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Down I fell......

.....The Mental Health Impact of a child with Edward's Syndrome

This extract from the Cat in the Hat, a children’s story about a cat bringing mayhem to the house of two children home alone on a rainy day, feels like an apt description of what happened to me last October. One minute I was confidently juggling an impressive array of things whilst bouncing on a metaphorical ball, the next I’d fallen on the floor and brought down the whole lot with me…

Parenting a child with complex medical needs and profound learning disabilities is busy and demanding. And then there’s the rest: the shopping, the cleaning, the cooking, the life admin… then add in another young child and trying to manage two sets of, often polar opposite, needs. Then add a part time job. Still managing? Good. OK, add a weekly evening of meditation, no matter that you sleep through the whole thing and come away less mindful than before. Add guilt that you are not a good enough mum/partner/friend/human being. Room for more? Add gnawing anxiety about the climate. Add the discovery that the gnawing anxiety is only held at bay by becoming a low level climate activist. It’s tiring but we need to act now, right? Better start a Green Team at work. Better look into cloth nappies. Still managing? Good, because Christmas isn’t far away and presents need to be bought. Low carbon, second hand, handmade, affordable presents. Got any time left after that? Because I’ve still got some ideas about what you should be doing…

Just like the Cat in the Hat juggling an ever-increasing array of objects whilst bouncing on a ball, I had been adding more and more challenges to my life since Cali was born. I wanted to believe that I could have a “normal” life, that I could manage all those many, many demands that Cali’s care put upon us, and still carve out an existence where I helped other people, nurtured myself, socialised, had an ordered house and plenty of energy for both children. I wanted to be like other mums, like other people. When I was able to have a life that felt productive and varied, I felt more in control.

I think lots of people feel like me, that we are safer if we have control over our lives. Perhaps it stops the bad things from happening, (or if they do happen at least we face them with well organised kitchen drawers). Cali’s condition makes me feel powerless which ramps up my need for control. Having a child whose life span is likely to be limited forces me to live with what many of us try not to think about, death and the scary process of dying. And having a child that is very complex and who can’t tell me what the problem is can also bring on feelings of impotence. And then there’s being forced to live a life that limits my freedom, this too is very frustrating at times. So my response has been a great need to try and control what I can. The extreme stress of it all also makes being busy preferable to relaxing.

All this multitasking and achieving also had the convenient side effect of keeping my mind busy and exhausting me so much that I would fall into bed at night already half asleep and return easily to slumber despite multiple get ups in the night. This reduced the possibility that the night time thought terrors would catch up with me.

So that was me, bouncing up and down on my ball, juggling like crazy. But, over the last year, like a sinking ship I’ve found myself slowly sliding into blackness. The last summer holidays exhausted me, I lost my sense of humour, became constantly cross and felt overwhelmed by the thought of taking on anything new. Although changes in Cali’s care have always felt destabilising, now I found the latest changes, a hearing aid and a back brace, created a wave of helplessness that would wash over me whenever it was time to put them on. I found myself putting the brakes on all changes that might be coming up in Cali’s life as I felt in my gut I couldn’t manage any more.

Then the charity I work for did a restructure. I suddenly had new responsibilities and a lot more people on my caseload and that, without a doubt, was the final straw. My work life now reflected my home life; unmanageable, full of change and needing great energy to maintain. It was no longer a place to escape to but a place I needed to escape from.

I finally fell off my ball in October. It started with a bout of insomnia. For four nights I barely slept, I just lay in bed with anxiety like a weighted blanket pressing down on my chest. On the fifth day I took my thundering heart to see a doctor, to get signed off from work for a couple of weeks and to beg for something that would make me sleep. All my convictions that I needed to carry on and get things done fell to the floor like confetti and I swallowed the tablets and went to bed. That night I slept 11 hours and I woke up knowing that something had broken inside me and I would have to find a way to mend it.

I no longer wanted to be depicted as managing, I needed every bit of help I could get to look after myself and make sure my family was OK. C was amazing and for the next two months did most of the night care with Cali. He took on extra tasks, cooking much more as I was often too nauseated to be near food. I hooked in every support I could – cashing in on saved Direct Payment hours, extra transport for Cali to school, extra hours for A with her childminder. Luckily C’s mum was due a visit and she helped with the nights, cooked, cleaned and was jolly with A when I was unable to raise a smile. Despite my prior conviction that I was the lynchpin that kept all the wheels of our lives turning, I suddenly saw that we could manage, for the moment, with me running at quarter capacity and other people helping out.

Picking myself up after that fall is still very much in progress. For some months I needed an insatiable amount of sleep, and I would regularly have to medicate myself when the anxiety resurged in my body. Slowly I have begun to go longer periods of feeling more well, but it takes very little to send me slipping back into anxiety and depression. It’s normally when I get sucked back into doing too much.

I’ve realised that I’ve developed something approaching an addiction with getting things done. Whenever something gets crossed off my list I feel a fleeting feeling of power and satisfaction but the satisfaction is quickly lost and I wonder what else I can fit into the day. I’ve noticed how stopping and playing with my children often brings a feeling of restlessness and sadness. Doing things, whether it’s hanging the washing out or charging through emails feels safe, playing with my children, which actually brings me joy when I am able to let go, also brings a feeling of danger. “Don’t relax, there will be too much to do later, don’t let go and be silly, it’s all going to fall apart if you don’t get on with things…” so goes the a voice in my head. It’s trying to protect me, but it’s also sucking the joy out of life.

To get better I have had to make some changes. I found a counsellor. I cut out caffeine and alcohol. I started walking to work, which ticks a host of boxes: exercise, morning sunlight, time alone but also time to catch up with friends and family on the phone. I started taking vitamins, iron and extra magnesium. I meditate when I can manage it. And I try to notice when my body and mind is yelling at me to rest.

Most importantly perhaps, I’ve updated my belief system - I no longer believe I can have the same life as my friends who have less on their plate.  Because let’s face it, for parents like us, the amount what we need to do to meet our child’s needs can feel insane at times. Part of the reason I got away with such an unhealthy way of functioning for so long is because of the sheer amount required of us as a family.

For example: It takes C and myself around an hour to get Cali up and ready in the morning, and the same again in the evening. On the days I take Cali to school I will be driving for at least two hours. Cali is on a blended diet which means I spend hours each month creating food, blending food and decanting food into breastmilk bags.

Today is my childfree day and I will be spending two of my precious hours on an appointment with the incontinence nurse. There’s always emails to answer, appointments to attend, equipment to source, orders to make, opinions to seek, invoices to pay. No wonder I have to multitask. No wonder my head is spinning as I try and make dinner, talk on the phone, feed Cali and tend to A’s needs all at once. No wonder there is only about 45 minutes in the evening to relax if we want to get to bed on time.

And often the things we have to do for Cali can’t be done by anybody else and can’t be fudged quickly. Whilst A’s dinner can be assembled in minutes, blending food takes time and expertise. Very few people can look after Cali apart from C and myself, whereas A can be cared for by anyone reliable.

I have read that having a child with Edwards Syndrome is like perpetually being in the baby stage. That’s not entirely true, but it’s not entirely untrue either. Our nights are broken, our nearly six year old child has to be carried everywhere, cannot feed herself, wears nappies and cannot talk.

I see it as positive that I’ve had this mini breakdown, it needed to happen and since it happened I often feel softer, more humble and (I like to think!) easier to get on with. Part of my previous insistence on self-sufficiency and managing was to show the world and myself that I wasn’t vulnerable, when really I was, I am which created a closedness and a brittleness in me. And I’ve realised that people don’t necessarily warm to the person that seems to be managing everything very well thank you very much. Since October I’ve prioritised spending time with the friends I feel most comfortable with and have really tried to show a bit of my vulnerability, unsurprisingly this has led to stronger friendships.

Supporting each other is really what binds us humans together. Our survival has always depended on cooperation. And yet we currently have a society which prizes perfection and self-sufficiency. We see it in how people feel compelled to populate social media with their images of success –the wild night out, the incredible holiday, the meals cooked, the places visited, the impeccable home, the alluring selfie. We also see it in the way women are most often depicted on TV and in film – women who cheerfully manage high level careers, come home to beautiful children in beautiful houses to knock up meals effortlessly; always smiling always light-hearted. I wanted to be like these fantasy all-rounders, but I’ve changed my mind now, I’ve come to see that perfectionists like myself often have low self-esteem and feel out of control.

Cali has taught me that it is imperfection rather than perfection that inspires love. So much in Cali’s body is wonky and doesn’t work well. She will always be dependent on others for her needs. She will never do any of the things that most parents take for granted that their child will achieve. None of this affects my love for her, or if anything, it all conspires to make her all the more lovable. And, despite all her challenges, Cali radiates cheerfulness and affection.

Having Cali as a daughter gives me understanding of those beautiful words of Leonard Cohen:

“Ring the bells that still can ring
Forget your perfect offering
There is a crack in everything
That's how the light gets in.”

When Cali was diagnosed with Edwards Syndrome I had to forget my perfect offering as my baby was very far from “perfect”. Instead I got Cali; who is full of cracks and is full of light. She is not just a nappy to change, a drug that needs to be given, an appointment to attend, a food to blend, a brace to put on, a hearing aid to put in. When I write about Cali I always come back to the fact I am living with one of the most inspirational people I have ever met but that often I am too busy and anxious to even notice this. It’s easy for me to think of that extra chromosome as my bad luck, when really the glass is half full. How lucky am I to be living with somebody who inspires me so much?


And in the spirit of allowing the light to get in I am going to hand this blog over with less revisions than usual, imperfect and clunky, and hope that somebody will find something useful in it.

Sending love to all the parents of complex children out there. I know how hard and wonderful it is.

Jay x

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