Be not afear'd...

Now that we have collected Jordan's ashes, it occurs to me that I should shift the emphasis of this blog a little, to encompass the many processes of bereavement. If the last few weeks have shown me anything, it is that each individual has a unique response to the death of someone they love. For the record, I don't think there is an afterlife; Jordan is beyond my reach and I am beyond his. I don't think we will ever reunite. I daresay that comes across as very bleak. But it does make me see clearly that this life is not a rehearsal for anything, so it's time to carpe a little diem. If anyone has links to posts about bereavememnt, particularly if they relate to special needs, do get in touch. The title of this post is from Caliban's speech in 'The Tempest', one of Jordan's favourite Shakespearean plays and which was read out at Jordan's Humanist funeral.

Celebration of Jordan's life.

Jordan's funeral, and celebration of a life well-lived, will take place at Honor Oak Crematorium (also known as Camberwell New Cemetery) on Wednesday the 19th December at 2.30pm. We have engaged the services of a Humanist celebrant. Thereafter to The Old Nun's Head pub for the wake. All welcome but RSVP so I can let the pub know if more refreshments are required. Should you wish to, please make a donation to the The Meningitis Trust in Jordan's name. We'd be well chuffed.

Jordan Luke Perry-Smith 2/02/91 - 24/11/12

Well, here's a blog post I never thought I'd write. I'm sorry to tell you that my son died very suddenly and unexpectedly last Saturday. His final words to me were 'can you pass me the scissors?' as he wanted to open a packet of pasta for his lunch. Literally seconds later, he had a massive seizure and his heart stopped. The ambulance was there in a flash and a team of six fought to get his heart started again. We transferred to King's Hospital (who were brilliant) where they tried again but it was no good. They stopped resuscitation after an hour. His time of death was registered as 14.45 but I'm reasonably sure that he died at home. I think he wasn't in any pain. His sister, carer and I sat with him and I'm glad to tell you he looked very peaceful. His poor dad had to fly back from Thailand, where he'd been on business and saw him on Monday. The funeral's not for two weeks or so while they conduct post-mortem tests to confirm a seizure. Now I must away to tend to my family. If it seems like I'm coping, well, I am. Six months from now I'll be howling at the moon.

Blimey!

Has it really been more than a year than since I blogged? All going quite well, I think. Jordan has lost a lot of weight, which has improved his mobility. He really enjoys college and is trying out taster days for horticulture and art (with a view to pursuing further courses next year). Fixations to date include relatives (and visiting them), dressing up like Bill Sikes out of 'Oliver!' and the wearing of denim jeans as opposed to tracksuit bottoms. The absolute favourite though is our proposed holiday in Barmouth, Wales at a place called Twr Mynach. It really does have a tower, much to the boy's delight, as he thinks it's Hogwart's. A re-enactment of Rapunzel will take place.

Portrait

Jordan's dad knows the artist Marc Quinn and recently commissioned him to do this portrait of Jordan. It's a photo-realist picture that measures about 3 feet by 4. We're knocked out by it!

At last.

Good news!

Sanity has prevailed.
Steven Neary will be home for Christmas with his dad.

Hillingdon Council should hang its head in shame.

Don't bother knocking on the door of Hillingdon Council and expect common sense and expertise knowldge to answer.

Apparently they don't have any. Oh, and that goes for respect for the human rights of those with autism.

Read the following link and weep. If you get a 404 message, it's the post on the Orwellian Present you should read.

When you're done weeping take a moment to sign the the petition.

For shame.