Chase's Heartbreak :(

I received an email yesterday from a group that organizes sport for youth with disabilities.

Nothing new in that, I’ve received many over the years but have chosen not to respond. The main reason was that we don’t see Chase as having a disability- more a health issue that causes him some challenges.

CF itself is a health issue. It’s the affects of it that can cause the disability – for Chase he has a serious lack of gross and find motor skills. This is mainly due to his body inability to get the nutrients from food that he needs to build muscle and strength.  

Chase has never ever let anything stand in the way of his love of sports. From Saturday school soccer to summer athletics he is always in there trying his hardest to keep up with his mates.

On Monday, Chase’s school had Rugby League. Chase was just so excited because he was getting to play. He went off to school with the hugest grin.

That sun warming grin was replaced with the saddest face I have ever seen Chase wear.

The sadness came from the fact that like many of the other sports teams Chase tries to be part of; his lack of skills is seen as letting the side down so he is benched more than he plays. And for the league tournament – the other kids wouldn’t pass him the ball.

My heart just broke for him.  We know Chase isn’t the best – but his attitude and will to play often exceeds some of his more able team mates. We also understand the teams desire to win, Chase wants that too.

So when this email came in, I read it. Then I read it again. Then I asked Chase if he’d like to go and check it out. Of course he was going to say yes- it was sports!

So we went and can I say it was the best thing I have ever done for my gorgeous son.

Chase was in there and having a ball. he didn’t know what to do and he was shy initially but he soon got over that as everyone made him feel welcome and more importantly he wasn’t side lined for making a mistake.

He wasn’t benched for getting it wrong – he just tried and tried and was rewarded when one of the bigger guys asked him if he’d like to SLAM DUNK as he was lifted skyward.

If only I had that damn video camera – it would have been priceless.

Still there is always next week – yep we are going again.

Our thanks to have to go to Sports Opportunityas well as to John Davey CEO of Waikato Basketball for the wherewithall to think of Chase and make the contact for us

THANKS GUYS for making Chase smile!

The Journey has Begun!: The magic of film

The Journey has Begun!: The magic of film: "Last night Chase got the opportunity to go to a Basketball game. The Waikato Pistons were playing and Chase loves his sport so off Steve and..."

The magic of film

Last night Chase got the opportunity to go to a Basketball game. The Waikato Pistons were playing and Chase loves his sport so off Steve and Chase went.

I sat home watching a DVD that almost scared me into a heart attack – 'Sanctum' a movie about caving and diving and I can highly recommend if you're not like me and aren't claustrophobic

But my heart wasn’t the only one racing.

Chase was given the honour of taking the ball onto the court at the beginning of the game. He then got to sit with the team! All of this organised by the guys from Winger Subaru and the Pistons themselves.  And it wasn’t just a case of just letting him do it. Because it was being televised live by SKY, permission had to be sought.

Chase’s eyes were as round as saucers when he got home and was explaining his night. I was just so happy for him.

And that’s when I got a tad grumpy; grumpy with myself.

Grumpy that I can’t seem to find a way to just do a little more to earn a little more to buy a video camera. Now that’s a luxury I grant you. Many families don’t have one.

It’s just moments like last night I would love to be able to capture so Chase can visit them again later on. There’s magic in being able to see yourself and I don’t think that magic truly disappears even if we not 100% sure that we like the way our hair was, or the extra few inches that suddenly appeared!

We have the TV documentary showing Chase. We even have loads of photos, just no other footage of stuff. Stuff like Saturday soccer, like Cross country and triathlons. No birthdays or holidays.

It is a case of we eat and in Chase’s case eat as much as we can get down him, or we scrimp and try to save those few hundred dollars for a camera.

The food seems to take priority and at the end of the day I’d prefer to have Chase here that just watch a movie, but wouldn’t it be nice.

But for now the camera can wait, I am just going to keep making sure Chase has nights like last night, that he keeps living his life without stopping for the right angle, the right light or even the right pose.

Got to love those Waikato Pistons though!

Who deserves to be born?

So the doco has hit the airwaves and with it comes the debate.

I expected the Right To Lifers to come out swinging – but maybe they were all in bed at that late hour. The negative interestingly enough from an unexpected quarter – from Adults living with CF.

They are right in some respects – the documentary was sad, focusing on CF as an illness with no cure. (Fact)

Yes there are better management practices now and life is being extended further and further for people living with this condition.

However, all of this goes out the window when as a parent you learn of yet another death of someone under the age of 16. One more of the children that you are used to seeing at the other end of the corridor have passed away and the fear you have for your own child resurfaces.

As a parent regardless of the condition your child faces, there is a certain amount of guilt, sadness and grief that you work through. Some work through quicker than others. So is anyone wrong in this?

No. Feelings are real irrespective of others opinions. They are the feelings of me as a mum.

We don’t for one moment regret having Chase; in fact I discuss this in the doco; that we wouldn’t give him up for all the tea in china. We adore him and the fact that CF has given us a new window on the world, one filled with compassion, heartwarming friendships and an opportunity to fight for a cause bigger than oneself.

So for all the adults with CF who criticize my feelings as a mum, I suggest you ask your own parents – was there ever a day, a moment when they didn’t feel a sadness that went to the very core of their being, a guilt that didn’t threaten to overwhelm them and a fear that made them question their ability as parents?

This is the role of parenthood and the documentary focused on us as parents, not on Chase and his outcomes but us and how we face a life with CF. And yes it is different from how Chase faces it. It is different to how Chase will face it when he becomes an adult.  And it may well be different to how adults with CF face it.

But just because it is different doesn’t make it wrong. Respect that at least.

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