The day Daisy was born she was stabilised and then rushed to the neonatal intensive care unit, not knowing what the future held I asked our local priest to come and baptise her on that day, a sort of holy insurance policy...
When she came home two months later we held a blessing service for her on the same weekend as her big brother's Holy Communion, so it was an excuse of a big party to welcome Daisy to the world and to mark Theo's transition from his baby years as he grew up.
Having studied Anthropology at University, I have always been a big fan of these rites of passage, marking transitions into various life stages - being catholic helps as we do ceremonies like this pretty well.
I didn't dare hope that one day I would be able to see Daisy make her First Holy Communion, so much has gone on in her life since her arrival in the world it seemed a distant goal. But today, with the odds as always stacked against her, loaded up with intravenous pain relief and anti-seizure medication I am able to say that ALL my children have now make their Holy Communion.
Over the years we have added to and expanded our vocabulary of medical and special needs terms - in the early days it was the language of NICU (neonatal intensive care unit) with NG feeding, cpap, jaundice and corrected age creeping into our conversations, then it was genetics speak, then Costello Syndrome speak and before long we found ourselves holding our own with Daisy's doctors as we spoke about gut inflammation, fluid balances, neuropathies and myopathies, stomas, catheters and TPN. You know you're an intestinal/bladder failure parent when you know all the reference ranges for your child's main blood tests, or you start photographing the different shades of bile that they produce from their free drainage, or when you get excited because their fluid balance chart adds up!
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)