This morning I woke up feeling great. The house is almost sorted out, the packing is nearly done and the pile of washing is diminishing rapidly. So when I called Ronald McDonald House to confirm our room I was in a great mood. Until Louise said she couldn't help us.
It turns out, the family currently staying in the room that was meant to be ours isn't leaving. And the house is fully booked indefinitely. I was crying before I even hung up the phone. There is another place in Hobart that offers similar accommodation, so I called them straight away. The good news is that they have a room for us, but there's plenty of bad news to go along with it.
For a start, they don't do check-ins on weekends. So the earliest we can get a room with them is Monday. Ellie's pre-op is 9am Monday morning, so we need to pay for a hotel Sunday night, or leave home at 3am Monday morning. We don't have the money for a hotel. This new accommodation also isn't 100% covered by patient transport. We will need to pay $10 a night, upfront. The budget didn't cover that.
Then there's Sophie. She has been so excited to go back to the "clown house." She feels at home there, it's a safe place and she knows the staff. This new place will be different and scary, and I don't know how she'll handle that with everything else going on.
It's not only the practical points that are bugging me though. I was so sure that everything was going to work out, and now I don't know. I have a bad feeling. I made a plan in my mind, and personally I feel comfortable at the Ronald McDonald House too. I know my way around there. And now we'll be stuck somewhere that we're not familiar with, and I guess it just arrivistes my anxiety in an already stressful time.
I tried to make a pros and cons list, but it didn't help. Here's what I got:
PROS FOR JOHN OPIE HOUSE
- will be less crowded than a fully booked Ronald McDonald House
- across the road from the library, good for entertaining Sophie
CONS FOR JOHN OPIE HOUSE
- unfamiliar surroundings
- further from the hospital
- no parking nearby
- no supermarket nearby
- out of pocket expenses
- no children's play room
- no outdoor space
- lots of stairs
- not staffed 24/7
- very noisy of a night with traffic
Clearly the list was a bad idea.
But that wasn't the end of our bad day. Once we had organised a hotel (paid for by my incredible sister, thank you Bec), I called the John Opie House back, only to be told that to get the $10 a night rate, we would need an approved pairing transport scheme form. Ronald McDonald House don't need these forms, so we don't have one organised. I had to quickly call a social worker, and then the PTAS office in Burnie, and all that they can say is it MIGHT go through. Might. If if doesn't, we're looking at $67 a night for accommodation.
Throughout this whole journey I have tried my best to roll with the punches. I try to be upbeat and help other cleft parents as much as I can. I try to be a positive role model. And I know that Ellie will read this one day, and I want her to be proud of me. But some days are just crap. Some days I just want to throw in the towel and run away. This isn't what we signed up for.
No comments:
Post a Comment