As a parent to a 9-year-old little boy with complex needs I’ve lost count of how many times I’ve heard the phrase ‘I don’t know how you do it.’
Growing up all I ever wanted was to be a mum. I wanted a welcoming house that my children could run around in and feel safe. I wanted to read bedtime stories and tuck them up at night. I wanted to plan adventures, go on holidays and make lots of memories. I wanted a happy family home.
In March 2012, those dreams started to become reality when Bobby came into the world, but within the first two years, the dreams I had for Bobby were replaced with fear for his future. Parenting doesn’t come with a book and being told your child is profoundly deaf, visually impaired, epileptic, autistic and has sensory processing disorder was a lot to deal with in such a short space of time.
"I don’t know how you do it" came at me from all angles. Professionals, family, strangers. I never quite understood it… Don’t know how I do what? Be a parent? Love my child?
Over the last nine years, I have reached some dark places mentally due to sleep deprivation and doubting my ability to parent during the most challenging times. Aggressive meltdowns, pregnancy loss, giving up my teaching career, the breakdown of my marriage, a global pandemic, all brought with it the phrase ‘I don’t know how you do it?’ What is the alternative of not doing it, giving up?
Before I became a parent carer, I was a mummy first, I held Bobby in my arms and promised him I would always be there for him, I had dreams and aspirations for him, adventures would unfold in my head as I watched him sleep. Little by little every year, the plans for his future changed. I no longer question what job he may have or if he will have a family of his own. Instead, I question how long I can care for him, if he is happy, how much he understands or what will happen to him when I am no longer here.
To the professionals, the strangers, the family members, the judgemental people who speak before they think, those who see Bobby as difficult, misunderstood and too challenging, he is still someone’s child. My child. Despite the aggressive meltdowns and the sleepless nights, I still see what all of you do not. I get so much joy from the moments that don’t matter to anyone else.
You don’t know how I do it… The answer is simple, I wasn’t given a choice, but neither was Bobby. Therefore, I do it for him, to ensure he has the happy family home I always dreamed of providing for him for as long as I possibly can. Because our future is leading us further into the unknown. Because I promised him, I would never give up.
Abby Lewis, Parent Carer from Marske.
