It's Children's book week! I now get to join this celebration of books for young people as an author/illustrator working on her debut picture book.

Yesterday, I turned in my first round of thumbnails to my publisher—laying out the 40 pages of art for my children's book, a story inspired by my rare disease and my relationship with it.

I can't share any of the new development art, but I can share things are moving along and this book is becoming more real. I may have teared up when I saw my final script strategically placed out along 40 white pages. Wild!

I remember when I first began blogging about my condition years ago. It was out of necessity because only a handful of people worldwide with my condition were talking about it back then. My condition is that rare. When you have a rare disease it’s important to talk about it or else nobody will know or care. Rare diseases get lost in the swells of more common diseases.

I then began expressing my disabled experience through art as a self taught illustrator.

I never imagined I’d go from being told my life was over in 2004 post diagnosis to today. I never imagined I’d be going from a car design student to writing and illustrating a children’s book. And not just any story, but my story—all drawn from a moment that happened years ago in the corner of my mind’s eye (when I was still walking in NorCal) after a fall that left me stranded and alone. That’s when I saw him and then sketched him. In 2012. And now that vision is going to be a book for everyone to see.

This picture book process has been filled with much insecurity. It’s unfamiliar territory, once again. A common occurrence for most of what I’ve done in my life. I didn’t think I was good enough. I didn’t go to school for this, and was told by other artists in the picture book world that breaking into the industry was very difficult, and my style and story wouldn’t fit in.

It’s been scary. Many times I’ve beat myself up because I’m not faster, or this didn’t happen sooner or I’m not as good as I could be or how much MORE I could do if, ya know, I was back to my non disabled self. But then of course I wouldn’t be me.

I’ve learned you have to do what scares you, if you’re ever going to grow. People think it’s a fearless thing, but I’m scared all the time. All the time. But like Marilyn Ferguson said, “Ultimately we know deeply that the other side of fear is freedom.”

Losing the ability to draw has been breaking my heart, and I’m not afraid to share how genuinely painful this is and how often it leads me to tears.

Holding a pen is significantly more difficult and drawing is incredibly long and painful thanks to the weakening of my hands and arms. Every move of my arm and stroke is premeditated and laborious. When you see my finished art through the years, or even my picture book when it comes out, you won’t be able to see this struggle because I have such high expectations for any work I do, that I work even harder to maintain my less disabled level. But it’s intense.

There is significant anguish in yet another loss, but this is what this book is about. How do we deal with loss and acceptance and continue to move on and keep seeking? I’ve accepted it and clearly I’m living my life, but it doesn’t mean this rare disabled journey still doesn’t give rise to hurt. I know we’re only supposed to represent disability through this positive loop of empowerment, but that’s just not real. It isn’t easy, especially when there’s no end to this relentless taking.

Thanks to all of you for supporting my (advocacy) travels, writing and art. Jason is always amazed at how l've built a following in social media short-attention-span land with LONG form writing and nuance. So I want to say, I appreciate you. The support only makes me want to share more. I can’t wait to share this story with all of you. #kamdraws