Lucas Camilo

Lucas had a nice birthday and a great week in general.  We’re not sure that he really noticed that anything extraordinary was happening on Tuesday, except that he was forced to wear an annoying hat, and that all of a sudden there were some fun, new toys to play with (not to mention wrapping paper to throw around).  He smiled most of the day on his birthday and was also happy to have aunt Alice around singing to him all week… plus, she brought along a favorite gift: the chewable book!

Our week was busy so it wasn’t until Sunday morning that we finally got to spent a couple quiet hours together with Lucas, reflecting on his first year of life.  It was emotional to re-read some of the things we’d written during a year ago, like the first-ever post to the Lucas Camilo blog, four days after he was born.  The details of that week will forever be etched in our minds, and we recalled not just the many harrowing moments but also the few positive, hopeful ones.  One of the most jarring things was to see that we actually predicted that Lucas had a neuromuscular disease in that first post, only to move away from the theory (based on observations of various specialists) the following week.  It wasn’t until more than 5 months later that Lucas was in fact diagnosed with a rare neuromuscular disease, Myotubular Myopathy.

Another thing that’s interesting is how much our perspective on that possibility-turned-reality has changed.  The thought was devastating at the time, and we continued to hope that his premature birth and low muscle tone were caused by a central nervous system issue, of which there was supposedly a chance of recovery.  We realize now that we didn’t have much if any knowledge of muscle disease, nor had we ever encountered people who lived fulfilling – albeit challenging – lives with such diseases.  Our initial fears were about all the things that Lucas would never be able to do in the world; that of course is still there, but our overall framework has shifted, especially after getting to know this amazing little guy.  Now, rather than thinking too much about the doors that are closed because of his disease, we think more about the doors that have been and will continue to be opened by this experience we’re sharing together.

That being said, we also marveled at how upbeat and lucid some of those early posts on the blog actually were.  There was so much that was unknown in Lucas’s first days and our daily discussions with specialists and neonatalogists felt like a blur.  We somehow managed to stay strong and make it through, even in those moments when the possibility arose that Lucas might not survive.  And it wasn’t just that first week that was tough – our reflection on Sunday helped put in perspective the weightiness of all that we’ve been through the last year.  It felt good to acknowledge to ourselves the huge accomplishment that the three of us had achieved just by that fact that we were all sitting together in the same room, smiling and playing, a full year after Lucas was born.

And of course, it wasn’t just the three of us that made that first year possible.  Another striking reflection was how much support and encouragement we’ve had from friends and family over the past year.  From Burke’s parents and sister and Krista’s mom showing up days after Lucas’s birth and bringing amazing love and support, to a dozen friends coming out early that following weekend to help us move all our stuff to a new apartment, to dozens more who brought plates of food to our doorstep, to every single card, phone call and blog comment (we just passed 1000 comment the other day :)  Indeed, we were somewhat amazed looking back that we had the wherewithal to publish this blog (on August 21, 2009) but we’re sure glad that we did.  It gave people a way to follow our story and be supportive during moments in which we didn’t feel like getting on the phone or taking visitors.

So one more time we want to thank all of you for your love and support.  We look forward to continuing to share our journey with all of you.

Oh yeah, and here’s some video shout-outs for Lucas! (some of these got lost, unfortunately)

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