Imagine falling pregnant without trying. And it being the worst possible timing but the best possible news.

Imagine bonding with that tiny person in your belly. Feeling it move and kick and excitedly planning its arrival. Finding out it’s going to be a she. A baby sister for your first born.

Imagine the day she is born feeling on top of the world. Then the next day being told matter of factly she has a heart murmur. And she has ‘funny’ ears and a ‘funny’ chin and that her chromosomes might not be how they should. You agree to a blood test, with the results being several weeks.

Imagine at two days old your baby is taken to another hospital for a heart echo. You watch her leave without you in a huge incubator and a private nurse. You wait anxiously for several hours till you’re reunited again. The results are repeated back second hand via a different doctor.

Imagine when discharged, leaving hospital with a big fat question mark over your baby’s head.

Imagine at home using your sleepless nights to google syndromes night after night. Trying to find something but hoping for nothing.

Imagine getting that hospital call four weeks later and knowing that the genetic results would be there.

Imagine at that appointment being told her results weren’t normal. And what had been found was so incredibly rare even the pediatrician had to read up on it.

Imagine being told your baby may lead a normal life or that they may not. Coming home from that appointment you feel disconnected from your baby. Numb. Shocked. Sad.

Imagine those precious first months with your newborn. Instead of funny poo tales and cluster feeding nightmares, they pass in a flurry of hospital tests and appointments. You’re counting down the months and wishing them away, in place of answers.

Imagine living in a bubble of confusion. Of learning medical terminology and becoming an expert at mastering an ‘I’m ok’ mask.

Imagine as time goes by instead of answers at appointments your left with more questions. You live your days in a kind of limbo. Over time the professionals involved with your child increase. And so does your diary.

Imagine the worry. It’s there in the pit of your stomach laying dormant till they cough, choke and go blue. Till they vomit up after every meal for weeks. Till they lose weight or don’t gain enough. Till they develop strange behaviours or symptoms. Till there’s talk of future surgeries, tube feeding issues, infection worry. Or till the next review, or appointment, or results. You never fully relax.

Imagine watching your child slow down in progress despite everything you’re doing. Some days you just want to give up because its frustrating to live through day after day.

Imagine the mixture of joy and sadness as you watch your child’s amazing little friends move on and progress. While your child remains the same.

Imagine more and more equipment coming into your home. As it becomes ever clearer you’re child needs more support. More care.

Imagine there’s a night out planned, or the chance for coffee but your mindset is not there. You just can’t shake off your last appointment so you don’t go. You feel yourself withdraw in order to refuel. And leaving your child takes careful planning so isn’t always doable . Or maybe it just slips your mind. You have so many things to remember, to organise, to order. A social life is the first thing forgotten.

Imagine wanting so desperately to talk about it. To be honest about how things are so others might understand. But you can’t. You don’t know where to begin some days. Others it’s just too overwhelming.

Imagine when you go to bed at night on top of the usual worries, your kept awake by questions that can’t be answered. Will she walk? Will she climb? Will she say ‘mummy’? And when those questions don’t plague you, others do. Awful ones that you couldn’t ever repeat.

Imagine trying not to think too far into your child’s future. Most are desperate to keep their children young, but you’re wishing for yours to develop into a big girl.

Imagine you don’t feel like you quite ‘fit’ anywhere.


Imagine you were given a gift. The most perfect, wonderful and life-changing gift that you could ever be given.

Imagine how grateful you would be despite all the hurdles and all the worrying times.

Imagine knowing despite each and every struggle, your baby gives so much more back.

Imagine how brave she is. How she keeps fighting on despite so many odds being against her. Just to smile and to laugh.

Imagine that such a small body of a person can give you so much strength. Enough to carry on day after day.

Imagine you realise how lucky you really are.



One comment

  1. Steve Cripwell · November 9, 2015

    Reblogged this on My Write and commented:
    More of my lovely daughter and her family’s story


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