Jenny’s Art Show

This week’s story is about a beautiful artist, Jenny, brought to you by Maggie! Maggie and I met a few months ago at work and immediately bonded over our deep admiration and respect for individuals with extra abilities. When I told Maggie about The Heart Ability she was immediately willing to share her story, this is what it is all about! This story is something special, enjoy!

JENNY

My name is Maggie and my Aunt Jenny is an artist. She loves soda pop and animals and flowers. She also has Down Syndrome.

When Jenny was born in 1971 my grandmother had no idea that her newest daughter, number 4 of 5, would be born with an extra chromosome. Genetic testing was barely a phrase. The world at large was a different place for disabled individuals.

My grandmother felt called after Jenny made her entrance. She took a job at the state legislature in my home state and pushed bills across desks until a bill of rights for disabled individuals was ratified. My grandmother still, at 80, works as an advocate for disability rights. All this tireless work ensured a place for Jenny in society. However I, and my experience loving and living with Jenny are of a new generation, with new challenges.

My first memories of Jenny are scream-laughing in the back of my mother’s minivan much to her chagrin. I’m maybe 9 which would make Jenny 31. I grew up in a family where Jenny’s place was well ingrained. It never occurred to me as a little girl that there were people in the world that didn’t experience the boundless love of a family member who was different from the average bear. I grew up with Jenny as my friend, thought I knew she wasn’t like everyone else. I always knew there would come a day where I would reach a functional age beyond Jenny.

When that day came, it became easy to become part of the support system for Jenny and my Grammie. And I got the best jobs. I got to pick her up to go get a soda pop. I got to go to art shows and fairs. I got to be with an experience her world and her friends who also had DS.

Then I got even older. I pursued a nursing career and Jenny started acting strange.

It began with a major illness. And then Jenny started becoming an impossibly picky eater. She’d hide food and talk to people who weren’t there. Her erratic sleep schedule became all together unpredictable and her loveable stubbornness became steadfast defiance. These were all signs of dementia, which sounds laughable because it is nothing like what we think of dementia in the mainstream population.

When Jenny was born my grandmother worried about her heart. And when medical science caught up to her needs there my grandmother worried about her education. And when Jenny went to public school she worried about her adult life. And then Jenny became an artist.

Every barrier that seemed insurmountable has been conquerable through family and love and a little elbow grease. So I am positive our new worry, about the rest of Jennifer’s life, can be handled the same way.

Jenny requires some extra supervision these days. She has some extra quirks. As her parents get older she needs more support from her siblings, friends and even some hired caregivers. As her needs increase so does my amazement at her resilience.

Jennifer still paints. She still loves soda pop and staying up late and anything purple or to do with WWE. Jenny is exactly as she was made, with undying love.

Check out Jennifer at: http://www.jennysartshow.com

Seeing the similarities over the differences is the heart’s greatest ability.

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The Slumber Party

This week’s story comes from Aaron’s youngest sibling, his sister, Mary Kate! These two have the most special tradition and I am thrilled that she was open to sharing about it here on The Heart Ability! ENJOY!

In many households the word kidnapped is frightening. In the Trofholz house it’s a word that brings excitement and joy. I’m not sure who came up with the phrase, “Aaron’s getting kidnapped” but it stuck. Whenever Aaron is coming to have a sleepover with one of his siblings we say that we’re going to kidnap him from Mom and Dads house.

Sleepovers are always fun, but for Aaron a sleepover is more than fun. Since Aaron doesn’t drive, I think the thought of him being able to leave home for a night is just beyond words for him.

I try to kidnap Aaron as much as I can. He always looks forward to coming to my apartment, as he counts down for the next kidnapping. Aaron and I pick a day then I drive up to my parents to take him. He always has his little grey “pack pack” packed and ready to go. His packing consists of 20 DVDs (although we only watch two- Ted and I,Tonya), cool patches, heating pad, and Coca Cola.

When I pull in to our driveway I see Aaron standing in the front window waiting to come out to my car. The moment he gets in my car he puts in either his Queen CD or Home Alone Soundtrack. We listen to the songs over and over during the drive back to the city. Sometimes the drive takes a hour and a half. So yes, that means we listen to Good Old Fashion Lover boy 5+ times!! We never seem to listen to the music at a normal volume. It’s always full blast and we sing our little hearts out and dance the whole way home.

Once Aaron is at my apartment he barges right through the door and makes himself at home. So much so that he calls my room “our room”. This brings so much joy to my heart because he feels so comfortable. Like clockwork, Aaron places all his DVDs on my coffee table and then plops down on the couch.

No matter how much fun we have, Aaron always asks, “When are you kidnapping me again?!” We always have to plan our next date before he leaves so he has something to look forward to.

When I drive Aaron back home I always get emotional saying goodbye to him. Although I’m only 25 miles away from him I ALWAYS miss him. These “kidnappings” really prove to me that it’s the little things in life. Allowing Aaron to “get away” from Mom and Dad for one night makes him feel empowered and independent.

– – Mary Kate Trofholz

Seeing the similarities over the differences is the heart’s greatest ability.

It is our mission at The Heart Ability to share the stories of those with disabilities and those who love them. If you or someone you know has a story to share, please email us at theheartability@gmail.com - we would be honored to spread the good word.

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