real life

With carers and support staff cancelled, it's up to Valerie and Robin to keep their son alive.

It kept niggling at me.

Every time we spoke on the phone, she kept asking the same thing: “Are you sure you still want us to come?”

“Of course,” I’d say, “why wouldn’t I?” It was Nate’s 30th birthday, a day we never thought we’d see; close to 100 people were coming from all over Australia, from the USA.

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Then, in the last call, I asked her – did she not want to travel that far? Was she worried about this virus?

Here in Australia, it wasn’t an issue yet. She finally said, “No-one is going to cancel and let you down, but you have to decide whether to cancel the party.”

So we set a meeting with Nate’s GP. He would probably tell us that we were overreacting. He knew we were planning a grand party, but as soon as we asked if we should cancel it, he looked at us as if we had two heads.

“Of course,” he said, “you have to cancel. If Nathan were to catch this virus, it would be dire for him. There are no treatments, cures or vaccines.”

So it finally dawned on us. The party was not the issue, it was our circle of people. We needed to isolate, immediately, and cancel the party and all Nathan’s programs and support staff.

You see, Nathan has cerebral palsy. He also has epilepsy and a compromised respiratory system. He requires 24/7 care.

With no carers or support staff, all his needs would be met by me and my husband. I started to cry as I realised the change of life we were facing. The responsibility of making sure Nathan was safe was overwhelming. How were we going to do this?

I called her – my sister Cathy. I told her that Nate’s GP has told us to cancel the party, and it would probably be best if she and the rest of the family cancelled their trip. I was heartbroken, so was she.

The next day one of Nate’s carers quit. She was in tears; she didn’t want to be the person to infect Nate, and she couldn’t work with him for the time being.

We knew we had to act now.

I made a list of groceries, of Nate’s medications, wine (of course wine). I made two copies, gave one to my husband Robin, and we went to two different supermarkets. I then ordered all Nate’s continence products and Nutricia for his feeding tube.

We told Nathan’s other carers that we were going to cancel his care for the immediate future. We called his exercise physiologist, trainer, masseur and gym buddy and cancelled all his programs. It was early March.

To try and gain some sanity, I began walking 10kms a day. For the first two weeks, I cried on every one of these walks. I couldn’t see a way out. I am a problem solver, but this virus was a problem I couldn’t solve; it was out of my control.

No one else had started to isolate yet. I was watching everyone else living a normal existence, while I was living in fear. I needed a plan.

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Nathan requires physiotherapy twice a day. His physio usually comes twice a week, and every day when he is not well.

She recommended that we purchase an electronic stethoscope. We could send her his pulmonary sounds, she would listen to them, and interpret his state.

The stethescope came. I tried sending the recordings, but she couldn’t hear them. I called the maker of the stethoscope and told them of my dilemma. The agent told me that for the physio to hear Nate’s sounds, she needed an electronic stethoscope as well. I started to shake; these stethoscopes are not cheap. But I needed another one, because our biggest problem is Nate’s lungs.

Then, out of the blue, the agent said, “How about I lend you one? This world is crazy enough, and the last thing you need is to worry about this.”

It was so humbling; such kindness from an absolute stranger. I pulled myself together – we were going to make it through.

The stethoscope was delivered the next day. It took a week of working with the physio for us to understand how to use it, but we finally got there.

Two weeks ago, I was working with the caterer on Nate’s party, talking to the event stylist, talking about the band list, planning the holiday my family was going to have when they came from the US. How could things have changed so fast?

It’s now twelve weeks in, and we’re living a real-life version of the movie Groundhog Day. We have a routine with Nathan, and that takes up most of our time. For sanity, I walk my 10kms every day, and Robin gardens and writes.

We have set up Nate’s programs via FaceTime. He has physio three times a week; I take Nate’s readings, and send them to the physio; she listens, calls in, watches us work on Nate, and advises us on our technique.

Nate also has three sessions a week with his exercise physiologist, again through FaceTime. We are her hands, and Nate gets his stretches and exercise routines as if he was with her.

One of our carers picks up our packages from the post office, medications for Nathan and other supplies, and delivers them to our home. The grocery store delivers direct. I am getting some control back.

We are all well, and we can now see that we are in this together. We can keep Nathan well under these conditions. He may still get sick, but it will not be from COVID-19. That’s the best we can do.

We have re-examined our priorities. We all have a story, we are all suffering loss and stress, but we know what’s important in life, and we know to look after each other, to slow down.

We’ll have that party, we’ll have the family, friends and support people to help celebrate Nate’s life. It just won’t be this year. And that’s ok.

I understand now that we’ll get to the other side. Life will probably be different, but is that such a bad thing? I don’t think so, as long as we all look after each other.

Valerie Runyan is has spent her career as a senior executive in the university sector developing and managing high performing teams. Valerie’s passion is working with her son to achieve his potential. Nathan has travelled the world, played with orangutans in Borneo, attended a wedding in Costa Rica and skied at Falls Creek. They see no limits and nothing will stop them.

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