In the spirit of Frida Kahlo

My part-time job moderating the blog for Easterseals national headquarters keeps me in touch with a lot of important people: people with disabilities and their friends and family members who write guest posts. This morning Easterseals published a post written by Bernhard Walke. Bernhard and his wife Rosa are the proud parents of seven-year-old Elena, and over the years it has become something of a Halloween tradition to feature a post about the creative, clever and cute costume their daughter wears for Halloween. Here’s her dad with a description of Elena’s costume this year. It’s one of my all-time favorites.

by Bernhard Walke

Elena did an expert job of selecting her princess costume last year, but Halloween 2017 was inauspicious to say the least. Elena was in the midst of declining health back then, and after Christmas she spent two months in the hospital.

In the months since her discharge, she’s been in great health, in great spirits, silly, and even tested at grade level. Suffice it to say, these days we are enjoying her good health and her delightful company.

So yes, she has been doing well on a daily basis, but still my wife and I are apprehensive. At any time, things could take a turn for the worse. As a result, we tend to edit ourselves and place undue pressure on our daughter.

And so, when it came to Halloween this year, we tried to create a simpler costume for Elena. That way, if things went South, we wouldn’t resent our daughter for the amount of work we’d put into the costume. One of the greatest things Elena has taught us is adaptability. If things don’t work out the way we want them to, we always have a plan B, C, or even D.

This year, we all decided that Elena would be Frida Kahlo for Halloween. Why? We have a few reasons:

• Elena is Hispanic on her mother’s side and European on her paternal side, just as the artist was;
• Despite the physical limitations of their bodies, both Frida and Elena are very creative;
• It was a rather easy costume to put together (see above, about being ready in case things don’t work out).

Our local school district hosts an annual parade for Halloween. Students strut around the school playground class by class to show off their costumes. This year’s parade boasted Harry Potter, Hermione Granger, the Notorious RBG, and various Marvel characters. But where was Frida Kahlo? Something must have happened.

Perhaps Elena’s body was tight? Elena wasn’t in the mood? Or then, there’s this: Second graders like the nurse’s office. Maybe Elena wanted to hang out in the nurse’s office instead of being part of the parade.

My wife and I have learned not to be disappointed by things like this. We want Elena to know that she isn’t obligated to perform for others. She isn’t the class mascot. She is not required to show others what she can do. We want her to do things on her own terms.

After the parade was over, Elena emerged with her physical therapist. Our daughter was visibly upset. Seeing me there with her grandparents didn’t help. She started crying. Clearly, this girl was not willing to be paraded around the neighborhood. Unlike her extroverted father, who won’t speak to a crowd smaller than 500, Elena is a bit more introverted.

Instead of parading around that day, Elena knocked off a little bit early from school to spend time with her grandparents, picking flowers in the alley.

And so, instead of forcing our daughter to go trick or treating, we let her do what she wanted: she gave out candy to the friends who came by to visit. Those friends were so kind: they greeted Elena, said they liked her costume, and doled out a few high fives.

When Elena’s cousins arrived, together we managed to go with Elena to each house on the block. We were flattered to discover that several houses had put aside candy that they knew Elena could eat. When steps prevented Elena from getting up walkways to the door of some of our neighbor’s houses, the neighbors walked down the steps themselves to greet Elena on her level. That, or Elena’s cousin Carmen would march up the walkway and skillfully pick through the goods offered to choose candy appropriate for Elena.

And so, okay. The parade was a bust. But who cares? Elena taught us how to respond — rather than react — to a situation. We had a great Halloween.