An idea of what it's like.

Sometimes people ask me how Emily is doing. Actually, people always ask me that. It tends to be just a quick, folksy "how's the baby" to which you automatically respond "Great!" Other times, usually during quieter, more appropriate moments, people really want to get in to what's going on and what doctors are saying and what our next move is. What follows is a pretty standard response, quoting the last thing the orthopedist told us which is to say it's still up in the air, we'll take a look in April and start to form a more concrete plan then. 

What I will never really be able to fully express is exactly what's going on in my head. Anybody who's known me at all is well aware that inside my head is a frightening place. It's random, fast-paced and not necessarily pleasant. And that was before I had a daughter whose childhood and the entire future of her physical abilities rested on our shoulders.  

So, if you're really interested in what's on my mind, I'm thinking about this kid. I'm thinking about medical technology and what else maybe on the horizon. I'm thinking about this man and the thousands of people he has helped through his work on PFFD.  I'm thinking about the parents of this little boy as they are just slightly ahead of us on this journey. 

Since you asked, I thought you would like to know.

'Tis the season.

Once again, I've fallen behind in my blogging. What can I say? It's basketball season. It's Christmas season. It's have a nice warm glass of shut your trap season. This is my site and I'll get to it when I can!! I'm sorry. It's also a stressful season. Let's just keep it moving. 

What's new in the world of Emily and all that surrounds her? In case you hadn't heard, she was Baby Jesus. Ahh, that's right, campers. This past Sunday, Ems made her debut as the young babe, wrapped in swaddling clothes, lying in a manger. And she was magnificent. Kate (billed as "Mary's Helper") brought Emily out and placed her in the cradle as the pre-pubescent Mary and Joseph looked on in a "um...is that a real baby?" kinda way. I even taped the entire appearance from the church balcony and promise to put together a nice teaser just as soon as I can get appropriate wiring/enough time/smarter. 

Yesterday was the start of multiple Christmas celebrations as we trekked up to Massachusetts to share the festivities with friends and family. Yet another reason Emily rules...I can dress and act however I want because nobody's paying attention anyway. The second Ems enters the room, the spotlight shines only on her. I love it. And so does my inappropriate sense of humor and affinity for alcohol. 

But it doesn't stop there! Tomorrow will be Christmas with the Conquests, Monday includes a trip to Providence for holiday time with the Kristiansen's and Tuesday is an all Tredwell affair in Hamden as brother Pete and his family make a trip back to the east coast. 

In the meantime, this will be cut short as Emily squirms on my lap. She either wants to play with the computer or eat. Or both. Use your words, kid!

Plenty of good photos are sure to come. 

Invictus

In my time as a writer, I've found that some pieces come together easier than others. Some flow, some find a way and others are the creative equivalent of dry-heaving. In some cases, others take care of it for you. This is one of those times.
This is an e-mail I received from Emily's Godfather and one of my best friends for more than 20 years, Brian O'Dowd.

Tim,

"Invictus" (Latin for "Unconquered") is a poem by the British Poet William Ernest Henley, and it's one of my favorites. I recently learned just why Henley wrote it, and it reminded me of Emily. Here's the gist of it: "At the age of 12 Henley became a victim of tuberculosis of the bone. In spite of this, in 1867 he successfully passed the Oxford local examination as a senior student. His diseased foot had to be amputated directly below the knee; physicians announced the only way to save his life was to amputate the other. Henley persevered and survived with one foot intact. He was discharged in 1875, and was able to lead an active life for nearly 30 years despite his disability. With an artificial foot, he lived until the age of 53. 'Invictus' was written from a hospital bed."

Invictus

Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the horror of the shade,
And yet the menace of the years
Finds, and shall find me, unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate;
I am the captain of my soul.

Always keeping that beautiful child in my prayers.

Brian

My apologies in advance.

This post may be a bit scattered but, well, so am I. 

It's interesting how life draws its little parallels. It's the start of basketball season for many in my circle. Everybody is going through the first few days of tryouts, shaping their teams, gauging potential, seeing what fits and what doesn't. After cuts, there is the inevitable run-in with angry parents, frustrated teens as well as the occasional moment of regret where one questions decisions they made. 

Today I got to think about amputating part of my daughter's leg. 

For almost four months we have been blessed to watch Emily grow into perhaps the most beautiful little person I could ever imagine. Her smile is positively infectious. Even when she furrows her brow and looks around in angered confusion, it's enough to draw giggles from anyone in the room. 

But there's that leg. 

We've known about it since she was two hours old. Proximal Femoral Focal Deficiency. Never heard of it before. Never cared that it's completely random. Of all the things I thought might happen to this baby, this wasn't even in the top 50. 

Three months ago, a trip to the orthopedist's office resulted in discussion of the possibility of multiple, painful leg-lengthening surgeries. Or amputation. Nothing you can do now. No hurry. Just go home, enjoy your daughter and we'll see you in December.

Today wasn't much different.

He asked some questions. He poked and prodded and measured. He said things like "significant discrepancy" and described surgeries as "heroic." While I wasn't expecting a Christmas miracle, well...I don't know if I can finish that sentence. 

If I may dispense with the feeble literary attempts, I can tell you we're not much better informed than we were this morning. Doc says when he first started practicing, this would have been an automatic amputation. Right now, the difference between her two legs is approximately seven centimeters, with a projected difference of 20 centimeters, or, just under eight inches. The average leg-lengthening surgery can add five centimeters at a time, followed by a grueling rehab process. Surgeries could begin around age four or five. 

There is also the previously unknown option C. This involves fewer lengthening surgeries, but then shortening the good femur by a couple inches (something done on an outpatient basis.) In the end, she ends up a bit shorter than she would have been had we let her grow to all her Tredwellian glory. Think 5'8" instead of 5"10. 

Or we can amputate. 

I say 'we' like the knife is in our hands. Because, and let's be perfectly honest about this, in many ways, it is. She certainly can't decide for herself right now. Would she ever be able to make such a decision? Would I? Would you?

There are no do-overs here. No re-takes. Maybe we decide to give her a fighting chance and try the lengthening surgeries. She struggles through the rehab. It's excruciating. She guts it out because she's already stronger than all of us. She grows to be one of the most beautiful, thoughtful, determined people you've ever met. She's already faced her toughest fight. The rest of this shit is easy. 

Maybe we decide to give her a fighting chance and try the lengthening surgeries. We listen to her cry as she spends months recovering from the operations. We look at the pain in her eyes. We decide it's not worth it and we amputate. She grows to be one of the most beautiful, thoughtful, determined people you've ever met. Yeah, I've got a prosthetic leg. Pity me at your own risk. 

But what if we're wrong? What if we amputate and there's a sudden breakthrough in surgical techniques or stem-cell research? What if she wanted to keep fighting? What if we're wrong?

Parents make decisions every day that their kids "hate" them for. You can't see this movie. You can't go to this party. You can't take the car. 

What if we're wrong? 

The doctor set another appointment for April. We'll take another ultrasound or x-ray and we'll revisit our options. Perhaps we'll even start to set a plan in motion.

Four more months to think it over.