whatiwastryingtosaywas

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

Tag: congenital heart defects

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.

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How do you plan a baby after Hudson?

I haven’t blogged in a while. Things have been hectic at work; when I get home I just want to sleep and when I get to work, I just want to get through the day.

But one thing has changed. We’re thinking of having another baby.

A short while after Hudson died, I said to his father: we’re either going to have to have another baby or we’re going to have to travel cos I can’t go back to what we were before. I don’t know where that came from; you can be a bit crazy after your child dies, I suppose, but in a way I was clearer than I’d been in a while and, as it turns out, I really can’t go back to what we were before.

We’ve been heading in that direction for a while now. As many parties as we can squeeze into our lives; as much distraction with not a hell of a lot happening in between. And I’m unhappy about it.

Truth is, I’m surrounded by all these people, who I adore and love. I share my life with a wonderful man with extraordinary capacity for love and affection and my family is alive and well. But I’m lonely. I’m lonelier than I’ve ever been before. I did not know loneliness before losing my baby. Hudson filled my world in a way that no other human ever could. Even in death, he is my priority and he fills my thoughts. Where is he? Is that ringing in my ears still him or should I be seeing a doctor? Who is that kid in the photos that adorn our walls and rooms? Why isn’t he here anymore?

The problem with this loneliness is the ambivalence created by the only way to fix it. How do you even think of a new baby after Hudson? Do I want another baby? Are the risks involved with spermatifying one of my ageing eggs worth it? If we do have a child, will I even sleep for the first year?

Hudson’s Congential Heart Defect wasn’t genetic, which means the chances of us having another CHD baby are minimal (1-4%); same as everybody else’s but there are other risks associated with babies – Down’s, SIDS, choking, flu. It’s fuckery most heinous.

When you think about everything that *can* go wrong, it’s difficult to understand why people actually choose to do this. We’re fucking terrified on one side of the fence and desperate on the other – it’s a shit place to be, in case you’re wondering.

And then there’s the question: why am I doing this, actually? Is the new baby going to be a replacement child? I know on an intelligent level that no one could replace my first-born but, in truth and in reality, he’s gone and if another baby comes along, they’ll be here where he is not – technically and by dictionary terms, a replacement. I make an effort to use the words “brother or sister” when talking about a new baby because that’s what they’ll be but, in essence, I’m replacing somebody I’ve lost. I’m filling a void so vast that people who have never lost a child just couldn’t understand the size of it.

James Newton writes in “Destiny of the Souls” that the loss of a child is unfathomable and even he doesn’t understand the reasons it happens (on a soul journey level). He then says that he believes that the lost soul will return to its mother. When I read that line, I was so filled with hope that I actively started talking about a new baby. Is it Hudson I’m hoping for?

Like I said, fuckery.

To close, I think that rather arbitrary sentence, said many months ago, is one of the things that has kept me going.

I know on a base level that if I don’t have a little person (ideally one I helped make) in my life soon, this grief will turn into my child. And I’ll nurture it and grow it and it will consume me. I think I’ll end up hating myself, hating Hudson’s dad, hating the fact that my life does not include the one thing I really need it to – someone other than me to care about; someone young enough to reasonably demand and rightfully expect my attention whenever and however they like. Unlike the rest of the world who are really big and ugly enough to look after themselves.

Regardless as to how this is settled, every month, when another egg makes its way out of my fallopian tubes, I cry. Every month, when the squishy, uncomfortable part of my cycle concludes, it feels as though I have lost something greater than a bunch of cells, I have lost the potential and the promise of life being okay again.

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.