You’d never know

When I meet new people I often have to explain that my son is recovering from a serious respiratory condition. I briefly cover off the fact that he’s had a bunch of surgeries and has improved a great deal. I explain that I still need people to be careful around him when it comes to things like colds and flu and getting vaccinated to protect him.

The most common response I get is surprise that he has been through so much and is such a happy child. I am often told “You’d never know!” And I agree. There’s nothing about my rambunctious toddler that screams illness. You used to be able to hear every breath he took – awake or asleep. We had comments and stares wherever we went. I bloody hated elevators. After each surgery he would be temporarily better. And then the rasping, the dragging, would return.

In order to write this post I thought I’d look up to see when his last surgery was – it has been a year and I can’t believe it. I told someone the other day that it has been six months. I genuinely feel like it was yesterday.

And I can really see how people would think you’d never know he’d been so sick – He is the most resilient, strong, brave child. A complete stereotype. The Brave Sick Kid who takes everything thrown at them with a smile.

I wonder though how long I will know. Will I ever forget what we have been through as a family?

I’m often asked – when will you write about Eddie’s illness? I can understand that statement too. This is a blog about parenting after all and my first year and a half of being a parent was completely dominated by his illness. It is the elephant in the waiting room.

I’ve tried. I’ve tried to write about it. To tell his story in a start to (almost) finish kind of way. But I can’t. My brain only seems to open doors to little snap shots of memories. But then the door slams shut. I am wired for self care now. I cannot put that pain into any kind of order. I push myself out before I get in too deep.

Little snap shots.

Eddie at three months old in intensive care after surgery. I don’t know what time it is – I have turned my phone off to try to avoid calls where there is too much silence on the other end. I can’t meet the demands for updates. I’m out at sea. My husband is my lighthouse. Nobody can reach us. They are trying to get my baby to breathe on his own and when they tried to remove the tubes something happened and alarms went off and I was pushed out of the way. I thought about what would happen if I lost my baby. I thought about the buses that hurtle down the road outside the hospital. Right outside the hospital wouldn’t be ideal though. And it would not be fair on the bus driver.

On the phone to my sister. We had gone in to hospital because his breathing sounded particularly bad. They are rushing him in for surgery I tell her. Can she tell the rest of the family that he’s going in? I wonder why my arm hurts. I look at it and I have gripped it so tightly that it is now a deep, dark purple.

Is it months later? Or weeks? My husband and I are holding our little boy still. They are guiding a camera into his throat. He has had this procedure so many times. He is buckling and screaming. He goes limp. His skin is pale and clammy. Tears are streaming down my face. ‘It’s harder on the parents than the child’ someone says. I know that isn’t true.

I yawn at work. I have spent the night in hospital again. It is so noisy there that I can’t sleep. Eddie doesn’t sleep either. Someone says that the trick to getting your child to sleep through the night is to put them in another room with the door shut.

Sitting in the toilet at work sobbing. He needs more surgery. I can’t work out why I’m not getting better at handling this. I have a meeting in eight minutes. Why does it feel like it’s getting harder? I feel like I can’t breathe and I wonder if this is how he feels every day and that thought alone makes my jaw ache and my heart beat faster until I feel dizzy and cold.

I am exhausted. A woman in a café asks what’s “wrong” with my son. I say he has a respiratory condition. My body language is clear that I do not want to talk about it. “Should you have him out in this weather?” she asks. I say through gritted teeth that he’s fine. “Have you tried amber beads? My daughter swears by them for her son and he has asthma too”. I imagine pouring boiling water over her and the thought makes me smile. Another mother frowns at the rasping noises coming from the buggy she raises an eyebrow at her friend. My smile disappears.

A friend brings over their child. They have a snotty nose. It’s just allergies she says. I spend the next week sleeping no more than two or three hours a night. I am convinced he will get sick and end up in hospital again.

We are hopeful. We are daring to think he might be better after nearly three months of silent breathing. Then in the morning we hear him gasping. Overnight his breathing returns to the familiar dragging. We know that this means more surgery.

In a Facebook group a woman rants about how pamol is poison. She treats her son’s teething problems with cuddles she says. He’s never been vaccinated and that’s why he doesn’t get sick. Whooping cough is just a cough she says. No children have died of whooping cough and if they did it’s a form of natural selection. I am grateful that my husband handles all of Eddie’s medications. There is only one where he needs to be held down so we can give it to him. The rest he has gotten used to taking. I lie awake at night thinking about how I can keep him safe. I can feel his breath on my chest as he snuggles into me. I kiss his forehead and know I will do anything to protect him but how can I protect him from people like that?

I am pregnant. “Are you worried the baby will be like Eddie” somebody asks.

All of these little snapshots don’t begin to tell the story. He is getting better. He is better. Is he better?

Sometimes I feel like every little bit of this particular pain has attached to my bones. It is a weight that I carry around always and I wonder when it will be lifted. When will enough time have passed for it to pass? I feel like all of the time we fought for him to breathe – it was a war. We have returned from the front shellshocked. What is the length of time you need to be home for it to go away?

I think parents who go through this have some kind of sick kid post traumatic stress disorder. The people around you get sick kid fatigue. They have enough sympathy for the first few surgeries but your child is meant to just get better or…well…Limbo is a strange thing.

And when they do get better – you’re supposed to be free from it all too. Your child is better! That’s it. That’s the end of that story. Please begin talking about the lessons you’ve learned. Preferably have some Hallmark card quotes ready. Everyone loves a happy ending.

But it isn’t over even when it’s meant to be over. The fear is always there. Particularly when it’s a chronic illness or a condition that isn’t well understood. Remission or recovery doesn’t erase the past.

Last week he built an adventure in our lounge. You have to leap from the couch onto the pillows. Jump them like a monkey. Climb onto the recliner and leap on to the carpet which is the sea. Watch out for the shark! You’re a pirate now. Walk the plank then begin again. He does this ten times.

I hear a ragged edge to his breathing.

I feel that familiar ache in my shoulders. The dull pain in my neck. The heat on my face. My eyes prickle.

My heart jumps.

Will I always know?



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40 Comments on “You’d never know

  1. As a mum of two preemies my heart goes out to you. I completely understand that feeling of dread in the pit of your stomach when you hear the first sign that all is not well. I also understand the need to punch ‘helpful’ people who just don’t get it.
    In the UK they are currently researching PTSD in parents who have had children in the NICU and advising health professionals to not just look out for PND but this as well. Remember that you need looking after too, support is out there. Keep well x

    • That’s really interesting and really good to know. Often it feels like you’re so busy parenting that you never stop and take stock of what you’ve been through as a parent. Much love to you and your family – two preemies must have been unbelievably hard x

  2. Oh, this is so beautifully written that I can feel your pain. I mean not like that but your words touched me. I don’t know if I’m making any sense (its 7am here) but I couldn’t read and run. I’m glad you posted it and I don’t think you could have written it any better. My daughter was born with a Congenital Hypothyroidism (not the same I know) but on the anniversary of her diagnosis I felt very very low as all the emotions of that time came flooding back and I wondered how long it will take me to feel ok about it. Like when does the worrying stop? Hugs to you.

    • It doesn’t need to be the same to know how it feels. I’m so sorry for your daughter’s diagnosis. It feels like such a loss when you have to face any kind of deviance from healthy for your child. I feel the same, I wonder how long I will feel triggered by things. How long wounds will feel raw. Arohanui x

  3. Beautifully expressed. You are such a perceptive mother and writer. He mihi aroha to you and your sweet family.

  4. Aww man, I’m sorry to hear about this. It’s a very touching story. I can imagine the “helpful” comments by people who mean well. And how much you must want to punch anyone in the face who comes near your baby when they’re sick. Even if a baby’s healthy, it makes me mad when people go to visit it and say, “Oh I’m not in the contagious stage anymore,” whilst hacking up phlegm. How hard is it for someone sick to just Stay. The f***. Away. Anyway, thanks for sharing some pieces of your soul as it was obviously quite raw to write about. xx

    • Yeah, life would be a lot easier for parents of sick kids if everyone vaccinated their kids and stayed away when they or their children are unwell! X

  5. I read this after having to rush my Mr 2.5 into hospital early this morning with breathing issues, and am sitting here wondering if we will be back tonight.

    Definitely hear you on the “useful advice” thing, had my fair share of that. I’ve taken to given it a crackpot rating out of 10 in my head, keeps me from saying anything too rude. Heavens help the poor soul that gets 10/10 though- I’ll probably scream out “you’re the winner!!” or something.

    • I hope your son isn’t back in tonight Leonie. And I love your crackpot rating! I’ll be thinking of you.

  6. You will always know, you will always remember. It isn18 years since my husband had a potentially terminal illness that was supposed to kill hiim. It didn’t and we live with the side effects of the “cure” forever. And I still check on his breathing when he’s asleep, and I still panic when he doesn’t answer the phone, while I’m at work.
    These life experiences, these things that happen to us, to people we love, to our children – they are with us all our lives and leave scars. They are also the things that leave us wondering how we didn’t die.

    • Very true Jackie. I’m sorry you both live with those scars physical and emotional.

  7. Thank you for writing this. I know it must have been hard to write – not as hard as what your family has been through obviously, but it explains so well the long hard road a family must go through with a sick child. I can’t pretend I know how you feel, but I can say I can try to be more understanding and compassionate if I ever come across those in your situation. And I promise to never offer amber beads. Kia Kaha Boganette. You all deserve a hug

  8. Such a beautifully written post, and it brought a fair few tears in recognition. Our youngest was born with what was supposed to be a minor kidney problem, but sadly wasn’t minor and it started failing. We had surgery at 3 months old, which had a 90% success rate, but his failed. So we did it again at 9 months and this time it did (fingers still crossed) work. We still don’t quite have the all clear, but I’m hoping this year we’ll get it (would be a nice 4th birthday pressie). We too always got the ‘ but he looks so healthy’ and ‘you’d never know’. But that first year was just dreadful, and I’ll never forget it. And every time I get him dressed and see his scars it floods back. Anyway, thanks for sharing, Eddie is a gorgeous little dude, with an incredible family 🙂

    • I’m so sorry Kelly. I hope you get the all clear. It’s a hard road isn’t it? Much love and thank you x

  9. Thank you for writing this. After a difficult birth, Our son was in the NICU for his first 8 weeks where he suffered multiple organ failure, including servere brain seizures. He had emergency surgery at 22 days old after also developing Necrotizing enterocolitis, and then surgery again at 12 weeks to close an ileostomy. He was 32 days old the first time I held him. 51 days old the first time I was able to put him to the breast. Though he was born in the 3rd Sept last year, it wasn’t until Christmas that we were able to bring home a ‘well’ child…. Though the multiple hospital appointments continue.

    I definitely feel like post traumatic stress disorder is a real and frightening reality for parents of sick children. My husband and I clung on to our sanity by our fingertips in those months in the NICU (mainly for the sake of our three year old), but then you come home and everyone presumes everything is ok now and we can all just ‘move on’. But I live every day thinking that it will eventually catch up with us…

    ‘I’m out at sea. My husband is my lighthouse. Nobody can reach is.’

    This deeply affected me. Thank you again for writing this. X

    • Oh Lorraine I’m so sorry. That sounds like Hell. Sending you love. Thank you for sharing x

  10. I don’t know you, but I love you! Hang in there.

  11. Our prem iugr baby spent 5 weeks in nicu upon arrival this summer- he has some ongoing health stuff but is certainly going to be ok …. I am now taking advantage of the free counselling available through starship to deal with what is basically post traumatic stress. Is there a service like that in Welly? (God it’s tricky suggesting someone might find therapy useful without sounding like a condescending prick!) but for reals, a sick baby is a trauma. living with that trauma sucks a fat kumara.

    • You don’t sound condescending at all. During my last pregnancy I did end up getting help. That’s another blog post I will write when I’m feeling stronger. I’m so glad you have support. We are very lucky in NZ to have these free services x

  12. Aww mama… I’m a doctor and now 6 years after my twins were in the NICU I still feel absolutely sick to my stomache when I get called up there. 6 months after they were out and well I went back for training and I ended up crying in the halls in front of the patients. My twins are fine and where pretty much ok when they were born after a terrible pregnancy so I can’t even imagine what you go through… My husband is the only one who knows I feel this way, I feel like nobody else would – but I can hear that you do! You’ll be ok – but some things we just have to live with – deep scars being some of them. Thank for sharing from Denmark…

    • Thank you for sharing Trine. You’re not alone xx
      And I know it sounds like a funny thing yo say – but thank you for being a doctor. I have such a huge appreciation for doctors and nurses and registrars and everyone who keeps a hospital running. I am so grateful to everyone who saves and cares for our babies.

  13. Thank you so much for writing this (twice, right?!).

    Barbara Kingsolver says in The Lacuna ‘the most important thing about someone is the thing you don’t know.’

    I think it’s a significant and meaningful and culture-changing thing to share our stories of what people don’t know. Thank you for this one.

  14. Thank you for writing this. I had only the tiniest inkling of what you’ve been through. Thank you for being so brave.

    You were always a strong woman, and now you have truly been through the refiner’s fire (much as I don’t like to use biblical terms, it seems apt). The pain you feel to your very bones will become a kind of steel. You are truly an ironwoman! But I hope the days are over when you have to keep calling on that strength over and over again.

    One of the things I’ve always admired about you is that no matter how tough things got, you always did more than just struggle and survive each battle as it came – you looked out for ways to celebrate and live life to the full, every way you can. I haven’t been to many of your parties and events but I know that you have found every opportunity to celebrate your friends, your music, and all the love of the good people around you.

    • Oh Erica you’ve made me cry! You’ve been such a great friend to me and such a great support. I’m so lucky to have you and your whānau in my life xx

  15. My story is so different yet so much the same. I understand the fear and terror of it all happening again. My child is an adult and his life-threatening illness is severe depression. I only have to hear his feet dragging as he comes up the steps to feel my stomach drop and wonder if it’s all going to happen again.

    • Depression is such a terrible beast Char. I am so sorry you have to go through that fear. It’s a horrible, awful illness that never goes away. Sending you love x

  16. Pingback: Careless words | Mama Said

  17. all my love and prayers go to you and your family

  18. This post really speaks to me. I’ve been through some similar stuff with my daughter this year – in and out of hospital for respiratory things, a trip to intensive care that scared the living crap out of us and now, apparently, recovery. Except that I feel like I’m forever standing on a trapdoor that I hadn’t noticed until she got sick. Maybe she’s fine now, or maybe we’re going to go round it all again, and you don’t want to be an anxious parent but it’s autumn here, and that means coughs and colds…

    Anyway I just wanted to say thank you for putting into words so much of the stuff I’m trying to process too. Your writing is lovely. I hope your boy is well. It sounds like you’re doing an amazing job. Props to you, from the other side of the world.

    • Oh Tiny. I’m sorry. It’s so painful and hard and difficult to describe. And I totally understand what you’re saying about a trapdoor. Gosh that’s a good way to describe it. Sometimes I wake up in a cold sweat, terrified that one moment it will all change and we will all be back where we were. And dreading winter and the colder months? Yes – I know that one. Solidarity. If you ever want to talk – feel free to email me

  19. I think parents who go through this have some kind of sick kid post traumatic stress disorder. The people around you get sick kid fatigue. They have enough sympathy for the first few surgeries but your child is meant to just get better or…well…Limbo is a strange thing.

    Oh sistah, your words could have been my words. I’ve just read this and thought ‘holy shit, this lady has been in my head and put it all on paper…..I need to know this lady just so I can know someone who ‘gets’ it, rather than all these mummas with their normal babies who worry about teething, and poo and a couple of sleepless hours’.

    I worry about all those things occasionally, but I more worry about the day I might not have my baby anymore, or that I might have to use those CPR skills again. I also worry that I’ll never get those ICU beeps out of my head…. Then sometimes I feel like that obnoxious parent who think her kid has more going on that any other and who’s life is harder than anyone elses. I REALLY don’t want to be that parent but I always put those feelings to the side when someone turns up with a snotty nose and a raging barking cough!! It reminds me that people might get complacent, and sick kid fatigue, and basically be total selfish assholes who really have no empathy or understanding, or WILL to understand, but I’ll never get sick kid fatigue, I can’t afford to.

    Keep going lion mumma.

  20. I couldn’t read all of this as it brought back too many memories for me. We were lucky to avoid surgery but what we went through was bad enough. No one gets it. My heart goes out to you and everyone who has commented xx