What my daughter, with special needs, taught me about life and love.
When my daughter was 6 weeks old she was airlifted to a Newborn Intensive Care Unit to receive life-saving treatment. Over a three-week admission, I was told that my precious first-born baby was blind, developmentally delayed and reliant on medications to survive. My world became consumed by medical and therapeutic intervention and my role as Mama transitioned to carer, tube feeding specialist and ‘nappy-weigher’. Her dad battled with the devastating news that his baby girl was nothing like we’d imagined. Despite the hardships we faced through the first year of her life I was confident our relationship would withstand the turmoil.
But I was wrong.
The day before my daughter’s first birthday I became a single mum. I lay in bed with her on the morning of her first birthday, alone in the morning celebrations as I softly wished her a happy birthday. It felt more like a celebration of survival than joy. I peered into her sightless eyes and made a promise to support her in the best way I could. We celebrated her birthday without her daddy. I experienced moments of reflection and joy that were stripped away by feelings of overwhelming grief, disappointment, and fear. How the hell was I going to do this on my own? In the face of not knowing how I would cope with the demands of parenting, self-fulfillment, career progression and encouraging my daughter to thrive against her compromised development, I made it my mission to ensure she would not suffer any further because of my relationship status.
Being a mother can be exhausting, demanding, and emotionally depleting, kissed with unbridled joy, fulfillment, and love. As a single mother to a child with special needs, we are solely rewarded in an all-encompassing privilege to raise these complex, unique and divine little people. At times we are forced to experience unimaginable challenges and make decisions that impact on our own joy.
I felt like a failure when I moved back in with my parents and shared a room with my daughter for four years. I felt ashamed when I received the single parent pension because I was unable to work. I felt disappointed when I turned down job opportunities because no else knew how to manage my baby’s complex condition. I felt alone when I missed out on social engagements because she didn’t cope well in unfamiliar environments. My peace of mind was disrupted by the belief that my daughter dictated my life and I felt trapped by her needs. I began to feel resentful.
In helping her thrive, I lost my own sense of self. I burnt out in the pursuit of proving the doctors wrong and became bitterly angry towards her dad for leaving me to do it all on my own. I questioned my ability to make decisions and lost my confidence. I felt so isolated and was unsure how to rebuild myself to a place where I could be self-sufficient and financially free. I feared being rejected by those I loved and struggled to let others help me. I figured if I did it all myself, then no one else could let me down.
Through these experiences and emotions, I began to realise that my peace of mind was only disrupted by my own thoughts, expectations, and beliefs, and not by her needs. What if rather than restricting my growth, she was showing me a different way? What if through her darkness, she was shining a light on the path to least resistance? I started to choose acceptance, rather than resistance. I learned to become more present, more aware, and grateful for the challenges, rather than resentful of the hardships. I chose to let joy be my natural state, not conditioned by the actions of others. I released feelings that impacted on my peace of mind. Over time, I came to a place where I could forgive and loved my journey for what it is, although vastly different to what I imagined.
Solo special needs’ parenting is a dance between the insurmountable challenge and moments of pure bliss. In the thick of sleep deprivation, hospitalisations, and heartbreaking news, there is a smile on the face of a child that loves you without condition, with a will to live in the face of adversity. A child who shares unbridled joy without expectation and relishes in their magic without complaint. My daughter taught me to see in a way that I had never seen before. She taught me to accept everyone’s journeys, to love unconditionally, to seek support without guilt, and to embrace the wonder of magic by choosing to see the light in the dark.
Tanya Savva
Tanya is an author, wellness and life coach, and yoga teacher. She runs retreats and coaches mothers who have children with special needs to help them connect with the essence of their true Self. Find out more at www.tanyasavva.com.
Hear more about Tanya’s story on Episode 118 of the Single Mother Survival Guide podcast.
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