whatiwastryingtosaywas

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

Tag: congenital heart defect

The seven stages of go fuck yourself…

I’ve been wondering about the stages of grief everyone always talks about. Typically, there are seven and this is where I’m at with all of them:

Shock or Disbelief

I remember the shock. When the doctor on duty came out, a la every episode of ER ever made, to tell us they weren’t going to continue resuscitation efforts on my son, I watched as his father screamed and cried whilst alternately cradling my son in his arms and beating the walls. I sat down on the gurney next to them and watched as though this were a scene in a really sad movie. I got up and kissed my son, stroked his head and stared at his feet, noticing the blue line on his nappy, which indicated the presence of pee. Then sat down again. I signed documents and watched as they took my son’s fingerprints. Got up, kissed him again, told my mother he was cold. And sat down again. This happened a lot. Then they came in and re-positioned his body and I noticed that the bottom half of his body was a dark red colour as the blood was pooling – still no tears. I heard his father wailing, watched my mother and his sister cry uncontrollably, and asked the nurse what was wrong with me that I wasn’t crying. He looked like he was sleeping, that was the thing, I think. But I don’t know.

Shock is a bastard. Disbelief is its unkind brother.

The tears came as the undertaker finally arrived an hour or so later, put my son into a Moses basket, wrapped him in his least favourite blanket and took him away. I only cried when they tried to take him away. But I believe the shock stayed. I believe the shock stays for a long time.

Denial

I don’t know about denial. I said to a friend yesterday that, although I’ve been telling people my son has died for going into four weeks now, I still haven’t quite accepted that he’s not going to be at home when I get back from work. So I guess that might be it but I certainly can’t deny that he’s gone. I can’t hold him anymore. I have nobody to look after. These facts I can’t deny. Maybe denial doesn’t really apply to those grieving death.

Maybe it’s just something stupid women go through during break ups.

Anger

Now this, I understand. Anger flashes through me hotly and frequently, in response to the most innocuous people doing equally innocuous things (well… mostly innocuous). Someone dares stop dead in a shopping aisle to stare gormlessly at a packet of macaroni while her trolley blocks up the entire pathway… they’re faced with me yelling loudly that “yes, it’s true, I’m actually here. I actually exist. I’m not a gigantic, lifeless packet of Fatti’s and Moni’s spaghetti and I’d actually like to get past you.”

Fortunately, I tend to yell these things as I squeeze past their trolleys and continue walking on as opposed to stopping, getting my face really close to their faces and risking a “pasta fight in aisle 7” announcement.

Unfortunately, I can’t stop myself. I’m angry. I’m angry that these people are obviously not sad, have obviously not lost their babies, are so ignorantly happy in life that they truly believe they deserve to own all the space in all the world.

This seems to happen most frequently when I feel as though my presence is being ignored. When it seems people just don’t see me. Be it in traffic, in malls, wherever. This anger also flares up when people express concern about things I think are too small to worry about. I want to hit them with a sign that says exactly what’s big enough to be down about in this life.

I do wonder what that is all about and I do hope I don’t hate people for very much longer.

Bargaining

Who do you bargain with about something like this? It’s true; I’ve said many times that if I could go instead of him, I would. But that’s not technically bargaining is it? If I could somehow be transported to wherever Hudson is now and be invited to speak to whoever’s in charge of how things panned out, gravy, I’d go. No question. But who do grieving people bargain with? And what outcome are they hoping for? Perhaps this is a phase that is still coming. I’ll let you all know if it does.

Guilt

Non-stop. All day. Every day. Every minute. Every second. Every nano second. Since the day he was born and more heavily since the day he died. This phase is never going to end. I am certain of it. It can’t with our story. I will always have had to have done more. I will always have let Hudson die. I will always have not done enough. It’s vicious. It’s unmerciful and unforgiving. It’s unbearable. Apparently, it’s something I’ll have to learn to live with.

Depression

I’m here. If I haven’t taken an Urbanol, I cry.

Acceptance and Hope

Um… I don’t know how people find acceptance but I’ve been questioning myself on hope. I cannot abide cut flowers. To me, they represent death and dying, always have. So I requested that people not send flowers or bring flowers to my son’s funeral, asking them instead to make donations in his name to a fund that we’d be using to raise awareness around CHDs.

This has now turned into a full blown thing. We have a Facebook page, called The Hudson Initiative, we’re working on a web site, we’re trying to learn how to ask people who don’t care about CHDs cos they haven’t been affected by them (yet) for money.

This could represent my version of hope, I think. I’m not sure if I got into this too soon. It’s certainly provided me with some level of distraction but, as part of the networking needed to make something like this work, I’ve had to join various groups full of parents rejoicing as their kids make it through surgery or celebrate important birthdays following surgery early on in their baby’s lives.

I’m a human being and a mother to what people in these circles call a CHD angel – how is it possible that these stories make me sad? That said, I can’t stop pushing this program, no matter how much I’d like to. Hudson’s going to make a difference, in spite of me.

 

To conclude, look, I don’t know why they call it stages. It all seems to happen at once and it certainly doesn’t happen in the order stipulated above but I’ve always wondered what they were and now we know. At least from my perspective.

Dejavu sucks…

So I’ve decided to come back to work and it’s kind of a mind fuck. Just over four weeks ago people were coming to my table, welcoming me back, looking at my pictures, welcoming me to the club and now they’re back only this time covered in a shadow of trepidation and pity.

Thankfully, there’s only been one who couldn’t hold back on her own emotions. Everyone else seems to be quite stoic. Not too many asking *the* question… “How’re you doing?”. I mean, my natural instinct is to say “Still shitty thanks. Still a mother to no son. Still so full of guilt and resentment that I’m not sure I’ll ever be me again.” but what I do say is “Fine.” and that seems to placate. On that note, is placation my job now? Feels like it may be. 

Very importantly, I’m not entirely sure what I should be doing.

I have my headphones on and a playlist playing. Every five songs or so I wonder if this was a good idea as music has this unfortunate ability to raise the most chest crushing emotions – it always has with me. But I have come to work armed with medication, a phoney smile and a deadlocked spine that I refuse to let cave.

I’m paging through emails I don’t care about and generally avoiding eye contact in case someone asks me to do something. I suppose it’s easy to not know what you’re supposed to be doing in this circumstance. I’ve lost the plot on most of our client projects and, while I’m sure I’ll get back into it, it all just seems a bit futile. A bit mundane. So small in comparison to my reality, which is one where the only thing that matters is that instead of going home today crying because I’m so excited to be seeing my son and taking him for his early evening walk around the complex I’ll be going home and just crying.

Maybe I should just take that walk anyway.

On the life side of things, we’re managing. The only time I can’t seem to grapple with my tears in public is when I see mums and their babies. But there’s no hiding from them.

The three little lessons I keep repeating to myself and that, who knows, may help someone else in this situation are as follows:

1. Be patient with others

2. Be kind to yourself

3. Breathe

In other news: We’ve had an amazing response to our fund raising efforts – for those who don’t know, I’m raising funds that I want to donate to initiatives that raise awareness around CHDs – and a very special friend has given us advertising space in quite a few local papers. I’ve been avoiding this project all day and promised him fodder by this evening so probably should get onto it at some point. The problem is they’ll want copy and a picture. Should I be pasting photos of my dead son in local newspapers to raise funds for other people? I don’t know.

It’s been two weeks…

It’s two weeks today since I last held my son.

I have no real learnings for you. I couldn’t write a book on anyone’s grief but my own. I can tell you it still feels surreal. I still wake up wondering why he’s so quiet. I still feel the universe was unforgivingly unfair on both Hudson and us. And I still miss holding him close to my chest. I can also tell you that we haven’t touched his things, except to smell them and rub them against our faces. We haven’t even discarded the milk we’d prepared so diligently the night before he died.

It’s hard. I can go all day feeling drier than the Sahara and then I feel the longing and the emptiness in our home or I look at one of his photos, remember the time I took it and the flood of tears comes.

The only thing that doesn’t go away, even momentarily, is the pain. It’s physical and real and on-going. Unending.

I won’t write much more today. It feels disloyal to his memory still. Everything feels disloyal to his memory. Eating without interruption. Watching a TV show in its entirety. Taking a walk outside without his baby monitor. The guilt is all consuming. We’re alive and he’s not.

However, I did promise a few mothers that I’d share my eulogy with them and it was the only thing I wanted to get right on the day we bid him a public farewell, so here it is.

 

“I sat alone this morning, the day before we sent your body away, and listened for you. I tried as hard as I could to see you. And in the quiet noise that is nature, I felt my own heart skip a beat as it has done several times a week since you were born… I drew in a sharp breath and remembered… That this is where you live now.

I’ve woken up before the sun every day since Friday. My intentions always become very clear to anyone paying attention. I would hate the sun. I would hate it with every ounce of my being because it refuses to mourn. Because every time the sun comes up it means another day I have to live without my son.

Every day I’ve begged whoever’s in charge to take me back, just to last week Wednesday or Thursday so I could stop it. But, most hatefully, it will not be.

Every day I’ve asked that I be taken instead and every day ends and I’m still here.

Every day I’ve blamed myself for letting my beautiful son die.

Every day I get up from the couch where I sleep, I go into the room where he woke us at 01h30 on Friday morning to make sure we were there for him when his little heart gave up and I weep as I realise anew that nothing we did changed anything.

Every day I rise and I am as cold to my bones as his soft skin was the last time I kissed his face and all I want to be is as cold as the Winter that has truly arrived since the day he died.

But, no matter how hard I try to hate everything in this world, it doesn’t last.

I realise the sun is actually Hudson. I realise that he will not allow me to hate for much longer. I know that he will turn my anger into calm. My grief into smiles as I remember him. I know this is a long journey and I won’t be the person he needs me to be today but I also know as the sun hits my shoulders that he will be there to comfort me  until I can be the person he knows me to be.

He mourned with me on Saturday and Sunday and the sun was hidden behind a blanket of miserable grey clouds and rain (as my friend Axel posted in a private message to me: “The heavens themselves blaze forth the death of princes.”) but now Hudson warms me. He reminds me that he’s here still.

That everything he went through in his life was mapped out long before he entered my body and became a part of me that would never leave. That he chose his path. He chose Nick and I. He chose his faulty heart. He chose the difficult and trying life that he lived and he chose his death.

Before Hudson, I realise now, I was a shell of a person. I would say I was selfish and wanted what I wanted in life and had no room for the bigness of children. But it was a lie. I was just empty and didn’t know any better.

I was walking along looking for somebody and then suddenly I wasn’t anymore. He forced his way into my life and, in doing so, saved me from myself. I fell truly in love for the first time in my life. Hudson turned me into something. He turned me into love. He filled me. He completed me. He made me count.

You are all here because you knew Hudson in one way or another. So I’m not going to go into the surgery and hospital stays and rubbish doctors or even tell you the funny stories of the nurses who poked fun at his fake crying. You’ve all followed his journey through pictures and updates, you’ve all fallen in love with him vicariously because, even from a distance, it was simply impossible not to adore this kid.

What you might not know though is that no matter how hard things got. No matter how many times I thought I couldn’t put my son through another day in the hospital. No matter how meatily the guilt swelled up inside me as I watched them poking his skin in search of veins. There was never a day in his life that my son didn’t smile broadly and gummily and his dad and me. That he didn’t stare deeply into my eyes with eyes as big as his face – eyes that enveloped me entirely with one glance and showed, with such beautiful honesty, his instant and surging love for his mom. Eyes that told me exactly what he needed at any given point of the day.

He was happy and giddy and shy and full to the brim with love. He was a personality and proud of it. He had a sense of humour and a physical wit that would put me to shame. He held his head up high almost from birth. He spoke his first word. He laughed as his father and I touched his little tummy.

Even his last day with us was one filled with gums and fistfuls of grabbed hair as he hugged me tightly and snuggled his little face tiredly into my neck.

But one of the most important things I’ll remember about my son was his impact. When he was born, I said he was going to be famous. When we found out he’d have to undergo surgery, I said he was going to be big and important. I told him he had no choice but to make it through and that I was expecting nothing but success. And he was and still is all of these things.

Because of Hudson, people are hugging their children a little tighter at night.

Because of Hudson, one mother might ask her doctor to perform the check on her unborn son for CHDs and, in doing so, save her child.

Because of Hudson, Nick is a father, the proudest, most attentive, doting father I have ever known or could ever have hoped for.

And, because of Hudson, and only because of Hudson, I am now a person of substance. I am Hudson’s mother, and this is always going to be bigger than anything I ever wanted to be.”

Christopher Robin

 

 

 

When I started this, it had a different title…

I’m not entirely sure what to blog but I know I have to. I have thoughts rambling around in my skull.

I suppose what I should do is follow up on my promise to speak more around the team who’ll be working on Hudson next Wednesday. The only problem with this is, I can’t. Not from personal experience anyway, so I’ll share what I’ve found online in the meantime.

Professor Kingsley and his team will be performing the surgery. Thankfully, Discovery is covering the entire deal (when we first found out about this I wondered how they would, being that Hudson was not even officially a member yet, but thankfully, for all its faults, Discovery has shown up for the little guy and I’d hazard saying they should be counting their luckies cos I’d be making life hell if they hadn’t).

Prof Kingsley, or possibly Kinsley, has been operating in the field of cardiac/thoracic surgery for 45 years. I have not met the man, nor any member of the team who’ll be operating on Hudson, that little touch of joy only befalls us on Tuesday when we admit Hudson. But they have done much, including establishing the Walter Sisulu Paediatric Cardiac Foundation and saving hundreds of thousands of infant children’s lives. This team has been on Carte Blanche and has travelled the world to save children not to mention the charity work they do locally. I used to only support animal charities but will be adding the WSPCF to my list going forward.

What’s so shocking about heart defects is the sheer lack of knowledge. My OBGYN did no tests to check that my child’s heart was okay. We listened to it every two weeks or so for eight months but he found nothing worrisome. And therein lies the problem. It’s just not tested for. 1 in 100 infants are born with some or other Congenital Heart Defect (this link leads to a Pinterest page showing you the success stories of children who’ve been operated on for various CHDs, if you click through on any of my links, let it be this one. If you scroll long enough, there aren’t many cases of Truncus Arteriosus, in fact I’ve found four – three boys, one girl – it’s rare. You may also note how many children are born with “several CHDs” so we’re really VERY lucky and blessed to only be facing the repair of two defects, I cannot tell you how often I thank whoever’s looking out for Hudson every day for this) but people don’t know enough to ensure that medical staff are ready and waiting to address these issues the minute they’re born. Sadly, there isn’t much you can do in utero but a prepared team is better than nothing! Anyway, as angry as I was at my OB, I am not anymore. 1 in 100. This is something I should’ve been aware of and something I should’ve insisted they checked during the congenital defect scan at 11 weeks. This is when they check for Downs Syndrome, etc and CHD’s should become the norm going forward. We live in hope and continue in our efforts to raise awareness.

And that’s it. Aside from this link, which tells us what to expect before, during and after surgery, there is very little online that tells me statistics or anything I haven’t already read or been told.

I do want to end by saying thank you – to everyone who’s added us to their church prayer lists to anyone who’s said a small, silent prayer after reading a blog entry or sent their good energies out into the universe while thinking of Hudson. To every single one of you, thank you. I am grateful every day, all day and that’s the best I can be for now. Without you, I think I’d have fallen down by now. This is the toughest thing I’ve ever had to do and I can’t even own that because it’s going ot be tougher for Hudson and we have to keep strong for him.

As my friend Ceri Galatis said: It’s simple, you don’t know anyone who had a difficult start to life who *hasn’t* done something big in their lives. Hudson is going to be HUGE in Japan. Of that much I am sure.

I won’t write again until after the surgery. Keep Hudson in your prayers and thoughts, is all I ask of my loyal readers :-).

PS: The first title was “Seven days and counting” and the second effort was “Six days to go and all is well”…