Waikato Winter & CF - it can suck!

It’s that time again – winter in the Waikato. Damp foggy days that lead endlessly into one another.

Apprehensive moments when the power bill deposits itself in the Inbox.

And then there’s society – just waiting to share itself with us. And when I say Share I mean Share.

Yes It's Bug season!  

The time for flu’s and colds, for sniffles and sneezes and the time when we know Chase is more at risk for catching yet another chest infection.

It’s not the cold, the bugs hate the cold. It’s the warm damp inside conditions that seem to affect Chase the most. The warm, almost stifling class rooms with their heat pumps. The closeness of class mates as they share their lunches and ..dare I say it... SNOT!

So what do we do?

We worry. We plan and we spend extra time being more hygiene vigilant.

Washing hands, burning tissues immediately and getting out into the crisp air for some good lung burning exercise.

Finding time to live and ignoring the bugs has been my plan to date. It doesn’t always work and Chase invariably ends us with the odd bout. This typically only really happens when his weight drops. Keeping him warm is probably the biggest challenge.

He’s 9yrs old and just wants to move, and with fewer clothes on, the better. Running around outside in the ankle deep mushy-wet grass, no shows with no jersey to protect him against the blast of the southerly and yet he feels hot.  

The old saying “Put some clothes on, your mothers cold” springs to mind.

So what do I do?

I yell “get some clothes on or get inside” as I rap the window for his attention hoping it doesn’t shatter.

I crank up the oven and put together bowls of hot fat laden macaroni cheese, just to try and add an extra layer of fat to his skinny bones. I load up the school lunch box with chocolate bars and tasty treats to tempt him to eat just a bit more.

And Chase and I together, spend sleepless nights as we rely on a machine to feed him extra calories so he can remain well.

All in all, winter takes its toll. But not for one minute would I change it.

No matter how grey the slate like sky is. No matter how murky the drizzle becomes, Chase walks into the room and the sun shines through.

For that I am thankful for winter and every other season that Chase shares himself with us.

The Journey has Begun!: When two words just aren't enough

The Journey has Begun!: When two words just aren't enough: "Have you ever noticed that one of the simplest words is often A) the hardest for some people to say and B) a word that just doesn’t quite sa..."

When two words just aren't enough

Have you ever noticed that one of the simplest words is often A) the hardest for some people to say and B) a word that just doesn’t quite say enough for you?

I’ve struggled with the words Thank You all day. Not because if find it difficult to say, but because it just doesn’t seem at all adequate.

It just isn't enought when we want to acknowledge all the fabulous people that turned out last night for the Girls Auction Night in support of Chase.

Having raised a gynormous $2,119 (and yes as a marketing expert I am allowed to make up new words) we had underestimated the support, care and love of the community.

We also had underestimated how a dream can inspire people.

There were two important factors when it came to deciding whether we did an auction night:

1)    that Chase could be part of it as he has to earn this money

2)    that others had to gain from it as well.

And I’d like to think we achieved all of that and more.

• Lovely women like Debbie from Tupperware, Misty from Le Reve, and not forgetting Rachelle from Nutrimetics got a chance to promote themselves and sell some fantastic goodies.
• Newly self imposed business woman K-M Adams also got a chance to demonstrate her amazing skills as MC and auctioneer for the night,
• And of course magnificent profiler Kevin Mayall was on hand to share some great secrets.

None of this would have been possible without the other donations and support from:

• Vibra-Train.
• All Sorts Store
• Capelli Studio
• Heritage Gallery
• Vault Financial Group
• Hamilton Party Hire
• Louise Bourke Super Chef
• The Demo Girl
• The Loaf Company
• John & Judith from JC Trailers
• Hamilton Rivercity Lions
• Fully Equipped
• Artist Keren Persson
• Jon Broadley
• and not forgetting Sue Moroney and her Labour Party Colleagues, John Key and all the other MP’s who supported this cause.

When we were asked why we’re doing this now and not waiting until Chase is older, we had to be honest.

In all reality we don’t know how old Chase will get.

We plan on him getting married and giving us grandkids, but in case that doesn’t happen, we’re not waiting for tomorrow to make a dream come true.

As a family we’re living every day right here right now. 

• The days that are fantastic and the days that are not so hot
• The days when we want to chuck in the towel as we are faced with yet another hurdle
• The days when we’ve found a way around the hurdle and propel ourselves forward
• The days when the sun is dazzling the horizon with its blessed warmth and the mornings when the fog refuses to loosen its grip on our chilled bones.
• Each day is a blessing and gives us another moment to imagine and create our  dreams.

Dreams are for now, they are about planning, organising, smiling, laughing, giggling and most of all for making sure they can be realised.

So as we head closer to Chase’s dream, the words Thank you are simply not enough.

“Kia ora” says it so much better

Ngā mihi nui

from Chase & I

Is one Love Enough?

“We love our children the same”. “All our children are loved the same”… inane comments voiced to justify some worthless societal demand.

Is it possible to love our children the same? I have never believed, even growing up that it was possible to love two let aong more children the same.

And now I face my own family journey, I am loving my boys differently.

The word ‘differently’ is the crux of the sentence – is different good or bad?

For me loving my boys differently doesn’t have to be the negative experience of my own childhood.  

For me it is simply about reflecting the differences in my boys

Chase, my first born.

My eldest.

Chase, my almost ethereal being.

Chase who wanders the world in a constant state of delight and excitement.

Chase, my wisp of a child who at challenges those of us more rooted to the earth.

Chase who simply loves no questions asked. Who cares no demands made, and who gives of his heart willingly and in totality.

Then there is Joshua.

My beloved second born.

Solid, definite in who he is.

Loving but cautious. Withholding a little of himself just to be sure.

Joshua so vocal and warm, with a hint of his own terms shining through the glow

Joshua who decides when and where.

 Joshua who questions and focuses. Joshua who fixes.

And I love them so very differently.

• Chase is and will always be my first Love.
• Joshua is my future and my hope.

Each is as important in my life as the other, but each brings their own sense of worth and value.

My role is simply to provide the love that will enable each of them to take their potential and blow it to smithereens and grab life no matter what it throws at them with both hands regardless of whether their feet are on the ground of floating just above it.

I am honoured daily to see my love reflected in their eyes regardless of the difference

When do Smiley Faces really count?

Yesterday was a crappy day for us as a family. Crappy for Chase and just a day we don’t want to repeat.

The sun today rose and shone in through the condensation coated windows and made me realise there is a lot to smile about.

The roller coaster journey of CF that we found ourselves on back in 2001, has taken us to places we never dreamed of. Provided opportunities we’d never have imagined and created connections with people that are truly awe-inspiring.

Yesterday made me realise that although we often feel very alone in this journey with Chase, we aren’t.

There are people, many who were strangers that are now firm friends, friends who whether we have met or not, offer their support and inspiration just when its needed the most.

After being told many years ago that your children choose you for a reason, I was reminded yesterday, that Chase chose me as his mum for my pig headedness, my ability to create action and my focus on wanting to make it better – always.

Steve as Chase’s dad was chosen for his ability to see sense and to face certain realities and for his ability to make friendships with anyone anywhere – me, I struggle with that with a debilitating sense of shyness (I know who’d figure but it's true hence why i don't do networking so well!!)

So here we are in the position of taking care of a special young man. A young man who challenges the best in us and the worst in us.

But with the support of those around us in places we’ve never been, and to those around us who know us a bit more deeply, the journey continues with a new sense of wisdom and gratefulness.

Remember a purposefully placed smiley face on an email, a touch on the shoulder, or a comforting smile can change the way someone sees the world.

Thank you J  

Its not always smiles and High Fives :)

I read a poem the other day about the capacity of a mother’s love. I think it was one of those emails that go around and around again, but for some reason this time it seemed more poignant.

What is it about mothers that enable them to fight momentous fights just for the sake of their kids?

And what type of society does it suggest we live in when as a parent we have to continuously fight for understanding.

And can I admit that I am exhausted from all the battles?

Today saw an explosion from the depths of my despair. An explosion directed towards a school and education system that refuses to acknowledge their part in my child’s welfare.

·         He doesn’t come from a broken home

·         He doesn’t come from a back ground of poverty

·         He is well loved and well cared for

·         He isn’t spoilt and surely doesn’t get everything he wants

He isn’t recognised as being ‘At Risk’ because of the above and yet he is more vulnerable and more at risk than at any other time in his life.

We had to call the police today on our 9year old son and it broke my heart more than you could ever imagine. Even they acknowledged that if we cannot do something now, our son will face more serious consequences later on, at a time when as parents we won’t have the same ability to advocate for him.  

So we start a new battle. One for support, one for finding the necessary resources to help him find tools that arwill enable him to better manage the issues ahead of him.

After all isn’t that we mums do – we continue the fight regardless of how tired, frustrated, or alone we feel.

And I wouldn’t have it any other way.

Being a mum IS the most important job in the world.

‘Til death do us part, and beyond

So what do you do when your child asks when are they going to die?

Generally this comment is laughed off or perhaps some parents might even explain death. For me it was a question that slapped me in the full force right on the face.   

Chase is 9 nearly 10. He knows he has CF. Until recently, he didn’t know the implications beyond having a mickey button and being able to eat junk food.

But now he is beginning to get that he is different, a little different from the kids at school and from us.

When Chase asked me this week, as he has done before but probably not as seriously, I did what I always do – changed the subject.

There is this part of me that wants to be able to explain it sensibly but I can’t.

When Chase was first diagnosed and we understood what we were facing I did something that some would find morbid – stupid even. I planned Chase’s funeral. I chose the music, the where and the who. I planned who would carry Chase and where we would lay him to rest. Done, sorted and back in the recesses of my mind so I never had to think about it again allowing us to get on with living a full life.

So when Chase asks that question – "when am I going to die Mum?",  it hits me that in all likelihood I will have to take that suitcase off the mind shelf and open it one day.

and I damn well don’t want to.

I want Chase’s life to extend beyond mine, for him to travel, meet someone special, to have children maybe (IVF is a must for Chase). To get laughter lines like the ones he’s given me, to get grey hair like he’s given his dad and to be able to reflect on a life long lived.

Instead we are focusing on a trip to New York so he and I as a mum will have memories that will carry us through a shortened life time, when the times are tough and we both need to hang onto a shared memory. When times are good and we can laugh with each other.

But most of all we want him to experience life right now – not wait until he is older – because living with CF means that ‘till death do us part may be sooner than we’d like.  

:) Donna

PS: Aerosmith "I don't want to Miss a thing, and Celine Dion 'Fly' are 2 songs filed away for Chase.