This was Little One’s response to my Favourite Wife’s assurance that she could come home whenever she felt like it and her room would still be there for her. They were sitting together, a little nervous both, on a visit to look at the home that will very soon be hers. Whether it’s for her sake or for ours I’m not sure, but it’s been awfully important to us that she knows she can come home, that we are here when she needs us, that when Independent Living gets too hard we will be right here, just like always, waiting to embrace her!

“Mum, It will Never Happen!”

In just a few short hours Little One will leave our home and fulfil her great longing to live independently. But “Little One” ceased to be her monika long ago. In these pages she became Teen Girl almost a decade ago, and is now aged 21. But tonight, especially, I can’t call her anything else.  

My Favourite Wife and I have had children in our home for 33 years now, and Little One is the last to leave.  I have adored a home full of children. Little One has Down syndrome, and is in so many ways just a little child still. Tonight I was able to forestall a potentially dreadful argument with an impromptu sing and dance routine with a walking stick, Fred Astaire style. With an immediate gale of laughter she jumped up out of her funk and showed me how it’s really done. She is a born dancer with an astonishing sense of rhythm and and endless supply of “moves”. A child still. The conflict forgotten she thanked me earnestly for dancing with her, and willingly went to bed.  She still needs to be put to bed; just about every single night.  

Once a month Little One might take herself off to bed alone, but on every other night we coax her under the covers with a polished routine that includes a 10pm automatic shutdown of her screens, followed by an immediate request for more time, which I grant in small increments. Warm milk is promised, and delivered. Then Little One insists that I tick off numerous daily tasks across a page, producing a growing tally that turns into a deposit of a few dollars into her savings project at weeks end. It seems to me a little inappropriate for me to be rewarding young adult for picking up their PJs (or not!), but she absolutely insists – and it’s a fixed part of the routine. For months now she has scored a zero on every single day, bar none, in the column for tidying up her floor. I asked her a while ago if she was, in fact, ever going to tidy up.  

“No”, she said.  

“Why not?”  

“Because it’s not my room”.

This gives way to our Wordless Hug. Words are a problem for Little One, there are too many of them in the world, and utterly too many issuing from her wise and devoted parents. The wordless hug is our invention, and it is wonderful. I love it at least as much as she does, and sometimes it is long and deep. The next stage is not approved equally by all parents in our home, because it involves tickling. My own father was exceptionally gifted in the art of rousing sleepy grandchildren with a good tickling, and demonstrated his talent at any opportunity. We just cant help it, one moment it’s a Wordless Hug and the next I can feel a sneaky finger  heading under my arm. It’s awfully funny, and thankfully doesn’t usually prevent the next and final stage of the bed-time routing: pulling up the blankets. If all this seems like a bit of work, it is; but it’s a whole lot easier than having to lie next to her and read or make up imaginary stories until she actually fell asleep after an hour or more. This was bedtime until she finished school, just a few years ago. At last I close her door, and then I wait for her closing conversation with imaginary friends to wind down over the next 10, or 20, or 30 minutes.  Or an hour.  Or more…..  Sometimes I go back in and ask her to say goodnight to all these vibrantly real and present characters, but that rarely works. 

It’s 12.30am right now, and I’m aware that her chatter has finally stopped.  I’m just down the hall, as usual, waiting for the blessed silence which I cherish. There is such rewarding peace in a silent house, stirred only by the gentle sounds of sleep. This is the time for thought, and prayer, and silence within.

Tomorrow with be a day of high adventure as we depart in a convoy of furniture and endless shopping bags full of I know not what! 

Tomorrow night, with just us two … well, that’s a different thing altogether, and I won’t break tonight’s silence to give it shape just yet. 

.

Rejoice!

City folk catch busses when they want to, Country folk catch busses because they have to. Most of my travelling companions on the town bus are there because they don’t drive, for one reason or another. It’s not that bussing is a bad way to get around, but in a town where everything is ten minutes away by car, you only spend an hour on a bus if there’s no alternative. Busses in the city are transport for the general public. Country busses are designated for the diagnosed, carriages for the categorised, rides for the restricted. If you’re on a country bus, there’s a reason you are there, and it’s rarely as simple as your destination. This is good and bad. Bad because there are some decidedly odd people onboard with peculiar backgrounds and stories; and good because there are some decidedly odd people onboard with peculiar backgrounds and stories.

Let me introduce you to someone who inspires me.

Stan is a fellow wheelchair user, a double amputee who rides a green, somewhat ancient power chair. He is of another generation, a quiet and courteous man who holds his own council and moves with grace at a speed of his own choosing. The truely remarkable thing about Stan is that he is also blind. When Stan boards the bus he does so with the chair controller in one hand, and a white cane in the other: a remarkable feat. I recall how nervous I was when I first tackled the daunting ramp on a public bus: building enough speed to climb the ramp but not so much that you miss the sharp right hand turn and crash into the driver’s door instead. Then there’s a U-turn to perform, sometimes a three pointer, before one can park in the designated wheelchair space. Not to mention letting the driver know where you are heading, tapping your Opal Card or paying your fair. Here’s a thing: In the country you can only pay the driver with cash. Cash! It’s tricky work. And I recall how nervous I am still when its raining and my wheels slip and spin and my umbrella gets stuck and I feel every set of eyes on the bus willing me to just-get-it-done! so we can all get out of here. Stan juggles all this and so much more, and without a hint of complaint or frustration; not ever.

Stan inspires me still, even though its now several years since he graced our busses and I learned recently that he had died. I ought not to have written about him in the present tense, but I couldn’t do otherwise. He was a person with an abiding sense of contentment and presence.

There are people we know well, some we know about, and others we know of; and then there are people we barely know and yet we know them. We know who and what they are, somehow glimpsing the soul that shines in the moments of our meeting, however brief. My first thought was that these people are few and far between, but that’s not right. I think that there are a great many people of grace, people formed by grace, but we are rarely quiet enough or slow enough to notice them. So, look up from your phone (blight of the modern pilgrim and passenger), and see.

Rejoice!

The best thing I read this week was a poem by Lithuanian Poet, Cseslaw Milosz. I first came across it a few weeks ago in Parker Palmer’s book, On the Brink of Everything, and my thoughts keep returning to it.

It’s a poem for later life (not that I am remotely near later life myself, or would ever suggest that you are, dear reader….). So let’s agree its a poem for middle life:

As a young man I felt that native indestructibility that makes life so much fun. With an exaggerated sense of permanence came the the idea that I was somehow important. I mattered, in some unique way, to the world.  That’s not quite as pretentious or as foolhardy as it immediately sounds because we do contribute to the world, each in our own way, so we should be kind to our younger, naive selves. 

Having now commenced my seventh decade I have a clearer view of my 1:7,960,000,000 role in humanity. And those are only the ones living now. As Milosz says, I am only one thing among many. 

Perhaps the trees around our home, and the birds in the trees, might call me friend.  I am not so different from them: made of much the same stuff, taking my place in creation in much the same way. Do I know what purpose I serve in it all? Do any of us, really? Must we know? 

Enough to live well today, saved from the burden of significance; and, God willing, tomorrow.

Rejoice!

(The website that hosts Rejoice! has changed just about everything, and I’m quite lost! So if it looks a bit crook that’s why. Perhaps in my 7th decade I can learn a new trick, perhaps not).

RoderickMAllen@gmail.com

The ten foot circular wading pool in our yard happens to be one of the purest and grandest places in the world. Standing (infrequently) I measure 6’7”. Floating, starfish style, I can very nearly touch the pool wall at all four points of a ten foot compass. A curious image, assuredly, but on a clear day situated thus I can see the vast blue canopy of the sky fringed by the greenery of our garden; I can glimpse the glorious bay windows in our home; and I can see a ring of bushland rising dramatically on the hill we are nestled into. It’s superbly rich; simplicity so delightful that I sometimes laugh out loud in surprise.

Easter Sunday, 2020, is just such a brilliant blue day, and although summer is long gone Teen Girl and I will be taking our daily dip soon. It is from this buoyant posture that I find myself pondering the delights of “self-isolation” in Paradise, while humanity around the globe is in travail. It confounds me that I am enjoying a secluded life of peaceful occupation even while vultures circle the hospital in Guayaquil, Ecuador, hungrily drawn to an unknown number of CoronaVirus fatalities within. It has ever been so, but the harsh contradictions of life defy my understanding. 

As 2020 dawned I was apprehensive, no, I was despaired. The international press was full of scientific data proving that the earth’s ice caps are melting at a greater speed than the most dangerous modelling had predicted. Climate change was being ignored by governments around the world, with few as wilfully dismissive as our own. I dreaded to think of the world that my children and grandchildren will inherit. And yet on that very day, New Year’s Day, a grandchild was born to us unexpectedly, weeks before she was due. Light magnified within me as the birth of this tiny child brought us to our knees in wonder. “Unto us a child is born” says the scripture; and with complete disregard for the proper application of that verse I bathed in the glory of hope; a God-given joy. 

But I wonder if you share with me, three months later, a shy hope still? There are prophets everywhere: ordinary people are peering forward through today’s cloud of fear to catch a glimpse of a new world. My own self-isolation is becoming a rebirth; I have a deepening awareness of the opportunity for change. More than that, a calling toward change. I know that in some western countries (incredibly, our own included) there are queues at the door of gun shops; but what I hear in the ordinary voices around me, on the phone, on the news, are expressions of community.

Could it be that personally, communally, nationally ….. even globally ….. rebirth is possible?

In his book Out of Solitude, Henri Nouwen writes:

“But in solitude, our heart can slowly take off its many protective devices, and can grow so wide and deep that nothing human is strange to it. Then we can become contrite, crushed, and broken, not just by our own sins and failings, but also by the pain of our fellow human beings. Then we can give birth to a new awareness reaching far beyond the boundaries of our human efforts. And then we who, in our fearful narrow-mindedness, were afraid that we would not have enough food for ourselves (or enough toilet paper?), will have to smile.” 

On Easter Sunday, 2020, my heart is drawn toward hope, toward rebirth.

Rejoice!

My thanks to two dear friends, Robin and Philip, who this week reminded me to write.

Do drop me a line,
(but be warned: I am both a slow reader and slow writer).

Three stories about wheelchairs.

The week ahead holds great hope: three drawn out dramas could possibly be resolved.  (Number 3 is the best, so read on….)

Number 1.

I had a terrific little power wheelchair a couple of years ago which I bought after research and consultation with an Occupational Therapist. Small, and purely for use around the home, its primary virtue was that it had enough space under the seat to accomodate the ventilator with which I breath much to the time. Under-seat space on power wheelchairs is vanishingly rare, but I found a chair that perfectly accommodated one of my breathing/battery ‘rigs’. I purchased second hand, and sadly the little chair developed a motor problem after about 9 months, and it has been sitting in the corner of the garage for almost two years now. A single motor/gearbox unit is worth more than I paid for the whole chair. In October last year the NDIS agreed to fund a replacement, and a quote and supplier were lined up. But having approved the funding, some tiny dot was apparently missing on some form or other, and the funds were not released. With numerous phone calls, you probably know how it goes, it took a mere three months for the missing dot to be discovered, and the funds were released conveniently on the Friday before Christmas: effectively the last trading day of 2018.  By the time the company that had been paid for the wheelchair actually place the order in January, all Australian stock had apparently been sold, and the chair could not be delivered. It was to be March. Then it was to be April. May (apparently) is far more promising and last week they said, “next week (maybe)”.

Number 2.

Cracks in the rims of my wonderful, hi-tech manual wheelchair began appearing late last year. Towards the end of February the cracks became so serious that both wheels were well out of alignment, and a disaster seemed imminent. With great reluctance I dusted of Bugger, the faithful but vastly inferior hospital-grade wheelchair which I bought second hand in 2010. For the first few days using this heavy, ancient chair I wondered if an active life could possibly continue, and the intimidation and fear was overwhelming. But life did roll on. The cracks, by the way, are probably a legacy of using solid tyres rather than the more forgiving pneumatic inner tubes, for those who take an interest in such things. New wheels cost $1000.00.  Per side! So I consulted with a mechanic and we ordered the rims alone from America. After many weeks they finally arrived, and of course were the wrong ones. A “picking error” was the verdict. The second set arrived late last week, so that’s a mere 10 weeks after the first order was placed. And, all going well, the good chair will be back on the road this week!

I tell these two stories for a purpose, and not just to have a whinge. This is exactly how things in the disability sector play out, time after time. In our contact with families in Special Education, my Favourite Wife and I have seen many children wait far longer than this.  It can take well over a year, even two years, for an ungently needed wheelchair to be approved and provided, by which time the child has grown and the prescribed chair is much less than optimal. In the “able” world nobody would put up with such delays and, sad to say, such ineptitude. But in the disability sector the choices are far narrower, contracts tie you to single providers, and a host of other factors produce a mediocrity that is hard to tolerate. This is a rant, yes, but I am ranting on behalf of host of others. I’m ranting on behalf of people who don’t have the ability to self-advocate; and on behalf of parents whose lives are already stretched beyond imagining and who must also put up with endless, intractable problems with funding and supply. 

With that out of the way…

Number 3!

Over 9 years I have made four applications to become a volunteer pastoral visitor in our local hospitals, and this week I am accompanying the Health Service Chaplain to a neighbouring town to visit a facility that currently has no pastoral care. I have been in a truly excellent training programme over the past three weeks, and now, finally, I’m approved and ready to start. I made my fourth (and final!) application to become a volunteer visitor last year, at the same time that I returned to woodwind playing on the strength of a remarkable change in medication. My first application, 9 years ago, failed on the grounds that I had just missed the mandatory training programme that was only held annually, which is fair enough.  Attempts 2 and 3 were made to a different Chaplain in the Health Service, and both failed on the astonishing grounds that he considered a wheelchair “unsuitable” in a hospital setting. But his reign “came to pass”, and the new Chaplain is welcoming and altogether good.

A big week ahead! 

(I hope….)

Rejoice!

I have decided to no longer link my blog posts to Facebook, for reasons I will soon write about here. As a result I believe Rejoice! is now only read by a handful of people, down from the heady days when it was read by many hundreds each week.  But I’m still here, and would still love to hear from you!

“I’m not sure I’ve seen a Rejoice for a while” a good friend wrote yesterday. Very true. But today is a good day to fix that: I am filling in 12 hours while a derailed train further south is tidied up, and then my train will, hopefully, depart.

It wasn’t exactly writers block that silenced me, I have been tongue-tied, or finger-tied, for several months. I haven’t known what to write because The Miracle, whatever it was, didn’t stick. The dramatic, unbelievable improvement wrought by a little white pill lasted only 5 months. It still does its job, but other breathing symptoms encroached on the newly won ground.

It’s a story I didn’t want to tell.  I like to tell a good tale, something triumphant, and I dislike the taste of weakness. And to be honest, it was a story I wasn’t entirely happy to think about either. Last year I convinced myself that I knew what the diagnoses was, believing it to be a treatable condition even though the Neurologist patiently said he didn’t agree. It was a hard landing, to say the least, and yet here I am one year later in a similar trap. I thought I had learned the lesson, but once again I dared to gaze on the promised land of a treatment and a long, capable life. How do we process such disappointment?

Most of us ask: “Why?”
I have a friend who was suddenly incapacitated in his twenties; you may remember meeting him in these pages on occasion. Christopher awoke on an ordinary morning to discover he could no longer use one arm, could not walk, or speak, or to some degree even think. His life is very tough. We talk frequently, Christopher and I, and he says over and again, “Why, … Why?” I often reply that there is no why, all there is, is is.  (That’s a tricky little phrase: three ises!).  There is no moving on until we embrace the day at hand.

Or we might try: “What if……”
A perilous rumination! What if  the miracle drug had shown itself three years ago?  Six years ago?  What might I have achieved then?  I had to deal with a similar trap almost a decade ago when I finally succumbed to a wheelchair: What if a health practitioner had advised that step early in the game? Surely someone amongst the myriad of doctors and therapists involved might have though it worth mentioning.  I sometimes think I could even have kept my job. 

Events that make no sense are the hardest to deal with. At such times the scale of my disappointment sometimes exposes my dreadful immaturity. If misfortune has some tangental purpose it is far more easily embraced. If a well planned holiday evaporates into thin air hours before you were to leave the disappointment can be overwhelming; but when you discover that a child is ill, or you land a big contract because you stayed at home in your office, it all makes sense; we may even feel grateful for the unwelcome turn of events. Right now I want be on a train, heading home to see two young granddaughters, and their parents, who have been travelling for months; but instead I have just spent a couple of hours with a great friend who lives far from here. He happened to send me a picture of the Harbour Bridge, (a little habit we have when travelling) and we soon realised we were both on trains heading in opposite directions towards Circular Quay. Amazing! Any redemptive purpose makes a world of difference.

Well, so much for the theory.  In practice I am holding on tightly to the ground the miracle drug yielded in June last year.  Back then I had returned to the recorder consort I play with at the Conservatorium, and although the going has been rather tough a fortnight ago I played a solo passage from the Bach Cello suites on bass recorder in a small concert. Ground worth defending!  At long last, in fact on Friday this week, the training for pastoral care practitioners in the local health service begins. I’ve tried four times in recent years to volunteer with the chaplaincy programme – and I shan’t give up now. Ground worth fighting for! I’ve been taking drawing lessons at the art gallery this term, and as proven non-drawer, I’ve been quite surprised with the results.

Ground to be taken! And best of all, perhaps, Teen Girl, with whom I took endless bus-training trips last year is grasping her independence in leaps and bounds. Last week she managed to sneak out of the house one morning without saying goodbye, and found her way to TAFE on two connecting busses without our help. I had rung the TAFE to say she was unwell and wouldn’t be there; and they rang straight back to say, “She’s here!” Riding a wave of success she somehow escaped the house on the next two mornings – with no goodbye – and found her way to a different location completely unaided. “But that’s what teenagers do!” she told me on the phone last night, and we couldn’t be more proud. And she and I have more ground to conquer yet

I wonder, sometimes, if the trials that make no sense are a test of trust: if there is nothing to placate our loss, no hidden purpose, what then do we believe?

Rejoice!

*All there is, is is.  Well, perhaps “is” isn’t ALL there is……

Post Script.      (Optional further reading).

The twelve hour delay in Sydney was fourteen in the end, but I am now onboard the homeward overnight train.  When I was at university the night train was called, for reasons I can’t recall, “The Rattler”. Probably because it rattled. It stopped at every little town and siding, or in the middle of nowhere for who knew what; and it took forever.  The preferred place to sleep, if you could find an empty one, was the overhead luggage rack. If you could climb up and wind yourself in under the hanging brackets (which at 6’7” was always a trick), you could get a good nap. It had a nice comfortable curve to it, the luggage rack. Which has nothing at all to do with my post script.

I attempt on most mornings to copy a thought provoking quote into my journal, and I come back to chew it over again at some point, often late at night. Quotes come more often than not from Scripture; but others come from books, poetry, films, or something from a conversation or from the radio: whatever grabs my attention. For some reason I decided last night what I was going to write in the morning. While I was packing for an early morning rush to the station some little underused bit of brain had selected a familiar New Testament passage, one that I love dearly.  This is it, make of it what you will:

Rejoice in the Lord always; and again I will say Rejoice.
(You can see the appeal, can’t you?)
Let your gentleness be known to everyone. The Lord is near.
Do not worry about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.

Any thoughts to share with me?

So, Teen Girl was with a support worker at the Gym after school, and they rang me to propose a trip to a music shop before I was to meet them at the bus terminus in town. Fine with me.

T. Girl and I meet at this spot each Thursday, and we catch the bus up to the park just around the corner from Paradise, our home.  But as the time for the bus approached there was no sign of them.  With the oncoming bus distantly in view I received the phone call I had been sensing would inevitably come: the one where our brilliant young support worker tells me that Teen G. is slightly less than cooperative. They were still inside the music shop which I could see diagonally over the road, and someone was refusing to budge. The bus rapidly approaching from the opposite direction happened to be the last one on our route for the day.

Moments later I can see our support worker waving to me from the footpath outside the music shop, the bus only metres from our stop, but no sign whatever of daughter.
… … … no, actually, here she comes!

The bus has now pulled up, and the driver is standing on the footpath having opened out the ramp for me to wheel on. And there she is, now on our side of the road but still a hundred yards away, walking at exactly her ordinary speed and not a pinch more.  Teen Girl’s “ordinary speed” is half stroll and half dawdle; and as usual the imminent departure of a bus was not registering with her as a problem at all. Her Favourite Mother (she has several, including the Elf Queen, Lady Galadriel from The Lord of the Rings) and I are quite unable to decide why she is perpetually unconcerned by keeping others waiting. It is nothing at all for her to insist on brushing her teeth in the morning even when the school bus is sounding its horn at the bottom of our drive. Is she genuinely unaware of inconvenience and courtesy? Or is she just stubborn beyond imagining? We are leaning towards the latter.

But when she finally arrives at the bus, where I have been attempting a nervous and tongue-tied apology to the bus driver, the oddest thing happens. Teen Girl gives the driver a great big hug. And the driver responds wholeheartedly, happily introducing her to a trainee driver who I hadn’t had time to notice yet, saying something like, “This girl is one of our favourites, she’s a very good friend to all the drivers and we look out for her whenever we can.” It’s now well after five minutes since the bus should have departed, but here we all are on the footpath, T.G. lapping up all the attention, smiling and laughing with the two drivers and shooting an occasional look in my direction which I’m sure says, “Why do you carry on so much Dad? Everybody loves me.”

It is at this point that I learned from our support worker that the only reason she exited the Music Shop at all was because of a bribe offered by the store owner: a bright pink guitar pick. Why on earth, we said to each other, are there so many people eager to reward poor behaviour? This is such a regular occurrence in parenting a child with down syndrome: it often feels as if the whole world is determined to undermine any progress we make!

This dynamic makes us scream inside, but is wonderful none the less. Wherever she goes, day in and day out, she brings a clear and simple light into peoples lives. For her school teachers and her parents she offers certain other gifts as well, gifts that no doubt help us achieve our full potential in patience, long-suffering and grace; but if we were to tally it all up the bottom line would be utterly positive: she is a gift.

Parenting a child with a disability is window through which the world looks very different indeed. You learn to eschew demanding questions such as Why? What if? and If only. You are trained through so many years to accept that reality simply is. You also learn that the stereotype seen in countless movies of the disabled person who solves the deepest problems and brings joy to every home is pure bunk. You learn that there is not necessarily a happy ending, that so many things simply do not go well, no matter how deeply held your hopes and dreams might have been. But you also learn how profoundly we need one another, that weakness and strength are not easily distinguished, and that simplicity is so often beautiful.  

I’ve learned this, or hope that I have: Life is not fair, not at all, but neither is love. Love can’t be earned, true love can’t even be lost, love recognises no barriers at all, it is not impressed by strength or by weakness, and pays little regard to the the realities we humans find so difficult. These words from the New Testament have been somewhat over-used at weddings, and we we can be de-sensitised to their astonishing worth:

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonour others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails.

Rejoice!

 I’m sure this could have done with some proof reading, so please don’t dwell on my errors!  Write to me instead: