We have reached a big milestone...I was so busy getting on with life I didn't even notice that this is the longest we have spent out of hospital since 2008, our average prior to this being 21 days between stays. Much of this is down to the fact that Andy and I now can do so much of Daisy's care. Situations that would have ended up in an admission now are managed at home.....how far we have travelled that administering IV fluids, taking bloods, changing ileostomy bags are now part of our daily routine.
This life is so normal for us - each morning I spend an hour in Daisy's room,disconnecting TPN, changing bags, taking bloods all the time checking out of the window to see if the school bus has arrived. Sometimes it arrives early and throws me, sometimes when it is late I get a chance to gulp back a coffee before taking Jules to school. The capacity of the human spirit is amazing, only very occasionally I step back and look at my life. There was a time when we were first out of hospital post-ileostomy when I thought, how can I keep this pace up? But I do, and the days go on and before we know it we create a normality out of this madness.
I never cease to be inspired by the other parents I meet along the way, parents who like us swing between hospital and home and try to make a normality out of this world. This week was sad, two mothers I had come to know over the years lost their children. One had spent years fighting the cancer that can often come with Costello Syndrome, the other saw her child slowly and painfully decline with Huntingdons Disease, but when I think of these mothers I don't think of their struggles, I think of how they embraced every moment they had with their child and how those children packed a lifetime into their short lives. This is what we are trying to do, not mull over the whys and wherefores but just get on with life and pack as much as possible into the time with have with Daisy. So, in November the Nimmo Family will be travelling courtesy of a wonderful charity to Disneyland - we are going to have fun and live life to the full and create some fabulous family memories and not worry about the future, that's for another day......
In loving memory of Micah and Brodie
(and Craig, Bret, Willa, Zachary and all the children who have left this world too soon - RIP)
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 (85) costello syndrome (44) disability (32) aspergers (19) Great Ormond Street (18) 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)