So tomorrow is the day we’ve been dreading since our last big surgery three years ago. We will start preparations tonight and we will be the first and only patient for our doctor tomorrow. I will head over the the other hospital at 6:30 to register us as inpatients and take care of all the paperwork. Dad will be giving Ben one more shower with chlorhexidine to ensure he is clean as a whistle and further reduce chances of infection. We are told that our surgery will be long – our first estimates are about 6-7 hours and after that we will be transferred to the ICU and stay there for a while post-op. We have a surgical plan which is to do an osteotomy (bone removal) of a block of bone around his T3 area – we are hoping this will build in a compensation for his neck, which continues to be problematic. To fix the problem where it actually is will be too dangerous. After the osteotomy, we will assess his rods and examine the screw sites. We have the possibility of extending his spinal rods up his cervical spine. This is something we hope we don’t have to do, but we have the equipment ready just in case. The only thing left to do is trust – and for me that is the hardest. I think one of the most difficult things to do as a parent is to trust others with your children.

Tomorrow I will purposefully place my child into the hands of others – knowing that what they will do will cause him weeks and months of pain – in the hopes of improvement to our child’s life in some way to make this more meaningful. This is the most difficult part of our journey.

When I first realized that Benjamin had to have his surgery – the images (memories) that sprang to mind were as vivid and painful as if his prior surgery was last week. These memories triggered physiological repercussions throughout my body, a clenching of worry and grief.

One of the ways in which I can control Ben’s surgery day is to give him a calm and peaceful launch into his sleep world. I am a big advocate for parents coming into the O.R. to help put their children to sleep (if they want to and are able to). I have done this since his first CT at 2 months old. Research tells us that children who are sedated in a calm state come out of sedation more gently and peacefully. I will once again try to be the one to help put him to sleep, but have told him that it is “no big deal” if I can’t. There’s no need to show my disappointment to him if this doesn’t happen.

We have a brilliant surgeon who has both skilled hands and an ingenious understanding of human anatomy. The more I know about him, the more I admire his ingeniousness and humility. Benjamin will become the canvas upon which his artistry and science will leave their marks. He will be molded, his bones will be shaped, his body reconstructed. Yet still, I struggle with trust. So my decision tomorrow will be to trust because that is all I can do. Having said that, I can’t surrender completely. While hands are working through the percussive rhythm of monitors and clipped words, my mind will be forcing itself into the operating room – willing a nurse to brush their hand across my son’s cheek gently, willing a kind word in his ear, willing an anesthesiologist to throw out an “atta boy Benjamin”, willing his doctor to take his time and miss nothing. While this beautiful work of art is being created, I will trust, but I can’t surrender completely.

I was so touched when I heard Ben talking to a younger patient a few days ago. The boy, our friend, was going into surgery the next day. Ben pulled him over and said “hey buddy…I got a tip for you…tomorrow your only job will be to sleep. It’s only gonna last 1 second…maybe 2 – that’s it – our job is pretty easy”. I asked him after why he said that to him. “I just didn’t want him to worry” he said. I think my kiddo is growing up!