​Living on the Edge

Topsy Turvy Tribe on a family hike in the Alpujharas

Being the parent of a child that is seriously ill is the worst thing you can ever imagine…and then some.  You never think it will happen to you, to your baby, to your family but it does.  It hits you like a car crash, a head-on impact by an out of control ten tonne truck.  BOOM!
When I was first pregnant with Chaos (now four) I was so grateful and happy, I allowed myself a few dark thoughts about what if things went wrong, what if I miscarried or the baby was still born, what if…Luickly none of my pregnancy fears were founded Chaos came into the world after a rather long labour that I’d rather not recall too vividly.  He was and still is wonderful, after a few feeding problems due to tongue tie, he thrived and did fantastically, reaching all his milestones and climbed the percentiles perfectly.  

Mayhem was born 20 months after Chaos, after a really easy pregnancy, and I mean easy.  With Chaos I had cankles, a bout of SPD and a really long and arduous labour.  With Mayhem I felt great, had an amazing home birth and he flew into the world after three pushes, just as the midwife arrived to catch him.  Once again we had tongue tie issues but I was pretty much an expert on that now.  This time though there was something else.  Something I really did not expect.  Despite the fact that my gorgeous nephew, my second brother’s child was born with a serious heart condition, I naively thought that my child would be well and could never be seriously ill, but as he grew we realised that something was wrong.  

By the time Mayhem was six months old we had been to see various medical ‘professionals’ numerous times.  Mayhem’s breathing was erratic and squeaky and worst of all he used to scream inconsolably for two hours during the night, until he eventually fell into an exhausted sleep.  We tried everything.  Lost, helpless parents trying to comfort their wailing child but nothing worked.  After a brief history and examination Mayhem was diagnosed with colic and we went through various medications to try and alleviate his pain.  I vividly remember the Paediatrician asking me during our initial meeting, ‘what would you like to get out of this consultation?’ I simply answered ‘a baby that is well’.  

It was not to be.  Colic turned into croup, then bronchitis, then asthma then…I have written about Mayhem’s journey, our struggle to get his illness identified and diagnosed previously.  It was a traumatic time, a journey led by medical professionals who were simply following the general diagnosis, not looking for the more complex alternative.  Where was Dr House when you needed him?  We finally found Dr House, in our case, it was a wonderful female Doctor, after our umpteenth hospital admission and eventually we were astounded to find out that our gorgeous baby boy had a tumour.  

Then followed a long and worrying stint in hospital until the operation to remove the tumour and an amazing wonderful result.  The tumour was benign.  Mayhem did not have cancer and the operation to remove the awful mass was successful.  Yes, all over and done with, start our lives again!  Yes! but no, wait a minute…

The incredible adulation that we felt, having our baby boy back, tumour and illness free could not be quashed, but the worry unfortunately continues.  The tumour could regrow.  We are now a year and a half since the operation.  After all of this happened we quit our jobs and the rat race and left the UK in search of a simpler life to spend time with our precious boys.  The impact of the operation hit us all so much that we needed to hold our family close, closer, trying to forget the crazy trauma we had all been through.  
I know that if Mayhem was well we would be back in UK, continuing our normal lives working as teachers, the boys in nursery, looking to buy a house instead of spending our savings living in Spain…But something like this, something so serious continues to impact on our lives daily.  When your child has been seriously ill can you ever really relax?

It seems that whenever we get complacent there is another car crash, another BOOM moment.  A spot on the x-ray, a query about a genetic condition, an abnormality detected in the latest blood test; because the tumour can regrow we had to have bloods and x-rays done every two months in the first year, now every three/four months.  It is always a scary experience.
When Mayhem first started sleeping through the night I used to lie awake trying to hear his breathing, wondering if he was okay.  Hoping that he was just simply sleeping.  The other night he woke up and I went into him, rubbed his tummy to get back to sleep and thought I felt a mass on his tummy.  In that one moment I was transported back, back to the hospital, back to ICU, back to the devastation of thinking I could lose my boy.  He was lying in a twisted position and I thankfully realised I was actually feeling his ribs, what a relief, but that one single scary moment made me realise that we were just waiting, holding our breaths, crossing our fingers and hoping beyond hope for that our boy doesn’t get seriously ill again, that we are indeed living on the edge.

We consider ourselves lucky, oh so lucky that Mayhem was ill as a baby, that he had the operation when he was eleven months old and bounced right back with a new lease of life and without really realising.  Had he been two and a half, as he is now there would have been so much more upset.  He hates, HATES to have his bloods taken and gets so stressed and upset, I dread to think how he would have reacted to major surgery and all the biopsies and tests that entailed at his age.  He is a so full of life, so energetic and so loving you could never imagine what he’s been through, nor would you want to imagine it.
Can we ever truly relax?  Can we ever stop wondering if the tumour will regrow?  Probably not, but we are grateful for every single moment with our family, even when the boys are whinging and driving us mad, we are together and have each other.  We are oh so very lucky and count our blessings.  What this experience has taught us more than anything is to follow your dreams and make things happen, live every moment and be present.  Tomorrow may be an unknown so we make the very  best of today!

40 Replies to “​Living on the Edge”

  • You have been through so much as a family and it has had a profound impact on all of your lives. You’ve used it as positively as possible but of course the worry will always be there. I think what you have done is amazing…. the decision to go to Spain etc. This is a really uplifting post even though it covers a very emotional and fraught time in your life. Thank you for sharing. #familyfunlinky
    Hayley@ Mission: Mindfulness recently posted…Giveaway: Win Tickets to The Mindful Living ShowMy Profile

  • So much of what you write here resonates with me! – there is so much more that ties us than just your brother! 🙂
    I was listening to a podcast about trauma and resilience and they were talking about Post Traumatic Growth and I really liked that idea. We’d never want to go through the experiences we’ve been through, but from the trauma comes great insights – the ones you talk of – about the sanctity of life and the preciousness of the present. No-one knows what will happen tomorrow, but having been through what you’ve been through you’re way more tuned into this fact, and I think that’s a bit of a gift. The minutae of life is so distracting for so many. Love to you all xx

    • Thanks Sarah, you’re right we have had some very unfortunate coincidences. Ultimately we consider ourselves very lucky. Your right it’s given us a totally different perspective. One that,regrettably, we can both understand. We hope our health journey has a happy ending soon but sadly realise it’s just the tip of the iceberg for you. Let’s just enjoy our family time and relish life, lots of love xx

  • Wow, I always wondered what made you pick up and move. Im so sorry to hear what you all went through, but so glad little mayhem is well!
    Thank you for sharing such a brilliant post with us all at #TriumphantTales. I hope to see you back next week

  • Oh lovey it must be just so hard to live with everyday. You are lucky and I love your outlook but I would totally struggle to live with the fear and like you would worry about things your perhaps wouldn’t ordinarily, like you say the mass in his tummy that was his ribs. My son was discharged from paediatric care earlier this year (with potential for a further referral if needed) but still there is a tiny part of me that worries the journey is not yet over. That something will come back or be discovered that was missed. I am not sure if it is rational or not but I think it is safe to say it is called parenting! I wish you Mayhem and your family nothing but the best. Thank you so much for joining us at #familyfun

  • Your story always moves me Andrea, it must have been such a terrifying time and I can totally understand the fear and worry never going away. I love hearing about all your adventures in Spain and seeing the boys exploring and having fun. Their cheeky grins always bring a smile to my face and you’re an inspiration for following your dreams and making the best of every moment x

  • I love following your blog seeing where you have been and what you have been up to. I think it’s amazing what you are doing, and you are creating so many wonderful memories for you and your kids. Keep following your dreams and we’ll follow you!

  • I can’t imagine what that must have been like. It really is unimaginable. I am one of those people who live in constant fear of something happening to my little girl. From illness, to accident, to abduction and everything in between. I don’t know if I could cope in your shoes. I truly hope you never have to revisit this issue. #SharingtheBlogLove

  • Oh sweet, I can’t even begin to comprehend what that must have been for you then and how your lives have changed now! It’s so awful when a child gets sick and the worry of a tumour growing back much be heartbreaking. It’s amazing that you’re now living your life spending time and creating memories with your sons, too many people don’t. I constantly worry that something will happen to my children and it truly is the worst feeling in the world #KCACOLS

Leave a Reply

Your email address will not be published. Required fields are marked *

CommentLuv badge

This site uses Akismet to reduce spam. Learn how your comment data is processed.

%d bloggers like this: