The Shannon Family

 

On 9 December 2015, our life was turned upside down – and nothing has been the same since.  On that day, the love of my life and the father of our three beautiful boys, was given a life sentence, at only 46 years old.

When my husband Dave was diagnosed with Bulbar Palsy, a rare and progressive form of motor neurone disease (MND), I vividly remember thinking it was a very strange name.  We knew nothing about MND, but I soon came to understand what a state of bliss it had been to not have to know.

MND is one of the most cruel diseases imaginable.  It robs you of your ability to walk, to use your hands, to wipe your own bum, to scratch your nose, to swallow and to hug your loved ones.  Yet it leaves intact all your intellect and your special senses – sight, hearing, and smell – so you’re still able to watch your own body waste away.

The neurologist said that because Bulbar Palsy was one of the most progressive forms of MND and there was no cure, Dave might have only three months to live.

I kept thinking, what could I do to stop this cruel disease and how could I tell our three young boys (Ryan at the time was just six years old, Jason eight and Brendan nine) that their daddy is dying?

We never gave up trying to find a way to beat MND. I searched the Internet and found a medication that apparently can slow down the progression of the disease. I didn’t care how much it cost.

I was determined for the diagnosis to be incorrect, perhaps a terrible mistake of some kind?  I thought maybe what Dave really had was Lyme disease, which has similar symptoms and is caused by a tick bite. So we sent his blood to the USA to get it tested.  Lyme disease is treatable if detected early, but sadly it wasn’t that.

Every time there was another setback for Dave, our hearts were broken again.

How could this happen to someone who is so kind, caring and good, so young and healthy?  Dave didn’t drink, didn’t smoke or gamble.  If only I could exchange my health with Dave’s…  I would have given anything we had in this world to change the outcome.

The progression of Bulbar Palsy was quite fast.  Dave had slurred speech, and difficulty chewing and swallowing not long after he had been diagnosed.  The boys used to run and hide under their beds whenever Dave choking.  It was so hard to watch.

As the disease continued to rapidly progress, I watched my determined Dave struggle to the point of exhaustion every single day attempting to do normal everyday things that we all take for granted – like ingesting solids and liquids, going to the bathroom, showering, dressing, communicating and walking – even just holding up his head to see.

MND is a tormenting disease, with non-stop twitching in your arms, chest and legs and also rapid weight loss.  It was a truly devastating and undignified way for anyone to live and it was incredibly painful to watch the love of my life suffer this way.

But Dave was amazing, instead of wishing away the pain and illness, he learned to accept them.  And Dave’s spirit and amazing sense of humour stayed with him right until the very end.

Dave soon needed 24/7 home care, as his body became totally paralysed, eventually the only thing he could move was his eyes.  While I was Dave’s main carer, I was not alone, our three young boys and Dave’s parents were an amazing support.

Although we continued to ask God to heal him, sadly Dave passed away on 18 December 2017, just a week before Christmas.

Afterwards, while battling grief, our family continued to have terrible luck.  In April 2018, a garbage truck backed down and hit our car while I was taking the boys to school.  As a result our car was written off.   Then in August 2019, we came home to find our house on fire – we lost everything that we were not wearing on that day.

When I saw Feel the Magic on TV, I thought it sounded great and would be wonderful for our boys to help relieve some of their trauma.  I registered, but was disappointed to find that Camp was fully booked until 2020.  Then I was then thrilled to receive an email saying the boys could go to Camp in December 2019.

The boys’ first reaction was ‘no way’.  I showed them the video – they said if they had to go, they wouldn’t wear the t-shirts and they certainly wouldn’t talk to anyone.  They told me they would hate me if I made them go.

Sending them was one of the hardest decisions I’ve had to make.  I called and spoke with Nicole many times in the lead up about how much the boys had hated talking to counsellors and psychologists after Dave’s death.

I was worried too, because I didn’t know anyone who had been to Camp Magic.  Was it really okay to give my boys to strangers for three days?  Especially whey they had told me they really did not want to go?

Then a week before Camp, I received a call from all their mentors.  Brendan had Luke, Jason had Ryan and Ryan had Kevin.  They assured me that the boys would have a good time and they wouldn’t push them to talk if they don’t want to.

I told the boys when I dropped them off that if they really didn’t like it, I would come and pick them up.  I went home worried and couldn’t sleep all night.

But to my relief, the boys all came home with big smiles on their faces.  Camp Magic was a God given gift for my family – to help them heal from grief.  They still have the yarn wrapped around their ankles to remind them that they aren’t alone, and they now like to sleep in their Camp t-shirts!

For the very first time, they were able to share and to trust other people about their grief journey, to feel safe and to not be judged.  They poured out their deepest feelings and felt understood.  They laughed and cried and were finally able to feel normal again.

We still keep in touch with the boys’ mentors (Kevin, Luke and Ryan).  My boys love these amazing heaven-sent angels and can’t wait to go to Camp again!