whatiwastryingtosaywas

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

Tag: CHD

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.

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

 

 

 

The hard part’s done…

In most cases that’s not true but I think in ours it is. The hard part’s done.

The surgery’s done. He’s still in a very critical period recovery wise but my child is just… so amazing. He’s breathing quite a bit on his own, they’ve removed all the drains and pipes save for the ventilator and feeding tube (which, where the ventilator is concerned, we expect will be gone by the time we go back for visiting hours later today) and aside from needing some blood this morning, he’s on the road to recovery. He’s eating expressed breast milk. Started at 2mls per hour and is up to 30mls every three hours although he’s been fasting for the extubation phase, which should be happening as I type.

I cannot say how small I feel around this boy. For all he’s going through, I will never truly be bigger than him. And I strive to be as brave. For the lesson I’ve learnt through all of this is how scared I actually am and how brave I should actually become. Courage is a gift he’s been born with and a trait I’ve lost over the years. But I’m reclaiming it, and the only reason I can do so is my boy.

Again, I just really need to express my ever expanding gratitude for all the wishes, prayers, thoughts and energies being sent to Hudson’s little heart all the time over the past few days and going forward. I hadn’t realised how large my team was until this time came upon us and I have to say, I’ll never feel alone again.

Thank you all so much.

He opened his eyes on Friday morning when I started speaking to him...

He opened his eyes on Friday morning when I started speaking to him…

no cords

All his cords were removed this morning (Saturday)

Poor little swollen hands…

But it’s gone down now. He’s more like himself now.

 

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”…