by Sally Hyder
‘Melissa is at the other end of the scale from your other two,’ she told me. ‘It’s nothing to worry about.’ Then turning to Melissa, she said: ‘Isn’t it a shame? Mummy’s got two very bright children and she just wants you to be the same.’
I was appalled. As a health professional, my code of practice has always been to give open and straightforward advice but to listen, too. If you don’t pay attention to people’s concerns, you will miss the bigger picture. While it’s often easier said than done, I can’t emphasise enough how isolated this wall of smiles made me feel: it was no good being met with talk of the need for a balanced view. It was – and is – difficult to explain how empty Melissa was. She was completely silent and floppy. However, she seemed to love being sung to and I remember her reacting to a flute concerto playing on the stereo; her eyes sparkled and she waved her hands. Otherwise she just slept and ate what I fed her without demonstrating any physical or emotional change. There were no reactions, no milestones: it was utterly soul-destroying.
In defining abnormal behaviour, it is crucial to understand what’s meant by ‘normal’ behaviour, I already knew that. To me, Melissa’s obliviousness to the world around her, her inability to respond or connect, called for a proper assessment. I came away thinking, I’ve got to sort this out. I’d thought that because Melissa was prone to rashes perhaps she had allergies, like Peter, and so I asked my GP for an appointment with a consultant at the Royal Hospital for Sick Children, commonly known as Sick Kids. Eventually, this came through when Melissa was 10 months old. The consultant – a specialist in allergies – didn’t believe my story, though.
‘Look,’ I told him. ‘I could leave her on the floor, go out for lunch, come back and she’ll be in the same place.’
‘Don’t knock it,’ he said. ‘A quiet life must be good. Besides it’s quite normal,’ he added. ‘There’s a normal spectrum of behaviour. Development scale is variable.’
Undeterred, I requested a second opinion. This time I would take Andrew as back up. The morning of the second appointment arrived. At my insistence, the consultant agreed to refer Melissa to a physiotherapist. A letter from the consultant (which I was subsequently told about) asked the physiotherapist to please reassure this anxious mother and give her a few ideas and exercises to assist her. The appointment duly arrived and so off we went.
‘Look at this,’ I said to the physiotherapist, gesturing to Melissa, whose fists were clenched up around the sides of her head.
‘It’s all right,’ she told me. ‘I’ve seen …’
I put Melissa face down on the floor. There she would have remained until she suffocated, had I not picked her up. This was not the normal response of a one-year-old. The physiotherapist immediately referred us to a neurologist, which was when they started to believe us. And so began twice-weekly physiotherapy sessions, followed by years of weekly home visits as Melissa learned to sit and unclench her fists. At the age of one, she had the gross motor skills of a three-month-old baby. As the initial diagnosis of Global Neurodevelopmental Delay (she was in fact developmentally delayed and they didn’t have a name for it) was made, it dawned on me just how far we – and above all, Melissa – had to go.
Chapter 7
Black Days
‘They’re better off without me.’
Through the window I could see the seagulls circling the tops of trees. The counselling room of the Post Natal Depression Project was on the fourth floor of a Victorian redbrick in the centre of Edinburgh. Every week, I’d force myself back into that wicker chair by the window, the one with the pretty cushions. I’d look out at the garden, away from my hands twisting the same soggy bit of tissue. If I wanted to scream, I would gain control by looking at the sky; when it got too painful, I could soar into the clouds.
I was desperate: desperate for sleep, desperate for help, desperate for respite from the day-to-day struggle of looking after three small children. Caring for Melissa, supporting her needs, had brought me to my knees; I felt drained. Every day was a battle to find the will to go on. I just wanted to understand what was going on inside Melissa’s head – and mine. Sylvia Plath’s image of being stuck under a bell jar is right: I couldn’t find a way out. Salvador Dalí has a painting of a woman’s splintered head (the missing bits are balls circling her head) so apt it took my breath away when I first saw it.
While pregnant with Melissa, I’d voiced my worst fears to my GP and my health visitor. I admitted that I was terrified of developing post-natal depression.
‘We’ll keep an eye on you,’ they insisted.
In one of the antenatal classes for groups of mums with kids that I attended, where you talk about past experiences and fears, one woman mentioned her experience of post-natal depression and the amazing support offered by the Post Natal Depression Project. I’d also touched on my brief experience of depression. After the class, the other mum gave me their number.
One warm afternoon when I was pregnant with Melissa and feeling very down, I called the number. I chatted briefly to a woman who offered to arrange for me to come and see them.
But I never went, and then I had Melissa. Looking back, I realise that I must have been depressed immediately after her birth: I felt overwhelmed by life and by my MS. I remember my Aunty Pat and Uncle Andy visiting me and taking Melissa out so that I could rest but instead I paced the floor, scarcely able to breathe: I was desperately anxious to have her back yet I also wanted someone to take her away, to give me a break. Strange. Only when I look back do I see my anxiety was muddled with certainty there was something wrong with Melissa.
In January 2000 my world collapsed. Six months after Melissa was born, I’d gone back to work as a nurse for the Huntington’s Disease Society. Huntington’s Disease is a progressive neurodegenerative disorder that leads to dementia and is far more common than widely perceived. Many families hide the truth of their loved ones’ suffering, which means deaths from the disease go incorrectly recorded. My job was to provide those families with support, advice and practical help; I was there for anyone affected by the disease.
However, at work I felt very unsupported. What’s more, it seemed to me that I wasn’t juggling home and work commitments at all well. Then I got a bad chest infection and so I was off sick. Around this time, Melissa had another of her strange illnesses (an unexplained rash and fever), which meant she had to go into hospital. Frantic with worry, I called work to let them know that I wouldn’t be able to come in and my team leader was so rude that I put the phone down and rang my GP instead.
‘I can’t cope,’ I told her. ‘I can’t do this anymore!’
‘Come and see me,’ she said gently.
I refused anti-depressants but she gave me time off work.
‘I can’t face going back to work,’ I told Andrew.
My husband had recently completed an MBA and knowing me so well, said he would fund me for a year to set up my own business and so I started up an au pair agency. Now you have to remember that before most of Eastern Europe was invited to join the EU, there were slim-pickings when it came to finding au pairs in Edinburgh. You were offered girls from Italy, Spain and France but most of them wanted to stay in London to go nightclubbing and shopping on Oxford Street. Bouncing Melissa with one hand, stirring bolognaise with the other, I was on the phone all day talking to prospective au pairs and clients. In a frenzy of activity, I set up the computer in the kitchen (I didn’t even know how to switch it on at first) and had to learn how to download files, create documents and send emails. Rather than ignore the phone, I took every call too.
‘Bonjour.’
‘Buenos dias.’
‘Buongiorno.’
In between answering the telephone, interviewing French, Spanish and Italian girls using my basic language skills – not to mention all the Eastern bloc girls who were desperate to get UK visas – I was struggling with my MS symptoms of wobbly legs plus a dodgy arm and eye. In retrospect, it’s easy to say I took on too much but I’ve never
been the type to turn down an opportunity and at the time it seemed like a good opportunity. In keeping busy, I hoped the sense of emptiness, the loneliness, would just go away.
But I couldn’t relax into being a mum: I felt guilty about all the things I couldn’t do, and wasn’t doing. Always, I felt as if I should be doing more. I wasn’t sure what exactly that might be, but I learned to live with two heads: the anxious, terrified one and the ‘we’re managing well’ one. It was as if I was running through a dark forest, then stumbled and was about to trip, the branches tearing at my hair. I had to keep moving, I had to protect the children – I couldn’t see any light or patches of grass. Andrew, meanwhile, was totally supportive but didn’t really see how busy I was, as it all happened when he was at work.
Later on, I admitted that the smarter, more together I looked, the worse I actually felt. I’d put on my make-up and best clothes and go off to appointments, struggling in a pit of despair. The only exception to the rule was counselling, which I often attended in a baggy tracksuit with unkempt hair. Andrew, meanwhile, was working hard and I didn’t want to burden him with it. Of course in the end he noticed my moods but there was nothing much he could do.
To outward appearances, I was a fully functioning wife and mother as well as a businesswoman. I never missed a parents’ meeting or a musical performance and I always told the children how much I loved them. We baked, we read stories: in fact, I used to make up stories. Peter’s were about dinosaurs in a magical world where good little boys slid down dinosaur tails into a moat of jelly and ice cream, with balloons flying overhead. Clara’s were filled with longhaired mermaids swimming through underwater caves alongside princesses wearing beautiful jewels.
I hid my darkness. On bad days, I’d wake up and think, OK, I’ve got 12 hours until I can get back into bed. Andrew was hugely patient with me but he was also working long hours and depression, by its very nature, is introspective: it draws you in until you’ve lost sight of the outside world.
After the birth of Clara, the GP in Beckenham had offered anti-depressants but I refused them and over time, my OCD faded. This time it was worse for everything was intensified: we would get out of the car, start walking up the road to school and I’d ask the kids to go back to check the handbrake was on and the doors were locked. I couldn’t leave the house without going back inside to make sure the oven and the light switches were turned off. I’d have to change Melissa’s outfit because of a mark on the front; then I’d change my shirt because I too had a mark on my front – by which time, I’d be in a panic about time. And then the phone would ring.
To this day, I can’t hear the sound of a phone ringing without experiencing a Pavlovian response. A bolt of fear rips through me: has one of the au pairs done something wrong? Will the host family sue me? Could I be sent to prison? Will the kids be taken from me? I paid huge amounts of liability insurance. In the end, after a very successful three years two things destroyed the business: my health deteriorated and the EU opened up. Today, the girls find their own jobs. Eventually, I said goodbye to the business and passed it on in 2007.
When I finally knocked on the door of the Post Natal Depression Project run by Crossreach Post Natal Depression Services in early 2000, I had reached the very bottom. I can’t say why I knocked on the door on that particular day but all I knew was if I didn’t get help – and soon – I’d be consumed by my fears. I didn’t want them to affect the children anymore than they already had.
The waiting room was full of comfy chairs and well-thumbed copies of Hello! and Good Housekeeping, with women trying not to look at each other. No one ever spoke – I guess we were all too wrapped up in our own pain, embarrassment and shame.
What had happened to make us feel as if we were unfit mothers?
I had my first meeting with an extremely experienced counsellor, a lovely woman with a gentle smile who always looked reassuringly poised and professional in coordinated outfits that complimented her reddish hair. At the initial consultation to see if the Project could help, I was exceedingly fortunate: I was offered assistance the moment I asked. Today there is a long waiting list for the service. We chatted about my family, where the kids went to school, my life and daily routine. At this stage, I was feeling far too overwhelmed to talk about my MS but it wasn’t long before my counsellor worked it into our sessions.
My counsellor had a great sense of humour. It was useful for me to have someone who had a Christian faith although there wasn’t an overtly religious message behind her counselling. Immediately, I warmed to her: she didn’t have the stereotypical breathy, soft voice I’d imagined a counsellor might have. Strong and tough, she was prepared for a challenge and there was nothing wishywashy about her. And she wouldn’t take no for an answer: she couldn’t be manipulated into believing all was well when it obviously wasn’t – she was only interested in the truth.
At the same time, I felt that I could really open up and talk to her about everything. I told her about my MS and how I overcompensated for my illness by trying to make everything perfect. I’d wake to find the kitchen was a tip and the living room a nightmare but the whole place would be cleaned perfectly by the time the kids went to school. I told her about the trap door in my head that I had to keep shut to keep the pain away. The trouble was, it kept springing open because the space above was too full. Throughout my sessions, Andrew was supportive in the background but as an extremely private person, he felt uncomfortable with the process.
My OCD was spiralling: by then I had no patience and I’d lost all sense for perspective. When one of Peter’s primary school teachers said he was lazy (he was just seven years old), I accepted this without argument. At the parents’ night, we were virtually dismissed without anything said. His teacher listed all the negatives and then bid us goodbye before we could answer back. In any case, both Andrew and I were far too shell-shocked and exhausted by this point to say anything. That night, I cried buckets. Was it true? If so, it must be my fault – I had too much going on at home. Indeed, life was spent juggling the business, helping Melissa, getting homework done with the two older kids, hiding my fears about the MS and trying not to overreact to daily situations that would frequently send me into a panic.
I was suffering such emotional pain and I felt that I wasn’t spending enough time with Peter. Meanwhile, he was being bullied. Within a week of him starting at senior school it was dealt with and never recurred, but during his junior-school years he suffered. You can never repair that damage: the failure to intervene and stick up for your child.
Recently, I tried to talk to Peter about it.
‘Oh Mum, move on! That was years ago. I’m fine,’ he insisted. ‘It’s not a problem.’
He is still my little soldier. Our children have since grown up and moved on: every day they amaze me with their achievements and lust for life.
Clara’s Primary 1 teacher was a woman called Ali, who has since become a close friend and a great support. One day, Clara and I were walking across the playground when she went full tilt across the asphalt. There I was with my gammy leg, baby Melissa and now Clara was bawling in pain with scraped knees and hands.
‘Stop crying,’ I said gently, trying to comfort her.
But I couldn’t pick her up – I didn’t have the physical strength. Instead I felt crushed and panicked by my uselessness. A kind mum took the baby. We walked into school and she handed Melissa over to Ali, who had rushed out to help. She took us to the medical room and left Clara and me alone. Finally, I was able to deal with my daughter’s cuts and grazes, to give her all the cuddles she needed while trying not to burst into tears myself. I felt such a failure and the memory of her fall, the thought of how I wanted to respond and couldn’t still haunts me; it’s a huge sadness.
In contrast, her memory of that moment is one of cuddles and Mummy making it all better. Once again, I am so proud of my kids.
The Project ensured the counselling was regular weekly sessions and they didn’t charge for their
services, they had a collection box instead. On days when I could barely climb out of bed, let alone get dressed and into town to discuss why I couldn’t leave my bed, they would send a taxi to the house. I’d arrive and one of the project leaders, would greet me at the door with a great big smile.
‘You look well today.’
It was a kind thing to say. Despite my tracksuit, plimsolls and unkempt hair, it made me feel better too. I’d hand over Melissa, who was taken to the crèche, and take a sweet mug of tea.
I didn’t let go of that mug; indeed, nothing in the world would have induced me to do so. Clutching it with both hands, I took it upstairs to the counselling room and only after I started to talk and the pain eased did I feel able to put the mug down. Ignoring the clock on the coffee table telling me that my time was running out, I’d take a tissue from the box of Kleenex For Men and blow my nose.
I was determined to get better, despite my misgivings. Andrew must have needed to draw on his reservoir of patience, though: I would tell him I’d been to counselling and sometimes what I had worked through. Typically, however, my conversations with the counsellor remained a confidential matter: I had to do the healing myself. Andrew was always there for me but he couldn’t fight my demons. I tried really hard to make sure things were organised and settled when he got home from work, that the kids were happy and we were playing. Life appeared under control.
But it took a long time to recover. Boy, was it painful! I hated exposing my thoughts yet I also relished the support of the counsellor. The Project had a crèche run by fantastic workers who cared for Melissa and could see her behaviour for themselves; they supported me while she was going through the tests and was ultimately diagnosed. Also, I knew that they believed my story and they listened to me, which was a huge help.
