So How Special is Chase Really?

So here we are coming to the end of another school holiday. This one was a little different; Chase wasn’t in hospital for the entire break!

Its great to have some time having fun as a family. This break the family got a rabbit. Not just any rabbit… no a HUGE WHITE ALBINO GIANT FLEMISH.

So far we have learnt that rabbits have big claws and sharp teeth. They like feijoas and lighting cables. They don’t mind the cat – the cat does not feel the same way at all

And Chase is in love… again!  Chosen name “Snow Buddy”. I sweetly suggested monster mouth but Chase wasn’t having it.

Said Rabbit is currently in hutch having Time Out for biting hole in couch.

And talking of Time Out, I remember when Chase was young and as all kids do, was into mischief. There was one particular occasion that he just went a tad too far and got sent to his room with a flea in his ear if you know what I mean.

Friends were staying at the time and one of them asked “How can you do that?” I thought I was about to be dobbed into the anti smacking brigade.

My dear friend was so upset that I could even contemplate telling Chase off let alone give him what for.

I had to calm her down and then explain that yes Chase is special. He has some special needs with his health and his learning. He has issues around his physical stature and not having a lot of core body strength or hands which in turn has created some issues with his ability to write and even ride a bike.

However, Chase is a boy. He is a child that requires support as well as guidelines. He needs boundaries to grow into and then expand upon. He needs love and loving discipline – and by discipline I mean what is appropriate for his age. Time Out was fine at 2, not so much at 9. Now it’s TV removal that has an impact.

My friend calmed down eventually and after I thought to myself about how we as parents treat Chase, we try to just be us. We make mistakes, we learn.

We advocate for him with his health professionals and we fight for and with him for good schooling. We work hard to help him accomplish small things and the bigger things.

We have expectations that he will rise above himself and never have to live on a benefit. We set the benchmark and work hard to show him anything can be achieved if you believe strongly enough and we love.

But I guess this can be said about most parents and their children. Chase is special – but Chase isn’t special either!

Hospital stays from a Mums perspective

Somebody kindly asked me what we needed help with while Chase was in hospital. Although I really thought about it – there was nothing I could think of!

For nearly 10 years Waikato Hospital and specifically Ward 53 have become a second home. We kind of just fit in when we arrive and get on with it.

Typically we know that Chase is going downhill so we kick into action:

·         I spend the weekend before going into hospital cooking up a storm and getting frozen meals prepared so we don’t have to eat A) takeaways or B) spend crazy money at the Café!

·         Steve mows the lawns and tidies up around the house so he doesn’t have to worry about that.

·         I also collect old toys, books & activities that I regularly ‘hide’ under the house and bring them out so the boys have new toys to play with while hanging out together in Chase’s room.

·         I pack coffee cups and a picnic pack. You may be surprised at how eating with real knives and forks, drinking a coffee from a real cup goes a long way into making it feel normal!

Then we set the button to automatic!

·         5am starts – Usually Dad heads to hospital to get there by half 6 to get Chase sorted for the morning, breakfast, clothes, the usual!

·         After I start work at 6am and finish work at 11am, then Joshua and I head up to hang out with Chase for lunch and the afternoon.

·         Now that they no longer have the playroom open in the afternoons it does get boring but we play games so that helps.

·         We try and have dinner together each night unless Steve is away for work. Then by 7pm Chase is showered, on the pump and tucked in with a huge hug from all of us. We go home missing him as soon as we walk out the hsopital door!

Then when Chase comes home – we breathe again, and just get back into the groove of keeping Chase healthy by supporting him and helping him achieve his little goals along with the BIG ones like his New York White Christmas and spending as little time as possible in hospital.

So hug your children, hug your friends and hug yourself – consider it Chase’s gift!

 From Chases Mum :)

5 days to go for Chase until he comes home YAYYY!!

Watch Out New York - Chase is heading your way!!

And we couldn’t have got started without YOU – The Fabulous FB and Online Community.

Some of you know Chase well; others met only in passing.  Others we may never meet but you are all DAMN FABULOUS for helping us get to this stage. With over 345 friends now Chase is on the way to finding some of the best fund raising ideas EVER!

We’ve had amazing ideas flow in such as:

• Auctions, (one bottle of wine signed by numerous MP’s already offered!)
• Pot luck dinners (where groups of 10 people take a dish & $10 and have a great & cheap night out!)
•   Drive In Movie (a community activity possibly best saved for Summer!)
• Brick Wall fund raising (already launched by Chase himself is up and running with great shots already loaded)
• Get schools having mufti days or sausage sizzles
• .50c for every 100gms of chocolate eaten (I personally love this one!!)
•   Make Chase the “World Ambassador for Joy” 
•  Have a skate day at Wrong Skate in Hamilton
• Have a cocktail evening for the young fashionable FB community!

We have one business sponsor who is sponsoring Chase $100 per month for 12 months. For this Chase has to work – it might be washing cars at the office one month or having his photo taken for marketing purposes! 9 more businesses and we'll be able to book the accomodation early saving some money!

Involving Chase at every step of the journey is crucial for me as his mum. And when he is in hospital like now, he’ll be focused on doing his rigorous daily physio to keep his lungs healthy. After all part of Chase’s job is to keep well, a bit tougher as we head into winter.

So as we head into the journey ahead of us, we’ll be updating this Blog as to where Chase is at and letting people know of any events coming up.

So add this BLOG to your favs and try and catch up with us soon!

HUGS & even more HUGS! :)

Lets Get Chase to New York 2012 - the beginning

This Journey was launched as a direct response to NZ's medication authority Pharmac imposing costs on Chase’s over night feeds and supplement feeding.

Chase at nearly 10 years weighs a paltry 22kgs.  Average weight for 10 yr old boys is 32kgs. The battle to gain weight is constant and sometimes down right exhausting for all of us, but we do it so we can have Chase for ever!!

Chase puts up with overnight feeding through a tube into his stomach. He doesn’t sleep so well and often tangles himself up in the tubing. We don’t sleep so well as we have to wake him every 2 hours to give him enzymes.

That’s 3 cans a night 7 nights a week. Now at $2.12 per can that’s $44 a week… and that doesn’t include the milk supplement Chase drinks during the day.

So the $50 a week we were saving for Chase’s trip just got canned.

And you know us Mums; we can be galvanized into action very quickly when someone starts messing with our kids!

·         1^st action – start lobbying the powers that be and email MP’s and Pharmac stating the facts!

·         2^nd action – find another way to fund the trip in case our lobbying didn’t work – hence the launch of “Let’s get Chase to New York 2012”

As parents, Steve & I will be funding most of Chase’s trip via pocket money and our own savings. In fact we’re considering selling the house and moving to put some funds aside if required.

But for today we are looking for help from not just friends and family, but from others who want to help one young man acheive his dream before it gets too hard for him to enjoy. Chase's job is to get well. He currently has Pneumonia and is off to hospital to spend his school hols trying to get well before next term comes around. But he's hanging onto his dream and focussed on the big goal!

So we welcome you to join us on this journey of inspiration, magic and hope.

Chase's mum, Donna