Going Abroad

We’ve just got back from a three week holiday in the South of Spain with Cali and A. It’s the third time that Cali’s been. C grew up there and his mum still lives there, so going abroad with Cali was something that we thought about much earlier than I would have otherwise. In the very early days it was out of the question, but at around 10 months we began to believe that Cali could stick around a bit longer and the thought started growing in our minds. When we mentioned the possibility to one of our favourite consultants he was really encouraging and this helped us decide we’d give it a go. Our plan was to wait until we were through the cough and cold season and then go for a few weeks.

I was petrified about leaving our safe set up and going to Spain that first time, but if I’m honest I was also wildly excited by the thought of a bit of adventure after the months of feeling so limited. My life was so small and lonely at that point. Looking back, for example, I can remember crying with disappointment one day because our dietician cancelled her arrangement to come round and weigh Cali. I’d been looking forward to seeing her and having an opportunity to “socialise” and I was bereft at the thought of another day without contact with another adult.

It was a particularly adventurous first experience abroad. In Bristol we were ten minutes from the children’s hospital and half an hour from the hospice. We had phones stuffed with telephone numbers of people we could call on when we needed advice on Cali’s care. And now we were off to rural Spain, to a house that was off grid and at the end of an unpaved track. Electricity would be limited, especially on overcast days and the nearest hospital was nearly an hour away. I knew we were taking a huge leap of faith. But C and I really needed this. We so wanted to introduce Cali to all the well-wishers who’d knitted her tiny garments and congregated together on her first birthday to record a video of themselves singing happy birthday. We also wanted to try and re-inhabit those people we were before Cali was born. Spain had been the setting of three years of our relationship and numerous holidays and we were both different people out there; the directness of the language, the warmth of the Spanish people and the climate made us both more carefree and light. Would we be able to recapture some of that if we went back with Cali?

The plans came to fruition with surprising ease. We booked tickets, got insurance, arranged for emergency oxygen to be delivered, translated the care plan into Spanish and packed enough supplies to survive a lengthy siege. The local bar received six big boxes of feeding supplies sent ahead by Nutricia. Easyjet allowed us all the medical baggage we needed and promised to help us onto and off the plane. After months of finding a trip to the corner shop an intimidating prospect it felt unnervingly easy to chug up to the airport and board a plane. I went a bit crazy with antibacterial wipes trying to create a germfree perimeter around us, and tried not to glare at anybody who dared to cough or sneeze within earshot. We were so worried that Cali would catch a cold on the plane. Cali turned out to be a natural traveller, no ear or respiratory problems at all. She smiled through the whole experience and found the plane hilarious. Before we knew it, we were sat on C’s mum’s patio with the sun beating down, the jasmine filling our nostrils, nightingale song filling our ears and fried anchovies filling our mouths. Cali wiggled her naked legs and smiled, again.

That first time we had nearly six weeks away from home, so we took things slowly. We didn’t do much apart from eat well, make the odd cautious trip to the beach or bar and amuse ourselves with a mock photo shoot of Cali’s first communion, inspired by a slightly ridiculous lacy dress she was given and by the local tradition of first communion snapshots by the nearby waterfall. There was a constant stream of visits from friends. Somehow it all felt easier in Spain, we both felt that there was something about the Andalucian culture that allowed people to feel easier around us. Probably we were also easier to be around too as we were happier.

I wish I could report that all remained well. Unfortunately, towards the end of that first trip we ended up in hospital as Cali couldn’t stop vomiting for over 12 hours and we were worried about dehydration. We were there for three nights and it was a bewildering and alien experience which left us shaken. A year later, our second holiday was much worse, Cali caught a cold which went to her chest and she ended up in PICU in the same hospital. The care didn’t feel good enough so after a week we took her back to her Grandma’s house where she continued to be scarily unwell for many days to follow, she was just recovered enough for us to board our plane on the prearranged date, but she’d lost huge amounts of weight.

This is not a cautionary tale about taking your child with Edwards or Patau away, in fact most families I’ve known that have travelled with their T13/18 children have not had such problems. If you’re thinking about travel my advice would be to make sure you know what kind of hospital your child will end up in when you travel; we were in an under resourced hospital and they didn’t have a method of delivering high-flow humidified oxygen to Cali, which is what we believed she needed. If we’d travelled to a further away hospital the experience would almost certainly have been better. Once you’ve identified your hospital, you can also try contacting them ahead of travelling so they know of your existence. I’d also recommend having your care plan translated. And if you do run into difficulties get the support of the other parents you know who have children with T13/18 or other complex needs. The support I received via the Facebook group I’m a member of was beyond helpful.

Back to the present and the third holiday in Spain was perfect. No illness, much less worries. Finally a holiday where we got to feel that most sought after of things, like a normal family. Cali continues to love travelling and the sensory cornucopia that rural Spain provides. The sway of the hammock, the smell of fish cooking, the bright light passing through the leaves and the deep dancing shadows. She had blue fin tuna and home grown avocados down her feeding tube, she went to a local singing event where she shrieked with delight between songs. A fed the chickens, ran around naked and discovered sand. And C and I had a series of daytime dates where we relived our pre-children days; eating out, swimming in a reservoir and having a smooch at the top of a mountain. We even went out for a couple of hours one evening.

I was surprised by how hard coming home was. Having a few weeks floating free of the appointments and the ceaseless admin that having a complex child generates had been so liberating. Shortly after we got back I found myself once more in the lift to outpatients at the Children’s Hospital listening again, and surely for the billionth time, to Wallace and Gromit’s canned lift banter. I felt something like a kick in the guts. It was the familiarity of it all; the scrabble for parking, the same receptionists and nurses, the same inaccurate scales, that bloody lift. And of course all the difficult memories that have been created in that place. This hospital and those memories were all part of my identity as Cali’s mum, and in Spain I’d allowed myself to forget who I was in England and what life was like. For a while I felt bowled back into a dark world of grief.

But, as is often the way, what I was feeling was just a more intense version of the holiday blues that most people feel when they return to ‘real life’ after a vacation. I got used to being back and indeed found the break had nourished me and bought about a more profound acceptance of my life as it now is. Our experiences of being abroad have underlined the fact that we need to live in the UK because here we are best supported by our incredible NHS and all the other services that the local authorities and charities offer us, this knowledge gives me feel a great sense of gratitude for this country and all we have.

And Cali is so happy at the moment, she’s loving nursery and is pleased as punch that she can almost roll 360 degrees. She spends hours on the floor sticking her bony bottom in the air as she slowly figures out how to coordinate herself, laughing delightedly to herself. Cali’s joy has the midas touch on my life and I really can’t feel sad when she is happy. And since I started writing this C has had a short trip home by himself, something neither of us had ever envisaged as being possible. And I have been offered a job! Positive changes in our lives have been unfolding at a similar rate to Cali’s slow developmental changes, and like them, because they have been so hard won, I feel all the more appreciative of them.

J x