Struggle

Life has meaning only in the struggle

Triumph or defeat is in the hands of the Gods

So let us celebrate the struggle

-Swahili Warrior song shown in the first scene of Lorenzo's Oil

When we were waiting (and waiting) in the ER last Tuesday I had a chance to get really scared. I had a chance to revisit how demise could be right around the corner for Christian. I mean for any one of us, really. But for Christian, a flu gone really bad, a nasty pneumonia, just complications from a bug...that's all it takes.

So I rocked him in my arms and prayed really hard that we'd be able to go home soon. His breathing was fast and a little labored and he was so miserable, falling in and out of sleep. Maybe it was dramatic of me but I prayed please, don't let it be now. Please. I don't care if he never progresses another inch, I just love him and I want him here with us and healthy.

One of the interns, the eager one, called him complicated. It always takes me by surprise when some one calls him complicated or fragile because, to me, he's just Christian. In fact, isn't he less complicated than a flailing, screaming, neuro typical 2 1/2 year old? He'll lay very still for you, intern, and all you have to do is take his blood and urine, run some tests, look at his chest x-ray, and then you'll know what's wrong. Does that sound complicated?

I guess it is for people who don't live with a child with special needs. Brain injury is complicated. But it's become our lives, and gladly, we accept the challenge if it means we have Christian right here with us.

When I meet new people who don't know our story and it comes time to tell them about Christian, I don't waste any time. I tell them our story right away in order to ward off questions about whether the two little ones fight or get along. It's like a challenge. For a split second I think - Are you ready for this? Can you handle what I'm about to tell you? Will you look at me with great sadness or do you have an aunt or cousin or, maybe even a child of your own, who shares the same condition so instead of sadness you'll give me a look of understanding and shared grief?

Yes, all that goes through my head in a split second. Not complicated at all.

Anyway, I'm proud of my little warrior. He's a fighter, he is. And would you believe the boy in this video was in the ER last week?

Maybe it is complicated. Maybe it is a struggle.

But it's a struggle worth celebrating.