We Cannot Walk this Journey Alone

The EncouragerOne of the maybe less-known ministries of Elevate is our Emmanuel Support Group, currently run by Penny and Nigel Shivas. This Auckland couple in some circles may be better known as “the parents of Olivia and Benjamin”. Emmanuel Support seeks to give spiritual, emotional and practical support to parents and families of a child, from infant to adulthood, with any disability. Nigel and Penny have an understanding of the stress and pressure that occurs when you have a child with a disability. When they found out both their children had a physical disability there was a lot of unknown, as is the case for most parents. Penny says, “I was having a lot of questions about the unknown and what the future looked like for us. I couldn’t find anyone to talk to.”

They initially got involved in Emmanuel Support through a connection at church. “A lady from the church we were attending at the time, who was involved with Christian Ministries for the Disabled, told us about a meeting. We went and met Di Willis [one of the founders of Elevate]. She told us about Emmanuel Support.” Penny says “We then attended a parent’s retreat and really bonded with other parents there. There was a degree of nervousness at the start. However, we shared stories and started to appreciate each other. And we have been great friends ever since.” Often the bulk of child care and appointments may be the responsibility of one parent more than the other due to practicality of work commitments. This can mean that each couple’s experience of parenting is different, especially for parents of a child with a disability. Nigel says that, “As fathers of children with disabilities, we don’t always see the full extent of what our wives go through. Due to work, we are not always there for key moments of our child’s development such as their first day at kindy or first day at school. We are not always able to attend all the meetings with doctors, physio’s or occupational therapists. Many of these things can turn out to be watershed moments that wives carry unexpectedly alone at that moment. I was not there for my daughter’s first day at school. And as it turned out, it had a major impact on my wife. She saw all the other ‘normal’ children running around and our daughter not able to keep up or join in. These experiences build up and can then take a toll on relationships unexpectantly.’’

Nigel admits, “When we first got involved in Emmanuel Support, it was with some nervousness on my part. I had a wife that desperately needed more support and friendships from others in similar situations. But as men, we often feel if we can’t fix it ourselves, we are lacking. However, as a husband and parent to children with disabilities, I have learnt we cannot walk this journey alone. And to some extent I found as a husband, I needed to let go of trying to meet all these emotional needs by myself and put it out there that we needed help. Nothing prepares us for a child with a disability and for any relationship under strain we need others in our lives. It’s often others who have walked the same journey that are in the best place to ‘be there’ at the right time. Emmanuel Support was a really big part of that support we both needed at the time and still do.”

There are so many needs for parents of children with disabilities. But Nigel shares that both of them have found that “sometimes, what you really need, is just a listening ear from others who are in your same space. Someone who has lived the same experience being a special needs parent. Someone to pray with and lift our challenges before God. And Emmanuel Support provides that. We don’t have the resources to provide financial or physical help as such. However, we are a group that cares and listens. Just as a by-product of that friendship, people often find out about other agencies that can help. One of our Mums, Dorothy is great for that!”

Emmanuel Support was set up largely to provide opportunities for parents to get together and share freely without fear of judgment. As well as help families come to terms with grief, deal with feelings of isolation and loneliness, and find wholeness in Jesus Christ. “We do that through activities such as retreats and catchups,” says Penny.

“Although it’s been challenging with Covid, we try to run 3 retreats a year. One for parents, one for the women and another one for the men. We hold a children’s Christmas party and Parents’ Christmas dinner. During the lockdowns we have been having weekly Zoom calls.”

Those retreat weekends have been very successful. “At times, parents really need a break from the children they care for, to recharge their strength. At retreats, they can get away without having to do the day-to-day routine. This also allows connecting with a group of parents going through the same scenarios. Parents are able also to share without being judged. Emmanuel Support creates opportunities for networking with other parents that might have been through the same experiences.”

The next retreat is booked for the Easter Weekend, at the usual venue Peacemakers in Parakai (50km north of Auckland). If you are interested in finding out more about Emmanuel Support, please contact Nigel and Penny. All activities are communicated through newsletters, sign up by scanning the QR code below. “With the support of other parents, we become a bigger family, understanding and supporting each other’s journey.”

emmanuelsupport@elevatecdt.org.nz

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Do Not be Ashamed of the Gospel

“For this reason I remind you to fan into flame the gift of God, which is in you through the laying on of my hands. For the Spirit God gave us does not make us timid, but gives us power, love and self-discipline. So do not be ashamed of the testimony about our Lord or of me his prisoner. Rather, join with me in suffering for the gospel, by the power of God. He has saved us and called us to a holy life—not because of anything we have done but because of his own purpose and grace. This grace was given us in Christ Jesus before the beginning of time” 2 Timothy 1:6-9 (NIV)

The Encourager

Paul suffered so much and still he’s able to say ‘No, don’t be afraid to share the Gospel, remember what God has done for us.’ Christ died for us! So, we shouldn’t be ashamed of the gift that God has given us. Here in New Zealand, we don’t suffer for the Gospel as much as some who live in other parts of the world. So, we have less excuse to hide away and be fearful. At the end of the verse, it says God called Paul to be a preacher. God might not call you to be a preacher, but He calls you to be His hands and His feet. He will use you no matter your ability.

Kim Clark

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Why would I be ashamed of exciting news? Think about it. We would not be ashamed to tell people that we’ve achieved something or something exciting has happened. We would be quick to tell people. When I got my job at Elevate, I was so excited! I told all my friends and family. I put a post on Facebook. I even wrote an article about it. But we aren’t always as enthusiastic about the Gospel and our relationship with Christ. We may mention that we’re a Christian or go to church, but do we share about salvation, Christ’s death and resurrection, or the transformation in our lives?

Sharing our testimony with others is powerful. It can be an invitation for people to know Christ and start a relationship with Him. As Paul says in Romans 10:13-15, how can they believe if they have not heard. We need to tell people about the Gospel in order for them to believe. We can’t afford to be afraid of sharing the Gospel and telling our testimonies. Take courage, use your gifts and share the Gospel.

 

 

Manuele Teofilo

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A sound mind is knowing when a storm or problem comes my way, I am ready for it. Not because of me but because my God is for me. The Bible says that if God is for me, or for you, who can be against me. So, people take that and apply that into your life. Whatever situation, problem or storm that comes your way God is for you. So have no fear. Don’t fear the world or what’s happening around you.

Gods’ promises are yes and amen. So, when God says I’ll give you a spirit of power, love and a sound mind, then glorify and say, ‘Yes Lord, please, I receive that’. But to have that you have got to want it. You know it’s like serving God not because you have to but serving God because you want to. If you really want what God’s applying to our life, just open your heart, open your hand and say Lord I receive that.

Prayer: Lord, I thank you for this reminder that your spirit in us gives us courage, love, and a sound mind. You give us the strength and the power to share the Gospel. That’s what you have called us to. Help us to be courageous and enthusiastic about your Word. Help us to tell our friends, family, workmates and those we meet about you. To you be all the glory. In Jesus name, amen.

Lani Va’a

 

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The Value of Inclusive Christian Camping

The Encourager

My journey with inclusive Christian camping began in Australia back in late 2007. I had finished school and wasn’t sure what I wanted to do. Eventually my Mum saw an ad seeking cooks for a local Christian campsite – no experience needed. I enjoyed cooking, so, I applied. A week or so later I went in for an interview and hours later I was offered the job!

Every Autumn and Spring this campsite ran Camp David: a 5-day camp for adults with intellectual disabilities. I hadn’t worked with people with disabilities before, so I felt quite nervous before the first camp… and then I met the campers. By the end of the week, I was in love with all of them and saw what a blessing that camp was for both them and the camp helpers. Camp David became a highlight of my year!

I worked at that campsite for 5 years in various roles. Over that time I learnt the need for people with disabilities to experience the benefits of camp: the connections, the fellowship, and adventure-based activities; activities they would rarely do in everyday life.

In 2011 an opportunity arose that would change my life forever: Christian Venues Association Australia (CVA) and Christian Camping New Zealand (CCNZ), alongside Christian Camping International Canada (CCI/Canada) planned a 2 week study tour of 26 campsites in Canada. Part of the tour included Campfire Circle. Campfire Circle (formally Camp Ooch) provides camps for children and families affected by childhood cancer. Their facilities include all the typical camp activities that you would expect to see, but with some extraordinary additions, including a hospital wing so kids could receive chemotherapy during camp. But the one thing that stood out most to me was seeing this multi-levelled high ropes course with a wheelchair ramp towering over us leading right up to the start of the first level, some 10m above the ground! All the obstacles on that level were accessible to wheelchair users. Since then I have dreamed of seeing something similar in Australia and now New Zealand.

One member of our group invited me to come to New Zealand to visit a large weekend camp for people with disabilities: Elevate National Camp. Did I mention that the trip to Canada was life changing? Well not only did I meet the famous Di Willis, get introduced to the amazing work of Elevate (then CMWDT), celebrate their 30th anniversary and became enamoured by Totara Springs Christian Centre. That weekend was also when I first met my now-husband, Mark – talk about God’s blessings!

In 2013 I moved to New Zealand to work at Totara Springs Christian Centre as an activity instructor and host (which involved hosting Elevate’s Joy Ministries camp and co-hosting National Camp). In 2019 I completed my degree in Occupational Therapy (OT) through Otago Polytechnic (of which I enrolled in largely due to a very lengthy and persuasive discussion about OT with Kirsty Armitage at a previous National Camp). Although I no longer work at a camp, I’ve stayed heavily connected to the ministry through my husband (those who have been to National camp might remember him as ‘Mork’), who continues to work full-time in Christian camping, now in Nelson.

Over the years I’ve seen and heard many stories about the impact that camp has on people. Opportunities to be challenged and try new things increased campers’ self-confidence. The intense nature and intentional community of camp created deep and meaningful relationships. Camp provided people with the opportunity to re-connect with nature, break away from routines and offered rest and rejuvenation. Christian camps are places where people learn about and draw closer to God in a way that very few other types of ministries can provide. However, I’ve also become aware that people with disabilities are missing out on these amazing life-changing opportunities.


As you may know, approximately 24% of New Zealand’s population has a disability (www.stats.govt.nz). However, this is not often reflected in our Christian camps or churches. Although this is not an issue isolated to Christian communities (demonstrated by the findings that children with disabilities are less likely to participate in any social event) (www.odi.govt.nz), it should be seen as a red flag alerting us as Christians to a very real concern: people are missing out on hearing the gospel and fellowship.

In 2020 I enrolled in a masters of Occupational Therapy and proceeded onto my thesis. Delving into the literature, reading about the importance of healthy risk-taking and adventure, learning of the benefits of including young people with disabilities within mainstream social activities, and God’s desire for the church to be one body, has strengthened my conviction on the value of inclusive Christian camping. Offering the option of attending a camp including peers with and without disabilities not only provides the above benefits of camp, but also helps facilitate genuine relationships and develops a sense of normalcy for young people in interacting and making friends with people who are not like themselves. This helps decrease the ‘us and them’ divide that historical segregation has contributed to. This in turn will mean these young people, when adults, will have greater influence upon our world, transforming Christian communities until inclusion is the norm which, hopefully, will then transform churches and Christian organisations into places of belonging for all God’s children, regardless of abilities.

Throughout this journey, I can see God’s grace and guidance, leading me to where I am now. I am so thankful and privileged to now be working with Elevate where my life experiences and academic learning can be used to support and advance God’s kingdom on earth. I am excited to be a part of the new Nelson family camp, which we are opening up to all families affected by disabilities, be that a child, sibling, spouse or parent. I am also excited to potentially work with Christian campsites across the country to help encourage, train and support them to become more inclusive. I pray for more opportunities to run even more camps – maybe a week long summer family camp? Or a youth/young adults adventure camp? – Of course, none of this can happen without God’s grace and provision and volunteers and it will be certainly taking one step at a time, but I know that God has given me this passion for a reason and I’m trusting in Him to show me the way: “Your word is a lamp for my feet, a light on my path.” Psalm 119:105.

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Siobhán Jansen works for Elevate as the Training & Seminar Coordinator and the Family Camp Coordinator. If you would like more information on our camps or you/your church would like more information on becoming more inclusive, please visit www.elevate.org.nz. You can read Siobhán’s blog on inclusive Christian camping at www.siobhanjansen.wixsite. com/mysite.

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Our Family Story – Three Generations of Duchenne Muscular Dystrophy

“We will tell the next generation the praiseworthy deeds of the Lord, His power and the wonders He has done.” Psalm 78:4

“My grace is sufficient for you, for my strength is made perfect in your weakness.” 2 Corinthians 12:9

“This sickness is not unto death but for the glory of God.” John 11:4

Left to Right Standing – Sean and Cherie O’Sullivan, Heather, Brian, Jordan Linton, Karen Linton
Left to Right Seated – Ben and Joel O’Sullivan, Judah Linton

My journey with disability began in 1949 when I was three years old. Our family lived on a farm in the Waikato, where my dad was a dairy farmer. I was barely old enough to know what the word meant, but disability was to be part of my life from the day my brother was born. Peter’s birth was a difficult one for my mother, and she knew something wasn’t quite right with her third baby. He didn’t suck properly so took ages to feed and had poor muscle tone. He made slow progress physically and didn’t learn to walk until he was two years old. When he started school at five a local kindergarten teacher observed that he seemed much slower in his learning than the other children. As he grew older we noticed he gradually grew weaker. Peter was a happy child, so we called him Smiley Pete. My parents loved God and lived out their faith in their daily lives. While not knowing what his problem was, Mum and Dad believed God could heal him. When he was seven an aunty friend took him to Australia to be prayed for by the healing evangelist Oral Roberts. While he did have some improvements, sadly he wasn’t healed; rather he grew weaker as the years went by. He eventually ended up in a manual wheelchair and lived at home with my parents. After 2 years at school he took correspondence lessons at home, which I loved to help him with. The diagnosis of Duchenne Muscular Dystrophy (DMD) wasn’t made until Peter was about nine. Sadly, he died just after his 16th birthday, in 1965, after increasing weakness and having difficulty with breathing.

While we grieved for Peter, each in our own way, our family went on with life in the years ahead. There was no indication that this disability would affect any others in our family. A few months after Peter died I became friends with Brian Vincent from the church we attended, Pukekohe Baptist. We married in 1968.

So, the years went by – we little dreamed that our lives were about to change dramatically. By the early 1970’s Brian and I had become the proud parents of three children, Cherie, Karen and David. I was finding fulfilment as a young wife and mother and God gave me many scriptures to encourage me.

However, as David grew, we noticed he couldn’t run or walk very fast or climb trees like his sisters. He was starting to remind me of Peter. After a series of tests and X-rays when David was four, he was diagnosed as having Duchenne Muscular Dystrophy. Yes, it was the same disability as my brother! This disease causes the muscles of the body to slowly waste away until even the muscles of the heart and lungs are affected. It is a genetic disorder, affecting only boys, and caused by the lack of a protein called dystrophin in the muscles. It is characterized by progressive muscle degeneration and weakness. Being genetic meant I was probably a carrier, with the potential to pass this on to my children; a 25% chance of any sons to have it, or 25% chance of my daughters to be carriers of it. This was confirmed after I had a blood test and David a muscle biopsy. My mother must have been a carrier too, as both my brother and I were affected.

At back – Heather (me), Bruce (Dad).
At front – Peter, Steve, Flo (Mum), Kath

Up until then I didn’t know I was a carrier. We now knew Cherie and Karen could be carriers of the defective gene as well, potentially passing it on to any children they might have, but then only nine and seven, it was too early to tell. They became wonderful caring sisters to their brother, even though he needed extra attention as he grew older. He was a happy boy and we often said, “Keep smiling David, makes us wonder what you’re up to!”

While this was devastating news at the beginning, God encouraged me with the scripture, “This sickness is not unto death, but for the glory of God.” John 11:4. We believed God would heal him, and we took him to healing meetings for a while. But we reached a point where we relinquished his healing into God’s hands. As the years went by, he not only inspired us, but everyone he met. “It’s all right Mum,” he’d often say. “I know God can heal me – I just don’t know how or when.” He grew to be a young man with a strong faith, who seemed to take his increasing weakness in his stride, even when needing a wheelchair and unable to do much for himself. God encouraged me with the scripture in Exodus 2:9 (KJV) “Take this child away and nurse him for me, and I will give you your wages.” And He has done just that. When David got his first electric wheelchair, he loved whizzing around Hebron School, to the envy of his classmates.

When they tried to stand on the back for a ride, it annoyed him, so he did a quick turn in the chair and flicked them off the back! David eventually attended Mt Roskill Grammar where there was a disabled unit. He did well there, and continued his education by studying architectural drafting at Unitech. This enabled him to design our new wheelchair accessible house with a harbour view in Te Atatu, which we moved into in 1994.

“My grace is sufficient for you, for my strength is made perfect in your weakness.” 2 Corinthians 12:9

When Cherie, and then Karen, got married they faced uncertainty regarding starting a family because of the hereditary factor. Cherie and Sean wanted to know if Cherie was a carrier, so when they married in 1989 she had a DNA test done. It was determined that she was a carrier, so they knew the risks involved. Cherie said at the time, “There is a 75% chance that our child will not have DMD, so this is a risk we decided to take.”

In 1995 Sean and Cherie’s first son Joel was born. A month later blood tests verified that he had DMD. We were devastated – this was not what we were expecting to hear. This disability was not going away, it was now affecting a 3rd generation. Joel, our first grandson, won his way into our hearts as he grew. Just a year later, Ben was born and he too was given the same diagnosis. This too was devastating news: it was too big for us, but not for our God, whom we believed was still in charge. We decided we’d trust Him with our future, as we watched Joel and Ben grow up; they were a double blessing. When asked what he thought about having two nephews with DMD, David was quite matter of fact. “They could find a cure for MD before they get too old and that would make a difference.”

Karen married Ivan in 1995, and soon she was pregnant. She and Ivan decided not to have tests to determine whether Karen was a carrier or not. They didn’t want the knowledge of a disability to potentially affect the way people treated their children – for as long as possible. And they knew God would be faithful whatever the outcome. Jordan was born in 1997 but as he grew showed no signs of muscle weakness, rather the opposite – he was full of energy and bounced all over the place. Judah was born two years later, and he too wasn’t tested. However, as he grew older Karen began to notice the tell-tale signs of DMD: muscle weakness, not able to run properly, or pedal his bike very well. So at nearly seven years old, (in spite of the doctors thinking he was a bit too average to have DMD) Judah was diagnosed with the same disability as his cousins and uncle! We were all in this together. And three out of four of our grandsons have the same disability. At the time it was mind-boggling to realize this and the implications for our family. But David himself became a role model for his nephews and was so proud of them. They loved having rides on the back of his wheelchair but he wasn’t quite strong enough to sit them on his lap!

Caring for David took its toll on Brian and I even though we had wonderful caregivers to help us. We were grateful for the support of the folk from Elevate, like our wonderful friends, Hugh and Di, and the many Labour Weekend Camps we attended. Eden AOG was our church then, where Geoff and Joanne Wiklund pastored us. They could see the tremendous stress we were under so Geoff suggested we take a ‘sabbatical’ break from David’s care. So in 2000, when he was 25, David moved into a supportive flatting situation in Mt Albert. This was not an easy decision: we had to let our son go to be cared for by others. However, some of his friends from Elevate lived here, including another young man with DMD, so after six months he was happy to continue. Two years passed and it became apparent that he needed more intensive care than the flat could give him, so he returned home. His weakness increased, affecting his breathing and eating. Finally in September 2002, aged 28, David passed away into the presence of the Lord he loved and served. It was his Nana’s 88th birthday (she outlived her grandson by five years).

Left to Right – Karen, Heather, Brian, David (seated), Cherie.

Our grandsons now became our focus as we supported them, enjoying regular family times like Christmas and birthdays together. We proudly watched as their parents cared for their sons and gave them great experiences. Karen even took Jordan and Judah to Rarotonga in 2008 for a year’s teaching position, while the O’Sullivans went to Bathhurst Motor Sports in 2007. The four ‘little’ boys grew to be handsome young adults, and have enjoyed getting together as cousins! Each one has unique gifts and talents in art, music, memory and computer technology, while they all love motor sports! Cherie’s family now live in Tauranga, as we do, while Karen and Judah live in Hikurangi near Whangarei, and Jordan lives in Palmerston North.

In 2018 Ben developed a serious heart condition which needed treatment. Miraculously he and the family were still able to take a ‘bucket list’ trip to the United States, with sightseeing, motor sports and a Church Worship School on the agenda. However, Ben’s heart condition didn’t improve and a year later in March 2019, he passed away. He’s now no longer confined to his wheelchair. Joel and his parents miss him very much.

It’s only by God’s grace He has enabled our family to live this big life. From my parents to our grandchildren, we as families have found God’s faithfulness and grace truly has been sufficient for all our needs. For His grace is made perfect in weakness, including the weakness of muscular dystrophy. When we are weak, He makes us strong. I wrote “It’s Allright Mum!” as a labour of love, but also as therapy as I worked through some of the issues that disability in the family brings. I wanted to encourage families who were living with a disability. I wanted say “It’s all right, Mums, and Dads, God’s got this! He’s in control and He’s the same yesterday, today and forever. He’s the God of compassion and He can comfort you like He has comforted us.”

“The Father of compassion and the God of all comfort, comforts us with in all our troubles, so we can comfort those in any trouble with the comfort we ourselves have received from God.” 2 Corinthians 1:3-4

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Heather Vincent lives in Tauranga with her husband, Brian. They have both been involved in Elevate since attending National Camp in 1985. Her book, It’s All Right Mum!, was published by Daystar in 2004.

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Image of the cover of the encourager magazine issue 173 March 2022

 

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