Photographs by Laurie @ Horizons Photography

May 30, 2011

How long? As long long as it takes...

Denial, I have been accused of this so many times I can no longer count the Doctors and the people I know who have said I am cursed with this disease and up to now I have fought it and tried to prove that reality is something I have accepted, if that reality is something I can see. For example - the autism spectrum diagnosis they tried to label Josh with, or the death warrant they gave him at birth. It wasn't denial it was just that I knew what God was saying to me, that God was the God of the impossible, and that he had a plan for Josh. This past three weeks though have been very different, I have embraced and danced with denial like it was my first love. How else can you cope with the weeks of waiting for a meeting about your son that you have no control over? So, instead I have spent the three weeks doing as many fun things with my kids as possible. We went to Niagara and enjoyed loads of fun, we played with water on the hot days in the back yard, and Tim and I took time to enjoy our friendship by shooting each other and our friends in paintball. All the while forgetting for the moment that today was coming, the day that the Sick Kids cardiology meeting would happen, the day that they would sit around a table with Josh's file before them and plan the next step in an attempt to fix Joshua's heart.

I have heard people say 'he'll be fine' and I simply nod, knowing that while he will not be fine I am not yet ready to consider the alternative. There is bliss to ignorance, there is peace to pretending, to imagining that everything really is fine. I hear people tell me that I need to 'trust God' and I smile at them but inside I am thinking 'I do, but it won't stop what is about to go down', I hear people say 'but he looks so good' and I glance away and think 'did you see him yesterday when he was so tired he didn't know what to do with himself?'.

Denial is a state of mind that doesn't really mean you are ignoring the problem, but just pretending for a moment that it's not really true. Pretending, dreaming that you are in a different reality. My friends' Mom died this week, she was too young and so loved, there is no room for Denial in my friends world right now so what do you say to her? Nothing, that is what I have learned... There is absolutely nothing you can say to someone that will actually help. You can't say 'she'll be fine' or just have more faith. The finality of her situation is real. So too is our situation with Josh. His heart is broken, the valve now causing problems is literally UN-fixable and there isn't a thing we can do about it. I sit here and think about how many times the surgeon told me in the pre-op for his last surgery that he 'DIDN'T want to replace the tricuspid' valve', that surgery was too risky, that there were too many complications and because of his size and previous scar tissue that it was dangerous. I hear these words in my head as sure as I hear the kids ask for milk or cookies. I can't deny what they have said, I can't pretend that it's not real or that somehow this nightmare is simply that, a nightmare that I am having trouble waking from.

Today, as we sit and wait for a phone call from his doctor I am being forced to face those realities, I am being forced to look the truth in the eye and it's left me feeling sick to the stomach, my head pounding and a little like I am caught up in those tubes of terror that I once wrote about at Mc Donald's. There is no longer room for denials, there is no more pretending, there is no more imagining a different reality. This is our life, this is our son, and regardless of the outcome we must face it with clear minds, open eyes and strong hearts. As I sit here, knowing that even now they have Josh's file sitting on the board table in front of them I pray that they will find some other way, that they will find some creative way to fix this problem. That they will be filled with divine inspiration somehow. This is not denial but hope, it's hope against hope that we have more miracles left for us, that Josh has more time to prove what kind of man this is making him into.

This is all really just a prayer, an open ended Psalm where I am crying out to God and begging him for something else, begging him for the impossible yet again, begging him for mercy, begging him for answers. How long, I asked that once not too long ago, how long must we sing this song? The answer it turns out, is as long as it needs to be playing we need to be singing. There is no understanding pain sometimes, not comprehending suffering, no explaining away truths that hurt. We are a broken people, and no one is without their own cross to bear. I just pray that we aren't crushed under the weight of it.