whatiwastryingtosaywas

There's something wrong in the state of Denmark… and I think I may be it.

Tag: CHDs

Pompeii…

I learned something horrible yesterday.

It finally became clear to me that those movies where an unknown child actor wishes he was big and wakes up as Tom Hanks, then spends two hours learning a whole bunch of life lessons, finds a gypsy to undo the wish and the camera spins around him as time goes backwards and he is returned to his former size and age were lying. It finally became clear that no matter what I do, no matter how much good I try to make happen, this is never going to happen to me. The world is never going to spin backwards and take me back to when you were here giving me a second chance to save you.

For a bit of context, readers should know we started an initiative for Hudson shortly after his death. We want to raise awareness in South Africa. We want people to know what Congenital Heart Defects are so that if their baby is the 1 in 100 that is born with it every minute across the globe they can prepare themselves and do the best by their kids. This blog is kept separate to THI because it is too sad for our purposes. I’ve become a split personality – I’m hopeful and supportive for parents on one side and desolate and pining on this one. Sorry for you guys :-).

On Friday, we held our CHD Awareness Day Hudson Initiative fundraiser. It was phenomenal. I couldn’t complain about a thing (except the food). It was everything I could’ve wished for.

Nonetheless, when we climbed into our car to go home I started wailing. Uncontrollably. If we weren’t carrying all the donations people had made in the car, Nick said he would have pulled over to try and calm me. I hiccupped myself to sleep and when I woke, the crying continued. He wasn’t there. He’s never going to be.

No matter what I do to try and undo the bad thing I must have done to deserve this.

I said to Nick yesterday, as we talked about the night, that the fact of the matter is that Hudson came here for the world – not for us. He came to us because we are the people who are supposed to make a difference but the big picture of his life story is how he is going to affect the world, not how he changed us. And I hate to say it but this pisses me off. Because he was *my* world. My world is gone and yet the world is changed because of him. How am I supposed to be cheerful about this?

Grieving the death of your baby is impossible. Trying to make the world a better place at the same time is conflicting. All I want is Hudson back. To be able to go back and change the world on *that* day. And yet, all I have is the opportunity to help other people save their babies but deep down there is only one baby I am trying to save.

But he’s gone. He’s dead.

I grieve. I am nothing but guilt and sadness.

I am dark and the halo that surrounds me is black.

Maybe it’s me I’m trying to save.

And then maybe tomorrow I’ll try something new to make the movie effects real.

Either way, this journey hasn’t even begun yet and I’m tired.

The words to Bastille’s Pompeii are my life’s words now and they echo in my brain every day…

And the walls kept tumbling down
In the city that we love
Great clouds roll over the hills
Bringing darkness from above

But if you close your eyes,
Does it almost feel like
Nothing changed at all?
And if you close your eyes,
Does it almost feel like
You’ve been here before?
How am I gonna be an optimist about this?
How am I gonna be an optimist about this?

Note: I haven’t blogged for a while. I told my therapist this is because I only write when I’m really, really low and the world must think I’m ready to off myself whenever I post. She told me to start again so here I am. Apparently, it’ll be good for me.

 

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Today is a good day…

Taking a chance sometimes pays off.

Yesterday, I mailed 702 (one of the largest radio stations in South Africa) asking them to share our Facebook page on air in the hopes that this exposure would help us grow awareness and gain traction in our efforts around CHD Awareness Week in Feb next year.

Hudson’s story and our efforts touched the people at 702 and they are going to get properly involved. How awesome is this?

If we pull this off we’ll be able to empower mothers and save babies but I’ll also be able to keep my promise to Hudson – and that is that he’s going to be big and important.

Watch this space – and listen to the soundbite!

The seven stages of go fuck yourself…

I’ve been wondering about the stages of grief everyone always talks about. Typically, there are seven and this is where I’m at with all of them:

Shock or Disbelief

I remember the shock. When the doctor on duty came out, a la every episode of ER ever made, to tell us they weren’t going to continue resuscitation efforts on my son, I watched as his father screamed and cried whilst alternately cradling my son in his arms and beating the walls. I sat down on the gurney next to them and watched as though this were a scene in a really sad movie. I got up and kissed my son, stroked his head and stared at his feet, noticing the blue line on his nappy, which indicated the presence of pee. Then sat down again. I signed documents and watched as they took my son’s fingerprints. Got up, kissed him again, told my mother he was cold. And sat down again. This happened a lot. Then they came in and re-positioned his body and I noticed that the bottom half of his body was a dark red colour as the blood was pooling – still no tears. I heard his father wailing, watched my mother and his sister cry uncontrollably, and asked the nurse what was wrong with me that I wasn’t crying. He looked like he was sleeping, that was the thing, I think. But I don’t know.

Shock is a bastard. Disbelief is its unkind brother.

The tears came as the undertaker finally arrived an hour or so later, put my son into a Moses basket, wrapped him in his least favourite blanket and took him away. I only cried when they tried to take him away. But I believe the shock stayed. I believe the shock stays for a long time.

Denial

I don’t know about denial. I said to a friend yesterday that, although I’ve been telling people my son has died for going into four weeks now, I still haven’t quite accepted that he’s not going to be at home when I get back from work. So I guess that might be it but I certainly can’t deny that he’s gone. I can’t hold him anymore. I have nobody to look after. These facts I can’t deny. Maybe denial doesn’t really apply to those grieving death.

Maybe it’s just something stupid women go through during break ups.

Anger

Now this, I understand. Anger flashes through me hotly and frequently, in response to the most innocuous people doing equally innocuous things (well… mostly innocuous). Someone dares stop dead in a shopping aisle to stare gormlessly at a packet of macaroni while her trolley blocks up the entire pathway… they’re faced with me yelling loudly that “yes, it’s true, I’m actually here. I actually exist. I’m not a gigantic, lifeless packet of Fatti’s and Moni’s spaghetti and I’d actually like to get past you.”

Fortunately, I tend to yell these things as I squeeze past their trolleys and continue walking on as opposed to stopping, getting my face really close to their faces and risking a “pasta fight in aisle 7” announcement.

Unfortunately, I can’t stop myself. I’m angry. I’m angry that these people are obviously not sad, have obviously not lost their babies, are so ignorantly happy in life that they truly believe they deserve to own all the space in all the world.

This seems to happen most frequently when I feel as though my presence is being ignored. When it seems people just don’t see me. Be it in traffic, in malls, wherever. This anger also flares up when people express concern about things I think are too small to worry about. I want to hit them with a sign that says exactly what’s big enough to be down about in this life.

I do wonder what that is all about and I do hope I don’t hate people for very much longer.

Bargaining

Who do you bargain with about something like this? It’s true; I’ve said many times that if I could go instead of him, I would. But that’s not technically bargaining is it? If I could somehow be transported to wherever Hudson is now and be invited to speak to whoever’s in charge of how things panned out, gravy, I’d go. No question. But who do grieving people bargain with? And what outcome are they hoping for? Perhaps this is a phase that is still coming. I’ll let you all know if it does.

Guilt

Non-stop. All day. Every day. Every minute. Every second. Every nano second. Since the day he was born and more heavily since the day he died. This phase is never going to end. I am certain of it. It can’t with our story. I will always have had to have done more. I will always have let Hudson die. I will always have not done enough. It’s vicious. It’s unmerciful and unforgiving. It’s unbearable. Apparently, it’s something I’ll have to learn to live with.

Depression

I’m here. If I haven’t taken an Urbanol, I cry.

Acceptance and Hope

Um… I don’t know how people find acceptance but I’ve been questioning myself on hope. I cannot abide cut flowers. To me, they represent death and dying, always have. So I requested that people not send flowers or bring flowers to my son’s funeral, asking them instead to make donations in his name to a fund that we’d be using to raise awareness around CHDs.

This has now turned into a full blown thing. We have a Facebook page, called The Hudson Initiative, we’re working on a web site, we’re trying to learn how to ask people who don’t care about CHDs cos they haven’t been affected by them (yet) for money.

This could represent my version of hope, I think. I’m not sure if I got into this too soon. It’s certainly provided me with some level of distraction but, as part of the networking needed to make something like this work, I’ve had to join various groups full of parents rejoicing as their kids make it through surgery or celebrate important birthdays following surgery early on in their baby’s lives.

I’m a human being and a mother to what people in these circles call a CHD angel – how is it possible that these stories make me sad? That said, I can’t stop pushing this program, no matter how much I’d like to. Hudson’s going to make a difference, in spite of me.

 

To conclude, look, I don’t know why they call it stages. It all seems to happen at once and it certainly doesn’t happen in the order stipulated above but I’ve always wondered what they were and now we know. At least from my perspective.