Tom Nabarro
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Enjoying fatherhood immensely and want to find some time to write about it properly, rewarding without measure but not without challenges and frustrations. Very lucky to have such a good support network and wonderful family.
work is interesting challenging (working on a Exascale computing project for Intel) and it is good to be part of such a serious team, very nice to be working within an infrastructure where I can focus on development and offload testing/documentation/project management to specialists (I am used to have to do a lot of that myself). We embark on some house renovations in order to make use of the downstairs more functional and create a room for Ori, encountering various hurdles but builders have been able to get on with the foundations/digging (currently foundations flooded due to rain though).
Continuing to enjoy watching Ori grow in body and mind, he continues to be as cute as ever and entertains us with his beautiful noises and insatiable curiosity.
We thoroughly enjoyed Wilderness festival in Charlbury/Cornbury estate, lovely birthday with family and I’m very excited about Anjunadeep open-air festival in London on Sunday with an incredible lineup.
Work at Intel continues to stimulate and is ramping up steeply with a challenging Exascale project with ambitious timelines. I’m lucky to be working closely with some incredible engineers across the globe.
Tribute to Stephen Hawking at his memorial service in Westminster Abbey:
We are all grateful to be here to celebrate the legacy of Stephen Hawking.
Stephen heard that I had broken my neck early in 2008 – through Lucy. He immediately reached out to help our family.
He helped us recognise and face challenges in our lives with positivity.
Stephen showed that when time is precious, we must make space for what makes us real. He was exceptionally efficient at choosing his words and making them count. It took him a long time to create his words so he didn’t chitchat and got straight to the point. He had a wicked sense of humour and admired beauty, and even though time was tight he always made sure to share his love for life. That is what made him accessible to so many of us.
Stephen showed how we should all expect the best from one another. Why? Because with higher expectations come greater achievements. He demonstrated that disability is not something that prevents success: the supposed constraints are often imaginary. He showed that we should encourage achievement by expecting it of everyone. We should understand that people have differing abilities, whether visible or invisible, and encourage the best of them. In this way we can all be enabled to be productive, to feel valued and to share love – whatever our ability.
Whether in the NASA space simulator or the CERN particle accelerator Stephen would stop at nothing in working for the good of all.
My wife Ellen and I are besotted by our son who was born hours after Stephen’s passing. Stephen is Ori’s middle name. We look forward to Ori learning about the indefatigable and wise man who really has influenced the world for the better.
Ori’s generation can emulate Stephen in pursuit of sustainable and rewarding futures for all humanity. It is they who will carry Stephen’s influence across the universe.
Media links:
https://mobile.twitter.com/itvnews/status/1007607090356064256/video/1
https://www.theguardian.com/science/2018/jun/15/stephen-hawking-ashes-interred-westminster-abbey
https://www.westminster-abbey.org/abbey-news/ashes-of-stephen-hawking-buried-in-the-abbey/
Singing along to oasis classics with ori this morning and realised how closely the lyrics to Wonderwall describe my feelings towards him. what a beautiful being!
Sad to see @FourTet set reduced because of health and safety concerns, @FloatingPoints on the other hand best Electro/alternative/tech live production set, up there with @JonHopkins / @Kolsch / @JamesZabiela
Great to talk with @satyanadella about coding by voice, #MicrosoftAndLinux and opportunities for multi-modal #AssistiveTechnology powered by #TransformativeAI. Riveting talk from @ChrisBishopMSFT about data expansion and AI research programs at @MicrosoftResearchUK.
links to 2 lovely articles about our adventures in the daily mail
http://www.dailymail.co.uk/femail/article-5693311/Couple-dating-three-years-man-paralysed-neck-baby-decade-later.html
and the previous one
http://www.dailymail.co.uk/home/you/article-2511294/We-talk-Tom-Ellen-life-changing-accident.html
There was also an interview on Sky News on Tuesday 01 May 2018 and more to come 🙂
He is much better now, having fully recovered the meningitis with quickly applied antibiotics, team at the John Radcliffe Hospital were exceptional!
We travelled up to Dumfries, Scotland over the long Easter weekend to stay with John (Ellen’s father) and family accompanied by Mandy (Ellen’s mother) and it was relatively relaxed, with Ori being predictable and sleeping for good periods of the day/night (it seems we are very lucky after the initial rocky period). Ellen has been sleeping when the baby sleeps and is coping with occasional sleeplessness amazingly and overall doing incredible with feeding and caring (unsurprisingly).
Ori is very beautiful and extremely alert, focusing on faces now over around a metre away and generating all sorts of noises that make me smile. He is giving joy to everyone he meets and has therefore picked up a new nickname “boj” (bundle of joy).
As one can imagine, I am finding the physical limitations imposed by disability difficult with regard to parental interactions. I would love to hold and cuddle Ori in a hands-on fashion but instead we are maximising the time spent skin to skin.
It does feel like he is relaxed when we are together and enjoys the vibrations when I hum. We just spent an hour together whilst he took his antibiotics and he was calm and angelic.
This does seem to be a good use for my comfortable soft belly.
We have been enjoying every moment with Ori, every squawk, gurgle or piglet like noise. He enchants everyone who sees him and is extremely adaptable to most environments. He lets us know what he needs very efficiently whether he is needing to fart, burp or feed. He is gaining weight very nicely and sleeping for long lengths of time. He is being visited daily for his infusion of antibiotics, which should be finished in 3 days. We are overwhelmed with the generosity of gifts from lots of people and he is now extremely well-dressed as a result and he has been relaxed with the lovely guests we have entertained. We are very very happy!
Ellen and myself are very happy to introduce “Ori Michael Stephen Nabarro”, who was born on March 14 2018 at 04:54 weighing 7lb 6oz after a taxing, terrifying and incredible labour.
I would never have thought I could admire my wife any more then I did already, but witnessing the process of birthing another human has added another dimension of appreciation that I never knew existed.
Ori had a difficult first few days, being diagnosed with meningitis after a chest x-ray and lumbar puncture performed due to fast rising infection markers. He is reacting very well to quickly introduced antibiotic treatments and we are forever indebted to the brilliant team at the John Radcliffe Hospital women’s centre including those at the maternity wards and the high dependency unit. Ellen and Ori should be returning home from hospital on Wednesday and unsurprisingly the symbiotic relationship between mother and son seems flawless and he has recovered health and peace quickly. I am enjoying skin to skin time with my son and am working out sounds that seem to calm him.
Some explanation of the names we have chosen:
Ori translates to “my light” in Hebrew.
Michael is after my grandfather on my mother’s side with whom we are very close, we lived with him for 3 years before he passed and both loved him very much. We relish the chance to bring up our boy in the same space and under the same tree where we shared time with Michael, his presence is still strongly felt.
Stephen is in tribute to Professor Hawking as the timing of passing and birth is significant and marks both the entrance and exit of great souls into this world (and who knows, maybe some transference). Stephen and his daughter Lucy are both good friends and have helped us significantly in adjusting to life’s curveballs. He is a man who has not only made repeated universally valued and recognised contributions to science, but someone who has also inspired countless people to reassess their definitions of what they understand is “possible”. He has also performed the crucial task of raising the bar of expectation for people with disabilities around the world.
With love and gratitude,
Ellen, Ori and Tom
Spent the evening with Ollie and Ruth who are cycling around the world to experience and learn about kindness https://www.intandemstories.com/ , such a lovely pair of people embarking on an adventure, someone prepared but also entering into the unknown. This seemed like we were sharing a period of trepidation with our adventure being the bringing of a new life into the world.
Follow their trails on the blog! https://www.intandemstories.com/
Photos
