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. 

The latest pictures.

Her first pair.

This is a big moment for Ems. And for daddy, of course. Let's be honest, I've tailored my entire career around my love of the Swoosh. I think back to a trip to Chicago in the summer of 2002 when we just had to stop by Niketown. "Excuse me fellas...I have to pick up some work clothes." Oh, the jealousy!

So, is it really necessary to drop $20 on a pair of shoes that she won't be able to fit into for more than a minute when she's not even standing or walking? Abso-freakin'-lutely.

Well that's something.

Discovered a new website today which boasts the ability to instantly analyze and label a blogger's "type." Hey, I have a blog! Let's throw this at the wall and see if it sticks. The verbatim analysis of me by typalyzer.com:

"The entertaining and friendly type. They are especially attuned to pleasure and beauty and like to fill their surroundings with soft fabrics, bright colors and sweet smells. They live in the present moment and don´t like to plan ahead - they are always in risk of exhausting themselves. The enjoy work that makes them able to help other people in a concrete and visible way. They tend to avoid conflicts and rarely initiate confrontation - qualities that can make it hard for them in management positions."

Anybody who had soft fabrics, bright colors and sweet smells in the office pool, come collect your winnings.

Just because.

This picture is too good not to post. One of St. Jan's high school cronies knitted this sweater for Ems (thanks Kathy! She's a regular reader) and it is a fine-looking garment. I know...it's light blue. The color of little boys. You know what? I don't care. We've dressed her in fluffy pink bunny suits and it doesn't stop people from saying how handsome he is. Come on, people...grab hold of the reins!

Conflicted.

Mornings can be tough. 

There are times when this is the nicest, most peaceful part of the day. I take the dogs out, eat some breakfast, and sip coffee while perusing current events (as evidenced by my earlier post.) Meanwhile, the ladies sleep, the sun shines in the office and Miles Davis quietly commands the room. Sounds nice, right? Are you with me? I think you are. However, it's not always right out of the Folgers commercial. 

Today would be one of those days. Ordinarily I might fret about going to the gym or getting a household project done. I mean, there's always something. Usually that something is quite manageable and can be whisked away in a matter of seconds as I hear my dad in the back of my head scoffing about what I deem important. 

But as we sit 20 days away from Emily's next orthopedist appointment, I cannot help but be consumed by the unknown. Last time we checked in with Dr. DeLuca, he was optimistic and encouraging with even a worst-case scenario that we could all live with. We didn't want to live with it, but we could. 

Right now, I bounce back and forth between playful confidence and gloomy doubt. I want to believe her leg will grow and through only brief surgical interventions, she will come out of this as a shining example of the miracles of faith and modern science. She will never know the pain or embarrassment that those with PFFD once did. It will be something we all look back on and wonder what we were so afraid of. 

That's one scenario. 

Unfortunately, I tend to spend most of my time on the other side. I don't want to. It just happens. I cannot escape the image of her trudging into the house and sadly asking why she can't keep up with the other kids. I worry about my beautiful daughter being shunned by some clique who can't think of a better reason than her limp or her prosthesis. I once had someone tell me, "Just don't think about it." Good one! I'll give that a shot. 

Then there are stories like that of Sarah Reinertsen (this is her website.) Sarah was born with PFFD and had her leg amputated above the knee at age seven. Nobody would have faulted her for shutting down and becoming a bitter woman, shaking her fist at life for cursing her with just one good leg. Instead, she trained her ass off and ran the Ironman Triathalon. And finished it. 

It's not an islolated story. ESPN the magazine published this piece on the future of prosthetics in sports. The last line of the story is "Shed a tear for the "disabled" today. Tomorrow they might pity you." Well then. 

Where does that leave me? Probably in the same spot I was when I sat down to write this. Conflicted. But hopeful that she'll be stronger than me. Hopeful that she'll see this as a challenge. And that she'll want to prove herself, pehaps by running the Ironman. As a supportive father, I would be there for my little girl. 

Have I mentioned it's in Hawaii?

Theonion.com hits the nail on the head.

"Dear Lord Baby Jesus..."

We got a call this week from the woman who is now the director of Trinity Church's annual Christmas pageant. Thinking I was a little too old to reprise one of the many roles I played as a child (seriously, I covered almost everything...Joseph, Herrod, shepherd, townsperson, narrator, all three wisemen...I had chops!) I instinctively knew that something different was up. Would young Emily be interested and/or available to play Baby Jesus in this year's pageant? Well, we spent a few days trying to get a hold of her agent, her manager and three of her "handlers" with no luck. So we just said, darn it all to heck, she can do it!
Sunday, December 21st Emily makes her stage debut as Jesus. As far as acting jobs go, I gotta believe it's all downhill after this.

As promised.

Let's try this again.

Anybody who just happened to be checking my blog last night between 10:30 and 11:15 might have seen an ever-evolving post with multiple pictures and a brief summary of recent events. Because the folks at blogspot make formatting posts a somewhat arduous task, because I'm still a rookie at this, and because I have some pride in my work, I couldn't get things to come out quite right. Therefore, I would post, edit, re-post, rinse, repeat. A lot. This, of course, leads to the painful realization that it's now 11:15, the alarm is still going off at 5:30, which is followed by some cursing and one big definitive delete before I stomp off to bed. I'm SO mature.

So here's what we're going to try. Whenever there's good stories to tell or anecdotes to share, I'll take the time to work on the literary side of things and maybe throw in a picture for good measure. If there's not a lot going on, I'll just flood the place with recent pictures of our girl. Deal? You actually don't have to agree to it if you don't want. It's going to happen anyway. Sucker!

Which brings us to the past week. Big things were happening for Ems, including her first halloween, her baptism and a historic presidential election. Halloween was quiet this year as Kate went off to work, leaving me, Ems, Moose and Piper to handle all candy distribution. With Ems napping and the dogs penned in the family room, that left me to witness the magic that is seven-year olds being driven by their parents from house to house to collect free candy. Next year I think we're just going to skip a step and inject all our trick-or-treaters directly with diabetes.

On a more positive note, Emily's baptism was a truly wonderful experience. Friends and family came from all over to share in her big day. She was mellow as can be during the service and even smiled and giggled when Rev. Fiddler poured the holy water over her head. Was she pleased being awash in the holy spirit? Was she laughing at our feeble attempts to curb her wicked potential? Only time will tell...

After church, everyone joined us back at Camp Sweatpants for food and merriment. It was wonderful to watch people politely elbow their way to the front of the line so they might hold our little girl. Kate and I felt truly blessed to be surrounded by so many caring and generous people. It's hard not to be optimistic about Emily's future knowing the love and support she will always have. She will be great and it will be because of all of you. 

In the meantime, we have our next appointment with the orthopedist four weeks from tomorrow. Not that we're counting. 

That's all. Pictures to follow.

Just a quick one.

It's been a minute since my last post and for that I deeply apologize. I know there are literally...um...a few of you who actually check this blog regularly looking for pictures, stories, inspiration...knowledge...advice. I don't know. What are you looking for, anyway?

Regardless, we're prepping for a big weekend around Camp Sweatpants. Kate will be at work Friday night leaving Emily, Moose, Piper and I to handle all candy distribution. Sunday will be a nice day with family and friends as Ems gets Christened at the same church where Kate and I got married. Saturday we might hit Bed, Bath & Beyond....I don't know if there'll be enough time!

I promise plenty of good pictures next week.

Two months? Really?

It's true. Emily turned two months old on Thursday. (On a completely unrelated note, we've clearly turned a corner. It's just after 10 pm on a Saturday night and I'm on the computer. Kate's feeding Ems on the couch. The only one drinking out of a bottle right now is the kid. I mean, what the hell? How did we get here? But I digress.)

Two months is fun. She's smiling when we come into view. She's holding her head up. She's discovering her hands and feet. But it's not all fun and games. Her gas has reached a new adult level. Between Daddy, Ems and Moose, it will be a small miracle if the house doesn't go up like a roman candle one day. Hard to believe more people don't stop by.

Of course, two months brings another doctor's appointment complete with three shots. Ems was not a fan. She let everyone know. 

Ah, but there's a light at the end of this particular tunnel. When Emily was born she was 22 inches long on her left leg and 19 on her right. This checkup showed she had grown a little over two inches on both sides. 

Now, in case you hadn't picked up on it yet, I am not a doctor. I know proximal femoral focal deficiency is a rare condition with various intricacies involved that are unique to each individual case. Her right leg will not catch up to the left without divine/surgical help. Still, I can't help but think that as long as her legs keep growing at the same pace, that's gotta be a pretty good sign.

Let's hope the real doctors agree.

I shouldn't have introduced her to the Cubs.

"I'm sorry, sweetheart...but there's always next year."

Emily, the Cubbies and God.

Yes, they're all related. How, you ask? Well, settle in, Bubba and I'll tell you. 

As I was saying my goodbyes to the family this morning, Emily briefly woke up and looked up at me with a twinkle in her eye.

"Daddy, do the playoffs start today?" (Yes, she's seven and a half weeks old. She's our little prodigy. It's really something.) 

"Yes, Ems, they do," I replied. 

"I'm going to wear my new Cubs tee shirt 

today. And when you get home from work, we'll watch the game together." 

"That sounds wonderful. I can't wait."

It was quite a moment. Nice way to start the day. 

Moving ahead to this afternoon. The good Rev. Andy Fiddler stopped by to discuss the plans for Emily's upcoming baptism. While he was here, UPS rang the doorbell to drop off a package. I excitedly tore open the wrapping paper to discover the authentic Mark Grace Cubs jersey I had ordered last week. I had not expected it to arrive until maybe October 3rd at the earliest. "It's a beauty!" Exclaimed Rev. Fiddler.  I asked him to bless it. He chuckled. I wasn't kidding. 

My point is this...my prized jersey shows up prior to the Cubs' first playoff game while discussing the baptism of our daughter with a man of the cloth. 

I think it's a good sign. 

Go Cubs.   

Another peek into the future...

"Oh, snap! Girl, this is my song!"

You want a piece of me??

I was always pretty sure my child would grow up to be a bit of a smart-ass. A mouth that was a little too quick, no real filter to speak of, and, perhaps, a sense of humor that would make it almost tolerable.

However, Ems is apparently going to take things a step further. As these photographs clearly illustrate, my daughter will have no problem beating you senseless.

Here we go...

Our beautiful daughter Emily was born August 9th, 2008 with a rare condition known as Proximal Femoral Focal Deficiency. Because we are fortunate to have so many caring family and friends, I figured this would be the easiest way to keep everyone in the loop. 

Now, my experience with blogs is minimal. My cousin Sarah has a blog and it is creative, well-written and always allows you to walk away feeling pretty good about life. I aspire to head in that direction as opposed to the majority of sites penned by ham-fisted, narcissistic d-----bags. I also aspire to limit my use of the word d-----bag. I make no promises. 

My point is, I want this to be about her. I will therefore try NOT to be pessimistic, skeptical, self-absorbed, opinionated, uninformed...um...long-winded...unfunny...you get the idea. Shut up.

Let's get to it. Remember the point of this? Emily. PFFD. Right. 

To those of us without a strong medical background, PFFD is a completely random condition where a child's femur (or thighbone...I'm not dumbing it down anymore. I can't. I won't!) stops growing or fails to grow at all while in Mom's tummy. 

Shortly after Ems popped out, we were told it looked like her right leg was shorter than the left, which was probably the result of hip dysplasia and not a big deal. When the doctor sat down in front of us two hours later, it was clearly a big deal. 

The next 48 hours were a bit of a whirlwind emotionally as we got to know our new baby while trying to stay out from under the cloud hanging over us. Our already fragile state was not helped by a visit to the orthopedist who, in telling us we needed more information before any decisions would be made, said that amputation and prosthetics would be a possibility. 

Dammit. 

Fast forward to Friday, September 5th. An ultrasound was done on Emily's leg and our doctor tells us that it looks like we'll have a number of options. Her hip joint is looking good and, if things develop, we may be able to surgically lengthen her femur. 

Naturally, there are pros and cons to this. The downside (of course I would list that first...get used to it.) would be that this process involves a number of painful surgeries followed by extensive rehab. The upside...two good legs. 

Our worst case scenario would be that her femur does not develop anymore and her hip joint takes a turn for the worse and this bionic leg lengthening process fails to be a possibility anymore. Should that occur, we would have to amputate her foot, construct a working hip and fuse her tibia, fibula, knee and femur to create one solid thighbone. Picture a regular leg with an amputation just below the knee. 

Here's the thing. Either of these scenarios make it possible for Ems to jump on a trampoline, go to the waterpark, play sports...pretty much do whatever it is she wants. She may never be able to jump all that high off her right leg, but, if she was going to take after her pops, that wasn't going to happen anyway. 

I won't go biblical and begin quoting Psalm 23 to you, but Kate and I are well aware that this will not be an easy road. There will be difficult decisions. There will be struggles. But we are surrounded by the best people. I can't imagine going through this without our family and friends. Emily will always feel loved and smart and beautiful and strong. And that is because of each and every one of you. 

Her next appointment is December 5th. Until then, we are going to enjoy each moment. Cuz this is one awesome kid.