Having a Child with Down Syndrome, Part CXXVIII: Looking for Inspiration

Without a doubt, it’s difficult to be a parent of a child with disabilities. It’s a difficult to be good parent any day, but throw in disabilities and things get so much more complicated and so much harder. Some days are easy and rewarding and some days are…well.

I am not perfect by any means. I make mistakes. I get frustrated. I get angry. I lose hope. At times like that, I reflect and I look for inspiration. Sometimes inspiration comes from Alice herself. Sometimes it comes from seeing her interacting with her friends. Sometimes it comes from seeing other parents. Other times, I look for ways to create inspiration.

Last summer, Alice and I went to a couple comic conventions. I had an ulterior motive in going besides the actual convention. There is typically a section in the convention called “Artists Alley” which is several rows of tables of artists showing off their work. Many of the artists are there to sell their work and many of them offer commission work as well. I decided that I wanted to see if I could arrange a commission from one or more artists.

What I was looking for was a piece that met a theme of “how would a super hero treat Alice or how would Alice treat a super hero”. Describing this to artists was difficult in that I found myself choking up. The artists I spoke with were all very patient and kind, but few were willing to take this commission, and I understand. It’s scary. It’s personal. It’s exposed.

One artist I spoke with that day was Tana Ford. I didn’t broach a commission, but I liked her work and got her contact information and sent her an email. She seemed willing and excited to approach the idea. We went back and forth about some of the broad ideas and cost and she went to work. She sent me a scan of a pencil sketch and I was in tears. It was spot on. She inked and colored it and sent it off to me.

What does this mean? Mjolnir is the hammer that Thor wields. Only those who are worthy are able to do so. Nobody unworthy can even move it. But Alice can.

I have the work framed and it is on the wall over my desk. I look up at it frequently as a reminder that even on days when Alice is regressing in behavior or even on days when Alice is being stubborn that she is still worthy. Worthy of kindness. Worthy of care. Worthy of patience. Worthy of love. And this piece helps me. Not perfectly. Not absolutely, but it’s better than a pat on the back. I hope that I can arrange this with other artists as well.

“Steve”, you ask, “do you have any handy tips on how I can do this too?”

Why yes, yes I do.

  1. Be clear about your wants and expectations –┬ácommunicate to the artist what you want and what you don’t want. In my case, I wanted to leave a lot of the specifics intentionally vague, but I tried to communicate my reasoning: I’m not hiring the artist to be micromanaged. In fact, I feel that I’m hiring an artist for their imagination and skill and I don’t want to taint that.
  2. When negotiating price, look at the price and try to figure the hourly rate and if you think a skilled artist should be paid more and you can afford it, offer more. Yes, this is opposite of what our capitalistic society promotes, but keep the phrase “starving artist” in your mind.
  3. If the work is being done outside of a convention and the piece needs to be shipped, offer to pay for both packaging and shipping.
  4. Be sure to thank the artist and to say good things about them to others.

I had a wonderful experience with Tana and and I’m grateful that she not only accepted the challenge, but ran with it and I’m grateful to have a reminder and an inspiration when I need it.