Mixed Emotions

Well we are back from holiday and survived intact - just.  Daisy as always continues to amaze us with her resilience, courage and positive outlook against all the odds.  She loved being on holiday, she loved the ferry and our little cabin, she loved the apartment, the beach, the places we visited, just being with her family but most of all she loved sleeping in a little bed next to her Mummy & Daddy - that was the most exciting thing for her, to be able to reach over in the middle of the night, tweak the duvet and tell me that she is Peppa Pig on holiday!!!

We are so proud of how Daisy adapts to new situations and takes it all in her stride.  Of course it was hard work; broken nights, juggling meds and IVs and TPN with family plans, but we survived and we can't wait to do it all again, sadly however, we have agreed that this is our last holiday as a family.

For a boy with Aspergers, who has sensory issues and craves routine, darkened rooms and familiar surroundings, smells, tastes and objects, a holiday in France with a boisterous family was maybe not such a good idea.  Theo had recently started on regular medication to help with his chronic migraines and to cap it all he had a bad reaction to the tablets which exacerbated his asperger traits meaning that his sleep patterns were all out of kilter and his anxiety levels were heightened resulting in several high octane meltdowns.  Not good in the confines of a small apartment!


All this had a knock on effect on our other two children who felt bruised and sandwiched between their two more needy siblings.  So I reflect on our holiday with mixed emotions, delight that we managed it and that Daisy  enjoyed herself so much tinged with sadness that for one of our children a holiday is not an enjoyable experience, once we got home he was a happier boy, in the familiar surroundings of his bedroom away from the rest of the household, with its blackout blinds and familiar sounds, smells and food.

So we will definitely go on holiday again, but not as a family of six and we have learned to accept that he is not missing out, not coming away with us is a positive experience, in the same way as coming away with us has been such a character building experience for Daisy.

Our steep learning curve of parenting a teenager with Asperger's continues as does our continued amazement at the sheer guts and bravery of our youngest daughter, her pain meds have been increased, her colon is inflammed again, her bladder is causing a huge amount of trouble but no-one who met her and experienced the smile that lights up a room would ever have know that.  Most of all I am so proud of my other two children, Xanthe and Jules, who hang on in there while the storms rage around them and still manage to imprint their larger than life personalities on this already larger than life family!!

Here are some pictures from our holiday. Thank you to everyone for your good wishes and comments, my advice would be go for it.


In the words of Charlotte Bronte;

 "Better to try all things and to find them empty, than to try nothing and leave your life a blank." 




Relaxing on the Ferry


Reading a book while waiting for her TPN to finish


Jules in his element at The Pegasus Bridge Memorial


Chilling in a cafe


With Grandma doing a bit of retail therapy



Too cool for school!


Lighting candles at the Basilica in Lisieux to remember all our Angel Friends

2 comments:

MadeByYoursTruly said...

Welcome home. It sounds hard. You have my many sympathies.

Molly Smith said...

Thanks for the update. I'm pleased to hear that Daisy enjoyed the holiday but I'm sorry Theo struggled.

Take care,
Molly

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