I am very fortunate as I can probably count on the fingers of one hand the times when someone has said something negative to my face about Daisy, and even those times the intention was not spiteful, it was more a case of the person who made the comment not thinking it through and quite clearly being from a different value set to me. Like the nurse, who in the middle of the night, as she brought in yet another IV for a screaming Daisy, turned to me and said, in a very matter of fact way "do you ever think that Daisy just shouldn't have been here..."
The one that I think about a lot was born out of ignorance and sexism and a whole range of values that just don't feature in my world - and it was meant kindly...I was picking up my youngest son from school, having made the usual mad dash home from the hospital where Andy and I had swapped shifts so that we could do the whole parenting by rota thing we had off to a fine art when the children were a lot younger, and I was making small talk with one of the other waiting mums. I updated her on Daisy, this was the time before she developed full intestinal failure and TPN became part of our lives but we were still struggling with so many hospital stays and unknowns, and I told her that she was life limited and that was why she had been referred to the hospice from such a young age. And out of the blue, very matter of factly she said " that's such a shame, I suppose at least she's not a boy, that would have been worse"...... at that moment the children were dismissed from their class and I was left to pick my jaw up from the ground.
What had she meant "at least she's not a boy", was it really in her eyes the fact that an imperfect son was a more cruel blow than an imperfect daughter...where did all that rationale come from. Was I really hearing from the mouth of a reasonably intelligent woman that the life of a son ranked higher than the life of a daughter?
Her comment - made over 5 years ago now still plays on my mind. She is long gone, moved out of the area with her 3 perfect sons, I don't think I would even recognise her anymore but the comment still hangs in the air.
Just because she is disabled, just because she has a learning disability, just because she is life limited, just because she is a girl - Daisy's life is no more and no less than anyone else. She has as much to give in her own way, we have as much to learn from her as any other child. She has made her mark on this world in such a significant way - she is my child, her worth is not based on her gender, her disability is not her identity.
She is Daisy, and like it or not, she's here to stay.
Happy International Women's Day by the way!
Websites close to my heart
- Shooting Star Chase (Daisy's Hospice)
- Great Ormond Street Hospital Children's Charity
- Torbay Holiday Helper's Network
- Sick Children's Trust
- Daisy's Angels - Facebook Page
- About Costello Syndrome
- Asperger Syndrome
- Caudwell Children
- Together for Short Lives (Children's Hospices in the UK)
- Costello Syndrome Support Group
- Give Kids The World
- PostPals - Putting Smiles on Sick Children's Faces
- Singing Hands (Daisy is their No1 Fan!)
special needs (86) costello syndrome (45) disability (33) Great Ormond Street (19) aspergers (19) TPN (18) cancer (18) carers (16) parenting (14) autism (10) shooting star chase (9) children's hospice (8) Blogging (6) family (6) SEN (5) hospice (5) Mitrofanoff (4) diagnosis (4) BIBs (3) Britmums (3) Neuropathic Bladder (3) communication (3) holiday (3) benefit cuts (2) david cameron (2) gastroenterology (2) singing hands (2) travel insurance (2) BSL (1) Child Hospice (1) Colectomy (1) antibiotics (1) benefit scrounger (1) bladder (1) france (1) health (1) line infection (1) makaton (1) portage (1) siblings (1) sign language (1) sign supported english (1) ultrasound (1)