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A brave new world


Published in the ACD Tas. PEPTalk magazine September 2018 – The Hill Report

As usual I wrote my first draft of this report a while ago and gave myself some time to change it before sending it off to those clever editors of PEPTalk mag.

Recently, my husband Michael, left me to experience life as a single parent and journeyed over to the Big Island (that’s the mainland of Australia for those reading this in other parts of the world) to represent Tasmania in the Seniors ten pin bowling completion. Unlike me, my gorgeous husband, is very good at sport and particularly bowling and has in the past managed to bowl the perfect game of ten pin (a score of 300) on 3 separate occasions.

The reason I kept changing my mind about the report is that, much happened while Michael was away.

It was 2am Monday morning, and Matthew had come down with a nasty cold. He was in the recliner because he couldn’t sleep lying flat in bed with a clogged up head and had dozed off in the lounge room. I had the music channel softly playing in the background and the dog lying at my feet. All was well at that moment listening to one of my children snoring next to me and the other one at the end of the hallway (Eliza is going to kill me when she reads this!).

I started planning in my mind. I knew that he’d be staying at home for the next few days. I’d need to get three different carers in tomorrow so that I could go to work and cancel the following two days of appointments so that I could be home with him. I started time tabling. I would be home until 9am when Eliza would step in for me until 11am, then Nan would pop in and take over until 3pm, when a support staff person will arrive for their usual 2 hour shift.

This is the norm for us when my lad is ill, it becomes a juggling act.

I was looking at Matthew lying next to me as he snuffled and snored as he tried to breathe and remembering all the times over the years when both kids had been ill and needed to stay at home. The juggling is all part of being a working family with little kids but this doesn’t stop when you have an adult son or daughter with disability who require someone always to be present.

I went back to work when Matthew was 3 months old. I worked nights and weekends so that when I was at work Michael was at home with the baby. This worked well unless Matthew was sick or needed to attend a number of appointments, but in the main we managed okay. Then we decided to be brave and have another baby, yep, that tipped the balance didn’t it!

Along came Miss Eliza Mary who thankfully was an easy baby and child; sleeping through most nights from about 4 weeks old, eating whenever and whatever you fed her with no arguments, and being pretty happy about 90% of the time. Even so, when Matthew was ill, had appointments, or needed to go to Melbourne for operations, the juggling act became masterful.

In my last article I reported that I had made a number of big decisions in my life about the need to consider myself. Here I was again, sitting in my lounge room, reflecting and thinking about the next stage of letting go.

A couple of months ago we had commenced discussions with an organisation with the view of Matthew moving out of the family home and into a supported living situation. It has always been the long term goal for us as a family, to support Matthew to develop his independence and increase his confidence in preparation for flying away from the family nest. As I write this I have pictures in my mind of a younger Matthew who needed me to help with most things in his day. The truth is though, he has grown into a very independent and determined young man with the ability and desire to 

face the world on his own and work towards achieving the goals he sets for himself. Yes, he will need some assistance but he is prepared to attempt most things and approaches life in a very positive way.

There are practical things to get on with during the next few months to prepare; furnishing for a new bedroom, putting together all the necessary information for the support organisation and a whole range of other things. It’s the emotional things that I’m worried about that may trip me up.

I had the first meeting with a Support Coordinator and I was the picture of professionalism; answering all questions, and taking along all the necessary information. I left the meeting feeling very positive and confident that this was going to be the best thing since sliced bread (for Matthew) then on Friday night while Matty slept soundly next to me and hubby was interstate enjoying his bowling, I broke down – a major meltdown. I am not a pretty crier (if there is such a thing); it was streaming tears and great gulping sobs that needed lots of tissues.

For me as a mum the need to be in control has been important. Some would say a little too important but all I’ve ever wanted for my children is a positive, safe and happy future. When faced suddenly with the reality of something that I have been planning for, the emotions kicked in and I was sitting in the lounge room remembering some of the more stressful moments we had with Matthew as he was growing up. I was remembering all of the surgeries, the falls, the seizures, the visits to Doctors, Physios, Speech therapists, OT’s, other specialists, and the activities we had cancelled when things like illness got in the way.

Suddenly I was full of negativity so I got up and paced around the house. My bubbly daughter got up while this was going on and was concerned so we sat down for a chat. Her response to me made me laugh and then cry again but it was so very typical of our family that it had me starting to be positive again.

Eliza’s response went something like this… “Honestly mum stop moaning. Have either of us kids got anything to whinge about? Nope, we’ve been spoilt, you and Dad have always made sure we tried lots of new things. You haven’t killed us or anything, we’re both still breathing. So c’mon Mum stop being a wuss.” Then she said “nigh night, love you. I’m off to bed”.

Yes, very useful words from my very wise 22 year old daughter. I had to sit down and think about this. I needed to believe that Matthew was ready, to trust that that we had given him

the strength and the skills to move forward without us needing to hold his hand every step of the way.

Eliza is a different kettle of fish all together; she moved out of home for a few months before returning. Her reason is a very practical one; “have you seen the cost of good cheese Mum? Well, it’s all your fault for bringing me up only eating good cheese. I can’t afford good cheese when I’m living away from home so I’m back for good”.

So folks, over the next few months I’m expecting a lot of emotional highs and lows. I think that I will be very positive about the process of Matthew moving out but I expect that I’ll spend a bit of time curled up into a foetal positon and crying my eyes out. Facing the reality of having my 3 pounds 10 ounces premmie son stand before me as a man and say, “Mum, I’m getting ready to move out” scares the living hell out of me. Will Michael and I survive this? Well time will tell, and that will be a whole new chapter in our story.

Who knows, it may even work out well. We may have our first in a long time spontaneous moments, where we pop out for a coffee together. Maybe we’ll plan a few small holidays away with just the two of us. We may even start to have romantic dinners at fancy restaurants. Yeah right…. but I think can convince him to enjoy camping

It’s a brave new world for the Hill family. I promise to keep you posted. Be well.  Sheree Hill.