We wait…

July fourth. This time last year we were waiting on scope dates, remarking how wonderful this day is.

I was naive to believe that we would be in a more healing place by now. The world keeps spinning no matter how much you try to avoid reality.

I sit here in bed, the other four (five if you count the cat) house guests snuggled up in their beds, blissfully unaware of the worry that seeps its way into my mind so late at night.

The sounds of coughing ring through the air as I hear our sweet middle child struggle tonight. He is taking a hard nose dive recently, and my husband wants to stay in denial for now.

The cold burn of the tile floor is still fresh on my skin. I fear we’ve only just begun our fight.

In this familiar situation I feel helpless. I’m stretched thin caring for Gavin, and now I have Patrick.

Surely the offices will be closed tomorrow. Friday we will get him on a PPI in severe hopes that what waits for him is just reflux. For now I listen to his raspy voice and the wheeze in his lungs.

I don’t have much of a faith anymore, I can’t tell you when exactly I lost it, only that I’ve been searching for it ever since. Nights like these make it hard to believe in anything.

A child should not fear food. The very basics that our body requires to sustain life should not jeopardise it.

I am so afraid, and no one gets it. I don’t even think they really WANT to know though. Not even my sweet husband. The reality of putting Gavin on a formula and possibly a G-tube is already too much for him. He said tonight, as I brought Patrick to bed with us, that it must be a cold or a virus. I can hope that I guess….but I’ve seen the underbelly of this disease.

I have sat up all night with a little boy so tired yet unable to stop heaving. I have been to every doctor appointment, held hands and cried tears with them. I see this dark cloud coming, as if it were a hurricane, straight for my littlest boy and I’m petrified.

And all I see as I close my eyes tonight is the helpless look of a three year old in pain, and the sound of him wheezing in his sleep.

We wait for those who have the privilege to leave these kids “at the office” to respond to our cries of help. We wait for appointments and lab results, for approvals and interviews. We wait…

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