Guest Post By Lisa King (www.lisajking.blogspot.com)
Over sixteen years ago my husband Aaron and I were told that our second eldest son Noah had hydranencephaly. We were told he had severe brain damage, he would never respond to us, he would rely on us for everything, he was blind and deaf, he was having seizures and that his life would be very short.
We sat in shock as we took it all in, but we were also grateful to have some answers as to why he was so miserable and not doing things we had known he should’ve been doing. He was nine weeks old and he wasn’t smiling or looking at things and was very, very unhappy all the time. If Noah was awake he was screaming. He was stiff all the time and was very hard to settle and hardly slept.
Visits back and forth to our doctor had confirmed that he had reflux, but a paediatrician was the one who knew there was something more and asked us to be admitted to hospital for some tests. We went into hospital wanting answers, but we never ever wanted the answer that we were given. Hearing what the doctor told us about Noah’s diagnosis felt like we were in a movie. It was something that happened to other people – we never could’ve imagined that this kind of thing could’ve happened to us.
We took Noah home from the hospital with medications for his seizures and were told that he would live for around two to four years. We were in shock for months and couldn’t believe that this was now our life. All we could think about was that we had two beautiful boys, but one of them was going to die.
Every morning I would wake up and for a few seconds I would forget everything, but then it would hit me all over again – Noah was disabled and he was going to die. I think I grieved for the first twelve months. Noah was still with us, but I felt like the son that we had imagined was already gone. But after getting through the first twelve months and having Noah being quite healthy and settled despite his disabilities, I finally felt like I could begin to enjoy our life with him.
We knew that he wouldn’t be with us for long, but we decided that no matter how long he lived for we would give him the best life possible. It could’ve been easy to focus on all the terrible things about having a child with such an awful diagnosis but I knew that it wouldn’t help us or Noah. Instead, we began to appreciate the little things – even if it was just a little smile or a healthy day. It was things we took for granted when our first son was a baby.
With Noah’s seizures being treated with meds he stopped screaming constantly and for a little while he was just like every other baby. He would make baby sounds, would kick his legs and arms and would even smile at the sound of our voice sometimes. Sometimes he would follow us with his eyes, and he would jump at the sound of noises, so we knew that he wasn’t blind or deaf and tests also confirmed that. We started to think (and hope!) that the doctors had got it wrong and that Noah wouldn’t be as disabled as we had been told. But as he got older it became more obvious that he wasn’t doing things that other babies his age were doing.
Noah was not the son that we expected, but we loved him so much and felt privileged to be his parents. A year turned into two and it was then four years with Noah, and we were so happy that he was still with us despite the doctor’s predictions. We stopped thinking that he would pass away and just enjoyed every day with him. He began going to school – first at a mainstream school and then part time at a mainstream and special school. We became experts on medications, seizures, feeding tubes, suctioning, physio therapy, hydrotherapy, hospital admissions, lifting with a hoist, wheelchairs, special needs equipment and had many appointments every week to keep Noah as happy and healthy as possible.
As his Mum, I felt it was my job to investigate anything and everything to help Noah have the best life possible. This meant we went to his paediatrician and therapists regularly as well as seeing a naturopath and chiropractors just as often. I was always asking his paediatrician to try something else and I talked to other parents online whose children had the same diagnosis. I really think that being proactive about his health helped him to have a longer life than the doctors had predicted.
Life was not easy but it was still great. We then had two more children – both boys and we loved our family of four boys. Noah had many years of ‘good’ health (although he had seizures every day of his life) but as he got older his body became more and more tired. He had many chest infections and admissions to hospital and that increased as he got older. He began sleeping a lot more during the day and some days he would only be awake for a short time. I knew that his body was tired and was worried that our time with Noah was getting shorter, but we never really imagined that one day he would pass way, despite knowing it from when he was nine weeks old.
We celebrated Noah’s 10th birthday in June 2011 and in October of that same year he was admitted to hospital for another chest infection. But this time it was different. For the first time, he was flown to a hospital far away from home and was intubated to allow his body to rest. We were told by the doctors to be prepared that Noah may not make it, but we thought that he would surprise the doctors like he always did and would come back home with us after a week or two in the hospital.
But after a week in hospital Noah’s body continued to shut down and he was not able to breathe on his own. He passed away a week after he was admitted to hospital and we were heartbroken as we sat around him as a family and said goodbye. It was hard to believe that the time we had always imagined was here and as hard as it was, we also felt very lucky that we had a week to prepare for it. The doctors and nurses were so lovely and kind, and cried with us as we said goodbye.
We never would have wished to have a child with a disability, but in the end, we wouldn’t have changed anything. We learnt so much from him even though he never said a word. He gave back more to us than we gave him and he changed our family for the better. As a family, we decided to take on the saying ‘don’t count the days, make the days count’. We were able to look back with no regrets and knew that we did all that we could, to give Noah the best life possible. We miss him every single day and he will forever be a part of our family.
(Thanks so much to Lisa for sharing her story about Noah, her son who had Hydranencephaly like Natan Shai. Read more about Lisa and her amazing family here. You won’t believe what else this family had to go through and how strong they are. A true inspiration for all! – Hannah)