Living Grief

The phone rang, it was the call we had been waiting for.

It had been years of challenging struggles with so many doctors to get this MRI done. To see what’s going in inside Noah’s brain. Everyone kept saying they wouldn’t find anything. My gut told me otherwise.

I picked up the phone. The doctor introduced himself and then said,

"Are you sitting down?”

It was almost comical…something you hear them say in the movies. But this was our life..and for a moment my heart stopped beating.

I sat down.

“It’s not good news I’m afraid” He started to list the damage and I heard parts…"brain stem, irreversible"…he said “he could have 7 months or 7 years..we just don’t know.”

Noah was 2 years old.

I discovered so many things after that call. That he shouldn’t have called me, that I should have been given the news at the hospital so many things. But there it was. Devastating news delivered to me right in the middle of a normal day at home.

I walked back into the lounge room to be greeted by my little man.
Everything had changed and yet nothing had altered. He wanted to play and I wanted to sob.

I did sob…for two weeks I sobbed, played, made bottles, sang songs, sobbed some more and snuggled him whilst he slept.

I felt like my heart was broken. Like we were now living on death row. No way of knowing how or when it would happen…but that the big d was coming.

I couldn’t name that feeling. He was right there in front of me…the same little person but every single thing had changed. It was grief…but he was still very much living.

Living grief is what I came up with. How I would start to express how I felt. I went through the first four stages of grief denial, anger, bargaining and deep sadness.

The fifth stage, acceptance came as a choice I made and it changed our whole world for the better. I remember so clearly about two weeks after the phone call. It’s vivid, so much so that I can hear myself saying this in my head to this day.

I thought…right well…I can’t carry on feeling this way and give him the life he deserves..so I better accept it.

Now I am not saying this is what should happen, or that this is what happens for everyone…but this is what happened for me.

I made a decision and that was honour the life he has, whatever timeline that is by living it with joy, acceptance and all the tears, hugs we need to get us through.

And so…that’s how we live. Noah has a living life list not a bucket list. The difference being, we are not waiting for the end, we are instead celebrating and living life now. We seize every opportunity to make memories, we make time, we don’t sweat the small stuff. We cancel appointments to sit in the sunshine instead, we bring smiles to people ( a Noah initiative ) we sing at the to our lungs in the car with the windows down in traffic to see if we can make other people laugh and we make up stories.

My grief is absolutely not even close to touching the grief of a parent who’s child has already grown their wings. Not even close. Not a whisper of that knowing.

It’s a living grief. It comes at times you wouldn’t expect and you can be having the most amazing day…and BOOM. It hits you. Sometimes it floors you and sometimes you can swallow back the tears and be grateful to have this moment with them instead.

It’s a grief that hits you when someone asks your little one “What do you want to be when you grow up?”
It’s a grief that comes unexpectedly when people talk about high schools and you have no clue if you will get there.
It’s a grief of not making long term plans.
It’s a grief of the 100 days at kinder when they make them look older in their photos for fun.

We choose to live in what is. What today is. We choose to live in laughter, in joy, in the sadness when it comes, in the silliness and the absolute love that knows no bounds.

We live in the moment and we truly know each day is a gift. Only this morning when I dropped Noah at school and his teacher and I were discussing what’s on this week with all the hospital things and Noah said:
“Let’s just do today shall we, start there”

How utterly perfect is that.

Living in space

If you have a child with a diagnosis, disability or difference then you will have seen the poem “Holland” 
you know the one
The start goes like this…

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans.You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. But you land in holland…. "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.

It is a wonderful way to express what we go through but I felt it didn’t quite hit the mark and so I decided to rewrite it to reflect the journey for those of us with complex and palliative care kids…

So here it is..

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go.

Except you aren’t even on a plane…as it tilts backwards ..you slowly realise you are on a rocket.

"But wait this isn’t a plane, this isn’t a trip I planned!" you exclaim ..but it’s too late.

The countdown starts are you are blasted into space.

It’s not like space is a terrible place, you have even dreamed what it’s like to be amongst the stars…but you didn’t want a go!

As you start to float, you realise it’s not like any other place on earth anymore. People are different up here. 

Aliens come to visit and they speak a new language, a language of PEG, CPAP, SATs and lines. They are friendly aliens, but it can still be scary to see so many all the time, especially if you don’t always understand what they are saying.

You are not allow to panic though, everyone tells you it’s very very sad you have blasted into space…but not to worry…

You worry. 
It’s hard for people to visit space. 
You start to talk the new language too and people start to not understand you anymore either. The aliens become your new friends.

You see stories of people back on earth, in Italy having a wonderful time. And you say, yes I was supposed to go there too, even holland would have been ok. 
But space is very hard. 

There are wonderful things about space. The view out the window is breathtaking and you gain a perspective no one has ever seen. Sometimes you will be the only one in the world to have ever had that particular perspective. 
But soon you realise there are other people that have been blasted into space too! 
They speak the funny language and wear that space suit to project them from feeling all the things they would be feeling up there. 
They all use technology to speak to each other or they meet in the space station. It’s not like going for a normal coffee…but it’s all they have. They gather and chat in their new language and the people on earth are often shocked by their dark sense of humour. 
The pain of not being on earth is always there, but you start to love space too. 
It has some cool stuff and the people you meet are incredible.

But we know we are not allowed to live in space forever. 
It’s a very special place but eventually we will have to go back to earth. 
We never know how long we have.
We never know when it will be time to go.

But the most comforting thing about space is that when a little astronaut goes out for a spacewalk..and doesn’t come back…they don’t have far to go to join the stars.