Lucas Camilo

Lucas has been stable since getting out of the hospital last Wednesday.  But we’d be lying if we said being home has been happy and easy.  In fact, we’re still recovering from the trauma of Lucas’s emergency hospitalization, with residual fears about what could happen at any moment.  We’ve taken some extra precautions, and decided we weren’t quite ready to send him back to school.  His respiratory health has been fine and there haven’t been any other scares since he’s been home.  Given the likelihood that the episode was the result of an accident and not a change in his overall health it would seem that what’s most important is to make sure there’s always someone with Lucas who can respond to an emergency.  And yet all of us – parents, grandparents, caregivers, doctors, etc – are just a little more on edge for now.

On Sunday and Monday Lucas seemed to take a few steps back in his recovery.   He was really lethargic, and cognitively a couple steps slower than even the previous few days.  He was having more trouble forming words, and the few he did say were slurred.   He seemed to still enjoy most of his favorite routines, but it was taking him longer to remember and respond, and he didn’t have the coordination to do most of his apps on the iPad.   Perhaps most unnerving was his passivity — he didn’t make requests or say “no” to anything.  His nurse Lauren wasn’t quite sure what to do with him Monday morning when Lucas didn’t immediately start demanding books, videos, apps, flash cards, etc.

The idea that Lucas may have been injured in a way that could pose more long-term challenges feels absolutely unfair – borderline cruel of the universe to throw THIS at a kid who already had so many significant challenges moving and being in the world.  We’ve tried to be patient with this recovery, but at times sitting and waiting has been like marinating in a messy stew of fear, sadness, anticipation, and worry, mixed up with love and hope and appreciation.  Throw in a half cup of exhaustion, and you have a couple of glassy-eyed parents.

For better or for worse, any time we get too caught in the details of worrying about recovery we can zoom out and remember how happy we are that he’s simply alive, responsive, aware, active.  Given what he went through the fact that he’s functioning at all is good news.  Many doctors have said that they expect him to fully recover, especially since he bounced back so quick in the days following the accident.  It just may take some time, they say.  So we’ve been riding this emotional yo-yo, going back and forth between rejoicing in the simple fact that Lucas is alive, then feeling worried and impatient to know whether we’ll get our Lucas back exactly the way he was before.  Of course, we’re going to love Lucas like the amazing kid that he is, no matter how “full” his recovery, no matter how long it takes.  Our life with Lucas never was normal to begin with and we’re prepared for it to be even less normal.

Such was our attitude yesterday afternoon when he suddenly perked up and started saying more words, not to mention counting in multiple languages (albeit slower than before) and asking for his phonics flashcards.  Then this morning at his doctor’s office he was demanding repeat readings of various animal books.  We laughed and breathed a little easier.

Now we’re feeling a little sheepish about how anxious we were a couple days ago and trying to remind ourselves that it’s only been a little more than a week and that recovery will take some time.  It’s like a mantra.  Meanwhile, we’re consulting various doctors, families, and other healers about what can be done to help his recovery, and doing some research on our own.  We’re pretty sure that they’re all going to say that we just have to wait… but even so, we’re finding ways to give Lucas some extra support.  Yesterday afternoon – right around when he perked up – Lucas had an appointment with a craniosacral therapist and he’s got an acupuncture appointment scheduled too.  We’ve also made some minor adjustments in his diet.  Any other healing advice folks have would be much appreciated!

We joke about some “positive” changes too, like the way Lucas has been a lot more agreeable and amenable to things since the accident.  He’s even enjoying snuggling in Krista’s arms – something he hasn’t done for more than a minute or two since he was a year old.  So while the getting is good Krista has been cuddling up with Lucas on the couch, in bed, at the doctor’s office… wherever he’ll go for it.  The docs say he needs lots of rest, and what’s more restful than lying in mommy’s arms?