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.

Inclusion makes you grin.

Being included makes you grin. 
Noah was invited to his 2nd pool party this year and you can see how delighted he is.

Noah couldn’t do any of the activities the other kids were doing. None of them. We knew that before we went. And it didn’t matter at all, in anyway. In his words “he had the best day ever” just floating around near his mates, getting to hang in the wave pool with them and splash them all of course!

It would have been so easy to decide that it would be “unfair” to invite Noah.. or that it would be “too hard” for him.

We are so so grateful to the people who see Noah as the great mate he is, another classmate they want to have along, just another person in the gang. 
Because that’s what he is. Just like all the other kids.

He doesn’t have special needs, he has the same needs as everyone else. To be seen, heard, included and loved. 
He’s got additional needs to help him join in.. but we will always find a way to do that.

The photos show him having a ball in the water and then out having a rest, getting warmed up, having a top up of fluids and grinning whilst he watched his mates climb the cargo net.

Thank you with all our heart to the people who see him. Who invite him. This day wasn’t about him. It’s about the amazing birthday girl and we were thrilled to be given the opportunity to be there too.

Be like Elsa..

Are things going well with your complex kid but you are waiting for the "bad thing" to happen?

I totally get it....I've felt that way too.

Of course we worry about our children…having kids is like having your heart walking around outside of our body and do whatever it likes. The feeling are as strong as if it were ourselves but we can’t control this little person.

When we are on the negativity loop we look and wait for the bad stuff to happy and that’s where so many of us end up. 
In the loop…over and over.

Instead of enjoying today and looking for a positive or a gratitude (anything at all, could be something tiny) …we are thinking f@$& "What if today is the day something goes wrong" I get it!!

Not only does it steal any joy from the days things are going well it also keeps us feeling on edge and anxious. 
Waiting for the shoe to drop is super common and we have ALL been there. More than once.

…but I also know living in the "what if" isn’t going to help him NOT have a reaction/seizure/anything else.

You know this too. There is freedom in the living in the "what is" instead of what might be. It’s all just a story we made up anyway.

Where your focus goes your energy will go and if you focus is on pain and suffering and the "might be" your energy will be there too.

The only truth is here and now…so …be like Elsa…let it go…and enjoy the peace xxx

There is no amount of worry that will control tomorrow. It only takes away today’s peace.

The greatest gift you can give your children

Life isn’t easy.
We ALL have challenges. Some seem insurmountable and others just a temporary blip but all of them will change and mould out thoughts and our actions.

But loving and lifting yourself up through adversity will be the greatest gift you can give to your children.

Showing our kids that we have the courage to empower ourselves one step at a time is so important.

Showing our kids we can learn resilience and grit and that these will be essential skills for them too on their path through life.

Putting ourselves last isn’t the answer, no matter how tempting it is. No matter how hard it is to remember ourselves on the list of things to look after. 
We are important. 
Not only are we the linchpin that holds the gang together...but by demonstrating these skills to our kids…we can show them there is a way forward, a path through the obstacles that they face and there is a joy and a happiness to the journey they are on.

Mirroring and modelling these life skills for your children will set them free.

So if you can’t do it for you, do it for them.
It will be the greatest gift you can give to them.

Beautiful Neurodivergent patchwork

Some days, at a very base level, it's syringes, tears, therapies and hospitals.
But that’s not all it is.

It’s also supporting our children beyond what the doctors THINK is possible into what they WANT to achieve.
It’s about showing them what’s possible not just probable and trusting their hearts and soul them with that dream.
It’s about taking what’s not likely and making it a goal.

It’s about accepting their neuro diversity as the next stage of evolution that we don’t understand yet.

It’s about showing them what’s possible or supporting them in the ' impossible’. 
It’s running through the waves with them so they can feel the sea splash on their face.
It's carrying them down a waterfall just so they can see the rainbow through the water.
It’s using a shower chair so they can feel what it’s like to have their day washed away. 
It’s taking what others take for granted and making a pathway for them to experience it too.

It’s finding a way.
It's doing it tough. 
It’s feeling the sunbeams shine through your heart when you nail it and the searing pain of not being able to make it happen.

It’s carrying your kid up three flights of foam steps in a play centre and holding them up so you can help them use a foam ball blaster. 
It’s getting in the water at pool party and moving them with their class mates so that they can be part of the fun.
It’s being grateful that you have one safe food and that today they will be able to swallow that chip like their mates. 
It’s carrying someone half your body weight across wet sand so they can see a dinosaur footprint.

It’s championing diversity so that is becomes everyday to their mates too, so the world they grown up in accepts them as equal. 
It’s knowing that harder isn’t always worse.

The world is what we create for our people and the world will see them through our eyes. 
It’s the privilege of a perspective we never could have known without the guidance of the not “typical".

It’s not about separating.. it’s about coming together. Society is a patchwork of people and we need every different square and every stitch.

Disability, Diversity, difference is an essential part of that neurodivergent patchwork and I am so grateful I get to see the world this way.