Seeking Sunlight

Jumby is growing. Which, for a child, isn't particularly surprising. But as a kid who faces an uphill battle and who was dangerously underweight when we brought him home, is a cause for celebration around these parts. Every ounce he packs onto his teeny little frame means it's one ounce less I can see his ribs sticking out of his body.

My boy? He's a bony little thing.

But with every drop of weight he adds to his body, I worry.

The week before we adopted Jumbster was the week I damaged my back unexpectedly. We brought him home and within days I was broken, flat on my back for the better part of two months, unable to move. It wasn't the best way to welcome our fourth child into our family and since that time I've had back surgery and a very long road to recovery.

My back isn't what it used to be. While for the most part I'm no longer hobbled with constant pain, my back is damaged enough that I can barely bend to put my socks on without groaning in misery. Lifting Jumby means forethought and caution and more often than not it means wincing in pain.

There is no spontaneous sweeping my boy into my arms and swinging him around with joy. There are few moments of me holding him in my arms and dancing along with some music as he bounces in my arms.

There is a whole bunch of carefully assisted lifts and holding him in my arms as my back is carefully supported and praying to God the kid doesn't bounce my spine out of my skin. My kid, God bless his cotton socks, seems to think I'm his own personal trampoline.

I'm managing for now, what with the Jumbster being only 35 pounds or so. I'm managing with my teenaged kids doing most of the heavy lifting of him as often as possible, picking him up and passing him to me so that I don't have to bend and stand up with him.

But I'm acutely aware there will be a day when Jumby weighs too much for anyone to simply bend over and pick him up. There will be a day, not far off into my future when Fric and Frac have stretched their wings and flown the coup to find their own freedom, leaving the Jumbster and I alone to our own devices.

And I'm worried.

I'm worried I won't be able to lift his wheelchair into the back of our vehicle. I am worried I won't be able to pick him up to diaper him, clothe him, to love him.

I'm worried there will come a moment when he simply exceeds my limits. Every hard fought ounce my kid puts on brings us one ounce closer to that moment and I'm scared.

I'm scared his health will take a sudden turn for the worse. A seizure will take what gains he has made away from us all. An infection will set in that he won't be able to bounce back from. I'm worried he will simply stop, the way my Bug stopped. No warning, no explanations. Just another long walk out of a hospital holding the remains of what was once my life.

The fear, it seeps in and steals my breath and I struggle to find air to get through it.

I worry about his schooling and how utterly unprepared our school board is to handle a child with such complex needs as the Jumbster's.

I worry about his adulthood and wonder what that means for Jumby. What will he do if I'm not here to help him? Visions of him being stuck in a nursing home, in a chair or a bed all day bounce in my head. My kid would die if he couldn't explore his world. He seeks the sun like a cat, follows it all day long, chasing rainbows and sunrays.

I've never seen a grown man slither around on a floor before, would he be allowed?

Fear taunts me and creeps in unexpectedly. It finds the chink in my armor and needles its way into the core of my being. It haunts me and tries to rob me of the very joy that is being Jumby's mother.

Every day I smile through the mist of fear that swirls around my feet, trying to kick it loose, shake it free.

I'm scared I won't be able to be the parent my son deserves. I won't be able to give him the life he has earned. I'm scared he won't know I love him as much as I have ever loved anybody else before; that he is so very much my son even if we don't share the same DNA.

I am scared he doesn't know I'm his mother. That he loves me only as much as he has loved every other stranger that came before me.

I'm scared I love this kid so damn much if anything ever happens to him I wouldn't be able to survive it.

So I'm just here, whispering truths through this fog of fear, waiting for the sunlight to peek through once more and carry with it the joy that comes from loving Jumby.

Carry on.

Joy.