TheCourageTo KeepSurviving

I am SO proud of my daughter Jasmine who worked her butt off and managed to achieve grades well above her predictions in every subject in her GCSEs exams.

But even more, I am so proud of who Jasmine is.

When a family has a disabled child, much of the focus by necessity has to flow to that child, especially in our family’s experience where we were having to nurse Zac intensively for years.

I have always been acutely aware of Jazzy’s role in our family as the healthy, non-disabled child sandwiched between two children with their “big” stories of having been born with life-threatening syndromes and multiple disabilities.

This is a very challenging role for her to hold. Who is she within our family? What’s her story? Is it as valid? She has had to navigate all these thoughts and feelings around her own sense of self and importance, as well as all the conflicting emotions that come with being a Young Carer to a severely disabled and autistic brother.

I am so proud of the way in which she has been able to articulate these different light and shadow emotions from the pure, unconditional love she feels, to the times of deep fear and grief, to feelings of frustration, anger and resentment that are all part of the experience.

At the very tender age of 6 years, her dreams of having a healthy, non-disabled brother were shattered. Not only that, but she was separated from us for 5 months whilst we lived in intensive care with him, only coming to stay with us at the weekends when she lived in an environment where death and loss are constantly present.

Then when we brought him home, she had to help us resuscitate him repeatedly, day-in day-out for months, holding the oxygen close to his face whilst we suctioned his airway so he could breathe again. She developed a phobia of choking to death and dying, which she had to bravely work through.

And at the same time as coping with all this, she was experiencing being bullied at her new school, without any of her extended family and friends close by to support her, having just relocated to Somerset.

All these experiences took their toll on Jasmine’s schooling. It is very difficult for a child to process and retain information when they are living with the constant stress of life-threatening emergencies. And so she struggled academically, which was another challenge that she had to navigate.