whatiwastryingtosaywas

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

Tag: baby

I miss you…

It still happens. I still catch sight of a photo, remember you were here when each photo was taken, remember you breathed and drooled and pooped and cried, remember you’re now dead. No more. Not here. Not breathing. And I always end up imagining how that felt for you – not breathing anymore. Were you scared? Did it feel normal? Did you panic? You were so young, a baby. What did you know? Maybe to you, this was just something else that was happening to you right in the now. I doubt it. I think you panicked. I think you worried that nobody was able to fix this. And then I think… maybe there was nothing. And that still breaks me.

And I’m surrounded by people, hell, at times I’m one of them, who are drawing air into their lungs and are completely ungrateful for it. They use this air to talk about themselves, their achievements, their shit – so important is this waste of breath and life. They watch their kids keep up with the old breathing thing, and it doesn’t seem wondrous or miraculous to them.

If you were here, breathing, I think I’d spend every minute of every day just watching your chest rise and fall.

I promised the next time I wrote I’d try for positive. For the most part, I’m okay and, to be honest, I don’t need to write when I’m okay. But today, this week, it’s like the wave went away for a long, long time and now it’s ebbing back (or flowing, whichever is right). I don’t know why… it could be I need a reminder, perspective on what is actually important in life.

But it doesn’t feel like a reminder – it feels like cold blood rushing to my feet. It feels like a breath caught in my throat. It feels like I have to force myself to inhale cos it’s not ever going to be that easy to follow in your footsteps. It feels exactly like it felt that morning so long ago. Nothing is different. I’m not better at handling it when it happens. I’m the same shitty at handling it.

I’m not strong. And you’re still gone. And, with every part of me that pains in ways I cannot describe at times like this; with a hugeness that is bigger than anything I could measure – I miss you.

Were you ever even here?

People who follow this blog will know I have a quiet room that I created out of your nursery where I was supposed to go to be quiet with you or think about you or just be quiet, depending on where I’ve been in this journey. In it are various items that help trigger memories – good and bad – from the clothing you were wearing when you died, to you hairbrush and the last of your bum cream. I’d forgotten how powerful this room is… again.

I walked into the room for the first time in a while yesterday. I was grumpy with your dad and I wanted to read and maybe nap before everyone arrived for lunch.

But I felt such a shock of sadness run through me as I realised I’d pushed you so far into the back of my mind that it was almost as though you’d never existed at all.

Reading this, you’ll either understand this kind of mind fuck or you won’t.

It’s the same mind fuck you fall into when you become convinced that you killed your baby. That something you did made him decide to go away. That regardless as to how little you think of The Secret, perhaps it is a real thing and you worrying that your baby was going to die made it happen. That you really, when it comes down to it, didn’t do everything you could to keep him alive. Maybe we fought too much and he just didn’t want to grow up in this family. Maybe we introduced him to people too soon. Maybe I didn’t take the fact that he was really, REALLY fucking sick seriously enough. Maybe I should have asked more questions about his heart instead of just believing the doctors when they said everything was going to be okay. Maybe. Maybe. Maybe. Fuck. Fuck. Fuck.

Nothing for it now… these mind fuck moments are going to come – as much as I accept this, I must accept that shock will come with it. I’m going to forget and remember my son frequently. Maybe it’s a coping mechanism…

But we have some light today, in that more often now, when we do talk about Hudson, we can actually remember bits that make us laugh. We were talking the other day… I had a chest thing and was coughing weirdly. Out of nowhere – a cough. And Nick was kidding that I was putting it on. I reminded him that the master of the put on was our son and we laughed as we remembered his favourite nurse…

This nurse at Sandton (this was during the bacterial pneumonia stay, not the heart op) used to poke fun at him when he did his “I’m not happy about this, I should be crying but I’m not unhappy enough to make the tears” cry; it was like a loud “Ach!” noise – he always did this cry with her because he knew who she was and she wasn’t one for cooing. Looking back, I think she was trying to cheer us up. He may have been unimpressed but she wasn’t going to let that bring us down after days filled with vomit, fevers and heart monitor beeps – he was up, he was chatty, he was not puking or feverish. He was on the mend and she needed to remind us of this instead of let us get carried away with every squeak.

Every time I go to Sandton, which is quite often as most of our doctors are there, I want to stop by the paed ward and tell her he’s gone… but I can never build up the courage – I’m not sure I would survive seeing her face fall.

I may never go downstairs and talk to her but I will keep blogging because it’ll make sure that if I ever totally forget there is something here to remind me.

I’m feeling pretty fucked up…

Everything’s fine. I eat. I sleep. I carry on. But everything feels pretty fucked up anyway.

I guess I’m not a part of anything, choosing rather to stand at the outside of it all looking in. I remember very little and feel really stupid a lot of the time because I can’t speak intelligently about anything anymore. There’s a lot of talk about stuff I should do but nothing ever happens. Very little is progressing and I can’t blame anyone but myself for the stuck-ness.

I can’t remember the last time I felt excited about something. And it scares me how dead and dull I feel inside.

Yesterday I noticed Hudson’s photos again. They’re always there but they’ve become part of the paint on the walls – not noticeable until you really look. And again I was struck at how this just can’t be. He can’t be dead. I remember the day those were taken. He was fine. Sucking his fingers. Smiling. Breathing. He was fine!

How can it be that he’s not here anymore.

It’s weird that this still happens to me. This disbelief. This horror. This intense sadness. It’s all fresh again.

I guess I should be grateful. In return for these odd days, I have a kind of neutral peace for the most part. For the most part I don’t see the photos or the paint. I just carry on.

But there’s something wrong. I feel as though I’m on the edge of something. That something needs to budge or I’ll fall off. It’s constant tension and anxiety and, to be honest, the tears and sadness are a welcome respite.

I want my life to be normal and meaningless again. I want to care again. I don’t want to live in fear of loving something or someone cos they could die any minute. I’m not living. I’m existing. I’m avoiding life and the living required to be a part of it. I want it all to mean something again.

I want to be normal again.

Domo arigato, Mr. Roboto

So I woke up this morning and my brain was filled with images of Hudson sitting in his bumbo for the first time.

Please don't use this photo or copy it and do something horrible with it. Thanks

Please don’t use this photo or copy it and do something horrible with it. Thanks

These were some of the last photos we ever took of him. He was shy and proud, wobbling back and forth – at one point I thought myself a bad mother for not worrying about whiplash – alternating from giggling to sucking his shirt shyly when he finally figured out what it is he was supposed to be doing in there.

At some point during this memory, without realising it at first, I started to cry. I ended up crying til I gasped for air. I cried til I dirtied my hair with what felt like an unending stream of salty water. I cried til I began worrying about waking Nick, who was sleeping in the lounge, and our new housemate, Milo who was snoring in the larder. Then I stopped. And I was okay.

For the longest time I have felt nothing. I have avoided sad feelings altogether. I’ve even made jokes about this journey. I’ve been wanting to take down some of his photos (that hasn’t changed), I’ve avoided the conversation about and risk of falling pregnant again but Nick and I are better. But I’ve successfully not cried like this for what feels like a long time.

And I was okay this morning because I realised I’m not a robot. And I was okay with the reconfirmation of the fact that I have absolutely no control over this grief. And that that’s okay. It’s okay.

Every day, no matter where I am or what I’m doing, who I’m talking to, awake or sleeping, every day I’m sitting at the edge of the ocean – some days the grief laps softly at my toes, easy to ignore, other times the wave laps at my knees leaving salty crystals that make my skin itch, and I’ll have a harder time ignoring the sads, but it’s mornings like today, where the waves come in at speed, knocking you over from the head down, that you remember you’re in this for life.

Two weeks, two months or two years later, you can still be completely and utterly floored by it and that’s not going to change, probably ever. My meis was right, the only thing that changes is the frequency.

But there’s hope. You do feel better. The knock-down-oops-I-didn’t-see-you-there-waves won’t come as often and you’ll be readier for them every time they do come.

Doesn’t make it suck any less. My son’s dead and what I have in return is an amazing capacity for sadness and I’m never going to be allowed to forget any of that.

But I’m still okay.

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.

So… tomorrow it’s been a year

What does that even mean?

It’s been 365 days since I was able to hold my baby? What the fuck do I do with that? It’s a mind fuck, no two ways about it. This week has been hard. This month has been impossible. Having to sit at my table, looking with bewilderment at people who have no frikken concept about what’s important in life, or what’s hard about it either. My baby is dead and sadly it’s easy to get martyrish about it. It’s hateful of me but I judge people heavily right now. Really? Your dog died and you’ve equated this with the end of the world? Judgement. Oh, what’s that? He’s teething and you didn’t sleep well? Poor dear. Then again, that also means he’s alive! Fucksakes…

What would they do with this? Would life change? Would they gain perspective? Would they become better people or worse? I’m not sure if this is a phase that will pass but it’s where I’m at.

I also don’t know what the answers are for them. I only know for me. And this is where it is…

Everything changes and then nothing changes at all. I haven’t come to terms with any of this yet. I know on an intelligent level that my son is gone. Those moments where I get a fright on my way to work thinking I’ve left him alone at home barely happen anymore. He’s gone, yes. But it’s not like an ex or a lost friend, where you forget them or stop thinking about them. He’s always there, in my brain, floating around, distracting me at times from the goings on of life. There but not there ever again at the same time.

The world moves on quickly. Too quickly for any parent who’s lost a child. Never slowly enough. But I’ve realised I can’t expect everyone to have the same priorities as I’ve got. We’re memorialising Hudson tomorrow at his tree – the people I most wanted to be there; the people who had the honour of meeting him, who have actual memories to share, some of them aren’t going to be there. It hurts, of course it hurts – you take the lessons you want to take from the choices people make. But I’ve made peace with the fact that facing this day without them is life.

People don’t get it. It’s martyrdom again but they don’t. Only other grieving parents understand. A friend of mine at work lost her dad a few years back – they were close beyond understanding – and even she admits that she could not fathom the loss involved with the death of a child and would never compare the two. Parents. Cats. Dogs. Grandparents. Your grief is your grief – and you’re entitled to it – but until you’ve lost a child you won’t get my grief and no two griefs should ever be compared. Because this is complete and total loss. Loss of your flesh and blood. Something you created from the most minute cell. Someone that grew inside of you, was part of you, owns a piece of your soul for all eternity is no longer breathing, is no longer even a cold, lifeless body, is just gone. That’s loss that I still cannot understand truly myself and I’m living deep inside of it.

I still cannot bring myself to watch his videos. I don’t know why. Grief is not supposed to make sense I suppose.

I’m harder and softer than I was before. I’m harder on people; less forgiving, less caring, less empathetic. And I’m softer on things. We have bees in our offices. They’re dying all over the place and people are killing them too. Every time I see one dying slowly, I take it outside, lay it on some greenery and, yes, say a prayer that it goes safely wherever it’s going from here. Today, someone slammed a book down on one and there was little time for prayer and therein lies the hardness on people.

Not as much is important anymore. Before, work was important, my career was important. I was ambitious. Now… I’m just lonely. I want a family and my family has been ripped to pieces with the loss of our baba. I can tell who has children (most of the time) cos it’s the people who have perspective in all things. They know what important is. They know home time is home time and I won’t be asked to join conference calls at six pm by these people. I love these people. I want to be these people. That is what is important to me now. And I have none of it.

My arms are empty. My heart is beaten. My life is without a real purpose. And yet, I get up. Everyday I get up. I don’t know why.

The one thing I would ask everyone in my life today – friends, not so friends, others, family – don’t ask me to be over this. Don’t expect it. Don’t ever say the words “well, we all have to move on sometime”. You’re somewhere different to me. You’ve said goodbye or made peace or found your way out. I may be getting up every day but don’t ask me to ever do that. I will never forget my son. He will always be more important than everything and everyone – even in death. I will always remember him – silently and aloud and you can be a part of the new who-I-am or you can not.

Believe me, I know loss and you choosing to leave me because I’m boring right now won’t count as it.

Most important lesson this year… don’t take your children for granted. Make them important. Make them the only thing. Because you can lose everything else and stay the same with strength of character or fortitude – but you are never the same after losing your child.

I can see the thestrals…

I dreamt about you again last night. It was only the second dream I’ve had about you since you died – a fact that I find both unfair and a relief at the same time. In this dream, I was performing CPR again. I could feel your heart in your chest cavity as I pressed down on your chest plate the way I was taught. It was hard. Siezed up. A hard little ball of an organ and I felt like it was impossible to make it beat. I could see your chest lift, the way it did when I was trying to save you last year. I could hear the gurgle of the milk as it made its way from your stomach up your throat from all the compressing. I could see your eyes roll back, the way they did back then when we lifted your arms above your head to try and get you to take a breath.

Only in this dream. It worked. You choked a bit and then started breathing again. You looked at me, like into me, and breathed for a while and that was all. I woke up. You were still gone.

I don’t know what this means. What your message was. I just know you were still gone when I woke up.

This grief thing is a nightmare. I hate it. I hate crying all the time. I hate putting all of this onto your father because I am not built to share with all and sundry. I can’t even put this onto your gran anymore.

Mother’s Day is looming. I’m not doing anything. I don’t care about anyone else. I’m sick of the adverts. I’m not doing anything except probably feeling sorry for myself and bitter about all the people who are moms on the day.

And then soon thereafter will be the 17th. I don’t know what I’m going to do on this day. I know a few of the people who met you and some who didn’t are going to be there for us and we’re going to do something special for you but it’s not something I’m looking forward to at all. In fact, since last week or the week before, I’ve started reverting to who I was almost a year ago. A teary mess who feels teary and depressed every other minute.

But the dream made me do some reading this morning and I found this article, which tells how loved ones visit the people they left behind. If this story is true, you are visiting me more than I know. The dreams might be harder for you to break into. I sleep so heavily. But you’ve left feathers for your grandmother, I’ve had visits from our next door neighbour’s cat at very opportune times, butterflies always stop by me when we visit your tree, even birds have taken time to stop and fly in front of me when I think of you on our porch and this story explains the ringing in my ears that has become a frequent visitor of late.

You’re also there in songs. Music was always our thing. And we used to dance to 80s tracks and listen to music most of the days you were home and healthy and your dad and I always cooked with you in your bouncer on the counter playing music and dancing silly to keep you amused.

But the song that played most in my mind for you has been since your death and was “Pompeii” by Bastille. I always felt like the words explained you and my life after you died. The walls tumbling down in the city that we loved being your heart giving up and the grey cloud rolling over the hills bringing darkness from above representing the dark, grey world I live in now. It played on Saturday as I left your plot at the memorial site where we have buried your ashes under a lemon tree. I knew it was you because the next song was “Glory of Love” which I related to our fight against CHD in your name and then “Never Ending Story” which is the song I will always relate to your Uncle Kyle.

I knew it was you. And you were trying to bring me peace. To let me know you were there.

I want you to know I’m so grateful for these visits. You must know how urgently I need to feel you or know that you’re okay. You must know it.

And I’m grateful for the dream. I didn’t want to leave it. If I could choose to be comatose, living in a dream with you forever, I’d take it.

I miss you so much. There aren’t enough words to express this authentically. I have never missed anything this much. It’s desperate. And trying. And volatile. And it’s killing my soul.

One day, baby, we’ll be old…

Oh baby, we’ll be old and think about the stories that we could’ve told.

I have the words of this song stuck in my head. Was hoping to hear it via our iPod playlist during a get together we had yesterday but it didn’t play.

The song, along with a disgusting concoction of other things, reminds me of the unfairness of life really. Everybody should be given the opportunity to be old. Some of us cock it up. We smoke too much or drink until our livers fail and that’s our own fault. But to be fair, we should all live long enough to become burdens on our kids and, to be really fair, all children should be given the opportunity to cock it up for themselves and they shouldn’t be denied this basic right.

People die. And the older you are when you do, the fairer life has been to you.

One of the conversations that happen around the grieving on a regular basis is the “At least he…” conversation. Oh, you at least had four months – my friend’s baby was born sleeping. Or, at least you got to know your child. It’s all bullshit and people from who these thoughtless words drip like honey should count their lucky stars they aren’t smacked more.

You fall in love with someone, it doesn’t matter how long they were here, when they die, you hurt.

However, (and here’s where I risk getting smacked myself) when it’s a baby, it is different. I’ve decided. When it’s a baby, it hurts, but it’s also not right and you can never find the “rightness” in it. It’s just not right, in any way. There’s no reasoning the death of a child. There’s no “he had a good innings”. There’s no “he lived a good life”. There’s no “he died doing what he loved”.

A baby dies and with it dies potential and anticipation and expectation and dreams. With it, dies a life story – a story that could’ve been anything and everything. You only have your imagination. There wasn’t enough time for anything real to happen.

If I died today, people might be pissed or upset but they’ll acknowledge that I lived, that I laughed, that I did stuff and made something happen once, that I had opinions and fights and moments of insanity and that some might think to themselves that going at thirty odd years was better than going at twenty like that girl they knew from school who drove into a wall on her 21st birthday – or whatever.

But babies shouldn’t die. Babies shouldn’t be born with broken hearts and they shouldn’t get cancer or be born with AIDS.

Babies shouldn’t die.

Forgiveness… meh

During therapy this morning I had a light-bulb moment.

I’ve been carrying a lot of guilt for a long time. Guilt around the fact that I didn’t live a great life when he was already starting to grow inside me. Guilt that he was born with a broken heart and I was responsible for building him. Guilt that he wasn’t well in his last week and I didn’t force myself to take him to the hospital. Guilt that he died on my watch, in my room, and nothing I did changed that. Then there’s the guilt that I didn’t cry for the first several hours after he died. Guilt that I haven’t done right by his memory. Guilt that he’s dead and I’m not. Guilt that I’m even thinking of having his brother or sister at some point in the future. Guilt that I’m not in a puddle on the floor. Guilt that I’m not floating around the bottom of a bottle. Guilt that I get up every day, look at his cot and his dummy and his hat, and I don’t fall to pieces like I used to. Ah… guilt. My new best friend.

I just typed in a mail to my meis that this thing is like a tumour that’s growing bigger and bigger on the side of my body and I can’t cut it out cos if I do I’ll die.

I’ve addressed some of this guilt. I’ve spoken to medical professionals and geneticists and other moms, etc. The “on paper” is my lifestyle did not cause this thing. And the building of the body is generally up to the baby so I really did all I could during pregnancy. After that, I’m on my own. As another therapist we saw soon after Hudson died said: You didn’t wake up one morning and decide today was the day you were going to kill your son, right? And, of course, she was right. But I didn’t do everything in my power to keep him alive either. There was always, no matter who I speak to, something more I could have and should have done. Too late now.

There are a lot of too late nows…

People say you should learn to forgive yourself. And we were talking about this this morning and I eventually talked myself around to “why?”. Why should I forgive myself? Surely, this isn’t something I should be able to say “Right, self, your son is dead. You could have done something to stop it and didn’t. You’re forgiven, self. Now back on the horse and let’s go” about. Surely, this is something I should remember and remember and remember so it never, EVER happens again? Surely?

There are some parts of grief you learn to live around. But the biggies should stay. They should be that invisible third nostril or that lump on the back of your neck that keeps you forever awake and alert so you don’t do that again.

I think the people who say you should forgive yourself are arseclowns who don’t understand what they’re talking about. I also think people forgive too easily. It’s too easy. Someone says “learn to forgive yourself” and they do and it’s all that simple. Nee jong…

In almost two months time, it’ll be the anniversary of my son’s death. What… the fuck… am I supposed to do with all of this.

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.