My little boy is a superhero by Sharn Monkley

My son Carnley Taj Monkley was born on 6th Sept 2013 and that day he suffered a stroke. 

During my pregnancy, I had a lot of health problems including high blood pressure. I was in and out of hospital in the lead up to Carnley’s birth. Then unfortunately I was sent home twice after my waters broke. I was finally induced two days later. I had a dry birth and Carnley and I were both stressed. My husband was asked to leave the birthing room and I was taken to theatre. We nearly didn’t make it. 

After his birth, Carnley was laid on my chest. His little arm went limp and his eyes rolled back in his head. He was black and blue and I was told he was hardly breathing. It was devastating. He was taken to intensive care, where he stayed for seven days. 

The early days at home were inundated with appointments while my husband and I were still traumatised and coming to terms with what had happened. Carnley took everything in his stride. He was a happy baby and is a very happy little boy. 

Bringing up a child with special needs is both rewarding and challenging. We want to give Carnley every chance to reach his full potential and thrive. However, we feel isolated and have lost many friends simply due to the amount of time we need to give to therapy, which is physically and financially demanding. We juggle Carnley’s constraint therapy (his right hand and leg), occupational therapy, speech and psychotherapy. He does ‘kindy gym’ to build up his strength, little athletes and swimming lessons.

Life is different for us and it takes a toll emotionally. At times I feel guilty and angry with the hospital. I feel like more could have been done. We have little family support, other than my sister and her husband who are like Carnley’s ‘other’ parents. 

Carnley is a super hero through all of this. Every day he wakes us up with a smile and tenacity that is far beyond his years. I remember the look in his eyes when he was learning to sit and crawl. His courage made me so proud and gave me the determination I needed. Carnley has sleeping issues that challenge us all, difficulties with his speech, pain in his legs and Cerebral Palsy. He does music therapy and sings to help with his speech. He sings words when he’s learning them, which we love. We appreciate his cheeky and free spirit.

We have recently found that being near the ocean has an amazing effect on Carnley - both emotionally and physically. Going in the sea makes him happy and supports him physically. We would love to be able to do more of that.

I have realised that without a good attitude, our love for each other and support from those closest to us things would be very different. We worry about the future and how best to support Carnley as he grows up, but we have each other. My husband has been my rock through thick and thin. We’ve also faced health issues on top of Carnley’s, I thank my lucky stars every day I have his hand to hold and his shoulder to cry on.

We are so proud of our little free spirit. Our son is our super hero and he inspires us every day. 

Sharn Monkley