​Living on the Edge

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!