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Making the most

It is summer! Having spent a large portion of winter in hospital, and the rest of it in semi-isolation at home, we decided that come May, we were going to make the very most of the precious few months of summer when colds and coughs are less prevalent and we can leave the worries of winter behind and enjoy being with friends and family outside in fresh air..


Elodie seems really well and has been blooming, making huge developments such as starting to reach and grab at items, and finally opening her mouth for a little food (instead of the usual game of blowing big fruity raspberries into the spoon, spraying me in the face..!). She is still slowly growing and at almost 18 months is still comfortable in size 3-6 months clothes but now has a third tooth and some adorable little rolls on her arms and legs! She is improving at holding her head up and her arms and legs are getting stronger although there is no sign of her sitting unaided yet.


Summer means time to make lots of memories and catch up with friends, especially those with children who seems to have a never ending stream of illnesses in winter! It might not entail tropical trips abroad, passports or pina coladas, but for us just a day in the garden and an evening visit to the local beach with pals is just as exciting.


Our little girl has a love for the outdoors, and a smile as radiant as the sun she is so sensitive to. The shady lady is amassing quite the stylish collection of sunglasses and hats, and we've created a lovely sanctuary in our garden, a place where she can enjoy the beauty of nature without the harsh glare of sunlight.





I'd love to say we are totally relaxed and feeling like a 'normal' family, but I think anyone with a medically complex child knows that this is never really the case. There is always an extra caution, a longer look at her face to check her colour, her breathing, and the ever looming hospital appointments to find out whether she is really doing as well as she seems on the outside. Friends' kids are speeding ahead and growing up fast, leaving us behind and with less to relate to.

Although our life is far from normal, the exhaustion, stress and worry is usually outshone by the love and extra gratitude we get to experience as a result of being Elodie's parents. We have been ticking off more and more experiences off her 'bucket list' although sadly sleeping for more than a few hours is yet to be achieved....

Constant reminders to see the positive in each day, as well as good old coping with humour (!) keep us going and soaking in all the sunshine we can... while trying not to think about the winter to come!

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