Community//

WHY BEING A MUM TO A DISABLED CHILD DOESN’T MEAN LOSING YOUR IDENTITY

The reality as a first-time mum coupled with a diagnosis of your new-born having a disability can feel like a rug pulled from underneath you, ending everything you knew to be true.

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As any mother will tell you, especially a first-time mum, the amount of information on every aspect of parenting is overwhelming. I remember during my first pregnancy, I had books on more or less every area, from what to expect as a first-time mum to sleep, potty training, weaning, and everything else in between. There was one book in particular I was glued to, which provided information on tracking how my baby grew at every stage. Above this, the weekly antenatal classes only add to the reality, and they together set up an image and expectation of life with your newborn.

Yet, the reality as a first-time mum coupled with a diagnosis of your new-born having a disability can feel like a rug pulled from underneath you, ending everything you knew to be true. The expectation set in preparation of life as a new family suddenly crushed. The books didn’t seem relevant to someone like me, whose  first child was diagnosed with Cerebral Palsy. I was looking for hope, reassurance, and a sense of meaning. What I found was negativity, loneliness, and the reality of living in two worlds; – one disabled, one non-disabled and somehow I had to merge the two.

Whether a working parent or stay-at-home parent, a persona is created that gives others a different impression to what we are actually feeling. Hiding behind labels and even hiding behind our own child’s disability masks our true self. Those years of raising a child with disabilities plunge us into a world that feels completely alien. It’s common to feel:

  • Alone and isolated
  • Angry, often wondering “why us/me”
  • Stuck and trapped, overwhelmed and exhausted by daily responsibilities
  • Guilty
  • Not good enough
  • Anxious and afraid of what the future holds for you and your child
  • Tired, unhappy, and often unwell, while turning to food for comfort
  • Incapacity to see beyond your child’s disability
  • Abandoned and undervalued by society

As I was a working parent, living in two worlds became my norm. According to The Papworth Trust, 84% of mothers of disabled children do not work, compared with 39% of mothers of non-disabled children. Only 3% of mothers of disabled children work full-time. So, it’s unsurprising that a loss of identity is common.

The Turning Point

One morning, I was looking in the mirror and did not recognize the person staring back at me. At that moment, I realized that enough was enough.  I had been ignoring my own health and mental well-being, and in that moment, my mindset shifted from victim to empowerment. I had placed my own needs as unimportant and had disconnected my mind and body – a common trait with many mothers. I had been hiding behind labels – professional, carer, mother, wife. It was time to let go of guilt, judgement, self-sabotage, and negative self-talk.  It was time to take back my personal power and rediscover who I was as me.

If anything I have written has resonated, then I invite you to consider the strategies that helped me take charge of my health and mental well-being.

  • Exercise:  This was always a big part of my life; it was the beginning of putting my needs first. Even wearing my gym wear changed the way I felt and reminded me how empowered this made me feel. Although it had been a while since I exercised, the important thing was setting the intention. Once I set the intention, it became a reality.
  • Meditation: Introduce 20 minutes of meditation every morning. This is part of my daily ritual and sets me up for the day. It clears my mind of any chatter and connects the mind and body.
  • Journaling: The other part of my daily ritual is focusing on gratitude, where I write five things I am grateful for each morning in a journal. Writing  sentences and reading them aloud, and taking the time to notice and reflect increases  positive emotions well-being.
  • Mindset: The story I was telling myself had a huge impact on my thoughts, and it was disempowering. Changing the story and letting go of what I’m unable to change focused my mindset in a more positively empowering way. Focusing on what I wanted as opposed to what I didn’t want made a huge difference.
  • Connecting with my inner self: I started rediscovering things I enjoyed. I was mindful of negativity either from people or events. I took time to notice the people I spent most time with and how they made me feel. Began to love myself from the inside and appreciated what the disability gave as opposed to what it took away.
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