When Cooper came into our world it changed everything. It turned our world upside down, it changed us, it changed our family. It was nothing we had expected, and nothing that we knew.
Cooper arrived into our family four years ago. Some days it feels like a long time ago and then other days it feels like our journey has just begun.
Cooper is our first child, our first parenting experience. His arrival was very traumatic. I still find it hard to talk or even think about the experience as it takes me back to that moment in time when everything seemed to go wrong and Cooper became a different child to the one I carried for nine months. I still have moments when I don’t understand how my body did not know he was in so much trouble. I have angry moments and sad moments but most of the time I try not to think too much and just get on with life.
Cooper’s birth resulted in a brain injury from lack of oxygen. The cord was wrapped around his neck, arms and body. When he was born he was pure white, very floppy, had no heartbeat and was not breathing. He was beautiful though, with a thick mop of dark hair. All of a sudden my fantasy of my baby being pink and crying and being brought up onto my chest was squashed. He was taken to the resuscitation table and they tried to start his heart and get him breathing. He was incubated and most importantly, alive. I had no idea of the enormity of the situation as I was just glad he was out and breathing.
Over the next few hours they tried to stabilise him enough to move him to NICU. We saw many doctors and specialists at the Mercy hospital in Melbourne. I remember so clearly my husband Andrew sitting in the corner of the room sobbing as I listened to people saying things like “brain damage”, “survival rates” and “very very sick”. They gave him a 10% survival rate and predicted he might not make it across town that night. I was numb and I remained this way for a few days. I still have these numb moments at times.
I felt I was forever trying to ease everyone else’s emotional pain and help them deal with the fact that their great grandchild, grandchild, or nephew had a disability.
Cooper spent one month in hospital, the first few days having seizures then spending time coming off all the drugs and having so many tests conducted. He came home at 6 weeks old with a nasal gastric feeding tube.
On day three Cooper had an MRI scan and it showed damage to the basal ganglia. This is the area of the brain that controls all your motor development and co-ordination.
He was diagnosed under the Cerebral Palsy (CP) umbrella. His specific type of CP is called Athetoid CP. His CP affects all his limbs and mouth/speech so it is classified as Quadriplegia. It does not affect his cognition. His main issue is co-ordination and balance and mixed up messages his brain sends to all his muscles. When learning about CP you realise how many muscles actually control your movements and body! Sometimes his tone is stiff and sometimes floppy and he must learn to control all his movements. Nothing really comes naturally as such, it must be learned, controlled, mastered. There are three main types of CP: Spastic, Athetoid and Ataxic. They can affect many parts of your body and this all depends on when the brain injury occurred and to what extent.
Because muscles control your ability to suck and swallow, Cooper could not do this at birth. I continued to express as it was my only way of really doing something for my child which only I could do.
The prognosis was that he would be severely affected and was not given much hope. Naturally we thought differently and after he was weaned off all his medications, we saw the light in his eyes at three weeks old. I will never forget that phone-call to say he could come home. I made Andrew tell me about a million times! We were in tears all the way when we to get him. At last we could be a real family at home without people overseeing all our moves and parenting.
This would be our new type of normal.
Looking back, those early days were really tough. The first 2 years were tough! All we wanted was Cooper to be a “normal” kid. To experience everything other kids were doing and for people to see him as Cooper not as CP. We came to terms very quickly about him having a disability even though the first time I said it out loud I cried and cried.
It was often really difficult attending Mothers Group, swimming and gymbaroo as the environments always seemed so competitive which is really hard when your child is already behind and will always be physically different.
It was really difficult trying to deal with difference at the start. I felt I was forever trying to ease everyone else’s emotional pain and help them deal with the fact that their great grandchild, grandchild, or nephew had a disability.
I often felt at times, and still do, that I need to “sell” my child, to show to others who he is and to try and make them to see him though my eyes.
We have done our fair share of therapy over the years and are happy now to be in a place where therapy is just an everyday part of life. We are always open to new things and hope that Cooper will guide us for what he needs and wants in the future.
Now at four Cooper is a valuable member of our family and our community. Cooper attends mainstream Kindergarten three times a week and just loves it. He is seen as an individual, he is seen as Cooper. Cooper will attend mainstream school in 2011. Cooper uses a walker to help him walk and has just gotten his first wheelchair for longer distances. At home he knee-walks or crawls for mobility.
We are currently looking into electronic communication devices with a voice output to help Cooper better communicate with people. It did not take us long to realise that communication far outweighs the importance of walking or running. We have lots of different supportive equipment/devices for him and our car boot is full of equipment! We are slowly adapting our house to suit Cooper and have installed a ramp at the front and hope to extend and create an accessible bathroom in the future.
He has an amazing sense of humour and an extremely strong will. He is very stubborn, sensitive and affectionate. He loves dressing up, playing with cars, and has an amazing imagination when it comes to ideas for play. He is very bright and happy and adores his little sister Pepper. Having Pepper was a very healing experience as she has given us the normality that we longed for. Although it is often bittersweet as we watch her develop so effortlessly, seeming to learn something new every minute. I watch her with such joy but also have a part of my heart that watches her with sadness and I often shed many tears as she runs, climbs, babbles and jumps.
Of course there are still moments where I feel like I have been punched in the stomach. For example filling out forms to get extra support at Kinder where all the forms are noting all of your child’s deficits; it is really negative and hard as a parent to face. Then there are moments like when Cooper received two party invites and is part of “the group” which is great.
As time goes on, your skin thickens and the emotional moments are few and far between. It is moments like choosing kinders, schools or accessing life in the community that often throw your heart out. You learn to pick yourself up, to realise these feelings are normal and to give your kids huge cuddles to reassure yourself that everything will be okay. It then slowly starts to become more about your child rather than how it affects you as a parent
Since having Cooper I feel I have changed. I have definitely aged, a lot! I have learnt so much. I am more open, honest and real. I have met some amazing women and families on this rollercoaster and often feel quite blessed to be part of this unique group of families. I have made some very strong friendships here on Essential Baby in the CP support group.
As for what the future holds? We are planning a few overseas holidays as both the kids love to travel and I feel it is so important to expose them to different experiences and adventure. After all that is what life is about.
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You can find the Cerebral Palsy support group in Essential Baby's Disabilities & Special Needs forum.