Earlier this week, I took my disabled son Zac back to Great Ormond Street Hospital in London for more tests to see if his adrenals have started working again.
Following his 10 hour pioneering surgery in January to give his paralysed face a smile, he was unable to breathe due to the combination of his paralysed vocal chords with throat swelling from such a long anaesthesia.
Unfortunately, the steroid they had to give him to open his airway shut his endocrine system down and his adrenals stopped working, leaving him with a life-threatening condition we have been managing ever since.
He absolutely hates having blood tests after one time when the doctor’s hand slipped and he ended up stabbing him in the arm with the needle and causing a bleed.
As the nurse began the procedure this time, he started to cry and resist until he stopped and said very clearly “Let me do my deep breathing first”.
And then he managed to calm himself down with some deep breaths until he turned to the nurse very bravely and said “Do it!”
He continued taking his deep breaths to try to keep calm whilst I whispered to him about what a brave Knight of Avalon he is.
And then I felt a lump in my throat and my eyes well with tears which I managed to hide from him. It’s very rare I cry in hospital. After 20 years of nursing my two disabled children, 19 operations and numerous hospitalisations, I have learnt how not to have an emotional response, or at least how to control it.
But there was something about witnessing the courage of my disabled, autistic son trying to work through his fear in a way most adults run from, that opened another gateway in my heart.
With deep gratitude to you all for your beautiful prayers and messages, to the NHS and to my son for teaching me every day to be a bit braver.
Annabel Du Boulay ?♥️?
Rose Priestess of Sophia-Magdalene
Priestess of Avalon