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