Updated: Dec 18, 2020
Join us for the good, bad and WT?!? moments as we travel from Brisbane to Adelaide for Christmas and then back again in 2021.
Post 1 - Pre Trip
When I created Jack's Butterflies, I wanted to help families like mine, to create moments so that when they look back on their time with their child, it is not just profound sadness. There are wonderful, non-perfect, everyday moments as well.
Do you have a child with a rare disease?
Do you have a child with another illness?
Do you have a large family?
Or are you just finding life difficult and you don't know how to break that glass ceiling that is holding you in place?
Do you want to just follow along?
I am going to be sharing details of what we have had to do to plan for this adventure. Having a 9 year old who is non verbal, non mobile, has seizures constantly, lots of medical problems, regular oxygen, uses a SATS monitor and suction machine... am I missing anything??
I am going to share the moments we have on our adventure, the places we visit and the places we stay. What are the best and challenging places to visit with a wheelchair. How do we handle nappy changes on the side of the road in the middle of nowhere? (eek). How do we handle the fights???
This is not the first time we have driven to Adelaide and I would like to share a couple of things that have gone wrong.
A few years ago, we were almost home and we were driving through Coonabarabran NSW, when all of a sudden we see a tyre rolling past us. I look backed and yelled 'I think that is from our Trailer'. Paul pulled over and sure enough, the wheel on the trailer we borrowed from someone snapped and kept rolling down the road. We got out, Paul chased after it and I just stood there, wondering what on earth we were going to do. A lovely local man who was driving behind us stopped to have a look and then offered to loan his trailer to us to get home and he will pick it up later the next week. We couldn't believe his kindness OR the fact that on his way home from picking it up, the wheel snapped off of his trailer. I SWEAR, we did not overload it at all. We were told they were both old trailers. Paul may or may not have been the one driving....
Another trip, this time we were heading down for my two sisters weddings, they were kind enough to plan them on consecutive weekends so we only had to make one trip. We were trying to get there as quick as possible so we decided to drive through the night. Unfortunately, while Paul was driving (see what I did there?) and two kangaroos decided to jump into our car. We got picked up and taken back to Narrabri. We didn't know what to do, there were no hire cars available with tow bars so Paul hired a car to drive back to Brisbane, pick up our second car which was a Captiva and drive back to us. The kids and I were at a caravan park for two whole days by ourselves and in the late afternoon when Paul was driving into the caravan park, the car was smoking badly. YEP, we made the very smart decision to pick up a car that has NOT been serviced to drive a very long distance. So, there we were stuck in Narrabri with two broken down cars. My mum helped out and paid for me, Emily and Molly to fly back to Brisbane on a very, very small plane transferred to a Qantas plane and finally arrived in Adelaide on a Thursday (half a day after our two older teenagers arrived on their plane ride). Paul hired a commercial 4x4 with a tow bar, got permission in writing to use it and continued on the drive with Lauren and Jack. They arrived the night before the wedding.
2 years ago, we hired a wheelchair accessible van and an RV to spend Christmas in Adelaide. We were staying about 45 minutes out of Tamworth when I could hear Paul shivering in bed (are you seeing a pattern?) and even vomiting outside. Oh no, he is not well. I checked him and he was burning to touch. 6am, I took him to hospital and he ended up with cellulitis. A very nasty infection that had him on a drip and the local hospital refusing to let him out (we were 5 or 6 days away from Christmas). I called mum hysterical and once again, she came to our rescue. I begged the doctors to let Paul out saying my mum is on her way and she is a nurse and can continue giving him the TV antibiotics. They didn't allow that but they agreed to let him out because she is a nurse and I cried and cried and begged. I stopped in the town to see if I could find any presents, bought dinner then I got back to the kids around 5pm who were alone in a storm in a cute little caravan/RV park that only charges $15 per day. The following morning I drove to the hospital picked Paul up, drove back to the kids (Paul needed to drive 1.25 hours to the Tamworth airport where we picked up mum and she took over driving the RV for the next two days. We arrived at my sisters place around 7pm on 23rd December but got to see the glorious sunset along Cove Road and had 1 day to do the Christmas Shopping for EVERYONE. I had people going in one direction, people going in another direction and myself all over the place hoping to not forget anyone.
Why did I mention the disasters? Well, despite these absolute horrors, we are not scared to try again because some of our most wonderful moments together have been made while driving around Australia. We have driven from Brisbane to Sydney. We have driven around Tasmania. We have driven Between Brisbane and Adelaide multiple times and sometimes going through different Towns. We have driven all over South Australia. We have done a massive return drive from Adelaide to Ballarat, to Canberra, to Emerald Beach then finally home. We have planned every minute weeks in advance but then we have planned barely anything and left it all to the last minute, including booking accommodation on the way to the town once we realise Jack can't take anymore in that particular day.
I want to fill families with hope that this can be done, no matter what your obstacles are. If driving around Australia and exploring the wonderful towns in our country is on your bucket list, then do it. If you have small children, lots of children, children with special needs or anything else that you are using to fuel your fears and hold you back from experiencing a new life moment (whatever that may be), then I hope we can inspire you to just go for it and start planning.
I look forward to having you join us on our adventure
FREE GIVE AWAY
We will be buying local gifts in the towns we stop in and will be giving them all to one lucky winner who follows our adventure and enters the draw. But make sure you read the blog each day to find the day's code word. The code word for 16th December 2020 is CRAZY MAMMA. You can enter here https://form.jotform.com/203501785704857
KEEP UPDATED THROUGH EMAIL
Get our blog delivered direct to your inbox so you never miss a post. You will also receive any updates we send out via email. If you would like to be kept updated, you can register here https://form.jotform.com/203502023393847
Help us raise money for the Butterfly House (first of many) that is opening in 2021. We aim to raise $10 per kilometer that we travel on this adventure. We will post a running total in our daily blog... will you help us keep up with our daily total?
You can read about the plan for the Butterfly House here https://www.surveymonkey.com/r/DCLRL2Z While you are there, fill in the survey and tell us what you think of our plans.
You can donate here
JOIN AS A GENERAL MEMBER
We are looking for 20 people in each state and territory who would like to be a member of the team that helps launch Jack's Butterflies in their state/territory. If you are passionate about helping raise awareness and improve services and create a strong support network for families affected by a rare disease, you can sign up here. https://www.jacksbutterflies.com.au/become-a-member
Membership is still free this year and by joining this month, it will be carried over to the whole of 2021.
JOIN AS A RARE FAMILY
Do you have a child who has been diagnosed with a rare disease? Or a child who is so rare that they still don't have a diagnosis? Well, we are now accepting families in all states and territories within Australia to register with us. Follow the link to register your family today https://form.jotform.com/203502652211844
Free give away, if you sign up during December and January, we will be giving away 10 Scentsy Buddies and 10 Scentsy Butterfly Atrium Warmers that have been donated by Marylou Henry, who is a regular supporter of Jack's Butterflies.
OFFER A SUGGESTION
Do you live in one of the towns we will be traveling through and would like us to stop and have a look around? Do you have a business you would like us to check out? Do you have something you would like to add to our giveaway? We would love to hear your suggestions. https://form.jotform.com/203503265254852