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14/06/2019

Poppy’s Favourite person


By Victoria Prebble

At the point of Poppy’s diagnosis, when she was around 15 months old, the most painful thing that struck the deepest and seemed the main cause of pain was that my girls would not have a typical sibling relationship.

When we were told Poppy would be unlikely to walk or talk and would be severely affected by this syndrome, all I kept saying was…. but I want them to go to school together. I couldn’t accept that we were about to embark on a very different path and it took some time for the realisation of what we were dealing with to sink in.  Working as a nurse myself it was a friendly face, a fellow colleague with us in the clinic when we were given this news.  I could see the pain in her face as the news was broken.

When we’d found out we were having another little girl, I was ecstatic. I was imagining pillow fights, clothes swapping and girls being girls. Especially as Daisy and Poppy were fairly close in age, Daisy was just 3 when Poppy was born.

The grief struck following diagnosis and it was some while before it would lift. However, it did lift. Time passed by we learned to live alongside Rett Syndrome as a part of our new life. Daisy and Poppy soon showed me that love transcends all barriers.

It is hard to put into words how incredibly proud I am of the devoted love and commitment that Daisy shows her sister. Their bond is beautiful, beyond words. Daisy will not have Poppy left out of any activity and always helps her to join in, she showers her with kisses, draws her pictures, brushes her hair, feeds her and makes sure she has all her favourite things around her. I don’t ask her to do things for Poppy, she just naturally does them. She is her best advocate and her love is fiercely protective.

Poppy returns this love by laughing the loudest at Daisy. The squeals are sometimes piercing. She becomes visibly excited as I tell her we are going to collect Daisy from school. Poppy achieves more in therapies if Daisy is there spurring her on. Daisy is clearly Poppy’s favourite person and the best and most natural therapist around. Their relationship is love in its purest form.  It makes me weep with an equal measure of deep pain and sadness and ecstatic joy and pride all at the same time.

When I occasionally ask Daisy how she feels about Poppy having Rett Syndrome; she says it makes her feel a bit sad that Poppy can’t talk to her and run around and play with her. While she acknowledges these feelings she also beams widely as she says it doesn’t matter though as Poppy is so cute and she likes making her hair into an onion shape when we are washing her hair in the bath.

My hopes for Daisy are that if nothing else, she sees the struggles of her sister and couples that with the deep compassion she has naturally been bestowed with on this journey and goes out in to the world and uses that to do something really beneficial with her life.

Poppy is only 4. I am only too aware that we have a rollercoaster ahead of us. The deep pain of living with and coping with Rett Syndrome is not easy; the struggles Poppy faces realistically will become more difficult as she gets older. There are always worries and what ifs. The future is somewhat scary – will Daisy feel overwhelmed at times with the pressures and responsibilities of having a sibling with Rett Syndrome and all it entails?

I am grateful though, that with all the work being done by Reverse Rett and associated organisations, the future looks brighter.

Science is progressing and treatments are round the corner. This is thanks to all those working tirelessly to improve the lives of those with Rett Syndrome. We will take any improvements going.

By Victoria Prebble