Why there's much to be grateful for when you have a child with a rare disease

Why theres much to be grateful for when you have a child with a rare disease

As the UAE turns the spotlight on people of determination in the Year of Tolerance, Catherine Paul-Fijten tells WKND why mums like her see their children as blessings

Published: Thu 14 Mar 2019, 11:00 PM

Last updated: Fri 15 Mar 2019, 1:00 AM

Three years ago, I sat in the hospital holding my very sick newborn in my arms, and cried inconsolably. My daughter had a condition that I knew would change my life forever. Milou was born with an ultra-rare condition called ZC4H2 Deficiency. Patients with this condition have numerous disabilities and chronic health issues, including a variety of neuromuscular and neurological manifestations. In short, we would expect our daughter to grow up needing lifelong care.
You might say I was medically and intellectually prepared for having Milou. I was born in Colombia to a Colombian mother and a Dutch father, and grew up among people of determination, as my mother was the founder and lifelong director of one of the country's largest non-profit institutions for the rehabilitation of the determined. I studied biology at Leiden University and was awarded a double Masters of Science in both medical biology and science-based business. I started my career as a researcher at the Institute for Applied Sciences, the Netherlands and, subsequently, at the Laboratory for Molecular Genetics at the National University Hospital, Singapore. I have since worked in the medical sector in Asia and the Middle East.
I knew three years ago precisely what a child with a rare disease would need. I knew what I would do to care for her and how I would deliver the best quality of life for her. What I never expected was the amazing joy and hope she would bring into my life.
Many may be surprised to hear this. It would be fair to say that no mother would ever wish to have a child with a rare disease, but what I also know today is that none of us would wish a life without them.
Here is what I feel grateful for: learning to fully enjoy the small achievements day by day - a smile, a day without pain, the joy of communication and reciprocal interaction with your child; nothing is taken for granted. Small things that would otherwise be overlooked become occasions for intense happiness and hope. You learn to prioritise the important from the irrelevant. You let go of materialism and unnecessary stress, perhaps because you have no choice otherwise.
We expected our daughter could be non-verbal, so every new sound she produced became a celebration in our home. When she was 18 months old, on Mother's Day, she finally said her first word: "Mamma". There could not be a better present for a mother. On the day of our wedding anniversary, another amazing leap occurred. She surprised us by 'walking' in water during hydrotherapy, an incredibly significant step because it meant she could move in a walking pattern.
Having a child with special and medical needs has become an amazing filter for the positive: those who really care are now part of our existence and it is easier to discern people and situations who don't contribute to our growth or happiness.
When I go around town in Dubai, I see people's reactions to other children who are determined: some see the wheelchair, others see the amount of time it takes to get out of a car or move around. But I see hope for a better day, and the desire to help the child's mother and let her know she is not alone.
It is liberating to finally understand what really matters in life and what quality of life truly means. Every day, when I see my beautiful daughter wake up with a big smile and hear her sweet words, I see blessings.

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