Children are made out of playdough

Today Boeta got tired of Carien tailing him and slammed his bedroom door shut.  Unfortunately his tail had her hand on the door jamb at the time and had her fingers pinned.  After roof-raising screams and kisses to make it better she promptly started playing drums on things using both hands.

When last did you have your hand slammed shut in something?  So shut that the door has to be unlatched for you to get your hand out?  I shudder at the thought and here my daughter was off hitting things with that same hand barely 5 minutes later.   Playdough, I tell you!

Ons wikkel!

(Today’s update I have to do partially in Afrikaans because it is all about Woutertjie-isms.  About how he twists the poor language to fit his meanings.)

This child of mine!  He seems to have a thing for languages.  Without us ever teaching him any of it he can hold a basic conversation in English.  With a horrible Afrikaans-American accent (I blame Pixar) and with some words that are mangled beyond the understanding of non-family members but he doesn’t let that stop him!

For me the funniest bit is how his whole body joins the conversation.  Instead of just asking “where is my train?” he swings his arms, raises them in surrender and holds his hands out to indicate the severity of the calamity.  And seeing as he can’t say the letter “r” in conjunction with other letters (he can do it on it’s own) it sounds like “whe-hoo is my chain”.  It is a source of continual amusement for me.  Any speculation about my intelligence (small things and all that) is firmly discouraged.

When he was in hospital for chemo a while ago he woke up after his afternoon nap and was cold and shivered.  So he told me, in a very concerned voice: “mamma, ek wikkel!”.  Now whenever he feels cold he does this very staged whole-body shiver, fists tightly shut, arms drawn up, jaw clenched, telling everyone in hearing range and (given his inability to be quiet) a lot of people out of normal hearing range that he “wikkel”s. 

He has also decided recently that thinking very hard is described by the word “verdink”.  Have you ever heard the word before?  Me neither.  But Boeta doesn’t let a word’s absence from the dictionary stop him from using it.  So whenever his dvd takes a moment too long to load he patiently chants: hy verdink, hy verdink, hy verdink, hy het klaar verdink!

Boeta loves navigating when we go somewhere.  He knows the road to most of our frequent destinations.  Recently he has stopped worrying about the horizontal details and is now fascinated by the vertical.  We get a running commentary about uphills and downhills as we go. Typically like this:  Kyk mamma!  Daar is ‘n opdraende!  Ons ry op by die draende!  En ons ry af by die draende!  Waar is nog ‘n draende mamma?  Ek wil by die draende ry.  Lightning McQueen jy moet vinnig ry na die draende toe!

To clarify, I drive a red car and Boeta has decided that it is Lightning McQueen (from the movie Cars).  He can’t say a “r” in a word in Afrikaans either so “draende” sounds like “chaan-deh”.  He insists on muscling through every sound until they cooperate.

As you probably guessed from this update things are still going well.  Woutertjie had a nasty cough last night but that seems to have passed.  If it didn’t we would’ve been in hospital again by now.  Thank you God for looking after us.

Let’s get plastered

Woutertjie and I went to Panorama today to have his plaster redone.  It started coming loose and I know enough about sterility to know when it is time to call in the pro’s.  So off we went.  Boeta was so excited to see the “tannies”!  He really loves the nurses.  But then, they are absolutely amazing – you would be a fool not to like them.

Plaster changing is becoming less of a hassle.  They have plaster-removing swabs to loosen the glue but until recently Woutertjie simply didn’t care whether it hurt or not, he just fought for the sake of fighting.  Now he has moved on to the control stage.

It works like this:  I hold the swab.  He holds my hand in both of his.  He then moves my hand forwards and backwards while I try to guide the swab in the direction of the plaster.  This is more of a mission than you might think!  But in this way we waste a lot of time and not a single tear.  I think the wasted time is worth it.

So Woutertjie got his plaster changed and then wanted to do it again.  Imagine my face!  I blame Annelize (the play therapist).  She taught me about giving him a sense of control.  Now he is enjoying the control so much that he wants to redo the plaster!  LOL! 

Of all the pieces of advice I was given this must’ve been one of the major ones.  In the beginning Woutertjie got extremely agitated when he was being poked and prodded.  But since we’ve been actively giving him choices (do you want this nurse to do it or that nurse to do it) it has been so much easier.  Even if he doesn’t like the choices he still gets to choose.

I choose to go and give my husband a hug now.  Please look away on the count of three.

One.

Two.

Three.

Why are you still looking?

On balance

Wouter and I are lying on the bed (hiding from our children so that we have 2 minutes of peace to discuss the day).  Picture the conversation.

S: By the way, the bathroom scale is broken. 

W: (pause) OK.

S: If you see it in the bin tomorrow don’t rescue it.

W: (confused pause) OK?

(no one says anything for a minute)

W: (carefully) So is it really broken?

I haven’t laughed this hard in a long time.  Wouter was too scared to ask if I just didn’t like what the scale told me.  I love it when he tries to be tactful!

How am I doing?

I don’t know how I am doing.  I think that means that I’m not at the top of my game.  I am the first to admit that I have issues with denial.  Call me Cleopatra, Queen of DeNile.  (denial, the Nile, get it?)

So here I am, knowing full well that I am not feeling 100% but full on in denial about it.  If you phoned me right now I would tell you that I’m fine.  And I would mean it. 

But you aren’t phoning me right now so no, I’m not fine.  I don’t know what is wrong though and that is irritating the living crap out of me.  It is difficult enough to stay in denial while I tell everyone that I am, in fact, in denial.  Now not knowing what I am in denial about is really pushing it.

Boeta is doing very well.  He is fithy as a dog as he spent the day playing that he was a dog.  He insists on sitting like a dog too.  But seeing as how he saw too much Mickey Mouse he now sits like Goofy:  on his bum with his hands and feet in a row next to each other.  It is adorable.

Carien is watering a banana at the moment.  Don’t ask. 

She received two vaccinations today and didn’t make a peep.  Mostly because she was concentrating very hard on the tin with sweets within easy reach.  And afterwards she got a pink plaster on each upper arm.  She promptly removed one and decorated her doll. 

Wouter arrived home a minute ago and made tea.  So I am going to leave you now and sit on the couch with my tea, feeling sorry for myself.  Please don’t feel sorry for me – I’m doing a very good job of it myself!

2 months exactly

It is today 2 months since this journey started. It feels a lot longer. So many things have happened and so many things have changed. And strangely enough there is very little that I regret about the past 2 months. We have met the most amazing people, we are a lot more aware of the world outside our comfort zone and we have grown so much. Good things, all of them.

Today I feel the need particularly to talk about the medical personnel who have crossed our paths.

Dr Kuhn, the GP who first noticed that something was wrong and who still phones to find out how we are doing. Thank you for doing a proper examination. You have our eternal gratitude. I can’t begin to tell you how many compliments you have received from all the other medical people involved for picking up that something was wrong. If you suddenly have a huge increase in patient numbers, blame it on that!

Dr Etienne Bruwer, the paediatrician at Durbanville MediClinic who had to break the news to us that it is cancer. You met us the one day and had to shatter our lives the next. Thank you for pushing to get Woutertjie’s tests and scans done ASAP even though it was, quite literally, the day before Christmas. Thank you for spending time with us, discussing the diagnosis. Thank you for arranging for us to meet Dr Stefan the next day, on Christmas. Thank you for being human throughout it all.

Everyone involved in doing Woutertjie’s scans, when he really didn’t want to be scanned, particularly the Durbanville MediClinic radiographist who gave up her Christmas Eve leave to accompany us to Panorama MediClinic for the CT. She had a dentist appointment beforehand and came in with a swollen mouth and her 4 year old daughter in tow. They needed someone to assist during the procedure and she put Woutertjie before her own family and health. Thank you.

Sister Jenkins at Durbanville MediClinic and all the nurses of the paediatric ward who were pillars of strength when I fell apart. You kept me standing when I didn’t want to stand and didn’t think I would ever be able to stay upright ever again. You are angels, every one of you.

Dr Cristina Stefan, the oncologist who first met with us on Christmas morning and told us that Boeta had cancer, probably stage 4 and told me rather brusquely to suck it up and deal with the facts. Thank you for that. I needed a swift kick under the patooty. Thank you for being with us every step of the way. Thank you that this isn’t just a pay cheque for you but a real calling. Thank you for treating Boeta as a private patient in Panorama, instead of a government patient in Tygerberg where you are based, after all. Thank you for looking shocked when I tell you that Boeta wants to climb trees – it makes me so proud of my headstrong child!

The nurses at the paediatric ward of Panorama MediClinic. When Woutertjie suddenly developed a very high fever on Christmas afternoon we were told to go to Panorama since our usual paediatrician works from there and Dr Bruwer was on holiday. They had no idea who we were or that we were on our way there. In fact, the paediatric ward was closed down because there were no children. Gretta was on duty when we arrived. Initially I wasn’t very impressed with her because she didn’t start doing something immediately. While I know that she needed to find out what was going on before she could do something I didn’t care about that right then. I just needed my son to get treated. Thanks Gretta, for taking the time and finding out first.

To Debbie, Sharon, Iola, Maggie, Tracey, Rose, Natasha (die nagheks!) and all the other ladies: You are the best. I still don’t know how you manage to fit your angel-wings under your uniforms. You have made this road so much easier to travel. Thank you for talking when we needed to talk, for being to good with Boeta and for really caring. We love you. And to sister Alta Stoltenkamp who tells the other nurses to give Boeta his injections because she refuses to hurt Kabouter – you are so special.

To Jean and all the ladies involved in the support services – thank you for going out of your way to make this easier for us. We appreciate it more than I can tell.

Dr Andro Theart, the paediatrician who looked after Boeta from Christmas until our usual paediatrician came back from leave. You really have a way with children. You have found your calling. Thank you for looking after Woutertjie through the holidays, always smiling and always with a wonderful attitude.

Dr Gerrit de Villiers, our usual paediatrician who has become so much more to us in the last 2 months. Even when I phone you at odd hours you are always so calm and so friendly and caring. Thank you for praying for us. Thank you for putting your hands in the Lord’s.

Annalise Gouws, the occupational therapist who does play therapy with Woutertjie to help him deal with his ordeal. You are one in a million. By making this easier for Woutertjie, you have made it so much easier for us as parents. Thank you.

Emerentia Esterhuyse, the social worker who has to try and keep me (sort of) sane. You didn’t realise what a big job you took on when you took it on! Thank you for helping me struggle through cancer issues but also belief issues. Thank you for being there when I need you.

I am sure I’ve left a number of people out. Sorry. I didn’t realise what a big team we have around us and I’ve gone blank now. I’ve never been much good with names anyway and I don’t have faces with me! Send me a comment and then I’ll add you! 🙂

Dear God, thank you for these people You have sent over our path. Bless them.

The Lord spoke

I grew up in a conventional Protestant home.  We attended a tradional Protestant church (Dutch Reformed) and looked with a beady eye at the charismatic churches when they started to become popular in the ’80s.  Wouter grew up in the Reformed Church, which is even more tradional than the Dutch Reformed. 

Through the years we have become more liberal and now Wouter and I consider ourselves to be quite forward-thinking Christians.  That being said we have never been in the thick of things, telling people about our faith, experiencing God talking to us and sharing religious opinions.  Many of our friends and family have in recent years become closer to God and while we listened politely when they shared their personal experience of the Lord we never felt the same intense oneness with God.

And then the Lord decided that it was time for change.

During the last two months we have come so much closer to the Lord.  It hasn’t always been willingly – sometimes we were kicking and screaming but thank God, He never gave up on us.

What gets to me the most is how clearly I can hear the Lord speaking to me now.  Has His voice always been there and I just didn’t pay attention? 

A couple of days ago I mentioned in a post that Woutertjie doesn’t get tired like he used to.  I didn’t realise it until I typed it.  But it didn’t really cheer me up.  I thought about it and decided that the tumour shrunk (we know that – the doctors can feel it) and isn’t pressing against his lungs and that is why he feels better.  But I knew that it wasn’t the truth.  The tumour never interfered that much with his breathing.

Last night, after writing the “woe is me” post I dragged my tired self off to bed.  I think I was asleep before I hit the mattress.  Suddenly I woke up, wide awake and I just knew that Boeta’s heart is clear of cancer.  That is the reason why he doesn’t get tired.  Way back when, the doctors said that he would be tired because his one heart chamber was more than halfway filled with the tumour, impeding the flow of blood. I have no doubt now that the scans (the week of 17 March) will show that Boeta’s heart is clear of the cancer and that surgery can go ahead the following week.  Thank You for the message, Father.

We had supper with friends tonight.  What a blessed event!  This was exactly what we needed both physically and spiritually.  On our way home the Lord again spoke to me.  I had to tell them to stop worrying about their inexplicable infertility problems.  Their daughter is 5 years old and was, for various reasons, a miracle baby.  Since then they have been unable to have more children.  So there I was, in my own mind the most unlikely person to be given such a task, with the message that they should stand back and leave God in charge.  Please pray with me that our Father will hear their plea and grant them more children.

I never thought I would turn out to be someone brave enough to discuss God at any opportunity.  And here I am doing just that.  Actually I should be in bed already but I felt compelled to write this first.  Maybe there is someone out there who needs to read this now.

May we all stop rushing and become more like Samuel.  Speak Lord, Your servant is listening.