Rend Collective - My LightHouse (Lyric Video)

A new day - 27 May 2014

2 Sa-9:3  The king asked, "Is there anyone left from the family of Saul to whom I can show some godly kindness?" Ziba told the king, "Yes, there is Jonathan's son, disabled in both feet."

2 Sa-9:13  Mephibosheth lived in Jerusalem, taking all his meals at the king's table. He was disabled in both feet.

2 Sa-19:26  "My master the king," he said, "my servant betrayed me. I told him to saddle my donkey so I could ride it and go with the king, for, as you know, I am disabled.

Job-29:15  I was eyes to the blind and feet to the disabled,

Isa-35:6  Disabled men and women will leap like deer, the voiceless break into song. Springs of water will burst out in the wilderness, streams flow in the desert.

Mat-11:5  The blind see, The disabled walk, Lepers are cleansed, The deaf hear, The dead are raised, The wretched of the earth learn that God is on their side.

We are all disabled – but we are set free by the grace of God through the blood of Jesus. Jesus our Caregiver, our Strength, Jehova Jireh – our Provider!

Today is a new day, today is a new beginning – all is well…

Grace

I was lost when You found me here
You pulled me close and held me near
And I'm a fool but still You love
I'll be a fool for the king of love
He gave me wings so I could fly
And gave me a song to color the sky
And all I have is all from You
And all I want is all of You

It's grace, your grace
I'm nothing without YouYour Grace, Your grace
Shines on me

And there've been days when I've walked away
Too much to carry, nothing left to say
Forgive me Lord when I'm weak and lost
You traded heaven for a wooden cross
And all these years You've carried me
You've been my eyes when I could not see
And beauty grows in the driving rain
Your oil of gladness in the times of pain

Your grace, Your grace
I'm nothing without You
Your Grace, Your grace
Shines on me 2x

oh yeah

Shines on me, shines on me
Your Grace Shines on me
Shines on me, shines on me
It's Your grace 2x

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Songwriters
SMITH, PATRICK JOSEPH PAUL / JAMES, BRETT / JAMES, LEANNA

Read more: Michael W. Smith - Grace Lyrics | MetroLyrics

Double Exposed

DOUBLE EXPOSED

Durban photographer Angela Buckland has teamed up with social scientists to give a ground-breaking new take on disability, in a book inspired by raising a special-needs son.  She speaks with Glynis Horning.

“Every parent’s secret dread is a dodgy child,” says Angela Buckland, as her 9-year old clambers happily onto husband David’s lap, then pokes compulsively at the top of his head with a pencil.  She’s smiling when David leads the child firmly away, but tears film her eyes.

It’s Angie’s combination of candour and caring that gives her words, like her photographs, such power.  Both are caught between the covers of an extraordinary new book out this month, Zip Zip My Brain Harts, with commentary by Stellenbosch psychology professor Leslie Swartz, his research assistant Kathleen McDougall and Human Sciences Research Council (HSRC) researcher Amelia van der Merwe.

In the foreword justice Albie Sachs, who lost one arm, links the book’s conception to the “democracy of the disabled” that he joined in 1990, when he was asked to advise on advancing the rights of the disabled, and confronted his condition for the first time.  The book was born seven years later – with Nikki.

“He was our first child and we were euphoric, “says Angie.  She was 35, a respected photographer, and her architect husband, David, was 40.  “We’d been married for nine years, we had a dog, a house; this was the natural next step, he says wryly.  Angie had a perfect pregnancy culminating in a home birth with a trusted midwife.  “But after a few hours the labour stopped.”  A dash to the hospital followed, and 36 draining hours later, Nikki arrived.    

“Though Nikki weighed just 2,7kg, he seemed fine to us but we did not realise what we were in for.  Nikki was a fussy baby, who hardly slept, but a paediatrician gave him the all clear at 10 days, and two months passed before their midwife suggested something might be amiss, and recommended a homeopathic doctor.  “It was when the doctor told us to take Nikki immediately to a specialist paediatrician that alarm bells went off”. 

 Zip Zip

Endless tests and consultations with geneticists and other medical professionals did not even bring the comfort of a diagnosis: Nikki’s disability has no name or known cause; he’s simply described as “low functioning.”  “It was all so alienating, so terrifying,” says Angie.  “From having them carry our baby off screaming to take blood from his jugular (no other vein was big enough), to answering endless – painfully intimate – questions about our families and ourselves.  No one wanted to comment.”  The first real guidance she and David received was when one specialist gave them the number of a mother of a severely disabled child.   “She’d put her kid in an institution, a route we would not go”.

It was another parent who provided what Angie and David felt was the best way to proceed.   “Jenny Buckle, a Cape Town mother of autistic triplets, had researched all possible approaches, and concluded the best is to try to recover your child with intensive tutoring and stimulation.  Parents themselves can’t do it – it’s too gruelling and we need to focus on parenting.” says Angie.     

She found two young tutors and arranged for a retired psychologist friend to train her and David in methods most helpful for Nikki.  His biggest problem is non-compliance.  He won’t listen and is tactile defensive; he struggles with sensory overload. 

Nikki responded so positively to the intense behaviour modification programme that he was able to attend an ordinary preschool for a year.  But when other children progressed he lagged behind, missing all major milestones.  At 9, he still has the mental ability of a 3-or 4-year old.  “One of the hardest parts of having a child like Nikki is accepting there can be no proper “recovery” says Angie softly.  It’s learning to let go, and just do your best”.

Snap Snap  

 Part of Angie’s own way of coping has been to use her photography to process the bewildering complexities and overwhelming emotions of their situation.  In the first series in her book, she superimposes clinical X-ray images of her son’s physical idiosyncrasies over tender portraits of him, highlighting the difficult relationship between the family and the medical profession. 

As one mother puts it in the book, “I mean, I think our son is so handsome and then the doctor just ripped apart his face: “He has all these dimorphic features.  His eyes are widespread.  He has no bridge on his nose.  His ears are too low.  “I felt like I wanted to wring my own neck because I would look at my son and find myself thinking, oh, my God, he does look like that”    

In a carefully researched but unusually empathetic commentary, Swarz, McDougal and Van der Merwe say that parents frequently find the medical way of seeing and dealing with disability dehumanising.  This feeds into insecurities and fears – mothers especially are under great social pressure to produce a “perfect child” as part of what is seen as the “women’s” role.

But while we’re brought up to believe medicine and science should be able to fix anything, they say, the reality is that doctors cannot cure everything.  What doctors’ often then do is “try to do more and more investigations to find a cause or cure when they suspect – or even know – this quest is hopeless.  Or they may protect themselves from a sense of hopelessness and despair by trying to cut off emotionally.

“What we need to learn from, “conclude the researchers, “are those encounters where somehow both the parents and the doctor get it right – where it’s not about fixing problems, but about working together in a constructive, respectful and helpful way.”

Until then, the formal medical approach leaves parents confused and emotionally bereft.  It may also encourage the age-old idea of disability as flawed and freakish.

“But what if disability were considered ordinary?” the researchers suggest.  “What if it was considered not so much a sign of incontrovertible difference, but just one among many differences that there are already between people?” 

It’s this sense of the extraordinary as ordinary that Angie set out to capture in her second series – photographs of clothing made or altered to hide children’s differences, but also to help them cope with their physical challenges.  Instead of shooting garments like this as objects signifying otherness, “perhaps even shame,” Angie opted for a more practical approach.  “I was very aware of the notions of idealised childhood in Pampers and chain store ads.”

For the third and final set of photographs in her book, Angie worked with her family and five others to interpret different aspects of their lives with disabled children.  “Everyone’s situation is different depending on the severity of the diagnosis” she says.  “The only certainty is uncertainty”.

Singed Wings

In varying degrees, however, every family must deal not just with the gruelling daily challenge of parenting but with guilt and blame.  “Family members start looking down on you”, says one mother.  “I have had some look at me and say, “What did you do when you were pregnant?”

Then is the sorrow for what might have been.  As another parent put it “It’s not just the grief of losing the child you dreamt of, but also the parent you dreamt you might be”.

What has been described as the “trauma of dashed expectations” is more complicated than grieving for a child who has passed away, say the researchers.  “The child who has “died” for parents of disabled children is imaginary, so they do not get the ritualised community support that people receive when someone actually dies”.  Instead they’re often encouraged to focus on the “specialness” of their child, to the exclusion of expressing emotions like anger or frustration.

“But you learn to survive – you have no choice, especially when you have a second child”, says Angie.   Nikki’s sister Christine was born 18 months after him, and is “whole and bright and very beautiful.  This is all hard enough for her, and it will get harder when self-consciousness sets in.”

Already she must contend with disapproving stares as Nikki barks in public and runs out of shops with sweets stuffed down his shirt.  In academic literature, say the researchers, parental grieving was understood to progress through shock, denial, anger and depression before acceptance with “realistic caring for the disabled child.”

But it is no longer believed to be a simple linear process – the stages may not always run in the same order, and they may return.

“Nikki is so dear, but living with him is a work in progress, says Angie as Nikki flits by.  Adds David: “Sometimes I see him as an angel from heaven that singed his wings on the way down”.  All they and many parents in their position want, they say, is for their children to be accepted and acknowledged, and have access to support, resources and occasional respite.

“We once holidayed in the fishing village of Arniston, where the local community embraced Nikki like one of their own, taking him off to play”.  On the night we left, the village kids came and sang songs about their own problems, like poverty and unemployment, just as they’d shared in ours.  There’s nothing more healing than honest exchanges and empathy” says Angie.       

           Article from Associated Magazines August 2006

Anke en Markus - just after we were told the truth!

A Challenging Sunday

Sunday 18 May 2014

When one is in full time long term care giving (33 years to be exact) – it becomes necessary to learn how to navigate life – over and above the normal daily stuff – all over again, from day to day to day. Care giving is a full-time job. It is exhausting – physically, emotionally, financially, socially. Finding time to take care of one’s own needs is not always an option. We literally haven’t had a decent holiday in all these years…

Today Sunday 18 May 2014 I had a reality ‘attack’. I had moments of overwhelming fear about our  reality we face on a daily basis – the exhaustion we have to deal with from day to day… feeling so very alone to the point of thinking and believing that we’ve been abandoned by mankind on our journey? Worried about the effort/hours/energy we both have to put into earning enough money to keep our boat afloat – salaries, nappies, medical, school fees… the future  

There are countless tasks to attend to when caring for another person, and at the end of the day there is rarely time for other relationships. Caregivers often find that their relationships suffer because they cannot find time to tend to them. Caregivers therefore need family and friends who reach out to them, unconditionally.

Yes, honestly – on a day like today I feel that we have been abandoned.  I believe that I put so much effort into building and maintaining relationships. But why is it that I (on a day like today, when I have such a great need for support/intersession/reaching out), just don’t feel at liberty to phone someone and ask for some kind of support? I went cycling midday today (had a good long ride), I was crying as I was cycling up hills today. It felt like a condensed version of my life in the moments I battled uphill (heartbreak hills?). And yes I felt sorry for myself, I cried for me… in fact I thought terrible thoughts today. Tania Clarence in London also crossed my mind...    

Getting a break. We need a break. We desperately need a serious break. But how? And with what?

Guilt. Between bathing, dressing, feeding, cutting hair nails – fighting athletes foot, worrying about Markus not sleeping – balancing the budget, and all the other odds and ends that go along with taking care of a disabled adult person, I often feel overwhelmed. The urge to quit is common, as well as the feelings of guilt that inevitably follow if you think that you should spend more time with your disabled children. Caregivers confront, over time (with less intensity as time passes), the living death of the child not growing into the adult we dreamt about, working hard to make  peace with the ‘broken’ dream, as well as the ebb and flow, of the sometimes intense unplanned grief. "It takes reaching out" – and to reach out takes a whole lot of effort in itself.

Experts use the term "caregiver burden" for the on-going low frequency emotional and physical stress of providing full time care to a severely disabled family member. In short, the burden remains squarely, on the primary caregiver. Caring for a disabled child is a highly demanding, tiring and emotionally exhausting job.

Anke & Markus – Mitochondrial disease

 Mitochondrial diseases are a group of disorders relating to the mitochondria, the organelles that are the "powerhouses" of the eukaryotic cells that compose higher-order lifeforms (including humans). The mitochondria convert the energy of food molecules into the ATP that powers most cell functions.

Mitochondrial diseases comprise those disorders that in one way or another affect the function of the mitochondria and/or are due to mitochondrial DNA. Mitochondrial diseases take on unique characteristics both because of the way the diseases are often inherited and because mitochondria are so critical to cell function. The subclass of these diseases that have neuromuscular disease symptoms  are often referred to as a mitochondrial myopathy.

1. Mitochondrial inheritance

Mitochondrial inheritance behaves differently from autosomal and sex-linked inheritance. Nuclear DNA has two copies per cell (except for sperm and egg cells). One copy is inherited from the father and the other from the mother. Mitochondria, however, contain their own DNA, and contain typically from five to ten copies (see Heteroplasmy), all inherited from the mother  (for more detailed inheritance patterns, see Human mitochondrial genetics). When the mitochondrion divides, the copies of DNA present are divided randomly between the two new mitochondria, and then those new mitochondria make more copies. As a result, if only a few of the DNA copies inherited from the mother are defective, mitochondrial division may cause most of the defective copies to end up in just one of the new mitochondria. Mitochondrial disease begins to become apparent once the number of affected mitochondria reaches a certain level; this phenomenon is called 'threshold expression'.

Not all of the enzymes and other components necessary for proper mitochondrial function are encoded in the mitochondrial DNA. Most mitochondrial function is controlled by nuclear DNA instead.

Mutations to mitochondrial DNA occur frequently, due to the lack of the error checking capability that nuclear DNA has. This means that mitochondrial disorders often occur spontaneously and relatively often. Sometimes the enzymes that control mitochondrial DNA duplication (and which are encoded for by genes in the nuclear DNA) are defective, causing mitochondrial DNA mutations to occur at a rapid rate.

2. Defects and symptoms

The effects of mitochondrial disease can be quite varied. Since the distribution of defective DNA may vary from organ to organ within the body, the mutation that in one person may cause liver disease might in another person cause a brain disorder. In addition, the severity of the defect may be great or small. Some minor defects cause only "exercise intolerance", with no serious illness or disability. Other defects can more severely affect the operation of the mitochondria and can cause severe body-wide impacts.

As a general rule, mitochondrial diseases are worst when the defective mitochondria are present in the muscles, cerebrum, or nerves, because these are the most energy-hungry cells of the body.

However, even though mitochondrial disease varies greatly in presentation from person to person, several major categories of the disease have been defined, based on the most common symptoms and the particular mutations that tend to cause them.

3. Inheritance patterns

Because mitochondrial diseases (diseases due to malfunction of mitochondria) can be inherited both maternally and through chromosomal inheritance, the way in which they are passed on from generation to generation can vary greatly depending on the disease. Mitochondrial genetic mutations that occur in the nuclear DNA can occur in any of the chromosomes (depending on the species). Mutations inherited through the chromosomes can be autosomal dominant or recessive and can also be sex-linked dominant or recessive. Chromosomal inheritance follows normal Mendelian laws, despite the fact that the phenotype of the disease may be masked.

Because of the complex ways in which mitochondrial and nuclear DNA "communicate" and interact, even seemingly simple inheritance is hard to diagnose. A mutation in chromosomal DNA may change a protein that regulates (an increase or decrease) the production of another certain protein in the mitochondria or the cytoplasm and may lead to slight, if any, noticeable symptoms. On the other hand, there are some devastating mtDNA mutations that are easy to diagnose because of their widespread damage to muscular, neural, and/or hepatic (among other high energy and metabolism dependent) tissues and because they are present in the mother and all the offspring.

Mitochondrial genome mutations are passed on 100% of the time from the mother to all her offspring. Because the mitochondria within the fertilized oocyte is what the new life will have to begin with (in terms of mtDNA), and because the number of affected mitochondria varies from cell (in this case, the fertilized oocyte) to cell depending both on the number it inherited from its mother cell and environmental factors which may favor mutant or wildtype mitochondrial DNA, and because the number of mtDNA molecules in the mitochondria varies from around two to ten, the number of affected mtDNA molecules inherited to a specific offspring can vary greatly.

Solist and Choirs: Ukuthula

Ukuthula - peace/silence - on this earth of sins - saviour - to overcome - to believe - receive consolation - to say thank you - gratitude...

Courage

Jos-1:9  Haven't I commanded you? Strength! Courage! Don't be timid; don't get discouraged. GOD, your God, is with you every step you take."

Isa-35:4  Tell fearful souls, "Courage! Take heart! GOD is here, right here, on his way to put things right And redress all wrongs. He's on his way! He'll save you!"

Mat-9:21  She was thinking to herself, "If I can just put a finger on his robe, I'll get well." Jesus turned--caught her at it. Then he reassured her: "Courage, daughter. You took a risk of faith, and now you're well."

Mat-14:27  But Jesus was quick to comfort them. "Courage, it's me. Don't be afraid."

Act-15:32  Judas and Silas, good preachers both of them, strengthened their new friends with many words of courage and hope.

Php-1:28  not flinching or dodging in the slightest before the opposition. Your courage and unity will show them what they're up against: defeat for them, victory for you--and both because of God.

Tit-2:15  Tell them all this. Build up their courage, and discipline them if they get out of line. You're in charge. Don't let anyone put you down.

 

Donderdag 09 Januarie 2014

Ek het laasnag ‘n droom gehad. Ek en ‘n paar manne vriende was oppad na die een of ander bestemming, ons het onder andere onderdeur ‘n aquaduct gery en die pad wat ons gery het, het diep in die aarde in geval, so asof ons deur ‘n tonnel ry wat al nouer en nouer en dieper raak – en ek was nogals claustrophobic. Nietemin het ons anderkant uitgekom en op die een of ander hoë gebou se balkon beland – vandaar kon ek laer af op ‘n ander vloer – ‘n rowwe ou met tatoes sien, hy het op een plek stilgestaan en was besig – op die oog af met iets onaanvaarbaars wat gelyk het of hy die een of ander dier mishandel – ek het hom berispe en hy het stadig in ons rigting omgedraai en ek sien toe dat hierdie man krippel was (gebroke was?).

 

Die krippel man het toe na my toe uitgeroep en vir my gevra wat my probleem is. Julle manne saam met my het vorentoe beweeg om die besigheid beter te beskou en ek sien toe tot my verbasing dat julle almal ook – soos hierdie man met die tatoes – gebreklik is. Ek was verbaas en kon amper nie glo dat julle ook gebreklik was nie – ek ken julle al so lank en kon nie glo dat ek dit nognie raakgesien het nie. Ek het gehuil en julle gesmeek om asseblief te sien en te besef dat ek lyk miskien oukei maar dat ek is baie meer gebreklik (gebroke), as wat jy kan sien…julle het my omhels en getroos en gesê dis oukei…

 

Ek is dankbaar dat ek jou mag ken, dat jy bemoeienis met my maak, dat jy nog altyd binne jou individuele vermoë (binne jou eie beperkinge), na my uitreik en vir my van jouself gee (soos jy kan). Soos ek genoem het, het ons almal ons eie unieke challenges. My probleem is sekerlik (van tyd tot tyd), gesetel rondom my verwagtinge diep binne in my – soms sekerlik menslik gesproke onrealisties in terme van my buitengewone omstandighede.

 

Die een probleem wat ek weet ek het is om soms te verwag mense moet outomaties weet wat in my lewe en in my hart aangaan/gebeur – en ek besef dis onbillik van my. Dan battle ek ook die universele manne handicap van cowboys don’t cry (alhoewel ek in privaatheid baie meer huil – glo ek – as die norm vir mans?).

 

‘n Behoefte wat ek veral het is om gehoor te word (het ons ne almal maar 'n behoefte om gehoor te word nie?). Om net so nou en dan my ervarings te deel (en om ook joune te hoor), om met iemand wat ek vertrou te kan incheck en die stand van die verloop van my storie te kan deel soos dit ontvou – sonder oordeel, sonder om te dink jy moet met oplossings vorendag kom. Dan het ek ook ‘n behoefte vir intersessie, omdat ek soms voel ek het nie eers krag om met die Here te praat nie. Soms is die een iets waarna ek die meeste van my dag uitsien om net in die bed te kom...

 

Ek veg (soms), teen uitputting (meestal) op alle terreine, en ek is nog steeds versigtig om my sake sommer net op die tafel neer te sit want ek is bang ek verjaag jou deur my burdens/behoeftes van my hart bloot te lê – dat ek as klein gelowig oorkom/voorkom, dat ek bloot net nie genoeg vertrou op die Here nie?  Soos een van julle genoem het, van die boek wat hy gelees het - dat jy hou liewer jou bek want jy wil nie verwerp word nie?

 

Ek mis die Here (by geleentheid), ontsettend baie (ja dit klink ook vir my absurd), Hy voel soms vêr weg van my daaglikse grind – gedagtig dat ek (soos jy), net ‘n mens van vlees en bloed is, wat daagliks gekonfronteer word met my beker wat ek net eenvoudig MOET ontvang (soos jy jou beker daagliks ontvang). Ek kan dit nie laat verbygaan nie (al wil ek soms daai beker hoe graag by my laat verbygaan!). Ek het die afgelope paar maande al ‘n paar keer gedink aan handoek ingooi – maar hoe? En wat dan van my journey? Ek is ook bang ek mis uit op my ervaring?

 

Moet asseblief nie wat ek hier sê veroordelend lees of ontvang nie – sien dit eerder as ‘n poging van my kant af om myself beter te verstaan binne my konteks, binne my verhouding met die Here (op hierdie punt), en my verhouding met jou. Bid vir my – tree vir my in – dra my op – lig my op, as jy kans het – and when I cross your mind.  Ek doen dieselfde vir jou.

 

Weet net dat ek jou buitendien waardeer vir wat jy in elk geval vir my beteken.

 

Rou van 'n kind wat sterf...

Ek lees nou elke week n verskeidenheid tydskrifte, danksy ‘n geskenk om dit aanlyn te kan doen. In Huisgenoot van 17 April 2014 lees ek die artikel oor Rick & Kay Warren se seun se dood (P108/9), wat my laat dink aan ons eie situasie met Anke en Markus. Kay Warren noem dat die mense wat met hulle empatiseer – se wêreld het nie op ‘n ‘’aaklige, katastrofiese manier’’ tot stilstand geruk nie. ‘’Hul lewe gaan aan…’’

Professor Rabe van US sê ook ‘’na enige verlies is ‘n mens se lewe nooit weer dieselfde nie, en na die verlies van ‘n kind verander die ma en pa se hele identiteit’’.

Ons kinders is altwee ‘’dood’’ (nie letterlik nie maar figuurlik), toe Anke so omtrent 2 ½  jaar oud was. Op hierdie dag, omtrent 30 jaar gelede – is ons meegedeel dat Anke en Markus erg gestremd is, dat hulle nooit normaal sal ontwikkel nie (ten spyte daarvan dat ons seker in erge ontkenning geglo het hulle is en was en sal oukei wees – tot en met die oomblik van hierdie waarheid?).

Dit was op daardie dag – oppad terug uit Randfontein Potchefstroom toe,  dat ons wêreld  op ‘n aaklige, katastrofiese manier tot stilstand geruk is. Ons moes langs die pad stilhou vir wat na baie lank gevoel het, ons kon netnie ophou huil nie. Ons lewe is en was eintlik nog maar altyd, van daardie dag af, betreffende Anke en Markus – soortvan half in die lug, onvas, onseker, party dae gevul met ongelooflike vrees soos ons ouer en ouer word.  

Ons het ons droom kinders op daardie dag van waarheid verloor. Ons het daardie dag onwetend deel geword van die vreemde subkultuur van gestremdheid en die wreedheid van die lewe jeens andersheid. Jy word ongevraag deel van hierdie subkultuur se vereensaming, verwerping, selfs minagting. Dis soms ‘n daaglikse geveg om nie tweedeklas te voel nie, om by te hou met alles bekostig – hulp, weggooi doeke, medies. Die landskap van wie en wat ons is verander steeds elke dag, die konfrontasie deur jou daaglikse realiteit is soms meer as oorweldigend.

Die verlies van ‘n kind aan die dood (letterlik), is verskriklik.

Die verlies van ‘n kind wat jy vanaf konsepsie opgedroom het en dan verloor jy daardie kind net toe jy dink alles is en sal oukei wees? en in sy/haar plek is daar ‘n vreemdeling wat nog nooit vir jou ma of pa kon sê nie? dis ‘n langdurige eensame rou proses van ‘n ander kleur… dankie aan ‘n ieder en ‘n elk wat ons met liefde, genade en geduld liefhet en saam met ons stap