Bringing Josh home was both a surprise and a joy. We were so happy, he was so happy, I don’t think any of us had anticipated how quickly they would let us go home. Our first night was to be spent at a hotel near to the hospital, we prepared to have a good night. Josh was so excited to be out of hospital was bouncing off the walls, still shaky but he wanted to jump off the bed, skip down the hall and generally cause himself harm at every turn, He sat on the bed, I sat at the desk working, he would look over and catch my eye and then smile. It made my world, his smile makes my heart sing, quite literally. My tummy actually gets all warm and squishy.
The problem of course is that he pushed himself, I truly believe that he must have thought we were leaving it all behind at the hospital, all the pain, the fear, the terror of that week. I think that when we drove out of the parking garage and he saw the sunlight he felt freedom, heading home he probably thought it wouldn’t hurt there, that things would return to normal, he could play with his toys, see his dog and even bug his brother.
Then Saturday morning happened. He woke screaming in pain at 3 am, I fought some medicine down him and he managed to get back to sleep. Only to wake again at 7:30, wailing again in agony. We brought him downstairs and laid him on the couch but he wouldn’t move, wouldn’t drink, wouldn’t eat. His little eyes looked so sad. He slept on the couch, had a few little snacks but still refused to move or drink and he seemed betrayed when I tried to force medicine down his tiny throat. We watched all his favorite movies, tried to buy all his favorite foods and did everything we could to get him to have even just a sip of anything to drink. He seemed like a different child, gone was the happy little boy trying to skip down the halls of the Delta Chelsea, or the mischief seeking kid who tried to jump off the bed just four days post op. He had vanished and in his place was a sad little boy who would cry if we even spoke about his time at the hospital.
If I pull off his shirt he holds his little hands over his scar in an attempt to hide the ugly marks and with his eyes closed he says ‘no’ until I put his shirt back down. Nothing for him is as it was, and try to explain that it won’t last forever to a 3 year old, it’s hopeless.
The waiting was hard for it’s reasons, the surgery, the CCU were terror filled days, but the aftermath, the days since Josh has woken from sedation, the healing, this has been horrendous. To watch him suffer, to see his tears, to see his eyes turn to mine filled with questions, to hear his little voice pleading. This, this is by far the worst stage.
That being said, I see daily improvements. Less medication is needed to ease his pain, a few more steps were taken, his eyes turned to me yesterday and instead of tears I received a smile. Small steps, baby steps, but they are marking the journey, they are leading us down the path of healing and bring us to a place where we can look back and only have memories of this time.
My fear is that this will mark Josh, that his self consciousness will stay, that his eyes will always hold a touch of fear, a touch of betrayal, that he will always be slightly less trustful of me, of his doctors. How do I regain his trust, when with all my heart I only did what I knew to be best for him, when all I wanted was for him to be whole and healthy. I love that child more than I even dreamed possible, and I would do anything to take this from him. I would give my life for his, put my heart on the table if it meant he would not know one day of suffering. How can I explain this to a child of only three years old?
How is it, that he can look at me and smile, kiss me good night, giggle with me at SHREK burping, or want comfort from me when he hurts? My son, who has suffered so much, braved too much and loves so well, my son who has faced this surgery with courage and fight, who has lived through the aftermath and is still able to give cheeky grins. How did I find myself so blessed, where did this child come from? Surly not from me, not from my fear, not from weakness. He is truly my hero, and I thank God for him, pray God’s healing on him and I with all that I have, all that I am I pray that he forgets, I pray that his eyes soon hold only joy and mischief and none of the fear and pain that we have seen this week.