Michael had a rotten night, restless with an unwelcome bout of his reflux. Yesterday he had needed a neb due to congestion. Last night was a combination of air conditioning (I should have turned it off and opened the door), unease about Lucky and those disorientated jolts when we wake up in unfamiliar surroundings.
So, this morning we are a little worse for wear. I let Michael sleep on after I left the bed. A hot shower with plentiful water has helped. And we will have a slow start. We have been forewarned that Michael's children are coming to visit their grandfather this morning. So we have to stay away.
I am sitting here, surrounded by swirling thoughts, emotions and memories whilst Michael is having a long soaking shower. I thought I had become more used to hospitals and their smells, sights and scariness. Living with Michael is a reminder that I have to be on my toes. Especially as we are entering the cooler weather.
This has been an ongoing process over the last few days. I think I have finally worked out exactly which demons are at my door. Thirty years ago, next month, Christopher was born. Nine weeks premature with a host of health issues battering his baby body. How quickly I entered a routine of normality intertwined with chaos. I used to complete some housework whilst Vanessa (then seventeen months old) had her first sleep. Then I'd pack her and me off to the Children's Hospital, her to the Child Care Centre and me to Neonates to spend another terrifying day with my little boy.
Vanessa was already showing signs of distress but I was so wound up with daily crises that I didn't notice my daughter. This was a time of utter madness. On the surface, I was coping admirably, juggling a toddler, an absent husband and a critically ill baby. Those days in Neonates were the stuff of nightmares. We lurched from disaster to disaster. Necrotising enterocolitis and a metabolic disorder and Noonan's Syndrome and a horrendous congenital heart disorder. Coupled with severely premature lungs. He really didn't stand a chance. There was no happy ending.
My tiny Chris lived his forty-eight days in Neonates and died on a wild and rainy June evening. Suddenly I was left without a purpose. I'd become used to the ride. What on earth was I going to do with myself?
This is Ground Zero all over again. We are all dancing as fast as we can, trying to behave like this situation is acceptable. We are taking shifts sitting with Lucky so one of the family is always with him. He has been moved out of ICU into a sheltered room in an adjacent ward. He has been disconnected from all the machines that go ping. He is sleeping most of the time, open-mouthed as if he needs to catch his breath. The miracle is now highly unlikely.
So Michael and I are with Lucky. Michael's holds his Dad's hand and struggles to listen to his odd whisper. Lucky's beloved Nana Mouskouri is singing in the background. I hope Lucky can feel Michael's hand and Sandra's hand and Darryl's hand and all the love enveloping him. So he knows he isn't alone.
For the best father-in-law ever.
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