From us, to you.

TODAY IS AARON’S BIRTHDAY!

Rather than attempt to narrow down a single ability he has taught the world over his lifetime, I have asked the people who know him best to contribute to a special birthday post.

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If a picture is worth a thousand words, how do you measure the emotions behind this picture?

The picture above has always been one of our family’s favorites. Is it humanly possible to look at this picture and not smile? Almost impossible not to catch the infectious joy this picture radiates… I mean seriously look at that precious little smile alongside those eyes full of hope.

Today, Aaron turns 33. This picture always seems to surface every year on October 17. It was taken on his first birthday, October 17, 1985. This year I asked my parents to reflect on what they learned during Aaron’s first year of life and my siblings what they learned over their lifetime. I gave them all about a week to ponder this broad and tough question before I bombarded them over fajitas with, “so…. what’d ya learn?” The response was unanimous.

My mom and dad stated so matter of fact, “celebrate things as they happen and don’t create expectations that are unrealistic.”

How is this related to the above picture? Spoiler, my mom and dad had to place a brick behind Aaron in order for him to sit upright in the picture. Unlike his peers, he was not able to do so on his own. However, they were not going to miss the opportunity to provide the little guy with the opportunity to celebrate all that makes him Aaron. They learned in that first year that life would not always provide Aaron with a brick to prop him up and that is A-OKAY! It was time to begin celebrating all that makes him unique, all that makes him sparkle, and all that makes him able to change the lives of every soul he encounters.

My dad stressed the importance of celebrating all of the victories, big and small “…every milestone was special regardless of what and when it was.” Removing the unrealistic expectations allowed them not to miss the opportunity to witness the beauty that is his life.

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Now let’s bring on the siblings…

First up, the first of us to meet Aaron… Matt!

“… I always remember coming home from college and Aaron being at the airport always so excited to see me and have ‘the whole 6 of us’ together and that it has really made me appreciate how much we love our family and close friends…how we all accept each other and are happy to be in each other’s company…specifically, the first Labor Day I ever came home from college. He was so excited and I was so excited to see him. But then it became every time I came home”

…Amen Mattie, Amen.

Next up, the baby of the family, Mary Kate. The 14 lessons she has learned from Aaron are worth taking note of, that is a promise.

  • always laughs no matter what the situation is
  • ask mindless questions when you feel like in you’re in an uncomfortable situation
  • always do what you want to do
  • the little things in life are what matter… such as going for a car ride around the block listening to Home Alone and getting a coke
  • screaming at the top of our lungs to Free Fallin by Tom Petty can instantly put you in a good mood
  • making funny and weird gestures to each other in public
  • not caring what anyone thinks of you
  • living every moment to the fullest
  • having the worst day ever and a target trip turns the day around
  • shaking your butt in public is always acceptable
  • always answer a FaceTime call from him because you’re guaranteed to smile
  • never make a promise you can’t keep/be held accountable
  • never turn down a late night cruise
  • always say yes to a sleepover even if that means sharing a bed with Aaron and 2 dogs

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Next, my mom’s take on Aaron’s emotional response to “Happy Birthday.”

Happy Birthday to You!
Happy Birthday to You!
Happy Birthday Dearest Aaron!
Happy Birthday to You!

Aaron is so moved by the song “happy birthday.” His eyes well up with tears and he grabs his heart ever so intently. Mom believes this is due the humility Aaron practices in his day to day life. She said, “…the man does not lack self-esteem, that is for sure, but he does not necessarily see how extremely special or his direct impact on the world around him.” She believes that on October 17, specifically in that moment when we all sing to him, he feels it and he feels it deeply.

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Lastly, let’s wrap this up with an open letter from me to dude.

Dear Aaron,

Although I have only known you for 26 years of your life, it feels like I have known you an eternity. God had BIG plans when he placed you on this earth 33 years ago. You light up every room you walk in, not in the cliche way. In the way that truly no words can describe. Being your little sister is my greatest privilege. I cannot begin to comprehend a life that did not include you. Your kindness is something few words can describe, it is limitless and it is available to all. You have taught me that it is our differences that make us unique. It is by truly embracing everyone and everything that we live and grow. Your kindness is something few words can describe, it is limitless and it is available to all. It blows my mind that you believe whole heartedly your entire family has Down Syndrome. You choose not to see the label of Down Syndrome that was placed upon you 33 years ago as a disability. You embrace all of the infinite abilities jam-packed into that extra chromosome. It is ever so clear that you see it as a uniting factor that has the ability to change this world… and I am with you buddy! Our family would never have been the same without you. This world would never have been the same without you. You are a gift beyond measure. Through you I see Love has no expiration tag, no judgement, you have taught me that love is the purest form of joy. I thank you, from the most sincere part of my heart for continually challenging my limiting beliefs, because of you my world is much greater. Because of you my heart knows love unlike any other.

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Love, Andie

If you made it to this point… thank you! Thank you for joining us on this journey of reflection on why our lives are infinitely better because of October 17, 1984.

Aaron, We Love You.

HAPPY BIRTHDAY AARON!!!

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It’s Ok Not To Be Ok!

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“People with Down Syndrome are Always Happy”.

Wouldn’t that be wild if that were the case? Individuals with Down Syndrome are not always happy. (insert gasp) really?? Try to take a guess as to why this is not true, go ahead I dare ya. This week’s ability is the ability to not be okay.

Why aren’t people with Down Syndrome always happy? Because… they are HUMAN! That’s right, you heard me. They are human beings, just like you. Don’t get me wrong, Aaron is fairly happy 99.9% of the time, however there are moments where his humanness rears its gorgeous head. I think this is a pressure so many of us face, or at least I do. This pressure to always be “great!” can be quite exhausting. I don’t necessarily believe this is a pressure from the outside world, rather it is a pressure that comes from within. If we are honest, how will people react? Will they still be our friends? Will they still pick up our calls? Vulnerability is one of the scariest mountains to climb however the reward is something few words can describe. Through vulnerability comes connection. When we can share that what is most “shameful” or “embarrassing” we provide others the opportunity to recognize they are not tackling this life alone.

The reality is, everything is not “okay” all of the time 24 hours 7 days a week. If everything was okay all of the time, we would be robots… and even robots malfunction. There is a beauty few words can describe when Aaron faces a mountain that seems to steep and overcomes through willingness to be vulnerable about the climb.

Recently, Aaron was experiencing severe pain. A pain that was challenging for him to find the words to articulate the discomfort. He voiced frustration, disappointment and straight up anger… and it was absolutely breath taking. Please don’t get me wrong, I would never in a million years wish to see him in pain. However, seeing his ability to scream it out and express the most raw of feelings was extraordinary. It reminded me that sometimes life throws us hard balls (insert a lets make lemonade out of lemons quote) but really, life can be tough but that does not mean we have to be the world’s toughest warrior. Strength comes when we can admit feelings of defeat and open our hearts to the possibility of help through vulnerability and connection.

Sure, most of the time you see someone with Down Syndrome they may be happy. However, I believe this is due to the deeply embedded ability to make everyone’s life better by simply being in it… that will have to be another post. Until then, get out there and see the similarities over the disabilities.

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

If you or someone you know has a story they would like to share about their experiences, please contact theheartability@gmail.com

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