Lachy started seeing his first therapists when he was almost 6 months old. He started seeing an occupational therapist and a physiotherapist. Obviously, at 6 months we weren’t sure at all what he would be able to achieve physically, mentally or wholly. During the therapy sessions it was described to me as unlocking the locks of the messages from his brain to his joints and muscles and then to determine his capabilities. I remember at the time thinking that it was ironic that that is what the therapy’s goal was and his name was Lachy!
As time went on we found that every therapist we saw was trying to achieve the same thing. The neurologist (& paediatric neurological radiologist) was trying to unlock the locks of the brain. The metabolic physician / clinical geneticist testing to unlock the genes / dna. The paediatrician continually unlocking the jigsaw piece by piece. As were the opthamologists, ear nose & throat surgeons, hearing experts, speech pathologists, nutritionist and the locks to unlock go on and on. This is not unique to Lachy. This is what each therapist and specialist attempts with each patient particularly the ones (and there are soooo many) that the answers are never easy or obvious. This simply seemed the right name and the right place to start to bring attention and awareness to the mystery pool of life that we became a part of its community.
It’s hard if not impossible to know how and where to begin this story. I am Lachys mum. My name is Cayley. Lucky Lachy was born on 15.03.2010. Lachy lived with me, his dad Gavin and two older brothers Hayden and Tyson. We had a happy home and by all intents and purposes are “normal” or maybe a better term is average. I’m not sure what “normal” is. That’s why I always put it in inverted commas. I’m going to start with the simple facts. Here they are.
Lachy was born with a condition called laryngomalcia. This condition had a massive impact on his breathing. He had chest recession and a throat tug that brought concern to most medical professions that assessed him but he always managed to get his breath. His breathing was mostly noisy. He had his first operation at 3 months old to try to help open his airway but without great success. He had global low muscle toning and global developmental delay.
He could briefly hold his head up and couldn’t sit, roll or crawl needless to say – walk. His 2nd MRI has confirmed that he had a shrinking cerebellum (cerebellar atrophy). He had a written diagnosis of severe quadriplegia cerebral palsy.
He also had a PEG in his stomach which is how he was given his formula. He was allowed to have a few mouthfuls of solids orally twice a day the consistency of which to be no thinner than custard because his 2 barium swallow tests showed that he was at risk of aspiration. He had numerous teeth that have broken through the skin in his gums. You couldn’t say they’d come down or up because they had simply broken through. A simple cold or runny nose to one of us was an extreme episode to Lachy. He had to work so much harder to breathe which made him upset and tired. He couldn’t sleep because he couldn’t really breathe. And he vomited every feed when he was like that which had a 2 fold detrimental effect. 1 he lost weight he didn’t have to lose and 2 he got dehydrated which added to his poor health and horrible feeling. I doubt there is anything more upsetting for a parent than to see one of their innocent children suffering while they watch helplessly.
They were his health facts. Other facts included that his eyes were absolutely the windows to his soul. He was very bright and very much aware of everything going on around him. He was simply trapped in his body. He communicated with his expressions and we simply learnt how to understand him. He had the most beautiful blue eyes and long eye lashes and when he engaged you I defy you not being able to instantly fall in love with the spell he put over you. When he was healthy he was such a happy boy. With giggles, laughter and mischief just as you’d expect from a 3 year old. He is still 1 of our 3 miracles given to us from god and we are so grateful.
In August 2013, Lachy contracted a contagious respiratory infection. A quite common infection but to very young and special needs children, it can be very serious. He spent a couple weeks of intense respiratory treatment in hospital and all signs indicated that he had again fought the fight and recovered. There’s a part of me that felt he never really got back to his complete healthy self after this. We had another stay in hospital at the very beginning of November and again our warrior came through with a smile on his face. Words are impossible to express the sorrow we have in our hearts and lives, that Lachy passed away on 16 November, 2013.
Yesterday, today and tomorrow, Gavin and I are the parents of 3 boys.