My Journey with Spina Bifida: Me and My Backbone

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Description

From her first breath in this World, Siobhán and her parents were given the usual diagnosis of everything that wouldn’t be possible for a child with Spina Bifida. A diagnosis of the most severe form, Myelomeningocele, came with the expectation of scoliosis, hydrocephalus and incontinence throughout Siobhán’s lifetime. The scientific meanings of these words were as alien to them as they may be to you reading this but not the significance. Operation after operation followed. Siobhán would never lead a normal life and she would certainly never walk! Or would she?

Armed with supportive, positive parents and a gentle, sensitive dog called Major, Siobhán took her first wobbling steps, as any child would. Perhaps with a more imperfect gait but a gait all the same. Siobhán’s gait but don’t we all have one of our own. Slowly but surely, Siobhán used her new friend Major to explore the World around her.

By the time I met Siobhán, she was able to walk by herself. I remember a tiny little junior infant starting at our school and I thought she was a doll of some kind. A gorgeous little thing and a force of nature. It may have been visually obvious that there was some kind of disability; she was more delicate than the rest of us but she certainly didn’t let that stop her and she hasn’t to this day. Plus, she always had that killer sense of humour. Far more astute and quick mentally than the rest of the children her age, in my view.

However, life hasn’t been easy for Siobhán or her family. The point is, positivity has reigned. Had her family treated her differently because of her disability then perhaps she wouldn’t be where she is today; walking, talking (you could muzzle her at times), getting on with her life, living independently and working in the Planning Department of Clare County Council.

Siobhán’s book delves into the nitty gritty of a life with spinal issues, kidney failure and reduced lung capacity but always takes a positive view of life with a disability. It hasn’t stopped Siobhán from being a “normal” teenager or “normal” adult and what is normal anyway!? Who decides that? Don’t we all have a disability of some form, although it may not be visually obvious! Aren’t we all lacking in something; from empathy to eye-sight and beyond!

I urge you to read Siobhán’s book “My Journey with Spina Bifida: Me and My Backbone”, which will discuss disabilities and the complications that go with them but it may also teach you something about getting on with your short life. Siobhán has certainly taught me a lot.

Additional information

Weight 340 g
Dimensions 15.5 × 23.5 cm