Fully Disabled: Fully Human

Krysta and Jeremy had just walked into Winona’s restaurant, their six and four-year-old in tow. As they draped their coats over chairs and got settled I made my way over to say hello. Krysta is a mother of three (11, 6, 4) with another on the way. She brings 31 years of passion and introversion entwined into all she does. I love her for both. Besides running our catering for Soulation’s Gatherings and writing a Bon Appétit-lauded foodie blog, Krysta is also the mother of Olivia.

Olivia has Angelman Syndrome (AS), a limitation that has two variations, either a deletion or a limitation of the 15th chromosome. Olivia has the limitation kind at four, Olivia cannot walk or talk, though she makes up for her inability to communicate verbally with shrieks of delight, smiling and food catapulting.

At Winona’s, I crouched down to say hello. At eye-level Olivia grinned and swung a mouthful of watermelon straight into my eye. Mascara and pink juice started dripping down my face. Olivia was thrilled.

“She got you,” Jeremy said, grinning.

Jeremy and Krysta have been married eight years. I wanted to ask them how their life with Olivia has changed them and they kindly agreed to an interview.

Jeremy, a 36 year old entrepreneur, physical-training-junky, nutritarian bolts into any new challenge. In high school, he had a standing bowling/McDonald’s date with his dad and a severely handicapped friend. Jeremy shares, “For a number of years right out of high school I prayed off and on, ‘God, if you ever want me or give me a handicapped kid, I’d be fine with that.’”

“He should have disclosed that to me when we got married,” Krysta said laughing. She went on to explain that she didn’t quite glide into the news.

“When I found out our baby might have AS, I felt like I was in shock. She was three months old and Jeremy shared this horrible creepy drawing from wikipedia. The nickname for kids with AS s is “Happy Puppet” because they look like a marionette, laughing and flapping their hands a lot. But, looking at that picture I felt like I was in a horror film. Olivia was only three months old and I didn’t realize she had all these symptoms. I was in denial, “No, no, no, no, no!” But when I started to read, I felt scared, because I knew Olivia fit this mold very well.”

Wikipedia’s picture next to Angelman Syndrome entry

I happened to see Jeremy and Krysta at Winona’s the night they learned the diagnosis. They didn’t look stressed.

“I wouldn’t use the word ‘stressed,’” Krysta said, “In some ways it was a relief to know. I think I settled into it. I’d say to myself, ‘I don’t know how to do this, but I’m doing it right now.’

But Olivia has changed both of them.

Jeremy said, “Olivia’s changed my filter and expectations. If you thought life was about having kids, raising them so they could move out and then you and your wife have time together, well . . .” Jeremy’s voice trails off. “There is a hundred percent chance that Olivia will need care for her entire life which will probably be into her 80′s. This significantly changes my expectations for life. Simple things get re-filtered like, ministry expectations, travel. AS doesn’t afford you selfishness. I still make an effort for self time, but Olivia redefines the purpose of my life. She’s made me re-think the purpose of everyone’s life. Western philosophy and evangelical theology say Olivia can’t fulfill the purpose of life. But I disagree.”

Jeremy once mentioned that he likes putting people into the position of interacting with Olivia, especially those people who are visibly uncomfortable around her. I wanted to know more about that.

Krysta and Olivia

“I think Olivia is an easy challenge for people to be either blessed or challenged by her. I’ve never had an issue forcing people into that situation. I want to root for the goodness in them to come out. Olivia has the potential to bring out the best in every person she comes in contact with. She provides opportunity for greater humanity. I would hate to shortchange people by keeping Olivia away from them.”

My favorite part of the interview came when Jeremy and Krysta shared how Olivia makes them more human.

Jeremy said, “I thought fundamentally and from a purpose standpoint that all humanity would have the same value and had to have the same expected purpose. But that’s false. The only thing wrong with Olivia is a little twist in one of her chromosomes. That’s only one part of her humanity. So, what’s the difference between her and some guy being a quadriplegic or some girl that has bonked her head and isn’t totally mentally handicapped, but not firing on the same cylinders than I am? There is a whole relativity of humanity that I started to observe. Still haven’t gotten through that, I still can’t figure out how everybody fits together. I can’t imagine what it would mean for Olivia to be “normal” or “typical”. From a healing perspective I have no idea where to go, I have never prayed for Olivia to be healed from AS. Why would I pray for that? It would say AS is against God’s will for her. And it makes me go back to the “normal” life paradigm. I have a lot more mercy and grace when it comes to people and the struggles they have. Everyone seems to be wired differently.”

Krysta explained that this question on being more fully human struck her. “When something like AS is placed in your lap, all of a sudden you have to practice self-sacrifice, contemplation for how God works, vulnerability, uncomfortableness talking about this with other people, patience. You have a choice, if you lean into these things it can excel your growth. I feel like it means a lot of ‘being worn’. There’s a song by Tenth Avenue North called ‘Worn” that I can so identify with (Listen to “Worn“).

Krysta continues, “Ann Voskamp has a quote I love to use about this. “It’s the heat that refines.” I can put my head down and grit my teeth and do this begrudgingly or I can lean into the uncomfortableness without a blueprint and let Olivia teach me so I can be worn for her. At the end of the day I’m seeing that creates much more beauty, much more vulnerability which makes me more human. I feel more human because of Olivia.

The MacGray Family, Christmas 2012
Photo credit: Kel Elwood

To find a good blog on parenting a child with disabilities at Amy Julia Becker’s blog “Thin Places: Faith, Family and Disability” or her book A Good and Perfect Gift</em>. For more Soulation resources about God and physical disabilities see MyFaithHurdle this month: Why Does God Allow Mental Disorders to Exist? Next month, look for my post at RubySlippers on living with adults who have disabilities, what it means to befriend someone with a food allergy and how those we avoid can teach us more about being human.