Tuesday, January 17, 2012


As a kid, I found it hard to be patient. Christmas morning just couldn't come fast enough! Like any other child, I was bursting with excitement, like a kernel of corn ready to pop, anticipating Santa's arrival. That all changed the year I stumbled upon "Santa's" secret storage spot.

I had won the kids' lottery! Quickly, I rifled through all the boxes and bags in the back of my parents' closet, searching for the treasures that would soon be mine. With stealth I stalked new arrivals to the closet and cataloged the contents in my head.

That year, Christmas morning wasn't quite the same. I knew needed to act excited when I revealed what I had been anxiously awaiting, but with the surprise missing, the magic of the morning just wasn't the same.

From then on, I learned that sometimes waiting was better than the instant "now" gratification.

Which brings us to today. Today begins another day of waiting. Unfortunately it is not for Christmas morning.

Today could be the day, a fork in the road we are on, or it might not. You see we are expecting a phone call at any point now that could alter our course as a family even more than it's already been altered.

About a month ago Cole underwent genetic testing for NEMOS disease, which is a primary immunodeficiency. This is not the first test Cole has had by a long shot, yet with  the stakes seem to be higher with every test that is ordered.  After all, initially we were under the impression that he just had allergies. Now, I'd give just about anything for that to be the case.

On Friday the phone rang, and the hospital's number popped up on our caller id. My stomach dropped and I swore my heart was going to jump out of my chest as the moment of truth had arrived.

In the end, it was another specialist with just a question for me about Cole. I caught my breath while my pulse slowed back to normal and wondered if I was really ready for the phone call to come.

Now, a few days later here we are, still waiting.

While we wait, our days go on as usual, filled with work and school schedules, books and play, homework, cooking and cleaning, meals and baths. The busy music composed by the kids drowns out the questions resonating in the back of my mind that bubble to the surface when the house is quiet. All the what ifs. What if he really has NEMOS? What if he doesn't? Then what? What else could it be? When will we know? What will we be able to do?

As crazy as this sounds, as much as I want the answers to these questions as soon as possible, I'm OK with waiting just for today. While we are stuck in the holding pattern, our days are not punctuated by appointments and blood work, just our home routine with a few prescriptions sprinkled throughout the day reminding us of Cole's continuous challenge.

While I'm frustrated that we can't move on, there is nothing else I can do while I wait but enjoy the good moments with all the kids. After all, it's been nice to have had a few weeks where Cole has not been poked or prodded but is babbling and bouncing. I cherish these days of normalcy, and at a glance, I'd never believe my son could have anything wrong with him.

I know the rush for more blood work and appointments is coming, but for today, I'm going to read a few more stories to my kids, watch the big ones play in the snow, and snuggle them each a little longer.

Sure, it's easier to be patient when you are waiting for news you're not so sure of but even if I knew these results were an unexpected gift, I'd still be OK with waiting today. And I know whenever the call does come, I am ready to tackle whatever comes our way, even if it is more waiting.

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