When Tragedy Strikes Again and Again

Special Needs

The 1st of October, 2011, started off as every other day, but when our son Noah woke up that day we knew he wasn’t well.  It wasn’t something we were too stressed about, because for over ten years we had been dealing with different illnesses, as Noah was born with a condition called Hydranencephaly.  When he was born we thought he was a perfectly ‘normal’ baby.  He was perfect, but his brain was anything but normal.

At twelve weeks of age we took him into hospital for tests, and found out that he was born with most of his brain missing. He was missing most of his cortex (the two sides of the brain) and were told that sometime during the second trimester he suffered a stroke.  The damage to his brain was so severe, that his brain was replaced with fluid.

We took him home after being told that he was probably blind and deaf, he had epilepsy and the strange things that were happening to his body were seizures, we were told he would never respond to us, he would have severe cerebral palsy and would never walk or talk, and that the type of damage that he had to his brain was at the severest end of the scale.  If being told those things weren’t hard enough, we were also told that Noah’s life expectancy was only two to four years.  We were devastated that our beautiful, perfectly ‘normal’ baby was so sick, and couldn’t understand how it could happen to us.  It’s the kind of thing that you hear about, but it’s never something you ever imagine happening to yourself.

For the first twelve months after Noah’s diagnosis, all I could think about was that Noah was going to die young.  We had faith in God that for some reason Noah was sent to us the way he was, but it didn’t stop us grieving, feeling depressed and wishing things were different.    With medication to help with brain irritation, Noah became much happier.  He still had a lot of health issues, but it all became normal to us, as we learnt how to deal with his daily seizures (sometimes up to a hundred tonic clonic seizures a day), how to keep his body as loose as possible through daily physio therapy, and how to feed him through a tube which was attached through his stomach.

Life was definitely not what Aaron and I had planned when we got married.  It wasn’t fair, and we didn’t understand why Noah was born the way he was, but Aaron and I loved him just the way he was.  He wasn’t ‘normal’, but he was perfect to us.   Whenever you were with Noah you just felt so much love and peace.  He could not speak, but he could let us know how he was feeling and surprised the doctors by showing us that he wasn’t blind and deaf.  He was a very severely disabled boy, but we felt so blessed to have him in our family.   He taught us so much, and mostly about unconditional love.

Aaron and I decided that we could either feel sorry for ourselves, or we could give Noah the best life possible, no matter how long it would be.  We stopped thinking that he was going to die young, but just enjoyed every day we had with him.    When Noah was young I saw the saying that says: ‘Don’t count the days, make the days count’ and that became our family motto.   Noah passed those predicted ‘two to four years’ and we knew that every day he was with us was a blessing and a miracle.

We had two more boys after Noah was born, and our sons Jalen, Harri and Kobe loved Noah so much, and although they knew that Noah was disabled, he was just Noah to them.  They treated him just like they would anyone else, and didn’t know any different than coming along to appointments, doctors, and spending a lot of time at hospital, when he would often be admitted for weeks at a time.

We tried to keep life as ‘normal’ as possible for the boys and we would go away in the summer for family holidays, would take Noah and the boys swimming and to the park a lot, and just got used to life with a wheelchair, medications, tube feeding and a suction machine.   There were times though when Noah just wasn’t well enough to go out, or it was going to be too hard to use his wheelchair.  Aaron was always happy to volunteer to stay home with him, while I would take our other three boys out.    Aaron was a home body, but also just loved having one on one time with Noah.  They had a special bond, and Aaron would love to come home from work, and take over the care of Noah until it was time to carry him to bed.

Special Needs

On Saturday the 1st of October, 2011 we realised that Noah was too sick to care for at home any longer.  I took him to the hospital and as soon as the doctors saw him, they raced him through and all of a sudden there were many doctors and nurses around, working out the best thing to do to treat him.  I wasn’t at all worried, because I had seen Noah very sick before.  I knew what would happen – they would put a canula in, they would start antibiotics and give him oxygen and they would admit us to the children’s ward at the hospital.

A couple of hours later, things were much worse than I ever imagined.  Noah was being flown for the first time ever, to a hospital which was a couple of hours away, where he would be treated in the Neonatal and Paediatric Intensive Care Unit.  He had never been in ICU before, and when they told me that, I really became scared.   The doctors told us that they were very concerned about him and said that he would need a vent to help him breathe – for the first time in his life they would need to place a tube down his throat so that a machine could actually breathe for him.   They said he was really struggling and by putting him on the vent, it would allow his body the best chance of recovery as it could rest more.  They told Aaron and I that there was a chance that Noah may not be able to get off the vent, and after a little while it sunk in what that meant.  We wondered if this was the time we had been trying not to think about for the past ten years.  We wondered if this time would be the last admission to the hospital, and if we would have to say goodbye to Noah.

We spent a week in ICU with him, and there were a lot of ups and downs during the week, but we finally realised what the doctors had been telling us – that there was no way that Noah would be able to breathe without the vent.  His blood pressure was only staying up with high doses of medication, and he stopped responding to us.  He was tired and he was letting us know that it was time for him to go.   Our hearts were breaking, as we knew we would have to tell our boys and families and friends, that the next day Noah would be Noah’s last day on earth.

On Saturday 8th October, 2011, one week after Noah was flown to the ICU, we had to say goodbye.  We had the whole day to be with him and it was the longest, but shortest day of our lives.  I felt sick as I thought about what was going to happen later that night.  The doctors and nurses were amazing as they allowed us to have all the time we needed with Noah.  We talked to him, rubbed his face and hands, bathed him and washed his hair and dressed him in clean clothes as we prepared to say goodbye to him.

Around 7 pm the doctor came in and asked us if we were ready.  My heart raced and I felt like I was going to vomit, because I didn’t know how I could say goodbye to him. I wanted to keep him alive forever.  I didn’t care if a machine was breathing for him and he slept the whole time – I just wanted to have him here.  How could I say goodbye to our beautiful angel on earth!?  But we knew we needed to, and we felt peace because Noah had let us know that he was ready, and had given us the week to come to terms with it.     The doctor turned off Noah’s vent and he very peacefully passed away as we sat around his bedside.  It was a lot nicer than I imagined it would be, and we felt so much peace as we spent time with his body afterwards. I felt it was such a privilege to give birth to such a beautiful spirit, and then to be with him as he left this earth.

The months following Noah’s death were very hard.    Aaron took a month off work, and found it especially hard at night time as he used to spend it caring for Noah.  Both of us were always so busy caring for Noah 24/7 so we now had a huge hole in our hearts, and so much time on our hands.    Our boys were also grieving so much, and it was hard to try to help them through their own grief while grieving ourselves.

Just after Christmas we talked about how Noah would want us to be happy, and to spend time with the boys as we always had, but to also enjoy it because we could now do so much that we couldn’t do before.  It was very hard to not feel guilty because we could now go places without thinking twice – places we couldn’t go to before, either because it wouldn’t have worked with Noah’s wheelchair, or because Noah wasn’t well enough to go out.  We knew we couldn’t change how things were, and couldn’t bring Noah back, so we started to think about our future, and planned to do things that we could never do before – like taking a cruise or going on our once in a life time, dream holiday to the U.S.A.

Every January we would spend a week at the beach as a family, and decided that although it would be hard to go there without Noah, that we should still go.  We invited my extended family to join us, and we hoped it would be a fun week away.  We spent one night at the beach house on our own and that night Aaron said that he thought we made a mistake by going there without Noah.  He hoped that my family arriving the next day would help him to feel happier about being there.  The next day was the 26th January, 2012 – Australia Day – a public holiday in Australia.

My family arrived that day, and we had a lovely time at the beach together. It was summer, but it was not a warm day and we all shivered on the beach while Aaron and the men all had fun playing in the water.   I’m not one to love swimming in cold water, but they looked like they were having so much fun, that I decided to run in and join Aaron.  I put my legs around his waist and my arms around him, and he asked me what was wrong, as he was shocked that I got in the water.  I told him that I just wanted to join him, and he said “my heart is being healed having your family here”.

Losing your spouse

We had a lovely afternoon together as a family, and after dinner that night, the men decided that they wanted to make the most of the calm weather, and get an hour or two of fishing in the boat in, before it got dark.  A couple of hours later they arrived back and within ten minutes or so, Aaron collapsed in his chair and seemed like he was having a seizure, and stopped breathing.  After forty five minutes of CPR by family members and ambulance officers, Aaron was pronounced dead.   His heart was being healed, but at the same time it was broken and he suffered a massive heart attack, three and a half months after Noah passed away.

The months following are still a blur, as we were in so much shock.  So many people reached out to us and helped us in so many ways.   Without that help, things would’ve been so much harder.  It has now been almost three years since Noah passed away, and my boys and I are still grieving a lot.  It’s so hard to understand why Aaron had to go at all, let alone so soon after Noah passed away.

I’ve had to make so many hard decisions on my own over the last three years – I’ve sold our home and bought another one, had to go back to work after not working for fourteen years, and got a dog for my boys (and I’m definitely not a dog lover!).  But the hardest things are not the big decisions I have to make on my own, but just living every day without Aaron and Noah.    There are so many times during the day, when I think that I can’t wait to tell Aaron something, and then it hits me all over again that he’s not here.

It’s so hard to grieve for two people at the same time, and I don’t think it’s actually possible to.  Sometimes I feel like I’m just grieving for Aaron, and then other times it just hits me how much I’m missing Noah.  It’s terribly hard to help my boys through their own grief at the same time.  I feel like I have had to put my own grief on hold for a long time, to just get through and to cope.  It’s hard being a single Mum, as well as having to worry about whether or not I have employment, and to get a balance so that I feel like I’m giving my boys the time they need, while looking after myself as well. But I also feel like I’m not doing it alone.  I often feel Aaron around at different times and believe he is influencing things in our lives, as so many things have happened in the last three years that are more than just good luck.

Our lives have changed forever, and I wish every day that things were different, but we are trying to live our lives to make them proud of us.   I’m so proud of my boys for what they have gone through and how they have dealt with it.  It’s still very hard, but we also feel very blessed.

Real Imprints

We try to have things to look forward to, and have done a lot of things over the past three years that have brought us joy, but I feel like we will never experience true joy again, until we are together as a family again.   We still have the family motto to ‘don’t count the days, but the make the days count’, although now I feel like we are counting the days until we are together again, as every day we are one day closer.   I’m grateful that I know we will one day be with them again, and that is what keeps us going every day.

Follow Lisa’s faithful journey at: www.lisajking.blogspot.com.au  

 Story written by: Lisa King

This story was seen first on Real Imprints.