whatiwastryingtosaywas

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

Tag: babies

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.

I miss my son…

It’s unending.

That feeling you get in your gills when you’re watching something sad on TV… it feels as though your veins are too big for your throat and the back of your eyes are burning and the too big veins are pushing all the water in your body out of your eyes and onto your face. That feeling is constant. I am always on the verge of crying. I am always missing my son. It never stops. No matter where I am or what I’m doing. Even in the middle of a laugh.

It’s obscure. And surreal. I live two lives. I am two people. One of me never changes.

I don’t walk past his room without looking at his bouncer or his changing pad or the clothes that he died in still strewn across his changing table. I don’t walk into our room, where his cot still stands, without glancing at the dummy he was sucking on or the hat he was wearing the night before he died. I don’t bath without hearing the creaks I am sure are his way of telling me he’s around.

Anybody who sees me would think I was talking to myself as I wander through our home. And sometimes I am. But most times I’m talking to him. I acknowledge the noises. I acknowledge the creases in his linen set that weren’t there yesterday.

“I hear you.”

I say this often.

Yesterday after work, I was home before his dad again and I was talking to no-one and everyone at the same time. At one point I said: “As the days go by, and Hudson still doesn’t come to me, it becomes more and more clear to me that he’s just gone. That there’s nothing after death. That death is the final thing. And my son is lost to me forever. And I’ll never see him again.”

And then, last night, for the first time since he died, I dreamt about him. And my dream was full to the brim of him. He was everywhere I looked (mainly because, I’m sure, I didn’t want to take my eyes from him in case he disappeared as things do in dreams), he filled my scope of vision. His nose. His eyes. His little arms and feet.

Right now, I know this was his way of telling me: “No, mom. Death is not the final thing. I am here. I am everywhere. I am still love. I am still your sun. And I will always be your son.”

People are arseholes…

They don’t try to be.

It’s not like they walk into a room and decide: Right, this is it! My moment to shine. My time to bring on new levels of arseholery and douchebaggery and find me someone highly sensitive to test these levels out on.

Look, some people do but most don’t choose to be tactless or pratty.

No, most people don’t. But I am finding it hard to be patient.

It’s not my job to tell you how to be with me (it’s actually, if I’m not careful about choosing my words, which I’m not right now, your job as an adult to know by now) but, for the sake of my own sanity, I’ll give you this: just be.

Just be there. Just be you. Don’t advise. Don’t tell me you know how I’m feeling, unless you do and if you do, be patient with me if I interrogate you.

Don’t try and compare this to the loss of a beloved pet, friend or aunt. Yes, we could obviously find parallels but my loss is never going to be the same as your loss and my process is probably never going to be the same as yours, on any level.

Don’t fake misery. You can miss Hudson without looking poorly or down at the mouth and I can smell phoney grief from a mile these days. Most grieving parents can.

Let me talk about my son if I want to and not talk about him if I don’t want to. If I talk about him too much for you, leave. We are certainly very blessed with supportive friends and I’ll find someone with enough capacity to deal with my words soon enough.

Don’t ask me if I’m feeling better – I’m not – I have lost my son, I have not recently fallen victim to a random bout of flu. If my answer to your “how are you?” is “shitty”, accept it for what it is. If I turn away from your offer of a supportive hug, don’t take it personally. If I don’t take your calls, don’t take it personally. If I cancel on you, don’t take it personally.

If I have made you uncomfortable in my grief, or the death of my son is something you can’t handle right now, now is your chance to grow up a little. Don’t fucking ignore me. Don’t stop speaking to me. I couldn’t care if you drop a WhatsApp telling me you remember we are friends once every two weeks. It counts.

And while I’m on that point, try and remember that, whether you’ve experienced loss or not, this particular part of my and our journey isn’t about you. I’m a human being. I know how hard it is sometimes to not identify with people who are struggling. Identifying or empathising helps you figure out how to help them. This is not one of those times. This is not about you.

I’ve been demoted. The universe gave me the best job ever; it gave me a chance and I kinda blew it. I went from worrying about shaping a person to worrying about whether we have coffee in the house or not. I need people who can remind me that I’m not the worst kind of person alive today.

Use it. Don’t use it. But be kind. Even if, at least in this post, you feel I haven’t been able to return the favour.

Sunday was not a good day…

If there’s ever a time in life that you cannot stand back, yank your arms from the slop and shit, rest those very fists against your hips and say “I’ve changed my mind; I’ve had enough and I want out. Let me out!” – it is when you’re pregnant. I realised this on Sunday.

I know… I thought I was quite smart too.

But hey, you can’t just wrench it out and leave it on the side of the road. Once it’s in there, and you’ve decided that’s where it should stay, that’s where it stays. Until it’s ready to come out.

Sjoe. Shit. Fuckadoodle doo.

Sunday felt like I just couldn’t anymore. Like that was enough now. When you come from a life where you never felt your lower intestines before or when a sore spine was usually a result of poor sleeping position and enter a life where you feel bruised and battered – where you’re scared to look at your pelvic area because you envision it has become a blue, purple mashy mess overnight – and only have the tiniest little kid with the most surprisingly strong kicks and punches to blame – things get very strange.

My friend Nadia says he’s pretty fucking grumpy too and that kinda makes sense. He’s running out of space and is probably pretty bloody bored in there. But if he really is running out of space, surely the movement should be limited?

Call me a quitter. Call me a shamelessly bad mother. Call me what you like. I care figs. The only thing I feel is sore and I’m tired of associating this with him. It’s not fair. He’s not to blame.

I can’t say I’m not excited now – the Day of The Excitement Level Hike has arrived! Yes, ma’am. I’m not sure it’s for the right reasons but with 9 weeks left, I’ve never felt more elated. And if I land up needing a C section, all the better – saves me a week or two of this at the end of the day.

Chat soon. Leave comments.