TAKING CARE Origin Story
While navigating life with my medically complex son I became increasingly more anxious and overwhelmed. I had so many things to organize and it was all over the place. To my eyes it made sense, but if anyone else had to navigate my “system” they would be completely lost.
This is where the old proverb, “necessity is the mother of invention” could not be more true. I needed two things: to know that if I was not around others would have what they need to care for my son and systems that organize my everyday life & emergency situations with a disabled child. So I went to work, organizing the chaos.
I started with an emergency information sheet that led to a care guide, then to rescue kits, then school tracking sheets, and on it goes. I was not the only person who loved what I had created for my family. So the journey began.
My Origin Story
I am a woman. A deep feeler. A mother. A lover of nature, connection and a good beat. I’ve never met a waterfall I didn’t like and adventure is my #1 love language.
I became a mother at 26 and am raising four of the most rambunctious, tenderhearted, young men you’ll ever meet. My journey into the disability community began in 2018, with the birth of my youngest son, Benjamin.
When Benjamin was born, aside from some fluid in his kidneys (hydronephrosis), we assumed he was born healthy. Then just before his first birthday he developed a life threatening blood infection. A few months later we started to notice developmental delays. Around 1 1/2 years old he had his first seizure. Then in early 2020 he received the rare genetic diagnosis of Nicolaides - Baraitser Syndrome. And the snowball of medical complexity continues to this day.
Being the mother of a disabled child was not in the plan for my life. It has been life altering in beautiful and really challenging ways. Benjamin is the most beautiful boy and I am unbelievably grateful to be part of his life. My hope is that our experience will help you and those you care for.
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