Behind The Wish - Paul and Lyn Shegog

Paul: The whole heath scare came after I had been feeling unwell for quite a while with headaches and my judgement was off; knocking benches and leaving doors open.

I would put things down and then couldn’t find them again.

Lyn: I remember he went to the supermarket and he came back and said, ‘What did I go for?’ and then he hit the letter-box with the car. Finally, he came to me and said, ‘Where’s the Q on the keyboard?’.

P: We went to the GP and got an ultrasound and MRI and CT scan, and they found a meningioma (brain tumour). That was on the Tuesday and the following Monday 30 November 2020, I was in the hospital for the operation. It just shows you how things in life can change so quickly. Since the operation I now feel 100 per cent. No side effects and now getting on with life.

I have given work away because you don’t know what stress does to you. I thought 'this is a wake-up call' and I was old enough to retire. Three or four weeks after retiring you can feel that you don’t have anxiety anymore.

L: The diagnosis happened so quickly. For me, I didn’t like to dwell on it. I am not the kind of person who will think the worst.

Don’t get me wrong I was thinking ‘oh my God’ but we went from the GP to the surgeon who put up the scans on the screen and said, "This is why you have been having trouble," and you could see it, it was the size of a mandarin.

He had the operation and it turned out to be benign, which was a relief.

Lyn: I probably had more of a shock when Paul was diagnosed with prostate cancer. For me I was more angry at God right then, saying ‘you’ve just taken our two beautiful children’.

The loss of our two children, Emma and Brett, is probably still there. It’s been a long time but we still have our moments and that’s where Make-A-Wish comes in.

Emma was diagnosed first. We knew about a month after she was born there was something wrong but it took them a while to find out what it was. They finally diagnosed her with mitochondrial myopathy, which is rare and means it affects their mitochondrial cells. Their cells were going to get weaker as they got older.

Emma had lots of seizures. It was the same diagnosis for Brett but he presented pretty well the same, in that he lost muscles and they both relied more on their wheelchairs as they got older.

We pretty much treated them as normal children and got them to achieve as much as we could in the time we had them. It was 2003 and 2004 when they passed away.

I saw an advert from Make-A-Wish. I was 24/7 around the clock being there for Brett and Emma’s seizures and once they were in school, I thought I needed to do something for myself.

I saw the ad calling for volunteers and thought, ‘I could do this’, not even thinking it was ever going to relate to me. I never thought our two kids would be able to have wishes. When they were diagnosed we didn’t look at death. We didn’t think that. It was only further in their lives we were told it would be short, and we would see progressive deterioration, which we did.

I wanted to volunteer, I wanted to do something. And while the kids were alive, Paul was sort of like the silent treasurer for the branch. And Make-A-Wish head office knew this. I think because of that, when the kids passed away, Make-A-Wish were like a family.

And we still get on so well with everybody. Sylvia Rouleston was president at the time and she was amazing. And they surrounded us with love and support in making that part of our lives easier.

When the chance for a wish came up, that was really tricky because I felt that if I put my hand up, that meant I knew my child was going to pass away. We used to say "life-threatening" (in Make-A-Wish) and put more emphasis on it than we do now. But then with some beautiful support people around us, I said, "Yes they do deserve a wish, and we could benefit from it."

Paul: And the memories from Emma’s wish are still there to look back on and say, ‘wow’.

L: We can say to families now that the memories are great to hang onto. We don’t let families know that we have lost two children. Of course if that comes out, that’s fine but we are not going to initiate it.

There’s a couple of wishes that we have been on where children haven’t got long and I think, ‘Can I contain myself?'. There are some times where you struggle. You do understand where parents are at, you understand the parents that are hesitant at saying yes to a wish because they are apprehensive. They are probably apprehensive because they might feel they are admitting the end of their child’s life is near. That’s a big step.

L: Initially we didn’t feel it was right to have two wish trips for our kids. But then someone said to me, "But what if something happens to Brett, will you regret that you never let him have his wish?" So straight away I thought, 'Yes, they should have their own wish trips.'

P: As it turned out, Emma probably enjoyed going on Brett’s wish more. Emma wasn’t well on her trip. So, it was a win-win.

L: Emma was having lots of seizures on her trip.

And for Paul and I, the impact of having wishes is the cherished memories. And seeing the dedication of the people who make those wishes come true: the volunteers.

The pain doesn’t go away but you can smile because you can remember things, like their wishes. It’s the birthdays, Christmas Day, and those occasions when you feel the emotion. You do see other wish kids grow up, and you think of what could have been.

L: Sometimes you drive home from a wish family and you do stop and shed a tear and say, ‘That could have been Brett or that could have been Emma’. And people that I have spoken to have told me that’s normal. Some people lock it away and I don’t know how you could do it.

Picture: Paul (left) and Lyn (middle) with Wish kid Surjen whose 2014 wish was to meet Prime Minister Tony Abbott.

Paul: The people in the branch, we are fortunate we can share our journey with them.

L: When we were organising the gala, we had a little meeting. And they talked about birthday wishes and the birthdays just set me right off. I walked off and said, ‘Why do we have to have that?’. It was just me. My kids had missed out on birthdays, so why should others have birthdays? That was a personal thing. But I worked through it, we were celebrating others’ birthdays. It just triggered an emotional reaction.

And this is where the branch has been exceptional. Robyn (Moore) twigged, then (president) Cam Scott rang us. It was incredible how they understood. That shows you that we are tuned into each other.

We really do think of each other. Cam has been a great leader.

The branch is full of dedicated volunteers. If you want to be a volunteer for Make-A-Wish you have to be compassionate, want to work with children and families, and want to create that magic. You must know how to work technology, that’s been my only thorn! But Jo (Hazell) will say, "Don’t worry, Lyn. I will come and do it."

P: People in the community can see what we are doing and want to be involved.

L: Since we have had this gala, and since we have people like Cameron and Romany working on social media, they have been a breath of fresh air. Everyone has got something to give. They are all enthusiastic.

Picture: Paul and Lyn were inducted into the Make-A-Wish Hall Of Fame in 2014.

Lyn: I have now been with Make-A-Wish about 35 years. They acknowledged the anniversary. It was an ambush at my place. I thought it was time we all got together, with our partners, for a social afternoon tea and, as it turned out, it was more than an afternoon tea. It was the first time I was speechless. I didn’t twig until I got asked to come up to the front.

With Make-A-Wish, I think sometimes you’re not feeling up to it, you think, ‘No I don’t want to,’ but then you get there to do the wish and you think, ‘This was so worth every minute’. It’s been the overall experience of doing the wishes. Doing the gala was a great night. It’s all about doing the wishes and seeing their faces.

P: That’s why we are there. To make it the best experience possible for our kids. When you see their faces, you get a bit emotional and say, ‘This is why we are here, to make a difference’.

L: It doesn’t matter what the wish is, how big or small the child’s wish; it’s knowing that we have captured that and done that.

The new volunteers are great. They come in with new ideas. They recharge you.

L: We have got an empty house, empty nest. We are a bit different to others. While we can, we will keep doing it.

We are so lucky we have had good leadership and someone like Robyn who is so positive. From them right to the new ones who have come along, it works well.

P: We have to enjoy every second. Make sure we enjoy every moment. I used to put things off but not anymore.

L: Paul is so much more relaxed now. Paul would never say, ‘Yeah that’s a really good idea’, instead he would analyse it till we die. After his operation, he finally got it, that we live for the now.