderful. The timing was exceptional and I am so glad that I can point to a person with similar anatomy. I think it will help people understand: see? Uly isn’t the only one! but also, I think it’s terrific for Ulysses: see? you can do whatever you want to do!
For the record, I do believe Ulysses is wonderful. He’s observant and quick and has some of the most adorable squinchy-eyed baby grins I have ever (yes, ever!) seen. I love him. I feel lucky (yes, lucky!) to know him. I think he has a lot to teach all of us. I think any other people who get to know him are lucky, too
In the meantime, I want you to know that anticipating his surgery and hospitalization is as stressful for me as it would be for you. It’s not easier because the surgery is “for the best” or because we’ve known it was coming for most of a year. I feel exactly about Ulysses’ surgery as you would probably feel about YOUR baby’s surgery, as you might feel about an extended hospital stay with YOUR child.
If you don’t know what to say to me, or someone else with a baby like Ulysses, it’s ok to say you don’t know. It’s ok to ask questions. We have learned a lot of stuff this last year. We’re glad to talk about it, to give forthright answers and explanations, as long as you don’t make us feel like we’re on trial over here. And, if you know more about the surgery and recovery and ensuing life of therapy than we do, please share! I am soaking up every experience I can find and it’s such a help to read about people who have “been there”. I spend a lot of time reading about amputees. Of course, like any of us, amputees represent the whole gamut of human experience. But for the purpose of informing people who know Uly about what’s going on in his life, I’m really glad for a certain prominent Olympic athlete, his bladerunning still fresh in everyone’s mind.
Also, Ulysses is ELEVEN MONTHS OLD NOW, WHAT?! I know it’s par for the sentimental parenting course to be all, so fast, so fast, where does the time go? But, this time, this year, I really, super mean it. It’s been the most intense year of my life. I had this irrational, emotional secret hope that his amputation surgery would happen before his first birthday. And, as we knew from the beginning that the timing would be somewhere around when “he starts trying to pull up to stand” it looked like that would happen. Ten months, his surgeon originally estimated. And then it looked like not until December. So for a few months, we were thinking along those lines. And then we got the call: how about November 6th? So while the rest of the country will be focused on election day, my little family will be entirely consumed by something else. His surgery will happen three days before his birthday. You probably wouldn’t want to spend your baby’s first birthday in a hospital, and neither do I, but it will be memorable, for sure.
Here are a couple recent pictures of Super Uly himself:
(have I told you how much he loves that little guitar? it stays in the brother’s room, but uly makes a beeline for it whenever he can! his favorite thing!)