Monday, November 16, 2015

Felix is seven

No I can't believe it. Every day he is loosening up and away from me, reminiscing with me about how "shy" he used to be and laughing at himself, getting further into a world of school rules and new sports and budding social skills (at which he doesn't suck).

Before my eyes Felix has become a boy whose face is all angles. He loves Minecraft - I don't even understand what it is. Right now he is reading Diary of a Wimpy Kid to Richie, which is the best sight in the world. I hope he loves reading for a long time to come. (I started reading Diary of... to the kids one night when we didn't have anything else, discovered it is about a middle school child on the verge of adolescence, but Felix thought it was the funniest thing he had ever read and he picks it up from time to time to do a few pages.) Same kid who was being assessed by the ed psych at the beginning of the year for reading issues. He has done so very well.

Let's tell the story of the Zingo. Felix saw, at my cousin's house, an electric scooter and craved it with his whole little being. We looked it up, saw that the mini version is R1900 and told him he would have to save money for it. Since July, Felix has saved. We even had to start giving pocket money (R20 on Fridays) so that his kitty could grow. Every tooth, every paid chore, every source of funds went into his lock-up safe money box. Grandpa John delivered his birthday present early - R200 in coins, in bank bags. And before too long Felix had well over R1000. I was proud of him even if I didn't want to hear the word Zingo ever again. He got a Zingo for his birthday. Well done buddy.

Felix had a birthday party at the ice rink in Kempton Park (very cool venue BTW). He was charmed at how many of his classmates arrived. He didn't get off the ice for three hours. These were happy things. (Less happy: the fact the party was originally at the Sandton Fire Station, until there was an armed robbery during a party there, and ours was cancelled five days before the event... one of those "In SA" moments.)

Now we are saving for an Xbox to play Minecraft on... and I sense this is a beginning of a trend of electronics as gifts.

Good news on Richie's side: he is dry overnight! One of the least important inconveniences of special needs parenting, in my experience at least, is that the hassle and the vigilance factors stay longer than with other kids. I mean that I am packing bags filled with catheter paraphernalia and keeping a 4-hour and 48-hour timer in my head at all times (these are the intervals between pisses and shites for Rich). In that respect, I still feel like a baby's mom with my nappy bag. Richie is five but he gets tired walking long distances and his gait is slow - we do a lot more carrying than is the norm at 5. He can't easily get into and out of the car nor do up his own seatbelt (although he is just learning that). Things generally take longer. But the delightful thing is that after a visit to the incontinence clinic and the unfortunately named Dr Fockema. Richie's dosage of Vesicare has been upped to 10mg, and he is thriving on it. He is dry for longer (Vesicare is a bladder relaxant and it just basically stops it from contracting). I saw this and tried him out overnight - he is consistently dry. He sleeps in pyjamas now, bare-assed like any other kid. This makes me extremely happy. Also: we used to use padded undies and pads - and probably still will, for school and elsewhere where it may be more crucial to appear dry - but this past weekend at home was spent in a pair or two of Felix's old jocks. Normal. boy undies with Spider-Man pics on. It's small but it's big.

Felix quotable quotes - have I told the one about "no rest for the weekend" yet? That's Felix's take on a busy, party-filled few days, which he would rather have spent at home.
And then, I mean, between me and Sean the kids never stood a chance of not being intrigued by the power of swearing, but are they enjoying trying out expletives or what! I'm afraid I just can't muster many fucks to give about "fuck" so I ignore and let it slide. But the kids keep angling for a reaction, such that Felix told me with delight the other day: "Mommy.... if you take the word SHEET and you take away the EE and insteaaaad... you put an I... you get...?"
Heh. At least he is practising his spelling.
Also, he whines about having to brush his teeth the other day.
"That just makes me want to say the F word. In my head!" he moaned.
"Ok, say it in your head," I advised.
"It's not really working. I need to say it out loud," he retorts.
I happen to know how he feels.

Friday, October 16, 2015

A very naughty boy

Among the crosses some disabled kids seem to have to carry is the disproportionate compulsion to miracle-monger.

After my morning with Richie, I would just like to assure all and sundry:

Friday, October 9, 2015

School concert and Grade 1 certificate

School sports day

Apparently a phrase that raises anxiety levels for man: school sports day. For me, historically, not so much. During my schooling, I (believed I) sucked, and my parents were neutral about it, so I ran the race or two I was instructed to, came second-last to last, and that was that.

Felix is surprising me by being far more willing to experiment with school sports confidently than I ever was. He has thrown himself into tennis, basketball, athletics, soccer, hockey - whatever's on offer, he will generally try. Even netball, to the amusement of the Grade 2s who haven't internalised the messages opposing gender stereotyping...

Felix isn't "good" by any stretch of the imagination, but he ran his race at school sports day and was pleased that he has improved from 7th place to 6th (out of 7 runners. In the C team. Heh.) I love that about him and hope it lasts as long as possible.

A far more complicated situation is our Richie, who participated in his first school sports day this year. For the first time we had school sports day anxiety and I for one didn't know how to manage it. "Perhaps we'll just bunk," I said to his teacher, knowing we wouldn't. But we had no game plan and no idea how Richie was going to respond to the day. Both of us sucked in our stomachs and tightened our jaws in anticipation of not only the day but the days following: Richie might go postal on us at any moment, as past experience has proven. I am still walking on eggshells with him since 2014, the Year of No Speaks, when Richie retreated far into himself. In contrast, 2015 so far has been far more The Year Of Loud Shrieks, which is preferable but also wearying.

It was entirely possible that Richie would have an emotional reaction to the fact that school sports days are set up to be competitive and his body is not equipped to be competitive in that environment.

What actually happened: Richie lined up with everyone else and began to ran his race. The preschool races are a series of tos and fros with beanbags being dropped off and collected at various stops. Mercifully it is chaotic and nobody can really keep track of who is at what stage of the race.

Now you know what happens when you see a kid in splints making a massive effort to run a school race. Unless you are the kind of person who has never watched a cat video on Facebook or doesn't get goosebumps during the anthems in a RWC final, your empathy switch is seriously activated at this point. Your mind starts to formulate thoughts about the nobleness of the human spirit in the face of adversity and the overcoming of limitations despite the odds, until your mental soundtrack is indistinguishable from a financial services advert in which the kicker is that the guy is blind.

If you are a cynical-bastard couple of parents such as Sean and I there is some cognitive dissonance now. You are proud of your son; you are tearing up as you see him lurch and hurl himself across a field; but you know he'd rather you STFU and just see a kid participating in a race.

This was brought home to me such: an empathy-switch-enabled teacher helped Richie during his first race by making his course a little shorter so he could finish more or less with the other kids. Totally normal, sweet and kind - and disadvantage-cancelling - thing to do.

But Richie prefers a different thing.

The second race in which Richie participated was the relay. I went to sit with him and checked that he knew what to do - take the baton, run across, give it into the hand of the child waiting. "Yes," he confirmed that he understood the deal, "but I don't want help."

"I'll run beside you and make sure nobody helps," I said.

So Richie jerked and hurtled across the field at a not-inconsiderable speed and did his relay, while I jogged alongside (to the most thunderous applause that has ever accompanied a race I was not-participating in as everybody cheered my little boy along) and thought about what he had said.

I think Richie has figured that he is going to come stone last but already, at barely 5, he doesn't care. He has also figured that it feels better for him, inside, to be allowed to do his thing, his way, without the rules being changed for him. He doesn't want our tears or our too-loud applause - something his teacher has always understood instinctively about him. He is not a tragedy, he just can't really run very well.

That's why everybody emoting all over the place over that one picture of Oscar P as a kid being carried home from the swimming pool by his friends is so annoying. It's not a testimony to the kindness of children, it's not a message to adults worldwide, (plus the dude turned into a killer lest we forget), it's just a couple kids dragging their friend home the most efficient way, because fokkol legs. The closer we are to the situation, the less we see only, overwhelmingly the disability and the more the elephant shrinks. I wish Richie may more elephant-shrinking years of school sports days. Pretty soon (if he isn't already) he'll just be that wonky kid, alongside the cross-dresser and the kid with autism and the kids who don't match their parents' skin colour, and so on, and so on. And that gives me calm.

And that is how, for us, School Sports Day became just another school sports day, again.

Tuesday, July 28, 2015

Shelving issues

We're building Legos, which Richie loves doing. But he loves tinkering with little pieces, me, I like to construct the thing according to the instructions in the box and get it 100% right, squashing his nascent creativity and preparing him for a life of corporate drone-dom.

These orientational departures led me to muse, speculatively, that wouldn't it be a good idea to have some shelves in Richie's room where he could display the fire engines, cement mixers, teenage mutant ninja turtle trucks, diggers, rollers and motorbikes he's made?

Felix - a stickler for detail, and with his sharp eye for spotting the problem inside the solution, reminds us that there are no shelves in Richie's room.

"Perhaps Daddy could build some," I say.
"Or even Grandpa John," says Felix.
I agree and say that in fact grandpa taught daddy, that's why he knows about constructing stuff. And, maybe one day daddy will teach you guys, I add.
"And maybe one day we will teach our chil..." says Felix, but stops himself. "Oh, no, but I don't want to get married."
This raised more questions than answers for me, so naturally I started bombarding my child for information.
"Why don't you want to get married?"
Felix: "Too much..."
"BALLET DANCING," chips in Richie, with all the disgust a four-year-old body can muster.
At this point there are at least four logical fallacies I want to pursue, but one at a time, Margot, one at a time.
"Yes," agrees Felix. "I don't want to dance in front of all those people."
I have no idea where they have formed their idea of weddings.
I say you don't have to dance at your wedding. It's your wedding so you get to choose if you even want to dance at all, and it certainly doesn't have to be BALLET. Nor do children and marriage go together like horse and carriage, they are separate life events. You don't have to be married to have children, and vice versa, (especially if you like your vice versa, although of course you CAN get married in that case in South Africa) and some people are even married but decide not to have any children at all.
Oh, says Felix.
Nobody can say I'm not doing my bit for legitimising a range of life choices to my children. But anybody who listened to them would swear I forced the most picket-fenced expectations on them. Where did they get these ideas? It appears you can send them to the most We-like-diversity-a-lot-and-we-like-a-LOT-of-diversity school in the world, and Disney still wins.

Monday, July 6, 2015

A Paris minibreak

We went on a Paris break without the children.

These things become possible eventually. As my mom (who shouldered a large part of the childcare burden along with Grandpa John and Auntie Queeny) said, every passing year will make it easier still.

Four nights without the kids. It is terribly indulgent to fly overseas for four bloody nights but hey. Sean had a conference to attend, I merely popped round for the romantic break afterwards. Richie and I struggled the first night apart - apparently Richie cried and couldn't go to sleep, ("Mommy makes me happy" he told Aunty Queeny) and it was pretty much the same for me on another continent.

But then I think we both settled, and were able to have some fun too. Sean was like a crazed Red Bull-addled Energiser bunny and marched me all around Paris. He was amazing. We rented an apartment and by the time I got there Sean knew routes, shops, everything. He met me at 7.30AM in front of Notre Dame the day my flight landed - can you just imagine anything more straight out of a romcom?

We crammed in a lot of sights, which you kind of have to do if you are spending only three days. We got our fill of churches and museums and beautiful buildings and walks along the Seine and drinking very expensive coffee in sidewalk cafes being served by handsome waiters oozing hauteur. We drank stand-your-spoon-up-in-it chocolat at the Cafe Des Deux Magots for my birthday, after having shed a tear inside the Eglise Saint Germain (where my mom and I celebrated midnight Mass together in 2002!), and we went to the Louvre at night when it was relatively empty and we saw the Mona Lisa and several other very famous artworks (and it was amazing), and we walked to the Eglise Saint Etienne Du Mont which has a Gothic rood screen which was not dismantled during the Renaissance and is therefore now still there and beautiful. We saw van Goghs at the Musee D'Orsay. We went to the Eglise Saint Sulpice and admired Delacroix frescoes on its walls. We walked past eye-popping architecture on every block. We tried to speak French and got spotted by other Africans who greeted us with joyous recognition and who were impressed by our efforts to speak French (Cameroonians and Cote D'Ivoireans). We went to the military history museum at Invalides and saw Napoleon's tomb and distressing WWII and Holocaust footage. Europe's relationship to its last big war and genocide is interresting to me. I get the sense it is on the national consciousness and is regularly acknowledged in museums and so on, but the horror of it still does catch me. Europe also needs to acknowledge via museums and public discourse the evil it did in its colonial era and that was not something I got to see. I can understand calls for European countries to practise a TRC-style full disclosure. As we returned to SA we heard news reports of France "acknowledging" some part in mass death in Cameroon in the 50s and 60s, but unwilling to make an apology. How is it even in question that colonialism as a whole is something that should be apologised for?

Culturally I am from German and Afrikaans roots so my whole life when I have read history "my" guys have been the baddies. It's difficult (not difficult like living with families who were killed by the actions of my ancestors, obviously, just awkward difficult) to live with that every day, it is difficult to read holocaust stories, and SA history, and one should do it anyway. Coincidentally I finished reading Ben Elton's Two Brothers on the plane to France (I found it stylistically flawed but had to finish it, persuaded by the fact it is based on a true story of Ben Elton's family members. Set in Berlin, its strength for me lies in how he reflects the frog-in-pot-of-water nature of the Jewish citizens' refusal to believe the inevitable conclusion of the every increasing absurdity of their daily lives, and how he sketches exactly how, step by step, every liberty is eroded until finally even the most committed and strongest character understands that she can no longer fight this particualr machine, and resigns herself to death.) And then I started All The Light We Cannot See, along similar themes, set at least partly in Paris where we have just been, dealing with childhood and disability and war and I can see it is brilliantly written and I will probably break a little bit finishing this book (too). Sometimes the evil people do is just overwhelming.

There is a glimmer of something else I suppose. Before I left I took the kids to the Ige Age expo in Joburg, not holding out massive hope but because they were hakking to go. Richie especially, but both boys, loved it very much. Richie was entranced and made me to back again and again and again. He kept asking me "What is this mammoth thinking? What is the shark thinking? What is the sloth thinking?" I don't think he could grasp that they were machines without thought, although he had been told and accpeted it rationally. They looked so real, and of course understanding that these were models of extinct animals (and human-predecessors) which evolved into some of the animals we have today, is a tall ask for a four-year-old. (No Creationism practised in our house, or indeed at our progressive Catholic school either, I explained about evolving from the early humans we saw models of, and a few days later Richie asked me, "Mom, did you start as a monkey? Was I first a monkey?")

Richie is asking on average about 400 000 questions a day and almost all of them are complex like this. Oh he has also asked "How does the baby get out the Mommy's tummy?" so the kids are now well versed in human reproduction, and I am glad I got in there first before the school mates got a chance with any misinformation. Being a stickler for honesty it went like this: "Well when the baby is big enough to live outside it comes out of the mom's.... winkie.. eh, vagina."
Felix: "Does it hurt?"
Me: "Um. Yes, it does sort of."
Felix: "Whew! I'm glad I'm not a girl and I don't have to squeeze a baby out of my WINKIE!"
I then felt in the interests of accuracy I also had to explain that you can also have an operation and get the baby out via a cut in your stomach. "Then does the mom die?" Richie wanted to know.

A few days later we had the inevitable follow up:
Felix: Mom how does the seed get INSIDE the mom's tummy?
I'm glad to say I said, "The same way the baby comes out" and explained about seeds being stored in testicles and coming out the tip of the penis.

This seems to have satisfied them for now. I think I got away with a good result on that conversation, actually. Parenting points to me!

All this an aside to saying I noted at the Ige Age expo the age of the Earth: 4.6 BILLION years. I've been ruminating on this figure for days. Every death, every small tragedy in one human life, is the merest blipette in the context of the length of time life has been living and dying and killing itself off on this planet. Europe with all its civilisation and centuries to evolve democracy and forms of government and so on has managed to also achieve devastating destruction and systematic mass killings on a grand scale within some people's living memory. My own grandparents, and Sean's, lived through it (on opposing sides).

(Sean is capable of a good rant on the subject of being asked for visas and proof of fnancial reliability and repatriation when wanting to visit the UK and other places. As if none of that ever happened.)

While we love to moan and foretell chaos here in SA in the current blipette of time, we are perhaps not quite at the crisis point at which Germany found itself in 1939. Perhaps we will manage to avoid killing each other, and overthrowing Constitutions, and breaking laws and electing evil dictator leaders after all. Somehow, remembering where Europe has been to, and come from, fairly recently at that, gave me a renewed sense of hope for here (which is good because I was feeling hopeless.)

And how do the French (or Prisians, anyway) manage to carry themselves with such internal all-rightness? They seem so calmly confident. I wish I had this.

It is so fascinating to travel and be forced to encounter difference. I am so lucky to be able to have done it.

And when I got back and Richie saw me, his face broke into a restrained smile (because he guards his emotions) but the joy written on it was so beautiful that I will remember it forever. My first night back I lay down in bed with him and Richie started talking... and talking,,, and talking. A love fest ensued in which he told me how much he missed me, how glad he is that I am back, how much he loves me, how beautiful I am ("Your face is a heart" he said to me). It was like a little wall broke. He is growing up very fast, and speaking very much, and very much sense. I love him ridiculously much.

Friday, May 29, 2015

Happy days

What a busy game-changing year it has been so far. For me, the changes have all been for the better. Richie is re-finding his shiny happy side, which was buried last year. Richie participates in soccer and boxing and music and his only concern at school is that there might be an extramural that he HASN'T signed up for. I am so happy I can't really overstate that.

Felix is suddenly a whole new animal, one who, despite a wobble in the early weeks of this year, reads street signs and shop windows as we drive past ("Mom, it says Adult World!") Felix is unrecognisable. I sometimes tease him about how shy he used to be and how he never wanted to leave the house, when he pesters me to go sleep over at Tomas' house. He laughs in his honest, shy way. He has a blue stripe on his karate belt and has been picked for soccer matches and will even get to GO ON THE SCHOOL BUS (be still my beating heart) to play an away game soon - the culmination of all his hopes and wishes. He is really a super little guy, prone to sudden outbursts of love ("I love my family most of all!" - "Oh, were you talking about families in school?" - "No, I just felt like telling you.") Felix has joined up to play netball one day a week (soccer is his first love, and he has quite cooled off over art and music), but he is the only boy who plays netball, apparently, and is being teased by some Grade 2s about it. He's unperturbed about it, just shrugs and says they are silly, there's no such thing as a boy game and a girl game. Long may that last. And even though everyone was all worried about his reading (and he is currently quarterway through a 12-week visual therapy course, whatever that is, at his local optometrist, and he underwent extensive battery of tests with an ed psych AND has started twice-weekly OT) he is reading everything he sees. He loves OT. Loves it. Loves his therapist "as much as I love you, Mom", apparently. Felix isn't going to play for Pirates anytime soon but I hope he can continue to enjoy the game. If I remember my school days I was under such a misconception about sport - that if you weren't "good" you shouldn't play. It never occurred to me that there were three "good" kids on the team and four "average" and then me and the rest - the "not so terrible as to be barred from the sport". Also I never demonstrated to myself that practice can and does actually lead to improvement, I simply never stuck to a sport long enough.
Felix has already told me that he is not good at soccer and that nobody wants to pass to him and against my coddling instinct I just said a mild "really?" and suggested me practice a bit more, and agreed that Child X was excellent at soccer - just as we all have our own talents. He doesn't need to believe he is potentially excellent - just that he can make a contribution, from the back of the field, to the team. (Felix was made a defender in his first ever match; Child X was nominally a striker and in actuality played midfield, attack, defence, scorer, goalie... it was very funny, and very cute)

Richie these days replies to my I Love Yous with an occasional "And I also love you", or when I go sleep with him when he's sick he asks me to do it again the next night, and he wakes up in the middle of the night and strokes my cheek - even once planted a kiss - and I am finished. These caresses were unheard of last year and when I remind him of our silent car journeys daily to and from school Richie concedes that they were as I dscribe them but won't be drawn on why he was so unhappy, barring telling me "There are bullies at school" and when I point out that the child he means left the school and that his great friend Eli was there he says nothing.

We spent a week in Hazyview again at the end of the first term. Both boys had such positive memories of our time there that it was almost guaranteed to be an excellent time. We managed two trips into the Kruger this time (we didn't see any rhinos... which felt ominous) and loads of hanging out, and as these times do, it was a watershed in that Felix and Richie slept together in a room and woke up together in the mornings and dutifully "kept quiet" for hours on end because we told them "other people are still sleeping" (not a favour, I must add, that was returned by our neighbours at 3AM) and so we found that we had regained the lost arc and golden fleece of the LIE IN. It was divine. Since then it has happened once that I woke at home in a shock at 8AM and found my two boys playing peacefully together.

Richie's bowel washout programme also got refined - because he was getting an enema I was putting him on a potty afterwards for upwards of half an hour, but on holiday I didn't bring the potty. Richie sat on the grownup toilet instead, and the first two times he was "scared!" but by the third time he was totally happy to go there, and as a result his poo time has reduced to like 10 minutes (probably has to do with better poo-ing posture on a real toilet).

Happy for small successes, and large ones.

Thursday, March 19, 2015


Maureen's remains were placed into the wall of remembrance at her church, St Patrick's La Rochelle, six months almost to the day after she died.

We still miss her very much. The children speak about her often, and seem to find comfort in the idea that she is safe with Jesus,

Prize if you can spot the humour in this plaque.


Million dollar babies

When people talk about Big Pharma I like to eye roll and


because really.

Clearly medicine has been corporatised, I am not na├»ve. There is a reason I have to play this song when I'm on hold to Discovery (it makes me feel much better). There is a reason your vasectomy costs you R30 000 and my husband makes R1 200 off it, while he's the one wielding the scalpel (and you're not even staying overnight in hospital). Someone is getting rich off sickness, and where there is greed there is corruption and evil and distortion of healthcare. OBVS.

Big pharma huh. Big pharma has ensured our med aid is "MSA DEPLETED" (I don't feel like getting a degree just to figure out what that means but I know it means it's only March and we have spent many monies on healthcare providers so far this year.)

They call spina bifida babies million dollar babies because you can't really tell by looking at them just how expensive their condition is. We've just ordered new orthootics for Richie for close on R20k. He got to choose his own design - purple camo is the one he selected - and because we are still enjoying New Richie, he was happy and cooperative the whole time his legs were set into plaster of Paris.

We don't even have a child with hydrocephalus, so if we had to add shunt operations and epilepsy meds to our bills they would be even higher. Even so, SB babies generally need continence interventions - catheters and enemas and bladder and bowel medications - and that's a daily expenditure. Sometimes your medical aid decides that probiotics are prescribed, sometimes it decides they are not. Sometimes they decide that you can have the bladder meds on "chronic" - other days, they tell you they won't pay for them at all, as they are contra-indicated for use in children (and why are you giving your four-year-old and old-man drug to relax his bladder?)

And then there's Felix, whose Gr1 teacher said she thought he needed a full educational psychologist's evaluation, so he went, was referred to an optometrist for a visual tracking evaluation, so he went - everyone agreed he has very-like-extremely low tone (and I know everyone has low tone these days) but so now Felix is going for occupational therapy.

He's quite happy to go. My little acquiescent, eager-to-please little superstar.

Detail to follow when we have seen all the reports. But how odd - another child receiving therapies. Ha.