Neither your typical mum nor your typical motherhood
I am Katie
Disclaimer: I am not a writer. I am a mother who writes. I am many things: a wife, a teacher and a lover of podcasts. I could eat pastries every day and drink endless cups of tea. I usually reach peak happiness in a forest with the sun on my face and my son asleep in the pram.
I stumbled into this rare disease world in August 2021 when my son was diagnosed with DeSanto-Shinawi syndrome, a rare genetic disorder. I staggered bewildered into the writing world when I needed a way to process my new life as the mother of a child with a rare disease.
This blog is a way for me to be raw and honest about the highs and lows of this rare life in the hopes that someone somewhere might read this and think “hey, I feel exactly the same”.
I spent a long time grappling with my emotions in silence. I’d sob in the bath ashamed of my feelings or wait till everyone was asleep then cry until anxiety and insomnia took over. I never want anyone to feel that level of loneliness and shame again. As Matt Haig says in his book The Comfort Book:
“Silence is pain. But it is a pain with an exit route. When we can’t speak, we can write. When we can’t write, we can read. When we can’t read, we can listen. Words are seeds. Language is a way back to life. And sometimes it is the most vital comfort we have”.
So, here I am ready to offer some comfort with my words and tell you: you are not alone.
What my friends say about me
“Being a mum is not easy, and I can only imagine a tiny part of being the mom of a child with disabilities. We all worry about our kids, we want them to grow well, healthy, and be able to manage life no matter how hard it gets. But when you are faced with the stress and anxiety driven by the uncertainty as Katie had before the official diagnosis of Kasper’s syndrome, even the big efforts to keep your child “on track” with a lot of different therapies, can seem worthless (it isn’t). Kasper’s diagnosis brought a new chapter, a long healing chapter for Katie, and I am completely sure that Kasper can’t have a better mother than Katie.”
“Do you enjoy being a mother?”
Does anyone? I thought to myself. “No”, I said out loud. How could I explain to the therapist opposite me that I felt like all my mum friends had received a manual on how to raise their child and I seemed to have been overlooked.