Stories/Poems


A L’Arche home: a mother’s hope

For 24 years my husband, Andrew and I have  lovingly cared for our 27 year old daughter, Kelly. At 4 years old she contracted viral encephalitis and began to have seizures. Gradually she lost her language and independence. Some days now even swallowing is difficult. She needs constant support and assistance with all things.

She represents a very vulnerable group of people. Try to imagine yourself in a place of very deep vulnerability, a place where you can never express  your needs, or say how you feel because you cannot speak, a  place where you are unable to express any emotion. Imagine having to depend on someone for your every need, every day. Imagine, if you can understand but are unable to let anyone know, and  therefore everyone assumes that you don`t. Imagine the magnitude of your loss if you were once able to speak and be independent and are now no longer able. This is a place of the very deepest vulnerability and dependance. It is also a place for potential  abuse and neglect. You will never hear the cries of these people in our society because they cannot speak, they will always be hidden.

Kelly needs constant care by a community of people who are present with her and love her. We know that as we get older we will be unable to do all that we are doing now. But we also believe in a loving ever-present God who knows all things and who`s spirit abides in and with his people. It is  a God who truly cares for the weak and who knows all things. Where could we find the kind of care that truly reflects God`s unconditional love, especially for his most vulnerable people? Our search was painful and long. We had no peace till we found L`Arche ... and finding L`Arche was only the beginning!!!

We needed to understand the journey of faith that is lived out in L`Arche. We can see  Jesus alive in L`Arche. The faith-filled people who are L` Arche  live in community with the most disadvantaged and vulnerable of our society. They give their hearts and lives. 

For 24  years my husband, Andrew and I have  lovingly cared for our 27 year old daughter, Kelly. At 4 years old she contracted viral encephalitis and began to have seizures. Gradually she lost her language and independence. Some days now even swallowing is difficult. She needs constant support and assistance with all things.

She represents a very vulnerable group of people. Try to imagine yourself in a place of very deep vulnerability, a place where you can never express  your needs, or say how you feel because you cannot speak, a  place where you are unable to express any emotion. Imagine having to depend on someone for your every need, every day. Imagine, if you can understand but are unable to let anyone know, and  therefore everyone assumes that you don`t. Imagine the magnitude of your loss if you were once able to speak and be independent and are now no longer able. This is a place of the very deepest vulnerability and dependance. It is also a place for potential  abuse and neglect. You will never hear the cries of these people in our society because they cannot speak, they will always be hidden.

Kelly needs constant care by a community of people who are present with her and love her. We know that as we get older we will be unable to do all that we are doing now. But we also believe in a loving ever-present God who knows all things and who`s spirit abides in and with his people. It is  a God who truly cares for the weak and who knows all things. Where could we find the kind of care that truly reflects God`s unconditional love, especially for his most vulnerable people? Our search was painful and long. We had no peace till we found L`Arche ... and finding L`Arche was only the beginning!!!

We needed to understand the journey of faith that is lived out in L`Arche. We can see  Jesus alive in L`Arche. The faith-filled people who are L` Arche  live in community with the most disadvantaged and vulnerable of our society. They give their hearts and lives and provision. We are in a place of dependence, and  we can see God at work.

My husband and I pray every night for a L`Arche community in Adelaide where our daughter can live with others who care and love as an expression of their faith in Jesus Christ. Where the  gifts of all its members are shared and acknowledged and each person`s presence is greatly valued.

Adelaide  needs the shining light of L`Arche ... may it be so!

Norelle Pearce (c/- Andrew & Kelly)

Editor’s note: Even though Norelle, Andrew & Kelly live near Melbourne, Vic., they attend L’Arche meetings in Adelaide when possible.

 

 

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Agnes

The Mutuality of Care

I found myself sitting next to Agnes as she lay peacefully half asleep in her bed. Agnes was an elderly woman who had lived her life with a significant level of intellectual impairment. She had been in the grips of an advanced state of dementia for a number of years. She offered little in terms of verbal communication but valued company.

Agnes was close to death.

I sat there for some time stroking her arm, saying little.

Eventually I felt it was time to leave, especially as Agnes seemed to be sleeping peacefully. However, as I began to move she lifted her arm and gently but decisively took hold of my hand and placed it next to her. I sat with her for some considerable further time.

I was humbled. Here I was a Uniting Church chaplain, a professional carer, there to care for her and yet, through her simple gesture, my professional status melted away.

I felt vulnerable, wounded, the one who really needed care.

But in Agnes' gently clasp I also felt loved and valued.

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Becky

The healing power of art

Ian and Curly Corlett are the proud parents of Becky. Becky is 18 and they adopted her at birth. Becky was born with a major heart defect which needed surgery when she was 11 weeks old. She also missed out on a chromosome and has Down Syndrome, but her family say the compensations are enormous.

Last year while out walking with her Dad Becky had a stroke that left her paralysed down her right side. Her courage in responding to that was incredible. She recovered well physically but it left her with a lack of energy and some further speech impediment. Frustrating because she has a bit to say!

In July this year Becky was back in hospital at Adelaide's Flinders Medical Centre. It was discovered that she had suffered major heart damage. Your heart does its pumping routine about 65 times a minute. Becky's was on 18 and she was not expected to live. She did and was making a comeback when she had another major stroke. Within 48 hours her parents thought it was over; they had decided to give a Do Not Resuscitate order and were debating about the feeding tube through the nose as she could not swallow. The feeding tube went ahead and they had to have an X-ray to make sure it was in her stomach, not in her lungs.

On the way to the X-ray they went close to FMC's Promenade Art Gallery where a woman in a bridal dress was painting a huge mural while a man played classical music on a stringed instrument. With Becky's one working arm she pointed and was taken over for a look (Dad Ian plays the violin and Becky loves brides!).

The artist (also named Rebecca) turned, saw Becky, and had some sort of connection - and handed her the paintbrush. Becky, in her wheelchair, began to follow the contours on the mural seeming to put her life-threatening health problems aside as she became engaged in the artwork. Ian describes that moment as Becky deciding to live! They later discovered that the artist had not ever let anyone else paint in her work. After that Becky continued to return to the Promenade Gallery to participate in the mural. Her heart function, arm movement and speech all improved markedly in the following week.

Becky's story was subsequently told on Adelaide's Channel 7 News and in the Southern Adelaide Health Service's monthly publication, Southern Health News (August 2007). Artist Rebecca Campbell was painting a 14 metre mural as a performance to cello as part of FMC's Arts in Health program. As part of the performance Rebecca wore a wedding dress complete with veil and a posy of colourful paintbrushes. Her performance attracted hundreds of curious patients, visitors and staff.

So what happened here? Why?

Arts in Health Coordinator at FMC, Sally Francis, said, "This experience highlights the importance of bringing art into hospitals. Becky had a life-changing experience. The ability of art to lift people's spirits can be invaluable to their health and wellbeing."

Dad Ian says, "Something deep and intrinsic happened that day, which is unexplainable and gave Becky the will to live." Both her parents say they have learned more about God and life from her than from any other source in their lives.
Who would you let wield a brush in your work of art?

Used with permission

 

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David

Confidence in God

We arrived at the cemetery late in the afternoon of All Saints Day. It was drizzling with rain and the cold wind was heralding an early winter. The cemetery grounds were perched on a hill behind Syracuse University but the misty rain prevented us from taking advantage of the view. I felt privileged that I had been invited to share with the L'Arche community, from Butternut St Syracuse, a time of celebration for the life of Bernie one of their members, who had died some eight months earlier. I was apprehensive because I was not sure what we were intending to do. The ceremony was simple for the seven of us who were present, we read a bible reading we spoke with fondness for what Bernie was able to contribute to the life of the community. Finally we joined hands and prayed, concluding with the Lord's prayer or as the community referred to it the 'Our Father' prayer.

I was standing next to a man named David who had Down Syndrome and as his hands were released he raised them to the sky and prayed this most beautiful prayer of assurance. David thanked God for making room for Bernie and welcoming him. He prayed that he knew that Bernie was now safe in God's arms and that Bernie was now happy and free from pain. It was a simple prayer but it conveyed a confidence in the providence of God that was compelling.
I felt tears beginning to well up in my eyes and I turned away ashamed. I realised that whilst I had accepted David's humanity I had not accepted David's divinity and his ability to teach me about God. I had rejected, albeit unconsciously, that David's relationship with God was so strong and powerful that he was God's messenger. I had allowed David's disability to prevent me hearing God's voice.

David had spent much of his life in America's state institutions for people with intellectual disabilities before coming to the L'Arche community. During that time he had suffered incredible abuse, so much so that almost every organ in his body had been damaged, however he never lost his ability to reflect the glory of a loving God.

by Rev John Smith
used with permission

 

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Marianne

Living with Chronic Fatigue Syndrome

I never expected, at the age of 28, to lie down on the couch and not be able to get back up again.

It was a Sunday in 2001 and I had been working hard all week. As I lay there unable to lift my head or even to turn it, panic set in. After two years of exhaustion, joint pain and insomnia, it seemed my body had finally reached its limit. It was some hours before I could muster the physical strength to get up and crawl to my bedroom.

After many tests, I was diagnosed with Chronic Fatigue Syndrome/Fibromyalgia. I had been infected by a particularly nasty type of bacteria, in the same family as typhoid. It is very hard to kill and full recovery is uncommon. In my case, it was several weeks before I could walk more than one minute a day, or speak above a whisper.

I returned to Adelaide to my parents' place, to be looked after. Thus, I went from trained social worker to client, from adult to child, in a moment.
During this time, three people wrote to me with the words 'go gently'. I thought about this a lot over the coming weeks and months. As a task-oriented person, this idea did not sit well with me. I wanted to identify the problem, solve it and get on with my life. Chronic Fatigue Syndrome isn't like that. If you push yourself, you become worse. And just when you think you're improving, the down cycle begins once more. I had to learn to slow right down, to be still, to listen to my body, to relinquish control and just be.

I thought of Michael Leunig's words, These circumstances will change. This situation shall pass' While I have improved somewhat, it is not my circumstances that have changed so much as my ability to deal with them.

I don't believe God is punishing me. Instead, I have been sustained by God through the worst of it.

I've learnt to accept the good days with the bad, and to be awake to the sense of peace that can come in the darkest moments.

by Marianne Vreugdenhil
used with permission

 

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Molly

The Value of Human Presence

I sit next to Molly in her dining area. Though I've sat with her dozens of times previously I introduce myself to her once again. Amidst her growing frailty and senility, exacerbated by her intellectual impairment, she barely recognises me.

From time to time she utters a few words but none of them suggest awareness of what I have said to her. She seems content to have me sit alongside her, though her facial expression sometimes suggests that she is somewhere very far away in thought.

I continue to sit, mostly in silence. I look up and see a staff member with head buried in client files, another taking a client to the toilet, and someone from catering delivering this evening's frozen meals for tea. They are all doing something, achieving a functional goal, fulfilling their professional responsibilities. In a moment of self-doubt I feel I'm wasting my time.

Molly, without rejecting me, seems mostly in her own world. And I'm not really doing anything. - And yet, beyond doing I remind myself I am being present. As I recover from my doubting state of mind I remind myself how, beyond words, beyond tasks, and even beyond intellectual awareness, unhurried presence is so crucial to the human need for companionship and community.

I remind myself how unhurried presence is so foundational to understanding and experiencing the love of God.

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Peter

Walls of Restraint

Walls of restraint,
some material,
others imagined,
built on fear of difference,
ignorance,
traditions,
preserving space,
my space,
my routine,
preserving 'normal',
(what's 'normal'?)
truth,
my truth.

If unchallenged
leading to labels,
sticky labels,
harsh labels,
hurtful and wrong labels.

Mad.
Moron.

Idiot.
Insane.

Dumb.
Disabled.

Bingo! Prejudice!

Bring down those walls,
those walls of restraint.

Peter: A Quiet, Precious Life

Peter was born 62 years ago with a major intellectual disability that, beyond the love and support he received from his caring parents, necessitated him receiving professional support over all of his teenage and adult life from a disability organisation able to offer him the assistance he required.

A few weeks ago Peter died, quietly and peacefully. Following his funeral, a memorial service was held for him at the church he attended before his health started to fail in his latter years. At these services heartfelt memories of Peter, some going back a lifetime, were shared, memories that evoked a sense of joy, but, of course, sadness and a few tears, that a likeable and loved friend was with us no more. Some people might look at Peter and think that his life didn't amount to much. I mean, his intellectual disability prevented him achieving the type of ambitions that society generally admires. He never gained celebrity status, he could never lay claim to an achievement  that gained wide applause, and he was never in the spotlight getting pats on the back.

Peter's quiet life is over. Let's just move on. -  Right? ..... Wrong!
Because .....

In the slowness of his steps we see the need to be still.
In his failings we see the need for honesty.
In his acceptance of others, we learn of unconditional regard.
In his gentle spirit, we learn more about peace in our chaotic world.
In his frailties we see our own frailties.
In his love of others we see our own need to be loved.
In his face we see a precious soul created in God's likeness.
In his life we see Christ's love for all humanity.

Peter has died. Let us not move on too quickly.

Told with permission

 

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Public Display of Autism

a poem by Tina Moreland


If he falls to the floor, kicking and screaming, because there’s no chicken nuggets, it’s just his way of coping. Be patient, you’ll get your turn to order.

If she bumps her head and starts to hit herself in the face, don’t stare, it’s her frustration.

Mom will handle it, she sees it everyday.

If Dad is cutting his child’s food, he’s not treating him like a baby. He just doesn’t want his son to choke.

If she ignores your child on the playground, she’s not a brat. She’s just not good at social interaction. She would love to play with your child,

she just doesn’t know how.

He may be too big to sit in the shopping cart.

No, he’s not lazy. He wants to run around,

but his Mom needs to shop. She’s not up for chasing him today.

If she has to be carried out screaming it’s probably because of a meltdown. Be helpful, open the door. Don’t just stare or whisper. No, it’s not because she didn’t get the toy she wanted.

If it were only that simple.

Don’t talk to her like a child, unless she is one. Don’t yell, she’s not deaf. She may not talk,

but she can understand.

No, it’s not bad parenting. Discipline won’t help.

This is autism, it’s his life. Don’t judge him,

he’s not judging you.

 

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Rodney

The Mystery of Worship

I used to work full-time as a chaplain at an institution for people with physical and / or intellectual impairments. My office was located off the back of the chapel which is used regularly for mid-week and Sunday worship by the residents who live there. It is a beautiful place of worship, with windows on three sides accommodating the sunshine, and a view of the beautiful grounds that surround the chapel. Occasionally, whilst working in my office, I would here residents and staff come into the chapel. There were residents who wanted to play the piano, another who just wanted you to get him a drink of water, staff who wanted to talk with the chaplain or with colleagues ..... and then there was Rodney.

Rodney was in his 40's, had a profound hearing impairment as well as an intellectual impairment, and would wheel his chair around the institution's grounds with the considerable strength contained in his upper body.

Rodney occasionally came to the chapel during the day and would spend time silently observing up close the chapel's liturgical furnishings, pictures and symbols. The banners, the mock stain glass windows, the cross that stood on the communion table, the picture of Jesus on the back wall of the chapel - they all might become the focus of his reverent reflection. If you entered the chapel whilst he was there he would, with his exaggerated and graphic hand movements, motion for you to join him in this act of reflection.

He might point to the Jesus of the mock stain glass windows, and then with a grunt - the only sound he made - look you in the eye and raise his hand upwards, as if to heaven. He might wheel himself up close to the cross, then bring his hands together in a prayerful clasp. It seemed clear to me that what occupied Rodney's attention in the church was of sacred significance. I no longer work full-time at that institution but I still lead an ecumenical Sunday morning worship at the chapel for the 40 or so residents who wish to attend. The worship is informal with much room for interaction between worship leader and congregation. There is singing of familiar hymns and choruses, readings and prayers, an interactive style of message, and the celebration of Holy Communion. Rodney used to come to these services occasionally but in the last year or so he has been coming regularly. He will usually wheel himself to the front of the worship, pay close attention during the service, and sometimes linger for a while in the chapel after the service was concluded. I have often found myself reflecting upon what it is that the act of worship means to Rodney, after all he can't hear a thing!

Perhaps it's the action of receiving the communion elements.

Perhaps it's the movement that takes place during the delivery of the message.

Perhaps it's the idea of being together with others amidst the chapel's liturgical furnishings and pictures.

Perhaps it's all the above, perhaps it's something else altogether simpler or more profound.

I don't know and never will. And perhaps if Rodney could talk he may not be able to tell me because his experience is beyond his words or too personal. But, through Rodney I've been compelled to understand more than ever that there is more to be "heard" in worship than can be absorbed through my ears. That God and worship can be experienced through my other senses, and in ways that are beyond my rational understanding. Ways that draw me deeper into the profound significance of sacred spaces such as that chapel, and of the act of worship. Rodney invites me to live with such mystery.

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Sophie

Who is this person I see?

Who is this person I see sitting next to me, soaking up the afternoon light as it pours in through the windows of this institution?
... an aging woman by name of Sophie-frail, far away expression
... thinning grey hair, loose, weather-beaten skin, slightly hunched
... a sufferer of strokes some years ago
... a struggler for words and thoughts-frustrated, so frustrated
... so dependent-for feeding, washing, toileting, so much
... so dependent-on doctors, nurses, speech pathologists, dieticians, and all the rest of the health care artillery
... and a loner-a weary loner.

I find myself in her bedroom, 5 metres by 3-Sophie's world.

She points to a book of clippings, pictures, and type-written notes - I see a career that's taken her to North America and Fiji-fine achievements, many colleagues and companions from across the oceans.

I turn to the opposite wall to observe a framed education degree, a large certificate of appreciation from North America hanging above a large, and a beautifully hand-crafted fruit bowl, with a plaque denoting best wishes from Fijian friends.

Above her head I see a painting of Jesus washing his disciple's feet, signed by Sophie.
I see old photos. She nods-it's young Sophie with her parents.
I see craftwork, mementos, treasured books, and so much more.
This room is like the gallery of this woman's proud and rich life.
I no longer simply see a rather vacant, aging, weary woman, wholly dependent on others for the failures of her body and mind.
I see a dignified woman, a dignified woman who has lived, loved, taught, learnt, experienced joy and grief, success and failure.
I see a proud woman who has gently shown me she is not to be contained by my limiting clichés and na ve first impressions.

Who is this person I see?
A giver of grace to me.

by Trevor Whitney
Told with permission

 

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