the letter


(I sent this out to several family members with the intent of giving them a handy overview, something to reference and pass along, if necessary, because I do know that people are curious. I try to maintain a balance between sharing pertinent information that will both help us connect with people with similar situations AND foster understanding from others while ALSO preserving some amount of privacy.  Ulysses owns his own story. I want to always be respectfully aware of that. But because his differences are largely visible, I feel like sharing specific details is warranted.)

Dear friends and far away supporters of Ulysses,

We’re quickly approaching something we’ve been anticipating this whole year: Uly’s leg surgery.   The first time I heard the word “amputations”, in the context of my own baby, I felt such a sharp, heavy grief. It’s a shocking word. But we’ve had over eleven months now to read, to learn, to understand. And now I can say the word amputation without it getting stuck in my mouth, now I not only accept it, but can explain it to other people. I hope this letter clears up any vague misinformation that anyone might have had.

In a very basic sense, I tell people that Ulysses was born with a rare genetic condition that affects all four of his limbs and his heart. This is true, if not complete. We might not ever have a “name” for what he “has”. Syndromes only become known and named after extensive research and study. The rarer the syndrome, the longer this process takes. But, even without an umbrella catch-all to describe his unique anatomy, we can still address his differences individually. Ulysses was born with a congenital heart defect; he had open heart surgery at three months to correct his Double Outlet Right Ventricle with a Ventricular Septal Defect.  Ulysses has ectrodactyly, which is hand clefting with “missing” fingers, as well as absent corresponding metacarpals, tendons, muscles, all of it. His hands are tremendously functional, and honestly are very little concern to us.

Uly’s legs, however, are a great concern. Ulysses has bilateral tibial hemimelia, which means that he was born without tibia bones (the largest lower leg bones), on both legs. Tibial hemimelia is very rare, occurring approximately once in every one MILLION live births, and that figure includes unilateral cases. Bilateral presentations are, then, even more rare. Prior to Uly’s birth, I certainly had never once heard of this birth defect. In addition to absent tibia bones, he also has no ankles and severely clubbed feet.  What this translates to is that Ulysses has legs that will never walk, cannot support weight. At 11 months old, he is at the age where his brain is telling him to stand up but his body cannot cooperate. He pulls up on his knees and that’s as far as he can go.

Did you watch the Olympics this past summer? It was hard to miss the media attention received by South African runner Oscar Pistorius, who was the first bilateral amputee to compete in the Olympics. Pistorius was born with a condition called fibular hemimelia, which means he was born without fibula bones. It is a similar, but less rare, condition. The treatment is very similar, however. For individuals with severe cases (meaning completely missing bones, not just partially missing bones, and  with other corollary issues) amputation is considered not just the “best” choice, but, frankly, the only choice to provide the opportunity to walk.

Ulysses will be having both of his legs amputated, but the surgeries will not be the same. He has absolutely no tibia bone on his right leg, and his right knee is partial and cannot extend. On this leg he will be having a knee disarticulation, which is the name of an amputation that occurs “through” the knee. He will have a residual limb that ends where a knee would be, but that limb will not have a functional knee. On Uly’s left leg, he will be having a Syme’s amputation, which is basically a through the ankle amputation. Ulysses has a bit of tibia bone on his left leg, which will be fused with his fibula bone to create a stronger, weight-bearing residual limb. He will have two residual limbs of differing lengths.

I can tell you honestly that I do not know what the recovery will be like. I can tell you that I am nervous about hospitalization with a busy almost one-year-old. I can tell you that I am dreading this whole thing so much, yet I just really want to hurry up and get it finished already just to have it behind us.

Ulysses’ surgery is happening on November 6th at Shriner’s Hospital in Portland. We feel incredibly fortunate to live near a Shriner’s hospital. Uly went for his first appointment to see an orthopedic surgeon at only 3 weeks old; that hospital has been a big part of our lives already in this last year and I cannot stress enough how kind and helpful everyone there has been. We feel very confident that Ulysses is in capable hands.

When we are past recovery, when Ulysses is completely healed, we will begin the process of acquiring prostheses. This is new territory for us. I have read so much over the last year that I feel informed, but I know I still have so much more to learn. It’s not a small thing, being a leg amputee. It’s not a matter of snapping fingers and getting some prosthetic legs. It’s a whole new lifestyle, involving physical therapy, and fittings, and special considerations. Prostheses require much more energy to use than do biological legs. Ulysses will have to work harder than other people, just to walk. I don’t tell you this to feel sorry for him; I tell you this so you will cheer for him.

We welcome your good thoughts and prayers. I’ve had several other people ask me if there is anything else they can do. I never know how to answer. A very good friend will be staying with our older children while Ulysses has surgery, so from the logistical, practical side, I honestly don’t know that we need anything. But Ulysses will in all likelihood still be in the hospital on his first birthday (the 9th) and it would be such an encouragement to receive a collection of cards for him. This certainly isn’t a specific request, but if you felt like you wanted to do something anyway, I would love to hold onto a little bundle of kind words for him, to show him when he’s older. From traumatic birth to heart surgery to leg amputations before his first birthday, it’s been a heavy year for all of us. But please don’t think we’re sad. Ulysses is such a wee, grinning baby, like a happy elf, we can’t help but feel incredibly, unspeakably blessed.

Thank you for caring.

(Ulysses went to two pumpkin patches last week, but I didn’t remember to take my good camera to either, ho hum, and only had a few quick phone shots. also, see that super cute sweater he’s wearing? a shout-out to Jenny -are you reading?!- in arizona who knitted that when I was pregnant with mister six. that boy -who is almost seven now!- was a giant and outgrew that lovely wool handknit when he was less than two months old. but Super Uly is a tiny thing and it still fits him wonderfully. that sweater has been so perfect. I think of sweet Jenny every time I snap it on him.)

Categories: Uncategorized | 9 Comments

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9 thoughts on “the letter

  1. Alexandra

    Great letter.
    It is probably weird question but do you have a mail box address you can post? Or maybe email me? I swear I am not a stalker but I would love to send a card.

  2. I will be thinking so hard about you and your sweet, sweet boy on (and after) November 6th! I’m rooting for Uly!

  3. aprill

    can you email me your address april?
    i am cheering for that little elf so hard. and for you too. xoxo

  4. Mel

    I tend to lurke what with 2 small kids at home and no time to comment (I’ve been reading since Miggy linked), but I just really wanted to reach out and tell you what a beautiful family you have and that there is one more person out here keeping you and your’s in their thoughts for this big life event.

    • thank you so much for commenting! I really appreciate hearing from readers out there so much. it means a lot to me to know that so many kind folks are reading along…

  5. Shannon

    My heart goes out to you and your family and I wish you the absolute best wishes with everything. Uly is such a handsome little boy and he looks like such a sweet happy child and that it warms my heart.

  6. I am a friend of Coleen’s and I read your posts about your son on Valentine’s Day. I cannot thank you enough for sharing your story. It’s so moving and so inspiring. It is SO AWESOME to see this picture of him in the pumpkin patch. I work with families with newborns and by reading your posts I feel more capable of being an effective support person for families navigating similar waters. So thank you. And I have lit a candle for Uly today and will be thinking of him.

  7. Laura Harden

    I don’t know you but I want to thank you for sharing your story. I also want to send heartfelt love from my family to yours. I am sharing your family’s story with mine. We will all be hoping for speedy healing and smoother seas ahead.

  8. Beautifully written; a lovely update. Thank you for sharing. I look forward to hearing how you all are doing.

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