Trisomy Blog Part 3 Living with Cali



Part 3 – The second year and beyond

During Cali's second year I stopped thinking about her death all the time and started to try and come to terms with her life. Silly as it sounds I only now started really understanding that I had a daughter with profound disabilities and that they would affect her and us in all kinds of ways. All Cali’s peers were of course now doing wonderful things; walking, talking, dancing whilst Cali was barely beyond a newborn in her abilities; she had learnt to roll onto her side, and enjoyed jangling and batting toys, but that was about it. She was affectionate, humorous and loved eye contact but she also seemed to inhabit her own very different world. It was a world where lights, bells, mirrors and sensation were fascinating. I wanted to know what it felt like to be in Cali's body but I had very little idea. 

In the second year I started attending groups for children with disabilities, and towards the end of the year Cali started going to a childminder twice a week, which was a lot easier than I’d imagined. I also acquired my first local friend who had a child with a disability and we enjoyed letting off steam by making silly comments in the groups we went to. Silliness has always been one of my ways to bring myself back up and I often find myself using it to try and get professionals to see me as a person rather than just being a generic “mum”. One of the things I have struggled with since Cali was born is a sense that my personality and independence has been eroded by tiredness, grief and always feeling like the one being helped; a feeling which prior to Cali I would have done a lot to avoid. My attempts at connection via humour often fall flat unfortunately, a recent joke I made about the little vest that clips onto Cali's supportive seating being “bullet proof” was met flatly with, “it's not bullet proof, it's neoprene.” 

I had begun to swim more confidently in the world of disability but still struggled with a dreadful vulnerability, and yes, shame about Cali whenever I was in public. I would take her to the park occasionally and push her floppy body in a baby swing, but I felt so fragile and self-conscious. I felt like the other mums were staring at me, an abomination with my “abnormal” child. I felt unwelcome. But when people tried to make me feel welcome I would then feel misunderstood and angry at their attempts at sympathy and inclusion. I do have a number of friends who I didn’t feel any of these feelings around, but in general I projected my own harsh feelings about disability onto the world. I felt, and can still feel, that both Cali and I would be judged and found unlovable because of Cali’s disabilities. Despite loving her so much myself, I wasn't able to believe that other people would too.

So it was a mixed year, full of tiny steps forward as I gradually felt more used to my new life and how to look after Cali, as well as many knock backs when Cali would develop a new difficult issue, or I would brave a social event with her and then suffer for it afterwards. By now we were also faced with two chronic problems, Cali’s many unexplained daily vomits and her inability to sleep, and my mind was consumed with trying, in vain, to find solutions to them both. At night I would often feel waves of panic as I looked to a future that couldn’t possibly have a happy ending, but by day I would find my optimism had returned and I was able to find joy in amongst the difficulties. And then, after two miscarriages, I became pregnant again. For months I felt I could barely acknowledge the pregnancy for fear that something would go wrong, but I was given wonderful pre-natal care and reassured over and over that this time I would give birth to a healthy baby. 

My second daughter was born 12 days after Cali's 2nd birthday and from the off they couldn't have been more opposite. A is a big, robust, little whirlwind with an insatiable appetite and little patience for anything that requires diligence. She's also very vocal about her needs. Cali is tiny, fragile, thoughtful and mindful in everything she does, and until recently she has never been able to vocalise her needs. Having yin and yang to mother at its best brings harmony and a sense of having everything, and at its worse has me, especially in the early days, in paroxysms of fury and frustration at my inability to look after their respective needs at once.

This part of my journey has been the part I kept putting off writing, and I think its because of the guilt I feel about how my ability to care for Cali changed so much once I had another child. Far from it being A that missed out, as I had predicted, actually A's will to live and determination to get what she wanted far outstripped Cali's ability to compete for her needs. A insisted on being held for the entirety of her first three months, and until well over a year would wake as soon as I crept out of bed to help C with whatever crisis was going on in Cali's room during the night. She would mostly only calm for me and would only be put to bed by me, so Cali suddenly had to get used to Daddy doing everything from 7pm-7am when, on workdays, I would resume responsibility and muddle my way through the day, squeezing blended food into Cali's gastrostomy with one hand whilst A tenaciously fed from me. I'd spend hours pushing A through the streets to get her to sleep whilst Cali had to cope with the nausea this made her feel and the brightness of an endless summer which hurt her eyes. Sometimes the only interaction I could manage with Cali in those early days was to sit and stroke her feet. 

Cali's third year feels like a year I bodged, giving all I had but it never feeling like it was enough. And if I am honest, part of me, treacherously wallowing in the opportunity to step away from the heartbreaking, frustrating puzzle that was caring for Cali in order to bury myself in the delight of my wonderful other child who was giving me the longed for experience of being a mum like any other. Having another child was so healing, whilst not actually making anything better. 

Cali survived that year, got bigger, stronger, more vocal and more able to control her body. She started learning how to use a switch to turn on something and to swipe at an ipad to provoke a response. She continued to need hospitalisation for colds and C would courageously spend the nights with her and I the days. I would always manage to see to her physical needs but felt woefully inadequate at being able to hold her and connect with her in the way I did so much during her first two years. It was the right decision for our family to have another child but it was not an easy one for Cali to have to endure and I am grateful that she didn't leave us that year and will now hopefully start to reap the benefits of having a sister and a happier family.  

So Cali's third birthday sailed past with a trip to the zoo and we enter her fourth year. Things are becoming somewhat easier looking after the two of them, though Cali's frequent illnesses often still bring us to our knees and require a family member being bought in to help us cope. And the challenges are constantly changing. Now A is mobile I'm often faced with the dilemma of following her to keep her safe but abandoning Cali who is often sick and looks so vulnerable alone in her chair at the other side of the park. 

I came to a place where I realised that I needed to reconnect to Cali, as during A's difficult first year I had allowed my heart to close somewhat. There had been little time to just be Cali's mum and spend time with her, and I think I hadn't really been able to cope with the strain of looking after the two of them whilst staying emotionally open to the knife edge of her fragility. I noticed that there was a part of me that didn't want to tune into Cali because it was painful; easier to hide in the never ending lists of things that needed doing to keep her and the family afloat, rather than put it all aside and do the really worthwhile thing of lying next to her, locking eyes and allowing myself to get drawn into her world. Cali has a meditative, here and now quality about her and if you spend time with her she can lead you into a space where you float in the present moment with her. It's blissful but also painful because these are the moments when I love her the most and am most in contact with my fear of losing her. 

I now feel like I am beginning to slowly knit together the disparate pieces of myself into something that looks like a half decent blanket, albeit with lots of dropped stitches, raggedy edges and intense bunched up bits which represent sudden illnesses where everything is dropped to look after Cali. This blanket, with my different selves knitted into it, has recently had some new lines appear; ones that show me starting some voluntary work later on this year, of me being able to write this piece, and of me looking forward to Cali starting nursery soon. I feel like I am preparing to re enter the world that I stopped occupying when I went onto maternity leave nearly four years ago, and that I want to re enter it as me and not as Cali's mum. Life is still very difficult, even when things are good there's rarely more than a few minutes in the day when we can turn off from Cali's needs. My journey is not a tale of somebody who has gone from adversity to being healed, but rather a tale of somebody who is feeling better than she was. In the time it's taken me to write this (about 10 days) I've had a dozen highs and lows with Cali and I’m sure life is going to continue to be bumpy. But as long as I remain determined to improve the things I can, and I keep trying to master the dreadfully difficult lesson of accepting what can't be changed, then I think that I'm heading in the right direction.

Jay

x

Back to News



Date Added

18/06/2018



Other Articles

Registered Charity: 1002918 (England and Wales) SC043341 (Scotland). Copyright © 2005 – 2017 SOFT UK. All rights reserved.