Fundraising

24 August 2014

Dear Fundraiser           

I hope this e-mail finds you well.

May I first of all say that I so appreciate and admire you and your work as a fundraiser – your zest, energy, ideas! – and how grateful I am for your hard work in this regard.

This e-mail is an effort on my part to explain my sentiments regarding standing at a shopping centre entrance with a tin, collecting money.

Given my context with Anke and Markus, I sometimes experience indescribable guilt about the ‘burden’ I place onto society with my children (and often get fearful about providing for their continued care, should I die before them).

At first I thought that I should bite the bullet this time around and just do it! But I just can’t.  I experience the tin collection as standing in a public space ‘getting into people’s faces’ for money, as if they are responsible for the care of my children. I have a hard enough time as it is to not make other people ‘cringe’ about my situation or feel guilty because they have normal children! I absolutely dread this kind of fundraising!

I do not have a quarrel with those who are okay with this kind of public ‘begging’ (my perception) – be that for their own children or for disabled children in general or for whatever charitable organisation – I respect that – but I need to be shown/given the same respect for how I feel about this kind of fundraising.

I hope and trust that what ‘corporate’ money I have managed to secure for our organisation in the past (and hopefully in the future), and my work on other terrains such as the yearly fête will in some way make up for my not participating in the tin collection next Saturday.  

You know that I have always been happy to advocate for our ‘sector’ – and will keep on doing so, and I will – as always – be open to assisting where I can and with what I feel comfortable with.

Thank you for your time (and hopefully your understanding).

Regards

Pieter Labuschagne

PS. Should you have time and should you be interested, you’re welcome to visit my blog at the address below. I write in both Afrikaans and English. The blog is an effort on my part to try and understand my 34 year Anke and Markus journey better and to try and give voice to my experience, and hopefully to that of other parents as well.

 

die afgelope week - Bloemfontein toe en terug

Susan – ons waardeer jou baie. Dankie vir jou begrip. Jy verstaan/verwoord veral Markus se toestand/effek duidelik. Om hom elke liewe dag so te aanskou en soms moedeloos te voel omdat hy eintlik maar net bestaan, dat sy lewenskwaliteit hartseer is. Wat dit swaarder maak is dat mens hom so ontsettend liefhet (soos ouers hul kinders liefhet). Om maar elke dag op te staan en opnuut te besef dat dis hoe dit is, dis nie ‘n droom nie.

Ons sien uit na daai dag in die hemel as hulle ewe doodluiters na ons toe aangestap kom en hul arms om ons slaan, ons in die oë kyk, met ons praat en ons vertel hoe lief hulle ons het. Dan kan ons hopelik saam in die een of ander hemelse Wimpy sit en saam koffie drink. Saam wafels eet en mekaar met regtige fokus in die oë kyk en kontak maak… dan kan hulle ons ook vertel van hulself

Dankie dat jy die afgelope week by Anke en Markus en Alicia oorgebly het. 

pynlikste ervaring

Rosemary het my vroeg vanoggend benoud kom roep. Ek moet kom want Markus huil! Rosemary is 'n nuwe carer, sy weet self nog nie mooi hoe alles werk nie. Sy is nuut met Anke en Markus en hulle gestremdheid. Sy het haarself boeglam geskrik.

Markus het vanoggend weer sy rare en skaars hartverskeurende droë huil gehuil.

Hy huil byna nooit nie, maar as hy die dag hierdie huil van hom huil dan is dit regtig een van die mees pynlikste goed wat ek kan aanskou/ervaar. Die beste wat ek kan doen is om styf agter hom te gaan lê om hom so te probeer troos. Ek hou hom vas, streel hom op sy wang, vryf sy rug, praat saggies met hom in sy oor, vertel hom hoe lief ek hom het - hy huil sonder trane. Ek huil met trane. Hy is ontroosbaar, ekself is hartseer verby. 

Wie weet wat in sy siel en gees gebeur as hy so huil? Huil hy oor hy in sy kamer vasgekeer is, huil hy oor die hartseer van die mensdom, huil hy want hy kannie praat nie, kannie loop nie. Huil hy oor die mooi dag buite by hom verbygaan? Hierdie huil van hom het seker nog net so vier keer gebeur. Hy sal vandag naby hierdie huil van hom bly. 

Here wees ons genadig! 

Thoughts on feelings

‘No man can come to know himself except as an outcome of disclosing himself to another person.’     The Transparent Self – Jourard. S. 1971

Frequently, when people become aware of anxiety or fear in someone else they think that in order to be accepting, they must give reassurance by saying something like…’’Everything will be all right’’. Actually reassurance communicates your need for the person to stop having that feeling, because you are uncomfortable with their feeling/s. Reassurance can also show lack of interest in the person’s feelings and will often imply that their fear is unfounded and wrong.

Don't we all want to be heard from time to time? Friendship is also about lending an ear (again and again).

Saterdagoggend - 2 Augustus 2014

…ek word wakker in die nanag en dink aan Markus se hande toegedraai in lappe om dit uit sy mond te hou. Sy mobiliteit is ingeperk... hy is swak en gefrustreerd, hy eet sy hande…

… ek lê en dink aan my afgelope verjaarsdag en ervaar weer die beklemming om my hart van 62 word binne my Anke en Markus konteks (soos laasjaar en die jaar voor laas en die jaar voor dit), ek voel swak en gefrustreerd…

ekself wil my hande in my mond druk om my binneskreeu dieper af te druk… volgende jaar en die jare daarna? Anke en Markus... ek en Leona

… bly net voortbeur bly net voortbeur…  klou aan die lig/hemel/Jesus/hierna… nie dink aan moeg word, moedeloos word, inperking, isolasie of wegbreek nie...

Waar is die rus? waar is die rus? Is die rus elders. Waar is daardie elders? Die hier en nou is - Here soms so oorweldigend?

Sal dit help as ek net dieper lê en my oë toemaak… styf styf toemaak… ewige rus… ewige herstel. Miskien maar net die deure toetrek en wegry - en ry en ry en ry. Miskien is alles oukei as ek terugkeer... dalk is alles maar net n droom

… Kom dagbreek kom, net regop kom op gelyke grond. Maak tee, sit in die donker sitkamer. Stilte stilte stilte… tee - soet tee op my tong. My kop, my ore en my binnekant raak stiller, meer draagbaar… dagbreek kom. Kom dagbreek. Lig  lig lig… die nag vervaag… gister vervaag vandag lê voor

…my alleen onbekende reis (steeds onbekend selfs vir my), hou net aan en aan en aan… staan op sit die beker in die wasbak… is hierdie dag nou gebreek?

…vandag is ‘n ander dag dis ‘n heel nuwe dag , n dag van vooraf…amen

Cameron von Berg

17 March 2014

Dear Mark, Chantal, Yvonne & kids

I am not kidding you but you were in my thoughts since yesterday, and when Yvonne phoned me this morning I could almost not believe it as I was planning to phone you today sometime.

This is a sad day… Sad because you/we will miss Cammy, he was such a beautiful son, brother, boy, friend. Although he never ever spoke one word, never walked, never argued, he helped us all think about life and living. He helped us ask many a question about our own existence, our own motives, our own sense of giving, caring, loving, our endurance… going the distance.

This is a happy day... because I believe Cammy has been released of his earthly existence where he was only serving the people close to him. I believe he is now in heaven (that is what I believe), where he will be enjoying a new restored life, playing, running, walking, talking, eating – doing all the things he could not do when he was with us, he has been delivered from a restricted earthly life into a unrestricted heavenly life! He is happy! We should also be happy for him.

I salute you for taking care of Cameron. In fact I want to thank you on his behalf. You were exemplary parents. You did your best and I pray God’s blessing over you and your children today and for ever more. Take care and I hope to see you again sometime.

Hugs to you all.

Pieter & family.