whatiwastryingtosaywas

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

Tag: The Hudson Initiative

Of birthdays, shrines and trying to help people…

So it was your birthday the week before last – or was it? I can never tell what is healthy in as far as ‘celebrating’ a dead child’s birthday. Should it be acknowledged (yes) and how (I have no idea). Your birthday was three days before mine so I took some time off work and on my birthday, raised a glass to both of us. I thought about what kind of two year old you might have been. I spent time reflecting and thinking about you. Mostly, I just felt sorry for myself.

I’m two years older now than I was when I had you and NOTHING in my life has changed. I’m sad. I’m less capable of putting up with shit, which makes my job (PR) really difficult to come to terms with every day.

Nothing is better – not my job, not my life, not my relationship, not my car, not my house. I hadn’t noticed, and it kind of goes for most areas of my life, but we’ve just left our house to get along without us and it’s kind of scrappy looking lately. Doing anything to fix it would mean breaking with the Groundhog day that is our lives so we just carry on and blind ourselves to the cracks and the broken shit as much as we can.

When you were alive and then very quickly after you died, our house filled up with photos of you. I’ve realised it’s a shrine. Breaking that shrine down is disloyal and a proper show of avoidance but living with it is becoming uncomfortable too. And as slowly as I’m clearing away pieces of Hudson, people are adding to them. As sweet and endearing as that all is, I’m frustrated. On Saturday, when I acknowledged our birthdays, there were new faces in my home – for the first time I looked at it from their perspective and I died a little inside.

We’ve been forcing images of our son onto everybody, including ourselves, for so long that I don’t even see them anymore. And the worst part is when I suddenly do see them again – it’s shocking to the system. It’s cold blood. It’s May 17th at 01:30 in the morning all over again. It’s the hospital stays. It’s the surgery. It’s the scar. It’s the tired, begging eyes imploring me to remove the tubes. It’s the dead weight of the sleep induced to help him get through the first few days. It’s the weak, voiceless cry when he woke. How long do I relive those memories? And will the good memories ever come back?

Urgh.

I actually lied up top there. I said nothing had changed. But we did try and start an awareness organisation in Hudson’s honour. I’m seriously thinking of shutting that down. It’s taking too long. We’re not reaching the right people. It’s very taxing on my spirit and soul and I don’t think I can do it for much longer.

The begging and pleading people to help – begging my team at work to speak to me, begging the guys who designed our web site to update it, begging people to attend our events – I’m not this person; I don’t guilt people into doing things – I expect them to give a shit because they should.

The money – we’ve lost so much money – we’ve made many costly mistakes relying on advice from people we shouldn’t have relied on, we’ve lost money we’ve raised and money of our own that I cannot afford to have lost, I’m tired of being penniless and I’m tired of owing money.

The seemingly insurmountable task of trying to get people who aren’t affected by CHDs (insert obligatory messaging here “but have a 1 in 100 chance of becoming affected by it at any given point in their lives”) to give a shit and trying to reach the people who are affected… it’s all too hard.

I’m tired.

I’ve distracted myself by thinking I’m making a difference for almost two years. And I know people have been touched but it’s not enough to make the daily reminder worth it. Right now – I’m just too tired. People with voices don’t care. Even mothers of CHD kids think I’m breeding panic and fear (let me not even speak about the medical professionals who would very quickly see me stuffed into a small room than hear what we’re trying to say). I’ve tried to rally interest in the public to help us but really, it’s only our friends who are willing to do what they can and they already know everything they’re going to know about this thing.

I shared my feelings with a mentor at work the other day; I said I was thinking of closing up shop. She said I shouldn’t give up on my passion. I only realised right now, as I am writing this piece, that The Hudson Initiative is not my passion. CHDs are not my passion. Other people’s kids are not my passion. My passion is and will always be my son. He’s not here. He’s not benefitting from this exhausting, unfulfilling, lonely journey.

I don’t think I’m a big enough person anymore to care about other people’s babies. If they don’t want to know, why the fuck should I care? Why should I share and write and urge and cajole and plead and beg people to help me help them? Why not just let them find out what congenital heart defects are the way they’re supposed to – the way I did? I’m serious. I’m not going to finish this post with a “because I know better, because if they’re forewarned and fore-armed, their kids stand a better chance of living and not dying like mine did”.

Right now, I want this to not be my daily worry. I don’t want to have to share news from around the world where laws are changing and babies are being saved but nothing changes AT ALL in my country. I don’t want to have to see the absolute apathy on my son’s initiative’s facebook page towards anything except my weekly dip into the sad bowl where I share a photo and a memory (which are the only posts that garner any interest). If that’s what it is, I’ll change the page to a grieving page where I share things with people who don’t talk to each other and live there. The rest of it… I just don’t know anymore.

All I know is I want my son back. I want the life I was supposed to have.

This isn’t it.

Don’t worry, I bore me too…

I haven’t blogged in some time. I worry that I only blog when I’m at my lowest but, to be honest, it’s the only time I really need to share. I also worry that sharing when I’m up might seem disloyal. When I think on this sensibly, the intelligent side of my brain says: who the fuck cares? Say what you like.

I like this side of my brain… it swears too much but it’s got my best interests at heart.

A few weeks ago, I posted to my son’s Initiative’s facebook page and said, basically, that I had decided to start sloughing off the peeling, cracked flakes of guilt that clung to me; that I had decided to start trying to live outside of grief again. I think it only fair to try and be true to his memory and what’s not true to his memory is living in a dark, gloomy place with no hope for the joy of life and no hope for the tomorrow that keeps coming no matter how hard I prayed that it wouldn’t.

But keep coming it does. And keep going we do.

It’s Spring in South Africa and very differently to last year, I can feel the warmth again. I opened all the windows in our home today and felt the difference in the texture of the air. Even in Hudson’s room, the air changed. I know this sounds silly but Spring is my favourite season for all the yawny old reasons and I don’t remember it from last year. I don’t remember the last time I felt naturally warmed; organically revived.

I danced in public whilst sober the other day – a song came on, it moved me and I didn’t fight it. This is big for me. Hudson and I spent most of our time together listening to music and when my favourite songs play there aren’t many I don’t associate with him and it’s been impossible to associate the joy I felt both before and with Hudson to them anymore. When I remember him staring quizzically at the Thompson Twins as they spun right round baby right round as if to say: “what are these people on, woman” I still cry – he was so judgey and spot on even at four months, just like his mum. 

But, I’m starting to hear the music again and not all of those memories make me cry.

Last year, this time, if you’d said I’d feel better I’d have nodded, said thanks while silently telling you to go away or writing you off in a more sweary way because you a) didn’t get that I didn’t want to be better, I just wanted my son back and b) didn’t understand that simple phrases weren’t good enough or c) or d) or e)…

But better is what you feel – it’s a survivor thing. Not great. Probably not hopeful just yet. But better. And better is all a grieving parent needs. Hope is all a grieving parent needs.

So I guess to end this properly I need to say it again, as boring or repetitive as I might seem, whatever your grieving friend has said or done in the depths of his or her grief… don’t give up on them. They’ll come back one day and they’ll need you again and if you can be strong enough to jump into their new normal, it’ll all be a little more “better” because of you.

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.

 

I’m not sure I can do this anymore…

Hudson has been gone now longer than he was here and I’m not sure I’ve given his death the respect it deserved. I wake up now, as I have done every morning, facing his cot and crying is no longer the first thing I do. Sure, once I’ve made my coffee and I’m sitting outside feeling the sun on my skin, the tears come but instead of actively grieving, I find I have become more robotic than anything else.

Unless I’m drinking, I rarely laugh with honest amusement – I used to laugh deeply and authentically at a lot of things. So every Saturday, if I can make it so, I drink. I’m not allowing myself to drink during the week because I know I’ll sink into a hole so deep that I won’t ever crawl out of it again.

Sometimes I catch myself smiling or laughing in my reflection in a window and I feel like a Stephen King character – with a scary, metallic smile glued to my face. One that doesn’t reach my eyes. Grief kills your spirit. As much as I want to, and I know my son would want me to, be a little more like who I was before, it just doesn’t feel like an achievable goal.

But I’ve gone off on a tangent.

When Hudson died, instead of allowing numerous people to kill flowers in an effort to show their sympathy, I asked that donations be made in my son’s honour. We were going to buy books for moms in hospital or toys to entertain kids undergoing surgery. What has happened has put me into a situation that terrifies me every day. The Hudson Initiative has grown into such a big thing and, while it will reap much positivity for so many children in the long run, it has meant I cannot ever escape this grief. I have had to repeat his story so often… I don’t think other grieving parents have to do this. I’ve had to go back and remember his birth, the surgery, the infection… all the hospital stays, the fear and panic in his eyes. I’ve also had to remember the gummy smiles and the giggles and the squeals, so there’s that but neither memory brings a smile to my face yet. I’m still in the phase where memories of him bring the tears. The reminder that I’ll never hear those squeals again.

I don’t know how this all started. I don’t know how it grew into this thing that everyone’s talking about and media are publishing stories about and people can’t believe we’ve made a reality. But I do know, as much as I want to some days, I can’t escape it. There are babies whose lives are going to change because of it.

But where does that leave me? Am I giving my son due diligence? I speak to other parents and they couldn’t get out of bed for months – I was back at work after two weeks. They are only now placing photos of their dead children up on their work tables – I wasn’t able to take mine down and have been posting photos to his Facebook page without hesitation. It took them years to even think of having more children and I already know I want a brother or sister for Hudson.

I’m no rebel and I’m no nerd. But I work well with rules. What are the rules as far as grieving is concerned? What are the guidelines? Where can I go to speak frankly about what a fuck up this all is and how thoroughly and deeply angry I am deep down inside when all I am allowed to be on the surface is positive.

I’ve messed things up for me. But, like with Hudson’s death, there’s no escaping it now.

I realise how selfish I sound. I’m not looking for a clap on the back, so please don’t give me one. All I want now is relief. A breath.

And then a mail arrives, as it just this very second did, that reminds me why maybe relief is not what I should be chasing. Maybe I should be trying to be a hero… just like Hudson was.

This mail is from a friend of mine, Nicole. Her son Julian is giving a speech at school and this is how it’ll read…

Braveheart by Julian de Wet

A hero saves the day; they have that special ability to make a difference.  Heroes are admired for their courage, their outstanding achievements. 

Every 2.5 minutes heroes are being born.  Everyday broken hearts are being born.

One in one hundred babies are being born with one or more congenital heart defects.  These babies are known as heart warriors or brave hearts.  I am proud to say that I know one of these warriors.

Hudson Turkish Slater Smith was a bundle of baby perfection when he was born.   He was ten fingers and ten toes perfect.

No one was prepared for the news his doctor delivered just two days after his birth. 

Hudson had an extremely rare heart defect.  Instead of having two arteries, he had only one artery and the blood was mixing.  He was heading towards heart failure fast!

Six weeks later a team of surgeons successfully fixed Hudson’s broken heart. 

Throughout his journey Hudson never complained.  As countless needles were poked into his tiny body, as he lay strapped with tubes and machines attached to him, he never complained – he didn’t know to complain. Instead Hudson was a ray of sunshine, shining hope down on all who knew him. 

Tragically as countless heroes before him, Hudson got his angel wings at four months old.

In honor of Hudson his parents are changing lives.  They have set up a fund to educate and help other families.  They are working towards making it law that every baby is tested for heart defects before they leave hospital. 

Heroes are brave.  Heroes save lives.  Heroes make a difference.  Hudson is changing the world one tiny heart at a time.”