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Raising a Special Needs Child in Kenya: Looking at My Daughter, I thought: This Isn’t the Motherhood Experience I had Expected

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In 2010, Susan Kuria gave birth to her first child –a beautiful baby girl who weighed 2.7kg. It had been a relatively smooth pregnancy and a delivery devoid of any significant challenges. Susan and her husband called their lovely daughter Princess Gathoni. The couple, just like any other, were ecstatic about the additional member in the family and felt very blessed. However, this joy would not last long.

Today, I bring you Susan’s story. Susan will be a regular contributor on Mummy Tales, where she will be sharing her experiences raising her special needs daughter. Her experiences, I believe, will help inform us on some of the issues that parents of special needs children face. They will also help other parents know that they are not alone in their parenting journey. I welcome you to read Susan’s pieces and share the information with parents or friends who you believe would benefit from the same. 

Susan with her husband Patrick.
Susan with her husband Patrick.

“Just three days after Princess Gathoni’s birth, something about her behaviour threw us into panic. She was lethargic, wasn’t breastfeeding or crying. We rushed her to the hospital where she was admitted with a diagnosis of severe jaundice. This wasn’t the best news for us.

Basic procedures including tests, phototherapy and blood transfusion exchange were done on Princess. It was such a stressful moment for me –I was just a first-time mom and this wasn’t the motherhood experience I had anticipated. I was yet to understand what was happening, and why our innocent baby had to go through all that pain. Princess stayed in hospital for two weeks. We thanked God for her healing and looked forward to a bright future.

At six weeks, Princess was booked in for an auditory test as we had been advised. Again, the results were not good. She was diagnosed with bilateral profound hearing loss. Well, I figured it couldn’t be so bad since I had seen some of my friends who were hearing-challenged doing well with sign language and were successful in life. I was ready to face that challenge.

Princess Gathoni at a much younger age.
Princess Gathoni at a much younger age.

Princess continued to grow into a beautiful baby, but with time I noticed she appeared weak or was under-performing in her milestones. At four months she didn’t have a head control and this alarmed us. We decided to see a Neurologist.

What the Neurologist said: “your child has cerebral palsy” is still fresh in my mind, seven years later. I didn’t understand what that was, all I remember was getting an overwhelming feeling of being scared.

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Maryanne W. Waweru is a Kenyan mum raising her two sons in Nairobi. A journalist, Maryanne is passionate about telling stories and hopes that through her writing, her readers learn something new, feel encouraged, inspired, and appreciative of what they have in their lives. Maryanne's writing focuses on motherhood, women and lifestyle. "Telling stories is the only thing I know how to do," she says.

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