Wednesday, April 7, 2010

A year and a day later

A year ago yesterday, Blaise had abdominal surgery to take down the ostomy she was given immediately after her birth and re-connect her small intestine to her large intestine.

Big day. Biggest day I ever had.

We had no idea what to expect, and no particular reason to hope for much. Oh, we knew a few things, like that she had a lot of large intestine to work with and at least 20cm of small intestine or so, but that was about it. Blaise was a serious black box on April 5th, 2009 and if nothing else, we knew that we’d find out a lot about the rest of our lives on April 6th, 2009. Here are Blaise and I that morning, having some quality time before the big event:

What we found out that day was and continues to be wonderful. Blaise’s prognosis changed from dire to excellent in the space of about 8 hours. As those of you who follow the blog know, the year since the surgery has brought a series of milestones that we believed we might never reach. An infant who was potentially unable to eat is now a toddler who eats Cheerios by the handful and eyes chicken parmesan with the look of a predator. Blaise has grown bigger and stronger, learned to crawl, take steps, and dance, and knows the names of at least a dozen or so stuffed animals to say nothing of all the books and other toys she can identify when asked.

It’s a pretty great story, and it’s hard not to replay some of its more dramatic moments now that the seasons have turned back to where they were a year ago. A lot of things are the same: the weather is beginning to get nicer, some of the same friends have visited. Of course, for all those similarities, everything is different now.

A good friend of ours asked me a question a few days ago that I think nobody else has asked: “Do you think you realize what happened?” This is a very good question and doesn’t have an easy answer. I certainly don’t feel like I was in denial about the severity of Blaise’s condition at birth and Erin and I have always made sure we understood the choices we had to make. We read about kids who had numbers that looked like Blaise’s, we talked to as many parents as we could, and I frequently wore the CHB badge that said “Ben Balas, PhD” when I thought it would get us more or different information. We learned all we could about what we were facing and tried to prepare as best we could. The night before her surgery, we talked about what we thought might happen and I had decided that the most likely thing was that Blaise would have an ileo-cecal valve on her large intestine, but that we’d not be able to keep it due to the absence of more small intestine. I forget what Erin’s guess was, but my point is that we weren’t being overly optimistic…we felt like we understood the odds and understood what was at stake and were trying to stay rational about the outcome. Still…with all that preparation, all the studying GI textbooks and reading short-bowel blogs, do I actually realize what happened this time last year?

Sometimes I think I do. I catch myself watching Blaise eat or drink from a cup and think that these were the things that may not have been possible had things gone differently at various points. Something catches in the mind and a combination of relief and fear hits. Relief because we’re where we are, and fear because it could so easily have been different.

It’s the last part of that sentence that makes me believe that ultimately I don’t realize what happened. Not really. Things could have been different, and I have no way of understanding what that would have been like. One of our biggest pet peeves is how many people try and tell us that they know how hard parts of the past 15 months have been. They don’t. They can’t. Likewise, I can’t pretend that I know what it would have been like to care for Blaise under different circumstances. Part of realizing what happened when you dodged a bullet is knowing what it would have been like to be hit. This I lack, and this I am comfortable with.

There’s a word many people use when they talk with us about Blaise, and about her surgery last year in particular. I dislike this word for a variety of reasons. First and foremost, I feel like it obscures more than it reveals. Second, I also think it fails to give credit where credit is due. For all I don’t think I fully grasp what happened last year, I do think I learned some things from it, and it’s these facts that I think matter more than anything else: My daughter is an amazing person, as are the surgeons, doctors, and nurses who have taken care of her.

A year and a day later, thanks again to all of you who spent April 6th checking the blog for updates 12 months ago. It meant a lot, and we’re still so glad we had good news.


jcberk said...

I didn't know enough to be watching a year ago, so I went back and read April. Blaise is amazing, and so is her support system (parents, medical professionals, and other friends and family).

Heather said...

Hey Ben, this is Heather Duncan from high school! You popped up in my friend recommendations on Facebook and I followed your link to this incredible blog. Your successes in life have been amazing, from your career to this wonderful little girl of yours. I did a rotation through our Children's and worked with quite a few babies with similar issues. Something so many take for granted (their intestines!) is something many families learn to cherish. I hope Blaise's incredible journey continues on flawlessly, she is gorgeous and you are very blessed!