Andy Nimmo. 26/11/62 - 14/12/15. RIP.
The moment we heard the news that Andy's cancer was now inoperable we knew that the clock was ticking like never before. We went home and booked flights to Scotland to see his family but first was a very important date, one that had been in the diary for a long time.
Even though Andy had been told he only had weeks to live it was really important to him, and me, that we attend the premier of a film which told the story of a dear friend, you can read about Danny's story in the piece I wrote a few days later, on World Aids Day http://www.independent.co.uk/voices/growing-up-in-the-home-counties-as-a-child-with-hiv-clinics-with-codenames-and-secrets-from-a6755496.html.
We flew to Scotland the next day and had a wonderful 24 hours with friends and family - how joyous to have the privilege of saying goodbye and making sure nothing was left unsaid. It was a bittersweet flight back to London but we came home to a wonderful week with family and friends, spending time with our children, spending time with our friends and spending time with eachother.
Last Saturday we ticked off the last bucket list item as our friends at Believe in Magic and Arsenal Football club organised the best day ever - a box at Arsenal to watch a premiership match.
If you were told you only had a few weeks to live what would you do? We filled every day, we saw friends and Andy was able to say the things he wanted to say. Friends flew in from all over the world, we shared the happiest of memories, we cried many tears.
But the most difficult thing was to think about the loss in our little family unit of six. Every time we thought about him leaving the tears came and it was too painful to think about. In a way last week we were saved from having to think too much by another Daisy curveball. Andy had to go into hospital on Monday as he was dehydrated and needed iv fluids, 24 hours later Daisy was blue lighted to our local hospital as she was having multiple seizures and needed to be started on her second line rescue medication. I was caught up in just being the plate spinner and had little time to thing of what was to come.
Daisy was stabilised and came home. There was hope that Andy could have a palliative procedure to his liver that would maybe buy him some more weeks, maybe months. But it wasn't to be. Andy became too poorly and last Friday I moved heaven and earth to bring him home to begin his final journey.
He sat in his chair at home, had a few sips of beer , watched some TV, enjoyed the chaos of a typical Friday evening in our home. Then, the fatigue overwhelming him, we managed to get him upstairs and into bed.
We spent the weekend camped in our bedroom, the children coming and going, stroking his hair, talking to him and telling him how much they loved him as he slowly deteriorated.
Andy passed away peacefully at home at 1pm today, Monday 14th December.
He waited for Daisy to leave the house safely on her way to the hospice before he died, knowing how upsetting it would be for her to be in the house at the same time. I told him he could go and could not understand why he was still fighting and lingering on. And then it clicked, even though he had been unconscious since the night before he raised his hand and tried to speak as Daisy shouted goodbye through the door. He needed to know that she was safe in order to be free to leave.
In control until the end he took his last breaths while I held his hand , he looked at me one last time and peacefully passed away
I am heartbroken but so thankful for 27 amazing years we shared together, we did not take a single moment for granted, he was and will always be my soulmate.
His legacy lives on in his four incredible children. What an absolute honour to have been able to give him a good death and to have been part of his life.
I am sitting here tonight, reading all the wonderful messages and tributes that have been sent to Andy. He touched so many lives and it is giving us such immense comfort to know how much he was loved, we knew he was amazing, to hear others reflect it back in their anecdotes warms our hearts.
Daisy is safe in her hospice tonight, as always they have been our safety net in times of crisis. Tomorrow I will go and tell her that this time the doctors could not fix her Daddy. Then we will look at all the lovely pictures of things we have done together as a family, we lived so much, we seized every moment, we took nothing for granted.
Thank you Andy, for everything.
Rest in Peace, my love.
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)