Ella’s Keto blog

“It has been a while since I put my fingers on the keyboard and wrote about Ella’s ketogenic journey and how it impacts both our lives. I’m back to highlight something that impacts us all on this journey in different ways and how we as a family manage it.

We have just returned from a magical trip to Disneyland Paris. We were able to enjoy the 30th Anniversary magic but not quite ALL it offered. We enjoyed the Light Show, the Parades, spotting the new character costumes and shopping for memorabilia but we could not fully embrace the food. We watched others munching on Mickey icecreams, biscuits and cakes. We watched other children giggle as they got chocolate all around their faces and be cooled down by chilled delights. We watched on but couldn’t join in.

We as a society continue to attach so much joy to food and when your diet is restricted in any way its easy to feel robbed and to feel like joy is being snatched away. It’s particularly difficult when balancing a medical ketogenic diet as there are no alternatives like there are for gluten intolerances for example. It can be very hard to focus on the benefits when presented with the negatives.

Being over 4 years in to a likely lifelong journey, due to the diet being Ella’s only treatment, both Ella and I have mainly accepted that we have to make some adjustments to how Ella gets joy from the food. We take homemade cakes, chocolates and other snacks with us. We make adjustments to her diet so she can have the occasional treats such as McDonalds when we are out and about. Our local icecream man holds some icecreams I have purchased on his van so Ella can join in with getting an icecream when he does his rounds. During parties, I check what is being served and make Ella’s food look the same. Pizza Express cook a pizza for Ella so she can join in there too. We do our best so Ella can get joy from food too.

That being said, sometimes it sucks. Sometimes Ella wants to eat an icecream on a day out to the beach. Sometimes she wants a bite of the chocolate bar her nan is eating. Sometimes she wants to have a “proper” babychino in Costa. On those days, we embrace the anger and frustration. We sit with it and allow the feelings. Both Ella and I will sometimes want to cry about it all and just give up. Those days happen and its OK. On those days, I work hard to consider the alternatives: seizures; movement episodes; non breathing; more regular hospital visits. I also look at other families and children who don’t have any treatment option. I work hard to ensure that we don’t allow the feelings of frustration and missing out take away the joy of LIVING. Something we are very blessed with.

If you too, reader, have days where you start to feel like joy has been stolen, I encourage you to take a moment to sit with the feelings but don’t stay there. Shift to look at what other joy you have. The sparkling eyes you see when the side effects of medications lift because you can wean them due to the diet. The fact your child is in hospital every now and then rather than every week. The fact food is working as a successful medicine. We can all find joy around us when we look. Sometimes our joy just looks different to everyone else’s and that is OK too.