Lucas Camilo

We’ve heard from a lot of people that our blog is inspiring, and many of you have commented on what an amazing job we’re doing as parents in a very challenging situation with Lucas. We can’t tell you how much this means to us, but we’ve also joked that other than the few family members and friends who’ve had the opportunity to spend significant time with us since Lucas came home, the information about our lives is mostly received through the filtered voice of our blog… and let’s just say we do a good job of portraying ourselves in a glowingly positive light! Holed up in our basement apartment – for now at least as we protect Lucas during the remainder of the flu season – we’re often isolated from the world, so we use the power of prose to narrate the story of our son’s early life.  There’s a compelling and emotional draw to the story of a child born extremely sick who starts to recover against the expectations of doctors, and at times we get sucked into that narrative, figuring that the call from Oprah is just a few more blog posts away…

But all joking aside, it’s tough to find a balance between embellishing the positive – because we need the inspiration of our own story as much as anybody – and being honest about how very difficult being Lucas’s parents sometimes is.  In our case, having a baby who underwent a brain injury means accepting significant developmental delays, having lots of medical equipment spread throughout our living room, and needing professional nurses to take care of Lucas overnight while we sleep.  Perhaps what is most difficult is that it means not knowing: not knowing whether Lucas will be able to speak, walk, go to school, make friends, and so on.  We don’t dwell on it, but that uncertainty hangs over us everyday.

Yesterday we had a hard day at the hospital.  We went as part of the continuing series of follow-up appointments with various specialists that we’ve had since leaving the NICU.  Up first was the pulmonoligist, and along with the good news that Lucas’s lungs seem to be doing well, and that we can switch him off a medication that was having bad side effects, came some discouraging statements from the doctor.  Some babies, she said, get used to having the assistance of a ventilator and therefore once they have a trach and are attached to a vent they take a long time to finally breath entirely on their own.  She mentioned this without even looking at Lucas, having only been briefed by the pulmonology fellow who spoke with us and later examined Lucas.

After seeing the always-positive occupational therapist we made our way to the 4th floor for a visit with the ophthalmologist.  Lucas had his eyes examined twice in the NICU and both times the results were inconclusive.  This time the doctor reported that there was no damage to the optical nerves and therefore Lucas’s eyes appeared to be just fine.  Then he went on to say that being able to see is also about processing the information that comes in through his eyes, and that we can’t be sure whether that part has been effected by his brain injury.  But, he said, “take his eyes and put them in someone else and they’ll would work just fine.”  Wow, thanks for throwing a dark cloud over that supposedly good news.

At the end of the day we made it home exhausted after more than six hours at the hospital, Lucas no worse for the wear but the two of us feeling sad and vulnerable.  So perhaps we felt the need to write this post as somewhat of a disclaimer: if you come visit us, or talk to one of us on the phone or run into us on the street you may find that we’re actually having a hard time of it, that the answers to your questions about Lucas are not all positive, and that his story, despite our mostly positive telling of it, is not always an inspiration.  (Which isn’t to say that we don’t want or need your support – to the contrary your blog comments/calls/emails/questions/poems/thoughts/prayers are vital to us.)  But as we continue to struggle with this challenging situation, we’re also going to continue to articulate our deep hopes and positive visions for the future, on this blog and in other interactions.   Lucas does inspire more often than not, and his parents are certainly doing their best, trudging through the ups and downs like any other new parents, and living to tell about it.