​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”

  • Such a beautiful post and what a thing to go through and continue to do with your family. I was born with a heart condition which thankfully was corrected at 9 but things like this never leave you and I think making the most out of what this teaches us about life is the most perfect thing you can do. Lots of love to you all #sharingthebloglove
    Laura | Little Ladies Big World recently posted…A Pulled Elbow & HypermobilityMy Profile

    • Thank you your your lovely comment Laura. We definitely have to look for the positives. Glad your heart condition was corrected. It really is a lesson to appreciate our very short lives as much as possible

  • Gosh, I can’t even begin to imagine what you’ve been through and it’s great that you’ve kept so positive though it. I wish Mayhem and Chaos – brilliant pen names btw! – and the rest of the family all the best.

  • And it makes me very happy to be following your families journey – I smile every time I see a picture of them on Instagram. That might sound weird coming from someone you’ve never met but this blogging community is a small one and I genuinely love reading about your adventures and seeing that you’re a family making the most of life.

    • Thank you Alex. Our internet has stopped working, we are now relyi
      ing on wifi at cafes, so apologies for the tardy response. I really do appreciate your lovely comment and sentiment x

  • Do I spy a theme change? It’s understandable that you worry so much over your little ones that comes with becoming a parent. I hope that you and yours remain fit and healthy. #SharingtheBlogLove

    • Apologies for the tardy response but our internet has stopped working, so we are now relying on wifi at cafes. The house of living in rural Spain! Yes a new theme. Thank you for your lovely comment!

  • I’m always in awe of your story, and how you’ve turned such a traumatic experience into such a positive change in life. But I can imagine that something like that never leaves you, and I know I would be anxious all the time about things returning. I hope the future holds many more adventures and fun times for you all as a family. Thanks for joining us at #SharingtheBlogLove

    • Thank you Katy, we can only remain as positive as possible and look forward to our next adventure. Apologies for the tardy response but our internet has stopped working, so we are now relying on wifi at cafes. The house of living in rural Spain! Thank you for hosting.
      Topsy Turvy Tribe recently posted…Rugs of the AlpujarrasMy Profile

  • Your story always amazing me. I think you are all wonderful and to see you living your life like you are is brilliant. I don’t think anything like this ever leaves you. I know that the difficult times that we’ve had, are with us to stay. But thats ok, it how you deal with it that matters. Thank you for joining us at #SharingtheBlogLove

    • Thank you Laura! Apologies for the tardy response but our internet has stopped working, so we are now relying on very slow wifi at cafes. The joys of living in rural Spain! You’re totally right. Bad things happen in life we just have to deal with them in a positive light and do the very best that we can! Thanks for hosting.

  • What gorgeous boys. I love that such a positive life change has come out of such a difficult time for you. I think that it is only natural to feel the way you feel and I totally agree we all need to make the best of today! Thank you for sharing with #KCACOLS and we hope you join us again next time.

  • Wow, sounds like you’ve really had some hard times. I can’t imagine what that must have been like for you all. Sounds like you made the right decision to live life to the fullest! What an amazing gift you are giving your beautiful family. #kcacols
    That Mummy Blog recently posted…From Baby to ToddlerMy Profile

  • Wow what a journey you have had with your family! I cannot imagine not having anxiety and uncertainty with past experiences, but it is great to read you are enjoying and embracing your family every day! All the best! #TriumphantTales

  • I can not even understand what you have been through. But the way you have turned such a horrible time into a positive journey is fantastic. #sharingthebloglove

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