That's What Makes Us Special

Today is the first Valentine's Day that Shay and I have been married.  I got her a small, stuffed bear and a small box of chocolates.  She gave me Jayne, so I see it as even.  The bear was being sold in the cafeteria and I spotted it when I was getting us dinner.  There won't be any flowers, no gift cards to the spa, and, sadly, I won't be making dinner tonight.  Mostly likely we'll have some variation of what we've had for the past week.  We'll spend the day hoping that Jayne can sleep more than 20 minutes at a time.  That he can eat more than he did yesterday and keep it down.  That today, maybe, he'll take his medicine a little bit better and without redder than a firetruck.  These have become the concerns in our life.  Not that we'll get to spend every holiday between the antiseptic walls of a hospital.  It doesn't even seem to bother us that we'll have the chance to vacation on our first anniversary all the way to the luxurious play room, where other stricken children congregate to wash away the tedium of being bed-ridden, wheelchair bound, or tied to a dire maypole.

I'm confident that this will be the only time that we spend such a day as today in lock down, watching our son fight for his life while we idly wait and see.  Even so, it is an important day for that very reason.  This course which life has so judiciously chosen for us will stay with us for the rest of our lives.  I hope that I can always remember just how my worry, discontent, and unwillingness to give up on my family looked reflected in a heart-rate monitor.  People always want to tell you that adversity and burdens of the soul (or at least the neurological equivalent to what the poets reference ad infinitum), and mayhap that is an accurate representation of what happens to a person who has been through the proverbial fire and come out the other side very much scathed and scarred.  I don't feel that it covers the extent of what a person becomes in such circumstances.

Speaking to my very limited knowledge of such things, it's very much akin to being hollowed out, with choice bits reserved and others discarded.  It's true that you can gain much in the face of heart-wrenching turmoil but there are always things that you can never regain.  Once you help hold your child down while a nurse inserts and IV line into his arm, you don't quite hear his laugh the same way.  When you first get the news that, yes, your son has cancer, you can't help but feel your heart pause as you consider just how fragile this young man is and always will be in your eyes.  It isn't a matter of thinking positive, because I know that Jayne will come out the other side of this with nothing worse than a few scars and a medical bill longer than most beginning-level college papers (so it's measured in words, rather than pages, to intimidate the wide-eyed freshman, who thinks that Moby Dick must be around 1500 words long).  But perception is a fickle mistress and once it's tainted, even slightly, it's hard to shake that tincture.

Jayne is very special to us all, his smile and personality has touched a great many people in very positive ways.  Professional medical staff have offered, if not threatened, to take him off our hands if we ever leave him unattended without his munchkin lo-jack.  As he grows up, the bud that is his mind will blossom into something, someone, truly worth beholding.

But I can almost guarantee that, for years and years to come, I will lay awake at night, Jayne asleep in his room snuggling with his Wicket teddy bear (wink wink, hint hint, say no more), and several words, in large block letters, colorful and sinister, will float across my mind's eye: remission, sickness, altered, vulnerable.  And through all that, through sheer force of will on my part, I will force my mind to replace such dire lamentations with one, simple thing: we made it through.