As Clear as the Hand in front of Her Face

It's utterly fascinating.

This thing, this wonderful, soft, shape-shifting object that she holds in front of her eyes, slowly turning it so she can observe it from different angles, bringing it to her mouth, taking it out again to look to see if it has changed, this thing: her hand.

She watches intently as she flexes the fingers, curling them in, then straightening them again.

She shakes it. Lifts it above her head.

Magically, she can make it return. Her eyes widen. It's incredible. And it's hers.

Watching my five-month old Zoey discover her hands and feet reminds me how silly I am to let so many distractions swirl around my head and take me away from the simple beauty of what is right in front of me.

I certainly have much on my mind. Advocacy in the midst of motherhood makes for an emotionally exhausting existence. Advocacy inspired by grief, pain and guilt can certainly become obsessive if I'm not careful. I'm not going to stop my efforts to spread awareness and raise funds for Childhood Cancer research, to be clear.

But it shouldn't stop me from marveling at this adorable shape in front of me, holding her toes, twisting herself, arching her back, successfully flipping onto her tummy and looking up at me with pride in such a remarkable accomplishment.

She is life. She is beautiful.

We are blessed.

There is another side of being an Onco-parent, one that strips us of the full enjoyment of watching our children develop. Typical childhood symptoms -- bruising, tummy aches, fatigue, constipation, diarrhea, vague causes of pain -- send us right back to the state of worry, stress, agitation. Could it be? But it would be rarer than rare for a sibling... but it happens... it does happen. Do I ignore this or take it seriously? By the time we found it in Arden, it was stage IV, high risk - bone mets.

I wish I could say we can turn these misgivings "off," just enjoy life and our children, but somehow, we still carry the disease around with us, sort of like being haunted by its ghost. Neuroblastoma may no longer be a part of our lives physically, but it still has a grip on us emotionally. Its spectre still eats away at our confidence as parents, that reassurance that for the most part, everything is going to be ok.

I took Grayson to the pediatrician this week for a series of accumulating issues.

He's fine.

I think.

To her credit, this doctor took me very seriously. We went over his symptoms, one by one. She asked me very specific questions about other symptoms -- whether I had observed he was exhibiting them, one by one.

He's fine.

She thinks.

She recommended getting him an ultrasound, just in case. Just for peace of mind. We have a good excuse (other than the fact that our daughter died from a deadly disease, ) in that we've been monitoring a kidney issue he's had since birth called Hydronephrosis (which is not life-threatening, just reflux between the bladder and kidneys.) It is a non-invasive test, one that would not subject him to harmful radiation. He's had so many before, he just throws back his hands above his head and giggles when the wand goes across his tummy.

I'm not about to put him into a CT scanner for peace of mind. They'll let us know if we need to take additional screening steps.

He'll be fine.

He is life. He is beautiful.

Despite our curse, we are blessed.

Oh, and by the way, he's a big boy, going on the potty now.
That's a first for us in this house.