Some would ask why I stand
by Lisa King
When I was young I had my whole life planned out….I wanted to be a teacher, I dreamed of traveling to the USA (which was pretty much the furthest place you could go from my home in Tasmania, Australia), I would get married and have a family – two boys and two girls sounded perfect.
I was lucky enough to be able to travel and study in the USA for 13 months, and then I came back home to Tasmania, and continued studying to be a teacher. It was during this time when I met Aaron as he had started to come to church with a friend.
Nine months after we met we were engaged, and nine months after we were engaged, we were married. For our first four years of marriage I was finishing my degree and then started teaching, while Aaron worked full time.
I loved my job as a teacher but Aaron would wake up every day and just dread going to work. He had worked full time since he was very young and didn’t go on to study any further past year 11. I couldn’t understand how someone could just keep getting up day after day, to do something that they didn’t like. I started to talk to him to go back to school as a mature age student and after lots of encouragement, he finally decided to apply and was happily surprised to be accepted to our local university.
While he was studying I became pregnant with our first child, so it was a very busy but also exciting time. When our first son Jalen was born I gave up my full time teaching job and stayed at home full time. Almost two years later we had our second son Noah. He was a beautiful baby but from three days old he screamed non-stop – day and night. It wasn’t a regular newborn cry, but a very high pitched distressed cry.
After weeks of going back and forth to the doctor, we were finally able to see a paediatrician. He didn’t tell me at all what I was expecting to hear – he thought that Noah was having seizures and wanted me to bring him into hospital for some tests. Just over twenty four hours later we couldn’t believe what we were hearing – Noah had a condition called hydranencephaly. Most of his cortex (brain) was missing and replaced with fluid from a possible stroke in utero during the second trimester of my pregnancy.
We were told that the damage to his brain was so severe that he would not respond to us, he was having seizures, he would be blind and deaf, he would rely on us for everything his whole life, and if that wasn’t enough to hear, we were also told that his life would be very short. He would possibly only live for two to four years.
Aaron and I were devastated and our life as we knew it came crashing down before us. I remember thinking that this was something that always happened to someone else – I couldn’t believe that just the day before we thought we had this perfect (but unhappy) baby, and now we were taking our disabled son home, and we had no idea how long we would have him for. One thing I do remember is looking at Aaron and saying ‘we can do it together’ as I was just so glad that we had each other. I knew that our life was now going to be very hard and not at all what we had planned, but I also knew that our relationship was strong and together we could get through anything.
Having a child with a severe disability is exhausting emotionally, physically, spiritually and financially. There were many days when we were just so drained, and it could’ve been easy to just say how unfair it all was. But we also knew how blessed we were to have Noah with us, and for us to have the responsibility of being his parents. His body wasn’t perfect, but his spirit was. As a couple we decided that no matter how long Noah was with us for, we just wanted to give him the best life that we could. It could’ve been easy to let it all overwhelm us, but we grew to appreciate the little things. Instead of celebrating milestones such as crawling, walking and talking we were so grateful for the little smiles that he started to give us. We really appreciated the little things. Our days were full of appointments to therapists, doctors, chiropractors and naturopaths – all helping us to give him the best life possible. Noah used a wheelchair, was fed by a permanent tube in his stomach, needed numerous medications and therapy every day, and had seizures every day of his life.
We were so happy to learn that his hearing was perfect and even though he was cortically visually impaired (his eyes were okay, but his sight was hindered by the messages going to his brain) he would have times when his sight seemed very good. As he grew he began to giggle and laugh and we knew what a miracle he was to be living and also responding, because of the damage that he had to his brain.
Aaron finished school a couple of years after Noah was born, and started teaching in a High School close to home. He loved his job and it was so good to see him wake up and look forward to going to work. We had always wanted to have more children, and had two more boys – Harrison and Kobe. I always wanted to have two boys and two girls, but absolutely loved having four boys.
Noah continued to surprise the doctors and even though he had many admissions to hospital during his life, we celebrated his tenth birthday in June, 2011. As Noah got older the smiles and giggles came less and less. It was obvious that his body was becoming more and more tired as he had to deal with many illnesses throughout his life.
In October 2011 we took him to hospital just like we had many times before, as we could tell he had another chest infection. However this time was different to every other time. I had never seen the doctors move so fast as they worked out what to do to help Noah. For the first time in his life the doctors decided that he needed a tube placed to help him breath and then they talked to us about flying him to a hospital which was hours away, so that he could get the best treatment possible in a paediatric intensive care unit.
After a week in the PICU and lots of ups and downs, it became very obvious that Noah’s body was shutting down. He could no longer breathe on his own and needed a lot of medical intervention to just keep him alive. It was the time we had dreaded his whole life. It was time to say goodbye to him and let his beautiful spirit leave his tired body.
The next day was the hardest, longest but also shortest day of our lives. Our family and close friends came to say goodbye to Noah and we sat around him, held onto his hands and stroked his beautiful face as we spent our last moments with him. Our hearts were broken, but we also felt so much peace as we knew that it was his time to go, and that we had done all we could to give him the best life possible while he was with us.
The next few months were so hard to adjust to. Aaron took a month off work as we spent time together going through his medical supplies, returning equipment that he no longer needed, and just grieving together. When Noah was alive we were constantly watching the clock to know when Noah’s next feed or meds were due. Without Noah we now had so much more time and we didn’t know what to do with it. All we wanted to be doing was caring for Noah again. We missed getting up in the night to change his position in bed. We missed suctioning him day and night, we missed putting on his body splints to keep his muscles from getting tighter. We missed doing physio therapy, and having to lift him in and out of his wheelchair. We would’ve given anything to have all of that back. Our family just wasn’t complete without him.
Aaron was taking Noah’s death especially hard. A few months later we decided to take our annual family holiday, and invited my extended family to join us for the first time. We were worried about going for the first time without Noah and hoped that having them there with us would make it easier. Our first day there was spent at our favourite beach. We laughed and jumped in the waves together and Aaron made a comment to me that he felt like his heart was being healed by being there with my family. We both talked about how even though life without Noah was so hard, we knew that it could be good again, and we knew that Noah would want us to be happy.
That night after Aaron went on a short fishing trip, he had a massive heart attack right in front of us. He wasn’t able to be revived and was pronounced dead, just three and a half months after Noah passed away. I remember pacing the floor and looking towards Heaven asking ‘why is this happening!?’. I still don’t know and I don’t think that getting the answer will make things any easier. Instead I decided to not look for answers, but to just try to deal with it the best that I could.
The last four and a half years have been very hard, especially as I have had to help my three boys through their own grief, while going through so much grief and trauma myself. When Aaron died, I knew that I could question why, and I could get angry and say life wasn’t fair and sometimes I do. But I knew that if I let myself be consumed by all those negative thoughts there was no way I would cope with what had happened. It was hard enough just living without them and suddenly being a widow and a single Mum.
There have been many, many tears over the last four years. I know I’ll be with them again, but it doesn’t necessarily make things any easier. I do believe that families are forever, but a third of my family is not with me right now, and that’s so hard. What I have learnt through all of this is that grieving is okay and there is no timeline for it. It’s hard to watch someone grieving. It’s hard for people to know what to do or say. It’s easier to just sometimes avoid it.
But people shouldn’t be expected to ‘move on’ or to get over it or to be okay because of the faith that we may have. When my boys are having a hard day, I have learnt that it’s okay to just allow them to have a hard day. Sometimes the only thing that helps is to feel whatever we are feeling at the time. Grief cannot be rushed and I’m so grateful for beautiful friends who know this, and allow me the time and space to just grieve or talk about what we are going through, or to talk about Aaron and Noah.
When Aaron and Noah died I knew that I had to live my life to make them proud, and have tried to teach my boys that as well – we now had to live for them. The first two years were very hard, but I did all I could to make new happy memories with my boys, and to try to see the positives in our lives as that’s the only way I could cope. We went on our first big holiday together, we would fill our weekends with activities that we couldn’t always do when Noah was alive. If we were having a really hard day, we would often just jump in the car and go and do something fun to try to cheer ourselves up. It didn’t mean that we stopped feeling grieving, but it helped us to get through another day without them, and the weekends we used to dread because they were long and sad, we now look forward to.
On especially hard days such as birthdays, anniversaries, and other celebrations we would go somewhere that we hadn’t before, or would go somewhere special for dinner. We would release balloons on their birthdays and spend the day with beautiful friends who would drink Aaron’s favourite drink with us around his grave, as we shared silly stories about him.
It’s now four and a half years since Aaron and Noah passed away and it’s still hard without them, but we now have a lot more happy days than sad days.
It’s such a long and lonely road no matter how many people are supporting you, but all of these people have helped us to stand again. I believe that for someone to stand again, they need time, patience, love and someone to lean on until they are steady on their feet again. When you are going through something so hard in your life it is also easy to fall again at different times. It takes a long time before you really feel steady on your feet and can stand without needing as much support.
I am grateful for amazing family, friends and even strangers who have helped us over the last four and a half years, and who have helped me and my boys to stand again.
Read more about Lisa's journey:
Related stories: Silence Breaks
Read more about Lisa's journey:
Related stories: Silence Breaks