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.