The Road to Embracing Noah's Diagnosis for What It Is

I have been thinking back today. Just reminiscing about the start of our story with Noah. How I used to feel. I think about it now to be able to help others. To think about how things were to how things are now.

I remember going through the, “But it’s not fair…why can’t things just be normal, why can’t today just be different…is it too much to ask to just…”

Resentment that it’s always so hard starts to build. Guilt that maybe it’s your fault it’s like this (spoiler alert…it isn’t). Noah was allergic to everything. Everything we tried he ended up back in the hospital. I so badly wanted to be able to feed him. Then came the tube and I was scared, upset and worried for the future. Little did I know this was just the start of the upgrades and differences we would be gifted. Then we start to make up stories too…

“I’m not going to talk to my mates about it, they don’t want to hear about my stuff…they won’t understand what I am going through…it will be easier to just detach…I don’t want people to know how weird/hard/strange things are….I get it.”

Our expectations of what our babies would be were different. It wasn’t supposed to be this way was it. But if we truly believe everyone else is having a normal time, doing normal things, we only succeed in isolating ourselves too. It’s another story we have made up. The problem is that often this fantasy of a normal life and things being easier is what keeps us going to — the thought — that maybe this time will be better. It’s a tough loop to be in.

Acceptance that things are different, and that our reality isn’t ordinary, is essential. And oh so freeing. Our silence about how we feel about what “should have been” stops that grief we need to feel to let go. To grief our past expectations are the beginning of our healing. We can’t forgive if we can’t grieve. Loss of what “might have been” is confronting. Acceptance of “what is” is how the next chapter starts. There is a deep peace in accepting “what is.” All of it. There is a deep joy in celebrating the differences. In reality things are different, but they are also the same as so many parents and the worries for their kids.

We just want what is best for them. Noah doesn’t have special needs, just additional needs. I am grateful for his amazing upgrades and incredible insights into a world I would never have known without him.

I left behind what “should have been” a very long time ago, and I am so glad I did because otherwise I might have missed how awesome things are…just as they are

They don’t want to hear about my stuff

I know that when things get hard I start to make up stories in my head.

"If I don’t talk about it my mates that will make it easier…they don’t want to hear about my stuff…they won’t understand what I am going through…it will be easier to just detach…I don’t want people to know how weird/hard/strange things are...it's just another sad thing to share and they don't need that”

Now I didn’t know this was what I was doing, or at least I wasn’t aware. It was easier to not think about it much.

I am getting better at it now…BUT I do still hear that voice when the poo hits the fan.
Most of the time I can tell the voice to pipe down but I am also blessed with mates who notice I am quiet too. Mainly because I can talk underwater most of the time, so quiet is unusual for me.

If we truly believe everyone else is having a “normal" time and wouldn’t be interested in our stuff we only succeed in isolating ourselves.

To add to this isolation loop is the this fantasy of a normal life and "this time things might be easier"….the thought…that maybe this time will be better keeps us going. It’s a tough loop to be in.

Acceptance that things are different…and that our reality isn’t ordinary…is key.

So is connection. It’s essential. It’s not easy to reach out and say “ Hey do you have space to listen to me because I really need to talk about something that’s hard”

Maybe deep down we are worried we will deepen the disconnection by having people see how tough it is and scare them off.

But when you are lying face down in pit of despair…turn your head to the side. There is a whole bunch of us down there with you. Wave! Hiiii!!! I see you!! People you didn’t expect,
“Hey I thought you had your shit together”
“Hey I thought you did too”
“Why didn’t you say anything??”
“Why didn’t you?”

We disconnect from our heart when we feel like we have too much to handle. But we are created to belong and to feel connected. Self compassion and then reaching out helps anxiety, depression, chronic stress, exhaustion and loneliness. We are all in this together.

Nothing you will ever say will be too much for me to handle. I want to hear what you have to say, I get it, because I live it too.

And one more thing, I am never going through too much to be unable to hear you, listen to you, connect with you because your stuff is somehow less. That’s a story you made up.

So let’s make a deal. To connect. To share. Together we can do anything.

May the odds ever be in your favour

I took this photo, exhausted one night, and sent it to one of our gang...the Hunger Games mums. To make her giggle, to show her I got it and to show I would always be there.

Let me explain...

The Hunger Games salute "may the odds ever be in your favour" It started as a throw away comment...a giggle between a group of beautiful mums who know what this path is like. A group of people fighting for their lives and lives of their children all together.

It became an easy way to connect and make each other giggle across the corridors of the hospital and as we left a ward bedroom. A way to say....I get it..I see you...we are in this together.

I think about this connection and the love we have for each other often. We talk or message every day about things that would make other peoples head fall off. We laugh, we sob, we connect in the fuckwitery of life and it's joy too. I would be lost without this gang.

Just like in Hunger Games, our love for each other is a sustaining power. We endure through our acts of kindness and our love provides strength when we need it the most.

We never would have met in any other circumstance. We are from different places, with different jobs (before kids) and moved in different circles. The space station...and our little astronauts brought us together.

In the movie one of Katniss's strengths is her stoicism. She uses it to go into survival mode, it's her mask as she calls it. I get that too...we all do. We have all been there. BUT part of her journey is learning to accept her it's ok to have all those emotions fear, dread, sadness, happiness and joy and that there are a strength in addition to her stoicism.

We disconnect from our heart when we feel like we have too much to handle. But we are created to belong and to feel connected. Self compassion and then reaching out helps anxiety, depression, chronic stress, exhaustion and loneliness. We are all in this together.

But when you are lying face down in pit of despair…turn your head to the side. There is a whole bunch of us down there with you. Wave! Hiiii!!! I see you!! People you didn’t expect,
“Hey I thought you had your shit together”
“Hey I thought you did too”
“Why didn’t you say anything??”
“Why didn’t you?”

I want you to know nothing you will ever say will be too much for me to handle. I want to hear what you have to say, I get it, because I live it too.

And one more thing, I am never going through too much to be unable to hear you, listen to you, connect with you because your stuff is somehow less. That’s a story you made up.

So let’s make a deal. To connect. To share. Together we can do anything.

Hospice Camp

How can a moment be so intensely beautiful and so exquisitely heartbreaking all at the same time?
How can a moment be so full of laughter and happiness and yet bring you to your knees in grief?

This was our weekend in Feb with the Very Special Kids hospice camp.

Let me explain.

Noah and I both love camp. It’s so much fun, he gets to hangout with the (incredible, selfless) volunteers and be silly and I get much needed down time with the parents I have grown to love very much too.

100 volunteers. 100 people, some here with their whole family, stop their lives and choose to jump into ours for the weekend. To be with us, to love our kids like we do, to see them, to include them and to make memories with them. That’s love.

I walked on the beach with the other parents, whilst Noah got up to no good with his minder, how perfect!
There are dress up nights, talent shows, cheese and wine, trivia, foot spas, nail painting, craft, firetrucks, silent disco and even a ride with the HOGs.

In the evenings whilst the kid sleep, we hang by the fire, drink wine and laugh until we cry.

You see we know each other already. We know this fight, we know this feeling, we know this joy, we know this pain, we know this grief. Even the parents we meet for the first time, in seconds we have know each other forever.
You see we are united by a child who’s time on earth will be much shorter than it should be. In a painful understanding of what will be and for some what has been already. We hold each other, we listen, we know.
It’s something you can’t explain to anyone else on earth. Not properly.

And oh do we laugh! The darkest sense of humour that shocks the volunteers listening, which makes us laugh even more.

I love this place and I don’t like that we are here.
I need this place and I wish it wasn’t this way.
I am so grateful to be here and I wish I wasn’t here.

I wish it was different for us all and I am so grateful for our life.

We live with joy because it’s not about sucking it up or soldiering on…it’s about embracing what IS happening, not waiting for things to change or stop be happy.

Living in joy is to love with our whole heart even thought there is no guarantee what the future may bring.

If the question is “What would love do?” The answer is this camp.

Asking for help

Does anyone else resonate with this?

Asking for support, help or even a safe space to vent used to be incredibly hard for me. My close mates knew that when I went quiet...that was my darkest times.

I am also lucky that they knew this and kept reaching out.

Now...slowly but surely I am getting better at asking for help.
Like messaging mates and saying..I need to get outside, I need to see grown ups, Can you walk with me? Can you drink tea/a bowl of margarita with me (depending on the day right :-P)

You know what changed? Well firstly I acknowledged that putting myself last on the things to look after was serving no one. It made me more stressed and certainly more isolated.

And secondly I worked out it was a gift for others, to be asked to help. No one likes to feel helpless so by giving people the opportunity to be there for you is lovely too.

I remember in the middle of a very long stint of being at home with Noah (22 weeks as it turned out) I had decided that I would have a giant spring clean..you know those moments...and I created 10 bags of stuff for the op shop. It sat in my corridor for over a week...and I thought...you know what...I am just going to ask for help.

I put up a post on facebook...veryyyyy similar to the photo actually and within 5 mins I had 13 responses and within 10 mins 2 people on my doorstep ready to get the job done. You know that was years ago...and it still brings me to tears that people were so willing to give, to help. It may have seemed small to them, but it was everything to me.

I know it's hard some days to even work out what you need....but even a "I don't know what I need but I know I need something can you be with me" text is perfect.

Give it a go

Give people the opportunity to give back the love you so freely give to others.

Is self care just a buzz word?

I wanted to talk to you about the phrase self care and why I think it’s dangerous.

You see we look after so many things in our lives…we look after our kids, you might have a partner that you help look after and in turn they help look after you, we look after our pets, we look after our plants and so many things…

Yet when it comes to ourselves it’s not just as simple as looking after ourselves.
Now, there is a buzz word…self care….and somehow looking after ourselves has become a luxury items and not an essential part of our lives.
And that’s why it’s dangerous.

By calling it self care we have made it an option. Something that can be opted out of if something on the list needs to get dropped if you are too busy.
Let’s put it another way…
If you were about to race formula one you don’t go through the check list like…well the track is good, the crowd are happy, the fuel is in…”what about the car” ahhhh it will be ok….it’s supposed to run ok so I sure it will. Nooooooo the most important part of that race IS the car.

Your body and mind is the vehicle you travel through life in and YOU have to look after it. You have to look after yourself.
It’s not an option, it’s not one for the f#$k it bucket, it’s top one priority at the top.

Imagine if everything had to go on without you, that’s what you are risking by not looking after yourself.
And trust me…I know it’s not easy. Not at all.
But I also know the alternative is WAY worse. Please treat yourself as you would your best mate, or your own child and take time for you, ask for help, speak kindly to yourself, give your brain time for stillness and peace.
MAKE time.
Make time for you.
This is not about being grateful we have have a bath on our own once a week or have a cup of tea…I mean something deeper.
Something that brings you peace, stillness.

Getting back to "normal"

This morning, as part of a school assignment, Noah was asked to write a "Letter to myself" in the future as a reflection of life during coronavirus.

I filmed it as he mentioned his Granny and Grandad in it and I wanted to share it with them. He is struggling to speak at the moment so this was an exhausting task.

But this is the part that I wanted to share with you.
Right at the end.

Noah says "This is not my first time in isolation so I am glad people understand what it feels like to be in isolation all the time. If is happens for me again then hopefully people will understand and include me in things and still play with me online.

As the world changes again and people get back to their lives, please don't forget the people who can't.
Don't forget the people for whom this was their everyday anyway and you just got to experience it for a short time.

Think of all the people who are home isolated anyway.
Unable to get out
Unable to see others.
For the first time ever they may have been able to join a fitness class with friends, to join in with a theatre group, sing in a choir, take an arts class, join an online pub for a trivia night.
For the first time they have been connected with a world that people before, took for granted.

I know you don't take it for granted now.

So please...don't forget about the people who still need to isolate.
Who still can't get out into the world for a million different reasons.

Everyone needs connection. It is not a special need.
Everyone needs love. It is not a special need.
Everyone needs to know they are seen and heard. It is not a special need.

Or as Noah says "Please still include me in things and play with me online"

**posted with Noah's full permission and understanding**

Courage

But what does courage look like?

Sometimes courage roars and is the powerful voice inside and sometimes courage bears witness to all the tears you have cried.

Courage can be the quiet voice you whisper to yourself that everything is going to be ok. Courage can be the conversation you have been meaning to have or the text you have finally sent. Courage can be standing up and screaming “This is not ok"

Sometimes courage gently pushes you to finally make that call and sometimes courage says "Help me I am not coping with this at all”

Courage can be peaceful
Courage can be still
Courage can be kind
Courage can be wise
Courage can be truth.

Sometimes courage is pushing yourself forward even though you are comfortable in the past. Sometimes courage is knowing it’s ok to come last.

Courage is strength
Courage is brave
Courage is taking the first step.
Courage is grace.
Courage is vulnerability .

Drawing by Noah

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.

Deep Breaths

Who here feels stressed or anxious everyday?

We have all heard of fight or flight, it’s a stress response that helps the body prepare for impending danger.

The problem is when this response is triggered by stresses we experience every day and not in response to being chased by a tiger.

The result is all sorts of health problems including high blood pressure and anxiety. Stress also suppresses the immune system and makes you more likely to get sick and 'ain't nobody got time for that!

Of course we can’t just avoid stress and in fact it wouldn’t be useful to try. We can, however, change how we respond to it. One way is through deep breathing. Big breaths into our bellies that put us into a more relaxed state.

Try something for me now…tense all of the muscles in your body…in your arms, your legs, your shoulders…now…try and take a deep breath. You just can’t.
It’s this tension…that most of the time we are not aware of…that deep breathing will also help us to get rid of.

Anxiety just melts away in the moment for me. 
It also releases endorphins which are the bodies Happy brain chemicals. 
Endorphins also the bodies natural pain killers. 
Breathing into your belly, using your diaphragm, helps removes toxins from the body.
Reduces stress and lowers blood pressure.
Helps you sleep better.

Use the picture to guide you through.
Breathe in through your nose, deep breath into your belly for 4 seconds. Hold onto the breath for 4 seconds and then allow the breath to release through your mouth for 4 seconds. Hold again for 4 seconds and then start around the square again.

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.

In a world where you can be anything, be kind.

I see it so often. Especially on "support groups" on the internet. 
Parents reach out for support, knowing they might have said or done the "wrong thing" and they are torn down for it. 
The internet can so often de humanise an experience with another person.
So I will share with you what I wrote on one such post this evening. 
Once I had offered practical supports and steps she could take to answer the question she had asked...I wrote,

"For everyone else so quick to judge the mum asking for help....just imagine...everyone is doing the best they can with the skills they have. She is also reaching out to expand those skills. So ask yourself...how can I help without judgement...how can I further those skills without causing harm. Let's be kind."

You can choose to be part of someone’s life changing moment, or their darkest day.

If you are ever stuck with what to say or do and you feel your own judgement rising..
ask yourself...
What would love do?

Inclusion not Integration

School is about to get started again and all sorts of children will be heading to the classroom.

Ordinary kids alongside ordinary kids with additional needs. Kids on wheels or on walkers or on foot. Kids who talk using computers, kids who talk with their smiles and kids that use words. Some that can write and some that can type. Some that eat with their mouths and some that eat with a tube.

Our children are so diverse and thank goodness for that.

To be able to see the world through so many different perspectives is wonderful. It's a gift.

I wanted to share with you the difference between Integration and Inclusion.

Integration puts people in the different groups and whilst often done with good intention, leads to exclusion and separation. It leads to kids with additional needs not being included in friendship groups and in play. Kids can only mirror what they are taught and if they are taught to fear difference and keep people seperate, then that's what they will demonstrate.

Inclusion believes ALL children are different (because they are horray!) and ALL children learn and play in their own way. Inclusion helps everyone. Inclusion is acceptance and respect for all.

For their rest of their lives children with meet with people who are different to them....in so very many ways...our world is a many splendored thing and every person has value to bring to a community. Teach them now that diversity and difference is the reason our world is so utterly wonderful. We must encourage them to meet this difference with openness, love, kindness and curiosity and not with fear.

Kids with differences want just what other kids want, it's not a "special need"
So please encourage your kids to include them. To see if they want to play, to ask if they can wheel them outside, to read with them, to chat with them...all the things you would do at playtime or in class.

Not being able to walk, or talk, or write doesn't take away from the fact they do want connection and friendship...just the same as everyone else.

Inclusion is about belonging as this wonderful photo of Noah and his mate Tilly shows.

We are lucky Noah has so many wonderful friends.

He's just Noah to them. Not Noah on wheels, or with the tube, or with the plastic legs...just Noah. How wonderful 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.

Is fear holding you back?

We are born with only two innate fears: the fear of falling and the fear of loud sounds, the rest we learn along the way. Sometimes are fears are things we have picked up through and experience and sometimes we have taken on fears of others through our family and friends.

Your brain works in many ways to keep you safe.. but it can also be off kilter... it perceives so many things as a danger. In fact your brain will send out a warning signal each and every single time you do anything for the first time.

“Ohhh you won't be good at this, ohhh watch out this is hard... be careful!!” It screeches. 

Most of the time you are not in any danger at all and you just need to tell you brain to pipe down!

“Thanks for the warning brain but I have got this”

If you are brave enough to push through these signals and give it a go anyway there is nothing quite like that feeling of achievement.

In the meantime you could be spending anything from a minute to weeks feeling scared about something you know you want to or should be doing and we all know that's not a nice feeling.

So for now...think about something that you did in the past that you were fearful off but then you pushed through and did it anyway. Remember how good to felt afterwards, how rewarding the experience was and how it really wasn't as bad as you thought it was going to be in the first place. 

Use that feeling now...hold that feeling...and tell your brain it's going to feel great this time too. It's called a future facing feeling. Don't think about your fear right now, think instead about how great you know it will feel afterwards. 

Literally…tell yourself…

“Hey brain.. gonna do a presentation at work today, I am going to smash it and it's going to feel so good!

Every time you feel like you might throw up about it or even stop yourself from doing it altogether tell yourself

“I will smash it, I will be awesome” over and over and over.

Let this mantra become the only truth. Flood your mind with this new thought so there is no room for the fear. Let this be the only way... 

By the time you do the thing you were so fearful of it will be a walk in the park. 

Your comfort zone isn't comfortable at all.

We are creatures of habit…programmed to do what feels safe, what feels comfortable and what conserves the most energy. This is why we are drawn to staying to bed, watching endless hours of netflix and taking the easy option. 

But in order to thrive and not just survive…in order to achieve the extraordinary and not just the ordinary we need to shove ourselves up and out of the comfort zone more often. 

Actually…I really dislike the term comfort zone. Mainly because for most people it’s not comfortable at all. The things I mentioned above are like junk food for the soul…great at the time but make us feel yuck afterwards. 

It can be comfortable to say, "I will do that tomorrow" or "Forget it, I wouldn’t have been any good at that anyway," but it really doesn’t feel comfortable afterwards does it? In fact that “comfort zone” can fuel anxiety, stress and that horrible, ”I should have done” feeling.

So I won’t call it the comfort zone, it’s more like the submission centre we are submitting to the side of ourselves that wants an easy life and let ourselves off the hook. Not because of self care or preservation but simply because we can’t be bothered.

Change the excuse you are giving to yourself from what you are saying right now to “It’s not a priority” and see how that feels.

"I don’t wanna work out"  verses "My health is not a priority." 

Not so comfortable now is it…

"I don’t wanna work hard" verses "My future is not a priority." 

You can do more and you do deserve better. Don’t let yourself off the hook.

The Power of your words.

“Be mindful when it comes to your words. A string of some that don't mean much to you, may stick with someone else for a lifetime." -Rachel Wolchin

No matter who you are, no matter what you do, never underestimate the impact your words can have on others. ALWAYS be mindful of interactions with people. YOU can be the difference in someones day...make it a positive difference.

Let me give you an example….I bet you still rememeber something horrible a kid said to you at school or someone said. The person who said it however…probably still can’t. For the person uttering them a string of words can be meaningless…but for the receiver it can be life changing. 

This is why it’s so important to be mindful of what is coming out of your mouth. 

Especially in anger. We all know how hard it is to stop outselves when we feel angry..but here is something that might help you

A Japenese scientist named Dr. Emoto gained international fame from the film “What the Bleep Do We Know?!”  which praised his experiments on the cellular structure of water. 

During his experiments he seperated 100 petri dishes of water and he praised  half…and shouted at and scoled the other half. The results were remarkable with the praised water forming beautiful shapes and the scoled half becoming jagged and ugly. 

In another experiment, Masaru Emoto tested the power of spoken words. He placed two cups of cooked white rice in two separate mason jars and fixed the lids in place, labeling one jar “Thank You” and the other, “You Fool.” The jars were left in a school classroom, and the kids were instructed to speak the words on the labels to the corresponding jars twice a day. After 30 days, the rice in the “you fool jar” that had been constantly insulted was now a black modly mess. The rice in the jar that was thanked was just the same as it was 30 days earlier. 

There is no doubt words are very powerful. So why am I talking about rice and water? Well consider that our bodies are about 65% water…up to 78% when we are babies. 

How many times a day do we throw our words away? 

We say things like, “I hate my hair,” “I’m so stupid,” “I’m such a idiot.” 

Without stopping to think tha these words bring a negative energy to us and affect us on a physical level. Ancient scriptures tell us that life and death are in the power of the tongue. Words can start wars, cause harm and break souls…but they can also heal wounds, be uplifting and change lives. 

So THINK before you speak

Is it True? Is it Helpful, Is it Inspiring, is it Necessary and is it Kind. 

 "Words have energy and power with the ability to help, to heal, to hinder, to hurt, to harm, to humiliate, and to humble." -Yehuda Berg