Relocating for our medically complex child was never just about him. It was never just about Matthew.
Between having the idea and actually moving, was around 6 – 8 weeks.
Such a strange thing to happen, living in your big beautiful home that you once picked out the colours, tap ware and furnishings for. Then living in a 40 year old place with pink carpet.
I often wonder why it didn’t occur to us sooner.
In my free time that is.
We were staying at Ronald McDonald House near the Royal Children’s Hospital. I ran into another mum, she was following her child, who was running around nasal gastric tube flapping behind.
I stopped to chat “Where are you from?”
“Wallan.” She replied.
“Really? So are we.”
“We don’t live there though, we live here.”
I nodded, many of the residents of Ronald McDonald house are semi-permanent, long term occupants.
“Yeah, we just rented our house out.”
That caught my attention. “What?”
“Yep, just put it up for lease, the rental market there is really good.”
Wow. That had never crossed my mind. She gave me the name of her agent. Soon after this, Luke and I were scrolling the pages of Realestate.com.au.
The idea grew on us
Matthew spent 50% of his time in hospital, I think 90% of those visits were unplanned. We never knew when he would go in, or how long he would be there.
We had a system, Matthew would go in, we would spend the first few days, driving backwards and forwards depending on Luke’s work schedule. Then when we could tell whether this was a serious or long admission, we would call Ronald McDonald House and get a room.
It was easier on everyone if we were together at the end of the day. Or at least close by, as one of us would stay at the bedside with Matthew. But it gave us options. Especially as Mackenzie got bigger.
When it came time for discharge though, it took a bit of a toll. It was a massive process. We often didn’t know Matthew was leaving until the moment it was happening. We couldn’t plan for that either.
Our room at Ronald McDonald House would still be completely unpacked.
When you check out there you need to change all the sheets and towels. You used to have to wash the doona covers. Vacuum, sweep and mop. It wasn’t a big room granted, but on top of packing Matthew’s hospital room up, we then need to pack the whole family’s stuff up.
This job took hours, and I often had to do it on my own.
At peak times it also took an hour and a half to get home after all of that. Which was tricky for medications, feeds, and picking up the other two.
What about the other kids?
Shane’s friends from mother’s group had all started school that year, & with all of Matthew’s admissions, we never had time to organise play dates.
Mackenzie was only just old enough for daycare. She wasn’t old enough to have made friends of her own yet.
We did go to a local church which was so lovely and supportive, but again with Matthew’s admission we weren’t able to attend very often.
Luke and I talked about Shane heading to school the following year, would he go to school in Wallan or closer to the hospital?
We had 12 months until he would start, so we made a decision.
Trial the move for 12 months
If it worked for us we could enrol Shane in the local school. If we wanted to go back to Wallan we would enrol him there.
Luke was massively disappointed to move away from the beautiful estate we lived in, but we quickly calculated the savings that it would involve.
Fuel, tolls and meals. Even babysitting.
At that point we were very blessed to have my sister Jess living with us. She had just enrolled in nursing. She would be studying in Melbourne metro area anyway, so was happy to move closer.
The house we moved into didn’t compare at all to the house we built, but the reducing in stress and time apart could not be argued with.
The difference it made
It was massive. So much pressure lifted for me.
I didn’t have to do the daycare run at the crack of dawn to get into the hospital before the doctors did their rounds.
The house was well loved, the pressure of upkeep of our very own brand new house and the responsibility of maintenance and repairs went away.
I didn’t feel the need to clean it to show room standard. (I blame the polished tiles in our own home, unless they were spotless the floors looked filthy.)
We discovered after we moved that many financial planners advise renting in the area you want to live and investing in places with good rental return. We had done this by accident. Our home had become an investment and all repairs and maintenance had become tax deductions.
I stopped using tolls for every trip. I could go the long way and still be there in 25 minutes. If it was urgent or we needed an ambulance it was only 10 minutes to the hospital.
Sometimes, we would bring our car home and leave it there so we didn’t have to pay to keep it in the car park.
There was a tram and train nearby. Luke would ride and catch a train to work sometimes. Other times I would use the tram to pop home for dinner with Luke and the other two kids, help do bedtime, then jump on the tram back again.
Shane’s behaviour was affected by the move, but it had been effected by the upheaval too. With some time and attention, it settled.
We no longer had a church to call home, and finding one with all the uncertainty in our lives was very difficult. So part of our support network was no longer in constant contact.
One of the best decisions we made
Shane is settled into school here now. Mackenzie loves her daycare (which Shane also attended for 12 months.) Shane has friends in the neighbourhood.
I could do school pick-up and drop off and head back and forth from the hospital. We spent so much more time as a family. The kids spent less time with babysitters.
Luke and the kids came and went from the hospital easily on weekends and days off. It wasn’t the epic effort it once was.
When Matthew was given only a few months left to live, quality time became even more premium. We easily used the things we learnt for hospital cooking. Sometimes bringing the supplies from home.
We moved a second time a year later to find a place more suitable for disability access. Disability access wasn’t something we knew anything about when we first moved.
The house was actually smaller again, and no carpet anywhere which lightened my load again.
People often ask, “Will we move back?”
Shane is settled right now, for the first time since Matthew was born. We are a grieving family, we can’t make any changes that we don’t have too, at least not for a while.
We are happy here.