" Does he have brain damage?" Andrew asks.
I laugh out loud wondering where he got that idea.
I am in shock, exhausted,delirious.
Andrew is crying. Family are outside the door crying.
I am just hungry.
I just watched as they tried to resuscitate my child. Two fingers in his tiny chest. He is white. Floppy. No noise.....and still reality has not sunk in.
" Your son just suffered a severe hypoxic event during birth. His brain has been starved of oxygen and yes he will have brain damage." says a doctor.
" He is extremely sick".
" We are just waiting to see if we can transfer him, and if he will survive the night. There is not a great chance of that happening"
No bringing my baby onto my chest
No latching on
Welcome to being a first time Mother. This is not the fantasy I had been dreaming about for the last nine months.
I stand up and walk. I get to see my baby before he is taken to a city hospital intensive care unit. His hair is matted with blood, he is filled with tubes, he is sedated. He is mine.
He is alive. Just.
The first month of being a first time Mum for me involved traveling into the city each and every day to sit next to my baby in the special care nursery. On day three my baby had an MRI that confirmed damage to the area of his brain that controls movement, the basal ganglia. It controls all the messages sent to the muscles in the whole body, and indeed I would discover just how many.
We had the turn off machines talk. We met with the psychologist most days.
I would cry every night I had to leave him and smile each morning I got to see him.
Cerebral Palsy. All four limbs. His trunk. His mouth.
I thought oh yeah Steady Eddy, that will be alright.......obviously since then
I have learnt that CP is a huge umbrella term and not one person is the same.
Cooper came home after a month and I began to be a real mum. Sort of. Not the Mum I thought I would be, different, hardened, hope crushed. Andrew was full of hope, always has been.
Cooper required a NG tube to be fed as he had no suck, swallow reflex. I would pump and pump and then syringe the fluid down the tube every four hours. I had major guilt issues about not breastfeeding even though for my baby it was physically impossible.
We had a nurse who would visit us everyday. We then started to have home-visits from physios, occupational therapists, speech therapists. There was always someone there who seemed to know my baby better than me. Everyone thought they knew what was best for him.
" play him music, kids like him love music".......
" take him swimming for his muscles"
" feed him this way, hold him that way, give him tummy time, support his neck"
Inside I wanted to scream. I wanted to just enjoy my baby. I wanted to feel confident in making the best decision for my child and my family. But there was always professionals involved.
I often wondered what parents of neurotypical kids did all day? I would often see them sitting in the park chatting, walking to a cafe. I would see them at the health nurse worrying about sleep cycles or feeding. I would stare blankly as my first time Mum issues seemed like they were from a different planet. I found it very hard to relate to normality.
Would he keep living?
Would he eat?
Would he make a noise?
Would he walk, talk, play, smile, run, jump,
I joined a Mothers group that I would float in and out of depending on how I was feeling emotionally. Sometimes it was just to hard to witness these kids roll, crawl, walk and to hear parents complain about their kids getting into the cupboard or climbing. I sat there silently, trying not to cry and wishing It was my baby who was getting into mischief rather than lying so still.
Time passed. I began to see my baby as Cooper rather than as Cerebral Palsy and we found our feet with our new kind of normal. Our little family of three.
I am extremely proud of being Coopers mother and am forever thankful that he fought to survive so that I can be.
I wrote and shared this as part of Kylies new Mum series on her blog. You can find the full story with some photos from Coopers early days and me with no grey hair! Thankyou for having me Kylie and enabling me to share my words from those early new Mum days.