Today was my final day of ignoring the week ahead, we allowed ourselves today to forget and just enjoy time as a family. We headed to the Airshow and the CNE and ended up at the roller coaster at Ontario Place. The kids were exhausted by the time we got home but still had enough energy to head out to the back yard for a game of ‘fly’ with Daddy. Watching Josh fly through the air, all smiles, brought lumps to both Tim and I because we know that in just a few days we won’t be able to toss him around the way he loves. By the time the game was finished Josh was so tired that he became lethargic, he wouldn’t eat, and finally wanted his bed at 6:00.
Now the house is quiet and Tim and I are left with the knowing. Tomorrow morning I will head out the door with Josh and make the short trek to Sick Kids hospital for our pre-op appointment. He will have blood tests, chest X-rays, a duplex scan and then we will sit and talk with the surgeon, have teaching on what to expect (think we can skip that part) and then we will make the trip home, with a little boy who knows what is coming. We have managed to keep it from him up until now, wanting to protect him from the fear and worry that he struggles with and has no words to express. There will be no more hiding tomorrow, he will hear the surgeon, he will hear us, he will know what these tests mean and he will do his best to distract us, trying to get our attention off of the words that the surgeon says. He will bring toys to us, he will act silly to make us smile, he might even close his eyes and pretend he isn’t there. Nothing he does will stop what is about to happen, nothing I do will be able to put a halt to the pain about to come. We will once again sign consent for them to stop Joshua’s heart and cut into his tiny.
As I sit here writing this I feel peace, as I see him showing more and more signs of heart failure I know that we are doing the very best that we can do for him. If it were possible, if I were allowed, if it would help, I would happily give my blood, have my chest x-rayed, have a duplex scan done on me and come Thursday I would allow them to stop my heart, cut me open, if it would save his life I would gladly offer mine. The problem is that only he can do this, and somehow we need to find the words to explain this to him.
I have been telling him over and over again that God can hear him, without him needing words, God would know what he needed, he would comfort him if he is scared, he would help him and Josh wouldn’t need to have words, he would only need to trust his friend. My hope and prayer is that he understands what I am telling him, I so badly hope that he understands enough to know peace and comfort from the knowledge that his friend and maker is with him no matter what. I hope it will be enough because I can’t think of anything else to offer him.