'Our first year with our brain damaged daughter has been one of small triumphs and huge fun'

When Stacie Lewis's daughter was born with brain damage, her hopes were shattered. But May's first year has been one of small triumphs – and huge fun
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Indy Lifestyle Online

I had an easy pregnancy. Normal scans, a healthy glow. Looking back, I can understand why I thought everything would go to plan. There is no history of health problems in my family, so it didn't once cross my mind that my child would be anything but normal.

My life now contrasts entirely with what I thought it would be after having a baby. I imagined struggling to settle her down to a routine, or waiting for my body to heal while heaving myself out of bed at 2am for a feed. I dreaded the normal things any new mother would: sleepless nights and her piercing cries. But, I also thought that I could deal with that for a year. What I really dreaded was the boredom. I thought maternity leave would lose its sparkle after a few months. Now, I feel ashamed that I ever felt that way. But, it is true; I thought it would be dull: months at home, surrounded by dirty nappies and annoying toys, with only a baby's cry to converse with.

After May's birth, these assumptions haunted me. She wouldn't eat. She suffered seizures. One week later, she was diagnosed with brain damage.

Our simple dreams for her – school, work, marriage – crashed against the severity of her injury. We feared to hope for anything more than the most basic of newborn reflexes: the ability to suck and swallow. For us, everything else – to sit unsupported, to speak our names – became pipe dreams overnight.

It was as though I had cursed myself with that famous phrase, "May you live in interesting times." What I had imagined I would dread about my first year with my daughter became the only thing I desired. Oh, for several months of the dullest days of my life spent knee-high in dirty nappies accompanied by screams and squeals! That would have been an absolute joy.

I'm not a neurologist. I'm not even a nurse. I struggled to understand the magnitude of my daughter's injury and how I was meant to help her. It is a terrible thing to live under the pressure of a diagnosis with no cure or cause; worse when a parent is told their child may not achieve independence in any way, not even to lift her own head or swallow food, but that if she does, it will be down to parental involvement.

Before May was born, I anticipated rolling along through the days, making mistakes and learning from her. A first baby gives birth to a mother as well as a daughter. May had no idea of the terrain ahead. Neither did I.

Unlike other new mothers and babies, May and I were almost never on our own. There was always a professional looking over my shoulder. Sometimes the advice was helpful, but other times, especially in hospital, working with a new nurse every two days, it was contradictory. One would say, "Don't pat her, it will over-stimulate her." A shift change later, and a nurse would whip May out of my arms to demonstrate how to pat her to help her digestion.

The first weeks of May's life, our time to forge an everlasting bond, when I was to learn the landscape of her body and soul, we became acquainted under the gaze of hundreds of strangers in hospital. I yearned to go home to start our life together. And I was terrified, for exactly the same reason.

In the hospital, when I would ask questions about what would happen when May came home, the staff would try to reassure me. "Don't worry," a nurse would say, "there will be a whole team of people working with May when she gets home." I was desperate for someone to say we would be fine on our own. I can understand now why a parent would turn down support for their child. Every professional you welcome into your home, or make an appointment to visit, is further confirmation that your child is needy.

At home, it felt like we'd been invaded. May has a physio, speech and language, visual and occupational therapist. She has outreach workers and key workers. Not to mention six doctors investigating various aspects of her brain injury, from her seizures to her visual impairment. Despite the wonderful support that May's team gave her, sometimes it felt like I was being assaulted with information. At other times, it felt like no one could answer my questions.

At home, in between appointments, we cuddled on the sofa and I sang sweet lullabies to her. Even with her problems, she thrilled me with her accomplishments. I have about 20 videos of her on her play mat, all from one afternoon when, for the first time, I saw her reach a shaky arm up and it tapped against her toy monkey. For me, this was the equivalent of her winning a marathon. And the more I witnessed May attempting new skills, the more desperately I wanted to help her achieve them. There are no books written about how to assist in the cognitive development of a brain-damaged baby, and yet I was constantly told that the first year of her life was vital to her development. How is a parent meant to exercise a baby's brain? Rather than my maternity leave dripping by at an interminable rate, I spent 12 months chasing time. Every day was a day lost in the battle to progress May's development. Where to begin? What would help her more? Sensory stimulation? Physical movement? Classical music? A diet of brain food? With no medical knowledge whatsoever, I felt that May's future was dependent on a total novice: me. I also felt my inexperience strongly when negotiating the endless bureaucracy involved with May's care. Every piece of equipment she needed, or financial assistance she was entitled to, was accompanied by forms, such as the 39-page Disability Living Allowance form.

I struggled to get May appointments with specialists. Sometimes my request for a referral was questioned, but more frequently it was the administrative side of things that let us down: referral forms lost, hospital appointments were never made. Every day, I spent hours chasing up appointments on the telephone. I still do.

May is a delightful baby. Aside from the emotional trauma we felt, or the tediousness of an endless string of medical appointments, she is an absolute pleasure. She remains unaware of the dire predictions for her future. Rather than lie in her cot, totally unresponsive, she took up Olympic-level bouncing and gorgeous squeals of pleasure at the sound of bird song or the touch of her father's tickles. She learned to recognise the sounds she loved, her door creaking open in the morning, the bath running or the swish of milk in her bottle.

A week ago, May turned one year old. In her honour, a banquet was laid on and champagne popped. We stuffed over 20 friends and family into our tiny flat and all cheered for May, while she soaked up the attention.

Poor May had woken up, bleary-eyed and drippy, with a cold. A year ago, I couldn't have imagined that the worst physical ailment she would have on her birthday would be the sniffles. All those months ago – when I thought May and I would be forever trapped in her injuries – a celebration like this never crossed my mind. I felt an amazing mixture of triumph and love as my husband and I wrapped our arms around our daughter in front of everyone. Together, we blew out the candles that topped a homemade cake, adorned with a wonky, frosted monkey. And we made a wish for May.

My aspirations for May have changed. Maybe ridiculously, I still hope she will achieve some of the things I imagined for her a year ago. I'd love her to go to school, have a job, get married. I suppose the big change is that I don't expect her to do anything any more; I hope she does. And, I treasure each new accomplishment of hers. However small, for us they are stupendous.

I don't know what the future holds for her. The baby of my imagination, along with the life I had envisioned, disappeared a year ago. In its place I have something completely different and which I adore. A challenge, yes. A misery, no. Dull? Never.

Stacie Lewis's blog is at mamalewis.wordpress.com. She is the author of the autobiographical novel 'Taking the Plunge' (Snowbooks).

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