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"You can't do it on your own" - the Glentworth family's advice for parents dealing with the shock of a Spinal Cord Impairment (SCI)

08/06/2021

You get the feeling the Glentworth family could get through anything together.

The down-to-earth family of five (Mark, Kathy, Jayden, Jazz and Zoe) from Palmerston North are a tight unit. They received the news all parents dread, when their 15-year-old son, Jayden, had suffered a suspected broken neck in a mountain bike accident. It was a moment of total shock, when time stood still.

The past six months have been a roller-coaster journey with many ups and downs. Hope and despair. Laughter and tears. Prayer and despondency. The one constant through it all – they have stuck together.

We recently met with Jayden’s parents, Mark and Kathy, to talk about the role parents play in helping a teenager through spinal cord impairment. The impact of the life-changing injury is still very raw, and hard to talk about, but they wanted to share their story to help others.

Jayden, Kathy and Mark

Jayden was 15 when he had his accident, what are your memories from that day?

Mark: He was training for an event and he had been dropped off at the mountain bike park during the day. There would usually be a number of phone calls from him about injuries or mechanicals. I was working when I received a phone call from Jayden’s phone, and it was the paramedic. He said there had been a crash; they had been called up there and the helicopter was en route. I have been in the NZ Police for 28 years, so I am used to being involved in traumatic situations, and I knew it was significant for him to be flown directly to Christchurch. Fortunately, I was working in Palmerston North so I could be with Jayden. We were flown directly to Christchurch and straight into emergency surgery. It was full capacity at Christchurch Hospital, due to the White Island event. His injury was a T12 burst fracture, and he had surgery within eight hours of the accident, which was pretty remarkable really.

As his parents, what did you think when you received that call?

Mark: Immediately, I thought how is the next day or next week going to look? How will the next 10 years look? It was that big unknown around about Jayden’s future, and the impact on him straight away. But, I realised I had to remain calm, focused and make good, sound decisions for Jayden immediately, and also for Kathy and the other family members.

Kathy: I suppose there was a bit of denial for me, as I am quite an optimist so, right from the start, I was thinking that he would be fine. Even though he had been flown to Christchurch - I suppose we are six months down the track now, it has been really hard, but I’m still hopeful that Jayden will recover some more. I suppose everyone deals with it in different ways, but I am very much a ‘full of hope’ person, but it’s been a hard ride that’s for sure.

How was the rehab process for both Jayden and yourselves, with the slow progress and keeping up hope?

Kathy: We had amazing support from friends. Lots of people flew down from Palmerston North to be with Jayden and to be with us. That was huge and the Spinal Trust was amazing. I actually ran my design business from their office when I was here. A staff member had just left, so I was able to work at his desk, which was amazing, as Jayden’s quite independent and he didn’t want Mark and I breathing down his neck all the time. He wanted a bit of space. So, when Mark was there, he was able to continue working for the Police in Christchurch, and I was able to run my design business from the Spinal Trust office, so that gave us a bit of breathing space and allowed Jayden to have some space as well.

Teenagers need space to process what has happened, so it would have been quite important for you to reach the right balance.

Mark: Well, your first instinct, as a parent, is that you want to be there 24/7, but Jayden needed to gain his confidence with the injury and to find his own approach and attitude. He had to do that himself and I think it will be a very long journey and one I think he’s still doing now.

But, having the Trust there to help navigate those first few weeks or even the first few months was just incredible, because it’s extremely overwhelming. When you first go to the unit, it’s the place that is going to make or break Jayden’s mobility future. But when you’re there, it’s overwhelming, because there’s such a big rehab team and, when you’ve got someone like members of the Trust just to help explain how everything works and support you through it, and be here when you need questions answered, it was a game-changer and made a great difference to us.

It was incredible, actually, and I think realising that, no matter how capable you think you are as parents, you cannot navigate this by yourself, you actually, need to allow yourself to get advice, help and support from whoever is the right group/people to help you, it’s such an unknown, and nothing prepares you for the practical issues that arise, especially navigating the emotional stress, as parents.

How did you deal with the stress during the process?

Kathy: I think our faith played a big part in that. As Christians we leaned into our faith a lot, and we have friends in Christchurch, too, who were very supportive in that regard. So, a lot of prayers and a lot of people praying for us and Jayden played a big part in how we coped.

Mark: We would have been backward if we hadn’t leaned into our faith like we had, I don’t know where we would be; I don’t know how we would be now. It’s been a game-changer.

Every time I went into Jayden’s room over those three months, I just thought whatever you say has got to be encouraging and positive for him. And that was quite difficult and tiring, but I think that it was really important just to let him know he wasn’t on his own, just as we weren’t on our own.

And Burwood is such a special place. People have said ‘it’s harder to leave there than to arrive’ and I believe that now. You have this incredibly caring team around you where their whole mission is to support and, since we’ve returned to Palmerston North, that team of support has changed, but the mission is the same. They are still wrapping around us with practical help and care, and a huge amount of support and it’s been great.

Kathy: It also made us think about all the other parents and families who are going through hard times. It really builds an amazing empathy to think about people around us, because we might not even know what they are going through. As a family, this has been our first big ordeal to cope with, so it has made us think about those around us who are going through similar or worse. It’s not just us going through this; other people do too.

Travis cafe group

Has Jayden's crash given you some perspective on other parts of your life?

Kathy: It has made us focus on the positives because, there are so many negatives, that you know you can get a bit swallowed up by it, so you have to make a daily mental note to self to be grateful and thankful for what is good, and to be hopeful because that, I think, it keeps you on the up.

Mark: We know we have got so much to be thankful for. Although there is still uncertainty about Jayden’s mobility future, we know we are fortunate to have him as we do, as it could have been a lot worse and it’s not, and we are fortunate. Jayden’s well aware of that too.

Do you have any standout memories of people who helped you at Burwood?

Kathy: Tom, the psychologist; what a cool dude, he was so great. He would really listen and he had a world of experience and he connected with all of us individually. Our lovely social worker, Jeanette, she was amazing. Such incredible professionals. Wayne, who runs the accommodation, he was great. So amazing. Everyone was so lovely, and supportive and sensitive. What a place!

Mark: We got to know and we have maintained good contact with Matt, who broke his neck on Boxing Day, when he was 42. He’s such a special person to us and Jayden now. Matt and Jay, they share a lot. Jayden was able to be with Matt in his journey, and he’s doing really well physically. He came in with a broken neck and has had made an amazing recovery. They have got a really special friendship and we’ve maintained a lot of contact with them since we left - he made things much easier for Jayden in a situation where there was uncertainty and sadness.

Also, Hans really helped us to navigate some really rocky times. He will forever be a very special part of Jayden’s journey but for me - Matt, and the other patients, made a big difference. We were privileged to be part of their injury journey, even just for a short period of time.

What are some of Jayden's passions and interests, six months on?

Mark: It is still early days, but he’s desperate to get out on his bike again in whatever shape or form it takes. The support of his friends - his youth group friends, his school friends, his riding friends - has been incredible. He’s just so happy to be out and about with them. He had a sleep-over recently with a mate, one of his best friends - that’s his first sleepover away from home, and it was great, it worked really well.

Jayden’s passion is just being more independent around his friends; that’s his drive at the moment. He just loves getting out and about, in the mix with the friends he had pre-accident. He’s starting to do quite a bit of mountain bike photography now. We are lucky enough to have good camera gear, so Jayden goes down and takes some shots of the guys doing their biking but, in the same breath, it’s quite hard for him to do, because he was the one riding. However, he still wants to be heavily involved, and photography is one way he can do that. He used to play the drums at church, but he can’t do that now, so he’s learning the bass guitar because he can do that. He’s finding his confidence in different things.

Seeing his strength and determination, has that inspired you?

Mark: He is at quite an interesting stage, because he came back to Lockdown. He was so hungry to get back home, to get back into school, or just establishing his new normal. Unfortunately, when he came back, we were in Lockdown so the timing wasn’t ideal. It’s only been about three weeks since he’s been back to school. He’s at a boys’ school with 1700 students and he’s the only one in a wheelchair, but he was keen to go, he just wants to get back into the school environment. I’ve found that it is really cool that he’s keen to do that. I think that’s great. That’s the big thing that I’ve noticed. He’s happy to be out and about and be seen in his chair. This hasn’t been a big issue for him, which is cool.

What are some of the ways you've helped Jayden stay positive and win the mental battle?

Kathy: The team here have been very helpful - my children, the physio and his Occupational Therapist. I think Jayden needs more than just us. I mean his sisters have been amazing; Jazz and Zoe are so encouraging and we have other close friends of the family, his friends Connor and Josh. It’s very much a team which is encouraging him in his mental battle. Because, at the age of 16, young people are breaking away from their parents, and trying to be more independent and making up their own mind up, so having really good, positive input from other family members and close friends has been key. And the youth leader and his youth group friends - just those really good positive messages - that there is a good plan for his life and it will be all right. His psychologist has been telling him that and telling us that as well, that he will be okay. Because, sometimes, worry becomes too much, it’s a huge thing and takes up your head space, so we’re just trying to dispel that worry with good positivity.

Mark: Also giving Jayden a certain amount of control over his decision making about what happens during the day. Because, from what I can see, what he can actually have control over has totally changed. There are a huge amount of restrictions, so we’re just trying to stay positive around some of that decision making. Jayden has a lot to learn, about his confidence with the injury so, to give him control over things which, in the past, as parents, we might have said “This is what we’re going to do”, we are giving him more options so he can decide.

Jayden, Jazz and Zoe

What advice would you offer to parents at the start of their journey with an SCI in the family?

Kathy: Look after yourself. Mark and I have both stuck to our exercise routines – Mark with his biking, and I have carried on running and going to boot-camp. Staying healthy is important. It has also been vital to maintain our good friendship network. The psychologist made the point that the house should not just rotate around Jayden. We have two girls as well, and the advice was to maintain as much normalcy in our lives as we can. To be honest, this is hard, but we are taking positive steps to manage that. Even though we are at home, Jayden has two or three appointments a day as well as school, so it can get a bit much, but we have tried to maintain the routines from before the accident.

Mark: It’s a hard question to answer. My main advice is to accept the help that is on offer. You can’t do this on your own. It’s an injury that is so far-reaching, it affects everything. It affects everything from your emotions to practical things like house modifications. You just have to accept the advice and the help that is available. When there is so much happening, you can’t physically process it all. Find people who you think will give sound advice, and stay in touch with them. The psychologists said to me early on “don’t make any big changes”. With my job, I travel a lot, but the psychologist said if you make changes to something that you really enjoy and value, then there is guilt – “You are changing because of my injury.” Just wait and see how life plays out. You are not on your own.