La vie avec Marigold

Last week, we enjoyed a much-needed week’s holiday in Brittany. It was, in so many ways, absolutely perfect. We stayed in a rustic French longere on a ‘bioferme’ where we could buy fresh salad and vegetables. We were surrounded by peaceful greenery, just ten minutes away from lovely sandy white beaches with lots of little rockpools.  There were beautiful blue skies and sunshine every day. We enjoyed lazy mornings with baguettes and pastries (far too many pastries) from the local boulangerie, breakfasts in the garden, strolls around pretty little seaside towns, visiting ancient chateux and eating seafood and pizzas whilst watching the sun go down over la mer. It was a beautiful and precious time spent together as a family and we enjoyed every minute.

Well….nearly every minute.

As although on the lie that is social media (FaceBook, Instagram etc.) it all probably looked picture perfect (maybe even a bit sickening), what I didn’t advertise was the fact that poor Marigold was a sickly little girl for a lot of our time there.

For those of you who are new to this blog, Marigold has a unique genetic condition: trisomy 3q11 mosaicism. As this is (so far as we know) a completely unique genetic condition, we know very little about what this means in terms of her health. But we do think, from our experience with Marigold and a few other babies with 3q duplications in both the mosaic and non mosaic form, that there is some susceptibility to upper respiratory tract infections with this duplication, in particular bronchiolitis, a nasty virus which affects the airways. Unfortunately, the two weeks in the run up to holiday saw Marigold in the grip of a particularly bad bout of bronchiolitis. Just before we left, Marigold was sick several times and I had a fleeting thought of “Should we really be going on holiday??” But with bags packed and an extremely excited four-year old little boy desperate to travel in “the magic tunnel under the sea”, how could we not have?

When we arrived at the farm later on that evening, I was struck with anxiety. We were in the middle of nowhere! You see, when you have seen your child in a life-threatening situation as we did with Marigold and her apnea attack last year, you have huge baggage in terms of constantly being on high alert, especially when they seem sick or vulnerable. I guess I am always half thinking we could need to call an ambulance at any given moment. At home in London, I know the nearest London Ambulance Service is five minutes down the road.I always feel reassured at that thought. But in France, I couldn’t quite work out how, if the need arose, any emergency service would be able to find us in our little longere on a farm in the middle of the countryside! As my husband kept pointing out, we were not staying on some tiny exotic island; this was France, emergency services did exist. Yet still, I spent the first night planning what we would do in the event of an emergency. I worked out I would call 112, the  number for a Europe-wide emergency service where you are put through to an English-speaking operator. I worked out the nearest hospital was 15 minutes drive away and made a mental note that we must not get too drunk to drive there if we needed to. I remembered my paediatric First Aid training and CPR. Just in case. And I felt a little bit better.

So we went, and although there was some sickness, we made some beautiful memories.

But with holidays comes lack of routine, missed naps, odd meal times and late nights, with the result that by the end of the week, having rallied slightly from her first illness thanks to some emergency antibiotics, Marigold found herself in the grip of a second virus. And so started what can only be described as the biggest post holiday come down ever with poor Marigold sicker than I have maybe ever seen her, pale, on food and milk strike and up all night coughing for Britain and throwing up until she choked.

Back to the doctor for a second round of stronger antibiotics and some days later, she thankfully seems to be getting better.

But the mummy guilt is strong. I can’t help feeling that our lovely holiday played a part in one of her sickest episodes so far.

So, should we have gone? Well, if we hadn’t, Marigold would probably have recovered a lot quicker from her first virus. She wouldn’t have gone on food strike and lost loads of weight. We wouldn’t have had the past five nights averaging around three hours sleep, desperately trying to ease her coughing and mop up sick whilst wondering whether we should make a 999 call.

But then if we hadn’t gone, we wouldn’t have had our idyllic family week in the beautiful French countryside. We wouldn’t have explored the lovely beaches of the Rose Granite coast, eaten gelato sitting by the port watching people on the boats, had chocolate crepes at a creperie overlooking a medieval castle (can you see a food theme emerging here?) Marigold wouldn’t have sat in the sunny garden in her nappy watching her brother play water games and laughing at his impressions. She wouldn’t have dipped her little toes in the sea, played in the sand, got to practice her bum shuffling across the wooden bedroom floor in the farmhouse and been fussed and fussed over by the waitresses at the local restaurant. And those are all important sensory and social experiences for her development.

So I have made my peace with it. This is, for the moment, life with Marigold. And whilst we need to adapt to a lot of considerations when it comes to her health, we can’t let it rule and dictate our lives and deprive her of some of the lovely childhood experiences every tiny person should have.

And I will always have my emergency plan in mind.

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