Heroes

Even heroes have heroes.

Connor is a fanatic soccer supporter.  He loves Liverpool.  He loves Spain.  Mostly because his favourite soccer player, Fernando Torres, plays for those two teams.

At the moment the FIFA Soccer World Cup is being contested in South Africa.  Yesterday Spain played Portugal in Cape Town.  Through a lot of scheming (I have to find out how you did it, Nina) a message was delivered to FT, telling him that Connor is very sick and idolises him.  No one expected what FT did next. 

He phoned Connor.  And then the international sport star and the terminally ill child spent time getting acquinted over the phone. 

According to Tania, Connor’s mom, FT explained that he would’ve loved to visit Connor but he isn’t allowed to due to security concerns.  He asked if Connor could visit the team at the stadium, but Connor is too weak for that.  FT congratulated Connor on his birthday last Sunday and promised to send him signed soccer goods.  He said that the Spanish team would dedicate tonight’s game to Connor. 

The most touching part for me is the bit where Connor told FT that he was his hero.  Whereupon FT answered that he simply sees a ball and kicks a ball – Connor is his hero for fighting for survival.  Isn’t that the most special thing?  It made my hair stand on end, my eyes water up and I will forever support Fernando Torres.  He has a heart.  And that is a rare thing.

Incidently, Spain beat Portugal convincingly in Connor’s game. 🙂

Today

Deirdre (Ethan’s mom) and I went to visit Enrico’s parents this afternoon.  We’ve both been dreading the moment – what do you say to someone who just lost their child?  On the way we were discussing whether we would want someone like us to visit if this was our situation.  I decided that, even though I would tell everyone to go away, I would still want them around.  As we parked in front of their house neither of us spoke. 

S:  (sadly hopeful, but knowing we wouldn’t)  We could still turn around.

D:  Yes, we could.

We walked to the door.

S:  (wishing things were different and we didn’t have to be there under these circumstances)  We could still turn around.

D:  Yes, we could.  But we won’t.  We have a sister in there.

And that summed it up for me.  Living in the cancer world really makes us family.  And families support each other.  It is our jobs. 

Deirdre dropped another pearl of wisdom.  She reckons the paediatric cancer (or I guess any cancer) life is like the Matrix.  But instead of being given the choice of taking the red (green?  blue?) pill and entering the Matrix, we are given only one pill.  The one that drops us into this world.  And we aren’t given a choice in taking it. 

All we can do is be there for each other. 

And pray.

Because this family lost a child today.

Enrico

Enrico passed away this morning at 01:20, between his mother and father.

I’ve had it

I am so angry I don’t know what to do with myself.  I am angry.  I am sad.  And most of all I am so bloody powerless.

Connor is extremely sick.  Tania, his mom, told me tonight that he is losing his battle.  The cancer is attacking his lungs and kidneys.  A month ago this child was the picture of health and happiness and now they are planning how to get him from the hospital to their home in the safest way so that he can “go Home” from home.

I told you that I saw Enrico on Friday.  Seeing one of our children that sick has thrown me completely.  And even more, seeing Johanetta so strong and determined to do her best for her child, has been driving me crazy.  Now it is Connor as well.  And Tania is equally amazing  in the strength she portrays to the outside world.  

What would I have done in their position?  I don’t know.  I don’t want to think about it.  Statistically this should’ve been our journey.  I just don’t want to think about it.

I do know that the face you show to the world isn’t the face that you bury in your pillow at night.  I know that I am hurting so bad for these two families.  And I know that there is nothing I can do to make it better.  I am so angry at this monster that is grabbing our children away.  I am so  a n g r y.

No mother should ever have to go through what these two women are going through.

Pringle Bay

We are spending the weekend with Wouter’s parents in Pringle Bay.  Like always, what a joy.

We were supposed to drive through yesterday after Wouter (finally!) finished work but then we had to wait until this morning because he had to courier a stack of documents to Johannesburg.  So after he did that we hit the road and arrived in time for lunch.  I really really wish we could stay another day but being married to a conscientious workaholic does have its drawbacks. 🙂

The kids are having so much fun.  They really adore Oupa Skippie and Ouma Skattie.  I love it that they have such a wonderful relationship with everyone in the family.

On the way here we saw the most beautiful, perfect, horizon to horizon rainbow.  One foot on land and the other in the sea.  I’ve been so worried about Boeta and relapses and those kind of horrible thoughts.  This past week so many children I know of have passed away.  I haven’t met anyone of them face to face but the strange thing about this life is that you enter into a whole different family where everyone is connected by their fight against cancer.  So it feels like losing a family member every time.  Cristina, Boeta’s oncologist and the best doctor under the sun (except for all the other fabulous doctors that played their part 😉 ) is away until the middle of August.  Her mother passed away (she lived in Germany) so Cristina travelled there and then she has meetings / training / conferences/ something similar in the USA.  So she didn’t get to do Boeta’s monthly checkup for June.  And she isn’t around in July.  My nerves are shattered.  Not because I think there is something wrong with him – he is in excellent health and spirits – but those nagging doubts just won’t go away.  So I’ve decided to make an appointment with Gerrit (de Villiers – paediatrician) next week and then he can do the monthly checkup. 

Looking at that perfect rainbow I could feel the love and caring of the Lord enfolding me.  He promised not to drown the Earth in rain again, and I am taking it as a promise that He will keep us embraced in His loving arms.  It felt good to feel safe.

I saw Enrico and his family yesterday.  He was sleeping on the couch when I got there but Johanetta says that is all he does all day anyway.  He is so sick.  It breaks my heart to see him like this.  Please pray for this family.

Carien

C:  (in ‘n klein stemmetjie)  Mamma??? 

Ek:  Ja my skat?

C:  (in haar ek-vra-so-mooi stem)  Ekke so ‘n kleeeeiiiiin cho-ko-le-tie-kie kjy?

Ek:  Ons het nie klein chocolates nie, liefie.

C:  (in haar dink stem)  Mmmm. 

C:  (in ‘n groot, dik stem)  Wat van so ‘n gjooooooot cho-ko-le-tie-kie?

.

Moral of the story?  If life doesn’t want to hand you small bits of chocolate, ask for the bigger pieces.

And the other moral of the story?  Sussie is such a drama queen.  I wonder where she gets it from?

On the other hand

During our BC* days I thought my life would stop and never start again if our child was diagnosed with a life threatening disease.  Now I know that life continues but at a different pace and in a different direction that I could never foresee.  One of the “side-effects” of our new life is that we have stopped doing a lot of things that we used to do and are now exposed to things that we never ever would’ve done previously.  Take last Friday for example. 

We were invited to attend a Race to Live event.  It is a charity that gives sick (or formerly sick) children the opportunity to ride in racing cars.  When I said “Yes, we would love to attend” I didn’t think about how fast they would go.  For some naive reason I thought they would be going at civilised speeds.  Oh, how wrong I was!  Those cars were flying.  And my heart was pounding.  I am a bit of a control freak (as Wouter will lovingly agree) when it comes to risky things.  No one can keep me and mine safe except for me.  So imagine my terror when Woutertjie was all strapped in, helmeted and briefed (by the driver:  thumbs up for OK, thumbs down for I want out and a flat hand for go faster) and then the first car took off and I realised that this wasn’t going to be a Driving Miss Daisy kind of event….

Boeta had such fun.  As soon as his first ride ended he walked up to the next car and demanded a turn.  He went in three cars.  Some of the children (whom I won’t name to protect their families’ pride**) didn’t want to go at all when they saw the cars come screaming past.  Carien is too young to do this and fortunately this isn’t her cup of tea at all.  It is too loud, to scary and too far away from mommy.

Boeta in his racing suit, telling the drivers how to do their thing.

Strapped into the harnass.  I keep on thinking he is all grown up but he is still so small.  Note the thumbs up sign.  As the cars came racing by we could only see the top of his helmet and his perpetual thumbs up.  The drivers say that he only dropped his thumb when he gave them the flat hand sign to show them to go faster.  Oh my faint heart.

Helmet on and ready to go.

The track were his car came past – those cars are faster than our camera is.  Every single the-cars-in-motion picture turned out to be a landscape study of Killarney race track. 😀

After his first ride – that thumb is going nowhere!

Showing how fast the car went.

Carien and I waiting for his next car to come past.

Doing his “I am a famous racing driver” impression after his last ride.  He is such a poser. 

Wouter Schumacher

With Sheryl Long, the organiser of the event.  And still that thumb.  He had such a ball.

Carien doing a bit of acting.  Just look at her broken teeth.  I’ve given up trying to keep them fixed.  She keeps on falling and knocking pieces off.

Boeta and Carien.  I asked.  He didn’t need to go to the loo, it is his “I am so cool” pose.

With Ethan.  I thought Boeta was the only child who insisted on wearing slippers all the time.  It took months to convince him to wear something else.  But Ethan does too.  So maybe it is something in the chemo?

Showing that he is still a baby at heart.  This is the start of an almost-tantrum because he couldn’t go in another car. 

It was dark by this time so they stopped racing.  I had to remind Boeta that Lightning McQueen (from the movie Cars) didn’t have headlights and therefore race cars can’t race in the dark.  He nodded sagely like this made the most sense ever and said that we should buy some for the cars.  So here is a warning to the owners of the cars – we will be back.  With lights.  And then we don’t want any excuses.

* before cancer

** Ethan