I once read that miracles are timid, some don’t often believe in them and would rather think that it all comes down to luck. I cannot be too sure as I am living a miracle.
Cerebral Palsy (CP) is a life-long physical disability due to damage of the developing brain. In Australia alone, a child is born with the condition every 15 hours. That is one child in every 500 Australians are born with CP. More information can be found at https://www.cerebralpalsy.org.au/ .
In October 2010, my wife and I were excited as our plans were falling into place. Business was doing well, we were pregnant with our second child and we were making plans to move into a larger house. Our 2 year old son was also ready for his little brother to arrive.
The birth of Parker was quick in fact I recall being shocked at how quickly it was happening. It was a very normal birth with a lot of noise, mess, intensity, helplessness and all those intense feelings that we all go through. The only difference was the silence immediately following the birth. I did not notice until my wife started panicking:
“Why is he not crying? WHY IS HE NOT CRYING?”
The Obstetrician did the usual tests and stated that he is well, breathing and all is fine. There was no need to worry and our tensions eased as we first held little Parker Harry.
After three days, Parker had not cried and was struggling to feed. However, we all felt that it was just a matter of time and left the hospital as a family. A day or two had passed and we were concerned that things had not picked up. We returned to the hospital and soon as we arrived the Paediatrician did a quick test of his core strength and asked us to leave the room whilst he undertook some further testing.
My wife and I thought nothing of this. When we returned we entered the room and were shocked that our little boy was enclosed in an incubator with tubes coming from his little hands and nose and we were unable to touch him. This was to become his bed for the next two-three weeks.
With all the stress my wife also became sick and was admitted to hospital again. That was not too bad as they ended up in the same ward to have a connection with each other.
Little Parker was having every blood test in history. It was crazy and I recall the Paediatrician saying that he had taken over 60% of his blood.
“Was he joking?”
Like an addict the needles were changed from his little hand, to arm, to foot, to leg and so on. The only saving grace to this hurt were the results that passed each and every time. I can even recall the Paediatrician saying he was clear of HIV. That shocked me as I would never have thought it was even a consideration.
The first sign of improvement was on his eleventh night when we first heard Parker’s cry. I can recall that cry being the most perfect sound in the world. To think of all the new parents in the world praying for their baby to stop crying and we sat happily singing:
“Cry little baby, Cry.”
Parker’s final test was an ultrasound of his brain. I made myself believe that it was just routine. Dotting the dots crossing the tees. Then my phone rang, my wife asking me to return to the hospital as the Paediatrician wanted to talk to us. I was so nervous, I could feel my hands shake and my body trembling.
On arrival to hospital I notice the Paediatrician was speaking to my wife. I joined them and was informed that the ultrasound showed two cysts on Parker’s brain called leukomalacia. I sat quiet, not saying a word wondering what that meant.
“Is that cancer?”
No, rather it is a sign of Periventricular Leukomalacia (PVL) that is commonly caused by a decrease in the blood flow to the brain . The cysts are a representation of dead brain cells that cannot be repaired. There is no pill or surgery that will cure this and the effect on children can vary from nothing to extreme major challengers.
We were informed that being so young the effect on Parker will not be known until his development matures. In fact we still do not know the full effects some 3 years later.
I remember my heart dropping. I looked at my wife and although we did not say it our eyes told the story. Our journey all of a sudden was so unclear, the water so muddy and we had so many questions but could not ask a single one.
I had a 2yo to look after, so I left Parker with his Mum put on a brave smile and went on with the fatherly chores required to meet the demands of any 2yo. I called my father and tried telling him but stopped short as my words were hurting.
I put Hudsyn to bed and sat down with no lights, no sound, just me in the darkness staring into space. I am sure we have all had our falls in life but this night I fell to my lowest and it was to my darkest night. A night never to be discussed, never to be revisited because it died when the sun rose. With the new day, a new start began and I had the belief that Parker was going to achieve amazing things. He had already shown his determination through a single cry.
Soon after, Parker and his mum were released from hospital and we were a family again…….TBC
This is a journey that more people go through than you would care to think. The images are from I-phones and point and shoots as photography was not on my mind back in October of 2010. However, no matter how hard it was to write this story, I believe it has to be told as to many parents remain silent and stand alone.
Update: A Father’s Journal: Part Two – No Ceiling is now live.