Goodbyes Suck

“Goodbyes Suck” – Aaron Trofholz

Aaron highly anticipates any time our family gets together and the holidays are no exception. He looks forward to these events with such passion. The monthly countdown quickly turns into weeks, days, and the final minutes until each family member pulls into the driveway.

Then something happens, he realizes we will inevitably be leaving to return to our homes. He becomes quiet and slightly withdrawn. When you ask to sit with him, his eyes well up with tears and he says very matter of factly, “Goodbyes Suck”.

He has this unique ability to be present for the good times and present for the hard times. He acknowledges the stuff he finds challenging and he owns it.

As Christmas Day started to pass, he became quieter and quieter. He remained fixated on what time we were leaving, why we were leaving, and when he will see us next.

A delicious Christmas dinner came to a close and Aaron excused himself immediately. He needed to report to his duty of monitoring the door for our departure. As I loaded my arms with bags my eyes welled up in sync with his welled up eyes. It hit me like a ton of bricks… rather than hide my tears in embarrassment, I would allow my vulnerability to be seen. That I too can be present for the good times and be present for the hard times, much like Aaron. Had I not witnessed his ability to show up in his truth, I may not have been able to do the same.

Yes Aaron, goodbyes suck. In the suck, you have shown me how to be grateful for a love that few words can articulate. The love of family. You have shown me that sometimes the most loving thing we can do is to show our wholehearted vulnerability. Love shows up for us in various forms, even the hard moments can be rooted in deep love.

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The Courage to be Aaron

HAPPY BIRTHDAY AARON!!!

In just 34 years you have easily changed the lives of each person who has had the privilege of crossing your path. 

Your birthday has always been an emotional day for our family, the most beautiful kind of emotional. Maybe it’s your infectious self love that insists on recognizing the entire month of October as your birthday… or maybe it’s more than that, maybe it’s deeper. 

I have realized something new this year. October 17th almost seems to be a day of reflection, much like New Year’s Day. I find myself pondering, how can I be more like Aaron? I want what that guy has. I want to have the lenses in which you view the world. For 27 years now, I, much like anyone who knows you have been completely in awe of your entire being. However, for the first time it has struck me, we can all be like you. It just requires a little courage. 

The courage to be Aaron, to live a life that is unapologetically true to you. You show up for life whole heartedly and life shows back up for you in return. You have never hidden from your truth, you have always been Aaron. That extra chromosome of yours has sky rocketed you into a way of living that this world needs. I believe with every fiber of my being that at the core of that chromosome is not only infinite love, but the most wild courage known to mankind. 

The dictionary defines courage as, “mental or moral strength to venture, persevere, and withstand danger, fear, or difficulty”. We live in a world that finds comfort in labeling people. Since October 17th 1984, you have shattered expectations, judgement, and misconceptions by being YOU. In my humble opinion, Merriam Webster has it all wrong. The definition provided for courage is inadequate to say the least, it misses the core of what courage is truly all about. You have taught me that courage is the strength we find in the ability to suit up and show up. It is the willingness based on faith to see the light at the end of the tunnel. It is the stillness we feel when we are no longer questioning if we are enough – we are enough. You have shown me that courage is not just an action, it is a way of being. 

Happy Happy Birthday Aaron! May your 34th year on this earth be nothing short of pure joy.

I love you.

We celebrate you today and everyday. 

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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Characteristics Found in the 21st Chromosome

HAPPY WORLD DOWN SYNDROME DAY!!!

March 21st 2018

In honor of World Down Syndrome Day, below are 21 of the top characteristics I believe make Aaron’s 21st chromosome so unique. Truthfully, everyday should be World Down Syndrome Day, but that is another day’s topic. Aaron rocks his extra chromosome with all of his might, he gives life his all and it gives it right back. I feel so very humbled for the opportunity to have the experience to learn from someone who embraced his extra chromosome and so willingly shared its beauty with the world. With that being said, Aaron, today the world recognizes you! Thank YOU for all that you do. What would your life look like if you were rocking an extra chromosome?

  1. Humor – the laughter that comes deep from the belly; the kind of laughter found from being silly and not at the expense of others.
  2. Unconditional Love – love that knows no limits without expectations.
  3. Hope – for a better tomorrow when today doesn’t go as planned.
  4. Limitless Kindness – an act of love that is available to all.
  5. Courage – the willingness to ask for help when he recognizes this life isn’t meant to be tackled alone
  6. Strength – in moments of perceived weakness is when his strength is ultimately found.
  7. Routine – recognizing what sets his soul on fire and structuring it into the day to day.
  8. Friendship – all inclusive, no hierarchies.
  9. Forgiveness – letting go of the things that no longer serve him, because he has far too much life to be living.
  10. Be Present – he shows up for those around him, he finds the joy of life in each moment.
  11. Trust – an unshakable sense of “it will all be okay”.
  12. Honesty – the good, the bad, the ugly.
  13. Faith – the willingness to live a life with minimal fear.
  14. Social – the power of connection and the willingness to reach his hand out to a stranger.
  15. Punctual – if we make plans for 5pm on Friday, you betcha those plans start at 5pm on Friday, and if not, he’s calling at 5:01pm.
  16. Inclusion – in a world where we constantly strive for Aaron’s inclusion he so seamlessly includes the world.
  17. Fun – letting loose and disregarding how he “thinks” he “should” look.
  18. Complementary– the importance of building each other up rather than tearing one another down.
  19. Memory – his brain has a file cabinet 100 miles deep that stores every single soul’s birthday.
  20. Active Listener – his ability to listen with the intention of allowing someone to feel heard without calculating a response.
  21. Family – whether it’s blood or chosen, family first. Always.

For more information please follow check out World Down Syndrome Day

If you or someone you know has a story they would like to share about an experience seeing the similarities over the differences please contact me at theheartability@gmail.com

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

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Your Humanness is Showing

This week’s story is from Joe Landfair, one of my dad’s buddies. From the moment Joe met Aaron, he treated him as the human being he is and with the utmost respect. He recognized Aaron’s humanness over any other label placed upon him. He placed Aaron’s humanness at the forefront of their relationship. Therefore, he is a rockstar in my eyes – we need more people like this!

I emailed Joe inquiring about his interest in sharing about seeing the similarities over the differences. Within 24 hours he responded with a heartfelt story that brought tears to my eyes. Tears of joy, because his memory embodies what we all can only hope for – our humanness recognized.

It is a great pleasure to introduce, Joe.

“I think the thing I would say I’ve seen from Aaron is how much he enjoys just being part of the group.  Whether we’re playing a game or just hanging out, I perceived a desire in Aaron to be around others, interact and feel loved.  I remember playing bocci ball in your front yard with Aaron and some people from work.  Aaron was doing really well, he has great hand eye coordination.  I could also see he was really competitive.  As he had success in the game, we cheered him on and congratulated him on his good play.  I sensed in him, a true satisfaction from this and a sense of pride.  He enjoyed being part of the group,  competing in the game and doing it well.

I think, we all as human beings, want to accomplish things and be recognized for that.  In that way, Aaron is no different from anyone.  We all want to feel included, to belong and have that sense of self-worth.  I felt Aaron really enjoyed those moments and it was great to see him smile.  He reminded me that regardless of the various gifts and abilities we each have, we are all human beings with common wants and needs.  From this, I think Aaron taught me to be a little more sensitive to those needs in others whether different or similar.  I’m grateful I’ve had the opportunity to know Aaron”.

Thank you Joe for your willingness to share such a beautiful memory. I certainly agree with you, Aaron has taught me the exact same thing. Thank you for so graciously reminding us of that. Thank you for reminding us when our humanness shows it’s just our desire to belong, to feel included.

If you or someone you know has a story they would like to share about an experience seeing the similarities over the differences please contact me at theheartability@gmail.com

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

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The Untold Story of Thanksgiving

The Untold Story of Thanksgiving

On Thanksgiving, I shared a story about how special Thanksgiving is in our home along with how Aaron brings that sparkle of gratitude into his everyday living.

However, something was left out. Not intentionally, it came about during the evening of Thanksgiving. More specifically, over the dinner, the importance of that will be clear momentarily.

As the most scrumptious dinner came to a close (shout out to momma Trofholz for whipping up her 33rd Thanksgiving dinner) things got heated quicker than the pumpkin pie in the oven. We had just finished going around the table expressing something we are grateful for, the theme appeared to be the recognition of what an absolute privilege it is to be near loved ones. The discussion of gratitude seemed to drift as we talked about the possibility of Aaron having a “man cave” on the first floor and how absolutely cool that would be.

Brief background of the significance of this discussion… My parents and Aaron moved back to Lake Bluff from Ann Arbor earlier this year. Aaron quickly claimed the front living room as his; it was not long before his Queen cassette tapes, old socks, and q-tips covered every square inch of the room. This is the room that greets everyone as they enter the home. You may think this is to everyone’s dismay, but this is our normal – this is life with that extra chromosome. We all (mostly my parents) all drop subtle hints about how cool it would be for him to move his stuff to the “man cave”. The designated “man cave” is a room off the entryway that has an awesome fireplace and most importantly doors, to close away the organized chaos. You see, that extra chromosome of Aaron’s encourages his mind to engage with his world in a structured chaos. It does not make sense to us, but it makes sense to him (Don’t even think about moving that Queen tape or sock even an inch-because I promise you, he will notice). So the hope for the past 5 months has been to help Aaron transition to the “man cave”.

Back to that dinner… as we all encouraged Aaron to move his stuff over because it’d be WAY cool for him, something was activated in him. He launched his dinner plate across the table nearly whipping Mary Kate in the head (and by plate I mean mom’s antique Christmas China). Miraculously, the plate was not harmed in the process.

(Enter a moment mixed with shock and chaos)

Aaron jumped up, hollered, “I am mad” and stormed away. This is not the first time this has happened, therefore over the years we have learned to let him walk away – he needs that autonomy. Much like you and I, when we are angry or upset, the last thing we want is someone telling us how to express our feelings. So, imagine how even more complex that is for an individual who does not necessarily have the words to match his emotions.

About 5 minutes passed and when the shock of it all faded, Matt, Mary Kate, and myself proceeded to find him in “his” living room. We sat down with him and we asked Alexa to play the Home Alone soundtrack. We just sat there in a brief silence followed by bursts of laughter. This is what Aaron has taught us, the power of love. This time of year can be stressful for a lot of people – disability or not. It’s hard to find the words to articulate how we are feeling all of the time, so naturally we become activated. But, the solution is how quick do we rebound? Aaron taught us the power in quick rebounds and the importance of never fostering resentment.

The ability to rebound after a not so ideal moment reinforces our humanness.

As siblings of Aaron we learned to love unconditionally… and boy, do we love hard. If this Thanksgiving taught me anything, it taught me the indescribable value of forgiveness and that it is inevitable through connecting with those around us while rebounding into love.

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

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If you or someone you know has an experience to share about seeing the similarities over the differences please contact me at theheartability@gmail.com

 

The Lighthouse

The following post was contributed by Aaron’s Uncle Jim and Aunt Mary… Or as Aaron so lovingly refers to them as “Uncle Jimmaaaay and Aunt Maryaaaaaay”.  Jim and Mary were so kind to share a recent and favorite memory of Aaron. They so beautifully were able to put words to an experience anyone that knows Aaron has encountered. His ability to draw any and every one near. He is a magnet for love.It is with great pleasure I share with you “The Lighthouse”-We are affectionately known by Aaron and his family as Uncle Jimmeee and Aunt Maryeee.  It is endearing to us since no one else in the entire world has these names!  Aaron himself patented this ‘Special Greeting’  ….. now catching on by other family members who want to be ‘in’ !!

A recent memory of Aaron was at the end of May at our son’s wedding.  Kirk, Cath, & Aaron journeyed from Ann Arbor to Door County, WI.  We remembered their arrival at the Friday night “Meet and Greet”  — Big Smiles that illuminated the Boat House venue, fitting right into the crowd of guests that had gathered.

Aaron is everyone’s “LIGHTHOUSE!” So many friends were greeted by Aaron’s friendly smile and “Hi!”  He sat down next to one of our guests —  and they became BF immediately!!

Celebrating the wedding the next day, Aaron looked forward to the various events.  He chose a “Purple shirt and a New tie.”  Kirk, Cath, and Aaron were seated at our table during the Reception.  He loved his favorite meal – CHEESEBURGER & FRIES.

He was loving it — all smiles, happy, and content!When the music started we all watched Aaron out on the dance floor surrounded by many different guests — enjoying the moments, the times, having such fun listening and dancing to the rhythm of the music. So many of the guests were drawn to this Special Young Man — full attention to his surroundings and full of spirit!  Aaron fit into our group, graciously enjoying every moment of the wedding that weekend.

Aaron uses his senses of sight, hearing, smell, tasting, and touching!  He looks beyond the everyday “Big” things to find the simple joy and love which brings everyone closer to each other…..connecting is the key.  Aaron’s smile and spirit is his ability for us to learn and put into practice the simple things in our everyday lives. Because we cannot see ‘spirit’ it is easy to forget about it or assign no value to it.  Soul is the eternal part of a being.  Aaron is a pure Master of his Spirit.

We are Blessed to have Aaron in our extended family.  

THE END

May this piece serve as an inspiration for you to BE The Lighthouse.

A major thank you to Uncle Jim and Aunt Mary for sharing their experience with recognizing the ability over disability. WE are so blessed to have you all in our family.

If you would like to share about your experiences with seeing the similarities over the difference OR the abilities over the disabilities please contact me at theheartability@gmail.com – it would be a privilege to share!

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