Mum's the Word

Today I would like to introduce my mother, Dorothy, as we commemorate 21 years since I was diagnosed. In this interview, I asked her to share her experiences of parenting a child with narcolepsy with us.

My mother's memories of my childhood

Kerly: What is your earliest memory of me as a child?

Dorothy: Kerly loved to interact with adults. They enjoyed her company. She talked a lot.

K: What's your first or most vivid memory from when things first started to change?

D: Things started to change when Kerly was in secondary school. She would fall asleep while doing homework and would lose her train of thought, especially when writing an essay. Fortunately, those were the days of [erasable] pens. She would erase an unfinished sentence and start again.

K: When did you realise that the excessive sleepiness and tiredness must be more than the GP could explain?

D: Things got very challenging when Kerly was in college. She was struggling but refused to give up. She was diagnosed a couple of weeks before the final exams. By then it was too late, as she was failing despite all the hard work she was putting in.

How my narcolepsy diagnosis affected our family

K: How did the changes in my behaviour affect the family dynamic?

D: As Kerly slept more during the day, it became clear to us that she needed her own space. It was not fair to expect her sisters, 5 and 6 years younger than her, to keep quiet so Kerly could sleep.

K: How did you feel when I was first diagnosed?

D: When Kerly was diagnosed, I felt relieved and hopeful. After years of uncertainty, there were some answers.

K: Do you remember the day?

D: I remember the day because I was with her in Dr. Walker's office.

K: How did finally getting a diagnosis change things?

D: Getting diagnosed changed things medically and socially for Kerly. She realised that her life would not be the same as her friends'.  For example, she had to take a different pathway to university. She travelled every day and did it part-time.

Parenting a child with narcolepsy

K: Knowing what you know now, what advice would you give another parent whose child has recently been diagnosed?

D: Knowing what I know now, I would advise parents of newly diagnosed children not to rush things and be flexible. Narcolepsy is for life. Kerly taught me that the sky is the limit and that someone with narcolepsy can achieve, do fun things, and even travel to different countries solo as long as you do your research.

K: Is having a child with narcolepsy difficult?

D: Having a child with narcolepsy can be challenging, but we have such funny memories of situations before we were given the reasons for the behaviours. We even have memories of embarrassing experiences like Kerly falling asleep during a wedding service seated at the centre aisle. I was mortified as she would be in a lot of the pictures being taken.

Facing challenges with determination

K: How do you deal with my mood swings?

D: I am used to Kerly's mood swings now. I am happy when she is in a good mood. It reminds me of the Kerly before narcolepsy and what a joy and fun person she used to be most of the time.

K: Is there anything that helps make the challenges easier?

D: What makes the challenges less for me is Kerly's determination and courage. A friend of mine usually says that if Kerly did not have narcolepsy, she would have achieved so much more in life. She does not give up and she is always striving to do something new. I am proud of Kerly.

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