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  • Writer's pictureto yoke

Precious uncertainty

Updated: May 16, 2020


So as changes go, we are coming up to 6 weeks of social distancing in our household as it started off with my youngest displaying respiratory symptoms and not being able to get enough oxygen into his body. I know this because we have an oxygen monitor from the days of my daughter being nursed at home (due to being fed through the veins at time - long story) and he has had a situation before where he has struggled to breathe, luckily we have an inhaler. So I cancelled my yoga classes concerned I'd be a carrier of Coronavirus and everyone in our family unit stayed at home.


I have wondered perhaps why, in these times of the lockdown and this Coronavirus hovering over everyones heads, to why I don't feel the same anxiety over the changes we have faced. I think it has finally and explicitly dawned on me why today.. after having a remote and last session for the 3 year course that got me to where I am today. The course that I decided upon after my daughter come off 'being fed through the veins' to help with my own anxiety and recovery from chronic stress, that has led me here, was prompted by the experience of keeping my daughter alive for 343 days in hospital when she was born due to an unfortunate situation of having not formed properly in utero.

I became pregnant with my daughter during 2012 with an almost 18 month old, during a Yoga Foundation course in Central London, whilst having gone back to work 2 days a week, but having been demoted to desk girl due to the reason given of 'not being able to look after clients' anymore in Fine Art Logistics. I remember there being huge pressure, self-created and otherwise to prove myself as a super woman/super Mother at the time, someone who had a child, could work and earn a salary, manage an NCT grant to set up a Breastfeeding Peer Support Network as well as partaker, take on a yoga course, (not with any aim of being a teacher particularly), to be able to organise a wedding and somehow organise the buying of a small property in the outer regions of London with 200k.. those days were incredibly pressured (due to perspective and choices based on that view) looking back, but I would unlikely have done it any differently with the situation we were in. In some ways we were privileged, but in my body I did not feel that was the case at all. I felt as though I constantly had to prove myself as a Mother at 26 years old.. which, took its toll. During the yoga course that I was on I found out that I'd become pregnant, doing lots of strong abdominal rotations, backbends - chakrasana all the like, and partaking in 'gong baths' during the 2nd trimester already knowing I had a foetus growing inside with abnormalities. The abnormality being abdominally located!


In a normally developed foetus the intestine is absorbed into the body, however with my daughter it wasn't, and so she had an increasingly complicated time growing due to a very precarious vein attaching her intestine, stomach, gallbladder and ovaries (later on) to her belly. In utero the intestine became increasingly enlarged absorbing all the amniotic fluid in the womb and she stopped growing. She was kept inside until the absolute last moment they, the consultants etc thought they could get away with. She was then born by c-section in a room of 15 medical staff and wisked off to theatre, I don't remember seeing her with my own eyes - just the photos that my husband took just after she was pulled out of me.

But my point here is that the time that came about for the next 3 years were the most stressful, stressful really doesn't encapsulate the need for complete reliance on adrenaline to get us through - me mainly as I can't talk for my son, who was 2ish when she was born and her Dad. My son didn't meet my daughter until 5 or so months after she was born due to the restrictions on NICU. That time was traumatic, it was mind-boggling - it was all systems go, for a very prolonged period of time. In hindsight it was a long-term ongoing trauma with lots of more intense episodes taking the form of emergency surgeries, in amongst a very long period of time to which there was no respite. It wasn't just that she was in hospital for almost a whole year that was the most traumatic element although having given birth to a baby that wasn't necessarily going to survive and leaving to go home without a baby in arms was fairly traumatic on the scale of life-events, but it was all of the complete day to day, hour to hour uncertainty of her existence, fire-fighting episodes of emergency surgeries that kept going wrong. She didn't leave NICU like all the other babies, but waited 6.5months to be well enough to go down to the Paediatric ward, not to get better but to manage her situation enough to go home. Although on the Paediatric ward I was able now to stay the night, which I promptly did - I found that with a 2 year old at home and the broken sleep with lights on and constant tinging of monitors too difficult to sleep and quickly decided with great guilt that I couldn't stay the night and would just carry on with my day shifts there (and husband on night shift straight after his shift finished at 6pm he'd get a bus from Piccadilly to see her before coming home for bed) whilst my eldest was at nursery and being looked after my grandparents who would make the trip from Suffolk just to pick him up from nursery.


My body could only function in the most primal way at this time - in 'fight or flight', the nervous system on high alert, for months. I did not really catch up nor did I have time to catch up and grieve, because I was busy on high alert with my son at home in some state of emotional stability. This was because I felt that we were, along with the staff at the hospital - keeping my daughter alive, and knew that if she didn't make it the only thing I could be rest-assured by was that we had done our best. We'd actually already said goodbye to her in the first 24 hours because 3rd surgery in (the first went wrong - compartmental syndrome - had to be reversed soon after and then again because the bowel was dying just sat on top of her tiny orange body), we made peace with it internally because throughout the pregnancy had been prepped by the simple fact of having a birth defect present that her life definitely wasn't a given. The consultant suggested very late on in the pregnancy, at about 28+ week gestation that we might consider an abortion. The rhetoric from the chaplains that went around praying for the babies in NICU was that these experiences were, each and every one of them a gift. I have distinct memories of being at the hospital cafe imagining the beauty of celebrating the potential of life because we had just been told that she wasn't going to survive by the surgeon - by making a journey and walking through fields of lavender, to make peace with it.

In my body her death was experienced as real, I could let go. But, my daughter survived all of that time and is still with us today, doing well, having been one of those miracle babies often spoken about, not that we speak of it. Nowadays it is more complicated than that. There still is a heavy weight, (or perhaps a lightness) but this past informative LIFE-CHANGING EVENT has formed our decisioning making and the way we prioritise from moment to moment ever since. The realisation of complete groundlessness, uncertainty and the complete in your face contact with death being a reality, very real at that time, rammed itself into our lives quite forcefully. We welcomed it. We fully embraced it. It changed us.


Almost like a whole holy joke, my husbands fairly new dedication at the time of that 'opportunity for change' was a strict practice of meditation following the Buddhist Zen Rinzai tradition at the centre in Eccleston Square, which became quite in-line with meditation on death. We seemed to develop a mini library of books on death to get even more fully immersed, one by Sherwin or something or rather who was a name that ended up being my youngest's middle name! It didn't need to be a theoretical undertaking, it was our reality. The uncertainty was absolutely real. The groundlessness experienced then, stayed with me for a good 6 years, certainly up until this recent lockdown.

The cortisol-driven means to survive took years and years and years to unravel. I was too busy keeping my daughter alive, keeping my son alive in some resemblance of normal and worrying about him the effect everything had on him, and then getting pregnant a couple of months after she was let out of hospital to be fully nursed at home with us in our 2 bed apartment (no garden) with 6 day/night carers to keep us going with.. There are so many elements stacked on top of one another that amount to an overwhelming ridiculous time, years and years on I was unraveling what this all meant to my inability to relax and feel like I belonged and was worthy. I lived with what felt like a rigid black hole inside my chest once we moved out of what become our home in London where we had all the professional support keeping us propped up and functioning. We moved after 3 months of being homeless and cramming into the grandparents house (2 rooms for 5 of us and all the medical kit) to a place in Cambridgeshire with a garden, a local specialist hospital and a school walking distance - these were the parameters of our search and we landed in a new place with no attachments, no work, but a garden and a school to start existing and hopefully build ourselves up to a 'fully functioning' family of 5. There was fresh air in this other place and we felt that was a priority for us all.

The uncertainty that we lived with (but with an inner certainty/gut feelings guiding us) was at the core of so many areas of family life, my unexpected pregnancy with my youngest, the concern that I would not be able to carry and was having even more check ups with him that I ever did with his sister because I'd had a LEEP and it had drastically thinned my cervix.

We didn't know where we would end up living but ended up in the stop-gap place - originally intended to give birth to my first and then figure out where we'd move out of Central London and settle down but ended up having 3 children there in the space of 3/4 years, none of that was a plan.

This isn't a complaint, this is just how life turned out. Uncertainty was to a certain extent at the core. or perhaps uncertainty would be the wrong emphasis - circumstances presented us with the constant re-adaptation.


Fast forward a lot of slow, and fast, progress 6 years on; we have stability, a comparative consistency in our lives. When we started our self-isolation, in timely fashion we found out that J's temporary work at Cambridge Library had been made into a permanent role. This April it will have been 4 years since he left his last permanent role at The Royal Academy in London. So that's 4 years of temporary low-paid work. It's still low paid but he gets to cycle into work and leave the non-existent stress of that work behind him when he gets home. Thats the choice he would prefer. That is the choice we have made - keeping an allotment, garden, walking to school (turns out not such a straightforward affair with 3 strong willed children one left with Short Bowel Syndrome and lower energetic reserves), fresh air, less stress, better wellbeing for less money, less of the 'creative culture' we were so dependent on pre-children, and certainly less consumerism. In terms of where we are at now has proven to be where the wealth lies in terms of what it is to live life in times of pandemics, such as this. I'm sure it will be one of many. We have had a potentially lucky head start to this realisation. We are so secure in some ways because we do not take any of this for granted. When we do begin to take things for granted, life has a way of ripping the ground from beneath your feet to remind you, that none of this is a given.

This has been my experience for a good 6 years now, we have been fully prepped for this. And in terms of gratitude for the things that can make a huge difference, I do not believe that it is helpful for anyone in a situation of struggle or grief for others to constantly demote gratitude as though it flies in the face of those who do not have, who are experiencing heart felt trauma. The gratitude for things, small moments, in a real experienced way, tends to come from exactly that - an awareness and embodiment of suffering. It seems to work on a scale. The deeper you have allowed for the suffering, the more aware of that potential for suffering, leading to a potential freedom of realisation that all this is transitory. I would just like to note that it is the acceptance and making space for the suffering that seems to be needed (rather than some sort of top trump "my suffering is worse than your suffering").

For more understanding on this perspective read 'The Sacrament of the Present Moment' by Jean-Pierre De Caussade and Buddhist literature.

Those moments of appreciation, of gratitude, of clarity are heightened in the movement through deep suffering. To alchemise that energy, turn the negative upside down. Environment and time is important for that to take place.

That is my attempt to try and explain something heavily nuanced and complicated with words which are incomplete.

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