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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