As I write this, I'm sitting on the window seat of J's hospital room, staring out into the darkness of a city that's seen more than its fair share of my tears. I've spent part of this evening reading other mom's blogs, the ones who write gushing, sweet stories about how they've risen to the challenge of their child's condition, how they love their life *exactly the way it is*, how they wouldn't change a thing about their child with special needs. Well, that's all wonderful and heart-warming…but this blog isn't going to be like that. Not today.
I've spent the last 5 days watching J. battle fevers that raged, unrelieved, for hours. And I've faced, yet again, the discussions with the doctors about how "complex" she is, how difficult it is to diagnose and treat her ongoing illnesses. Mostly, though, I've spent the last few days pondering what it means to have a child with a condition (or, in J's case, multiple conditions) that are defined as "life-threatening" or "life-limiting". Clinically, those terms are simple – terrifying, of course, but also easily understood. J's diseases – separately or together – have the power to threaten her physical ability to survive. But J., like all of us, is more than just a physical being. And a life-threatening disease poses danger to all of her life – the whole of who she is, or who she could be. J's diseases steal life from her in little ways every day. J's life is threatened, and limited, because these diseases take away the moments that should make up a childhood – Easter egg hunts, birthday parties, summer days at the beach and exciting first days of school. This year, all those things have been taken from her. And that doesn't include all the stolen days, weeks and months that have come before – Christmas at home with family, sledding down the hill with brothers and sisters, fireworks on the 4th of July and school field trips. Individually, each thing is small, and some easily forgotten. But taken together, the limits placed on her life are overwhelming. At 10 years old, J. is beginning to understand that she ought not to anticipate an event, an outing, a party, or even a lazy Sunday at home, because all of those things can be taken away with the smallest of symptoms. On those days, it isn't her body I worry about so much as her spirit.
For 10 years, J. has fought to have a life. Not just to live, but to have a *life*. And when I see what these diseases do to her, what they take from her, I find myself waging a wild, internal temper-tantrum at the unfairness of it all.
I am grateful beyond measure for the life she's been given, and I revel in the moments when she does get to live that life the way a child should. But as I looked at the pictures friends shared of their children climbing the steps to school this past week, or enjoying the last days of summer this weekend, I had only to turn and see J., covered in cold packs and cloths, IV tubing running from her hand, to realize once again the reality of a threatened life.
