I need to tell you something

I recently connected with Linde Thomas on Instagram. She has a beautiful message to share and I am so very excited to share it here! Linde’s story about her daughter Sarai was first shared on LoveWhatMatters.com.

Per Linde, “Our desire is to share awareness and thoughtfulness to people with disabilities. Having a 25 year old daughter that has special needs ourselves, we have struggled throughout the years with how to make it clear to people that in many situations she needs a little more time, requires a little more patience, needs a little more assistance and compassion than is commonly given. We try to be with her at all times to protect her, however, sometimes that is simply not realistic. We searched for a way to help others quickly understand and to be aware that she is special needs without us trying to explain constantly to everyone we encounter”

Without further delay, please enjoy their story. Links to their social media and website will be at the end 🙂

“How do I fix this?

My life has been quite the fairytale. I married my high school sweetheart, AKA knight and shining armor. He’s the prince charming every girl dreams about. I still wonder how I got so lucky, (why would he chose me). Right after graduating, we had a successful retail business and had our first child that was the light of our lives. Everything was so perfect that we decided to have another baby. It was such an exciting time in our lives and we talked about having children while we were young so we could retire and be done raising children before we turned 40.

We had our second baby girl (my husband always wanted girls) right after our first daughter turned 4. I was so excited about our second baby. I remember doing everything correctly and not even drinking caffeine. I never thought anything could be wrong with my child, because I had never been around anyone that had a special needs child or even had any at my school that I remember. When our second daughter was born, we had a few complications where she had some oxygen problems during birth. However, they did numerous tests and sent her home as a healthy baby.

I was overjoyed with this baby. She was so perfect! She was so easy, happy and I was able to take her to work with me, too. We were in absolute love. She quickly became everyone’s ‘favorite baby.’ People would ask to hold her because she would reach out for them. She was loving and so friendly to everyone. She didn’t walk until around the age of 2, but people told me some kids are ‘late bloomers.’ As her personality developed, she became a shining light to everyone she was around. I remember finding her after church one day at the playground telling a man how handsome he was. She was always complimenting people and hugging them. It brought some people to tears because she would be so encouraging and loving.

I became pregnant again with our third daughter when Sarai was only 10 months old. We were shocked!  ‘I couldn’t be pregnant,’ I thought. ‘I just had a baby and this one wasn’t even walking yet!’

After the shock, we got ready for our third daughter. Sarai was so easy to deal with that I knew I could handle it. Our third daughter was born 18 months after Sarai and we were again feeling so blessed and thankful.

One day my life changed. I took the girls to a checkup at the doctor by myself because my husband had to manage the shop. (Sarai was 3 years old) The doctor was very serious, a very dour-faced man, except when he saw Sarai: he had a love for her. She had charmed him! She would hug him and tell him what a great doctor he was, and his sternness would melt away. As we were there, the doctor left the room for quite some time after seeing Sarai. I was getting irritated because I had two babies and he was having me sit in the room for so long.  He came back in the room and his countenance seemed tragically sad. I thought he must have been helping another child with an emergency. He said he needed to tell me something and it was not good news. I was not used to bad news so I didn’t know to be scared. He looked at Sarai and teared up. (this is not the kind of doctor that would tear up).

‘Sarai has neurofibromatosis and she needs to go to a specialist right away,’ he said.

Neurofibromatotois is a disease that causes little tumors to form on nerve endings and can affect learning, balance, sight, hearing, and much more. He had noticed over the last few visits how she was walking and she had cafe au lait spots that were spreading and getting bigger. He just kept telling me how sorry he was. I have always been good at fixing things for my children so I asked him, ‘How do we fix it? Is there medicine? Is there some sort of surgery?’ He just shook his head and said to go to the specialist. They would let us know for sure with an MRI if she had it or not. He was hoping she didn’t. He said not to look at the internet when I got home. (Of course, that was the first thing I did.)

I remember taking my sweet little girl to the car that day and buckling her in the car seat and saying ‘There’s nothing wrong with you. You’re perfect!’ I went home and called my husband, relatives and few friends. They all said the same thing. ‘Don’t worry… there’s nothing wrong with that little girl!’ We were all in denial. We made an appointment with the specialist and they did an MRI that confirmed she had neurofibromatosis and it was throughout her brain stem. They said she would have a very difficult life and we would have a difficult time raising her, too. She would probably need care for the rest of her life. I was wondering, ‘What does that mean? Is my life over? How can we possibly manage our business, our children, our lives, and this disease that came out of nowhere?’ I was devastated.

‘I can’t do it!,’ I thought. I only felt that way for a few days and then I was sure the doctors were wrong and that it would be easy. I would teach her to do everything she needs to do. I’ll help her with homework. I’ll send her to a private school, etc. We did do all those things and more. I was in so much denial, but it was probably good that I didn’t know how hard it was going to be.

I again asked myself… ‘how do I fix this?’

I spent so much of my time fighting for people to understand her. Her disease had affected her ability to learn and mature. Numbers and words would jump around on her and her attention span was short and furtive. The schools just thought she was lazy. Nobody knew what neurofibromatosis was and would just dismiss me and ask if this is my only child, etc. The saddest part is my sweet Sarai’s personality started changing drastically. It was in the 90’s and schools were not equipped for special needs children as they are now. They would put her with the regular kids and she just could not keep up. Kids were mean, teachers were hard on her. She was suddenly scared of people and wouldn’t talk to anyone anymore.

We would try to help her with her homework and she could barely hold her pencil. She would cry every night and pull her hair out, literally. She just couldn’t get it. We had one instance where a teacher thought she was being lazy because she was not finishing her work in grade school, and she put Sarai outside and forgot about her. She was so scared by the time the teacher remembered she was outside that she was having a panic attack. When I found out and called the school, they miraculously moved her to another classroom.

School never got easier for Sarai or for us. Through high school I was still tying her shoes and getting her dressed. It was such a struggle and we had so many instances where people were so cruel to her. I was scared to have her out of my sight where I could not protect her. She started not wanting to go anywhere. She just wanted to stay home with her dogs. They were her best friends in the whole world. They did not judge her or be cruel to her.

A dream of Sarai’s was to one day ride a bicycle, like her sisters could do or the kids playing around the block. She had never ridden a bike before because of her balance issues, she would constantly fall over. One day, when Sarai was about 20, her grandpa got her a three wheeled bike. She was so excited! She could ride to the mini mart by herself. This was a big step for all of us. We got her a huge orange caution flag for the bike, a horn and a bright helmet. We thought that anyone could tell that she was special needs by seeing the three-wheel bike and the flag. She put her dogs on a leash and off she went to the mini mart. When she reached the corner of our street, a lady came out and started yelling at her that she had seen her dogs get out before and run through the neighborhood. Sarai had always tried to be careful, but they at times had slipped by her at the front door and would tour the area and then return home. The tragedy here was the lady just lost it on her, and said she would call the police and have them taken away. Sarai was so terrified that she could not speak, turned around and fled home. She was crying hysterically when we found her. From then on, she could not bring herself to ride her new bicycle around the neighborhood.

She became more fearful of going anywhere and the thought of going somewhere alone would terrify her. We did our best to take her places and encourage her there was nothing to be afraid of, and that most people were kind and thoughtful. She began collecting Barbies and creating characters and stories about them. One of her favorite things to do would be to go to a toy store and pick out new clothes and items for them. We eventually bought her a cell phone so she could go into the toy isle in the store while we shopped for groceries and she could always reach us. After a great deal of time working with her, she began to feel comfortable having a respite caretaker that could take her out a few days a week for us to public places. This was a giant step since she has a hard time trusting people. She would bring the cell phone with her, taking pride that she could do it on her own.

After going out one day, she called me from a store parking lot crying so frantically that I was sure something terrible had happened. She had gone to the toy aisle and picked out a Barbie she adored and was excited to bring it home to her collection. Feeling courageous because she had actually gone to the store without her parents or siblings, she decided to go to the self-checkout. She paid and checked out and headed for the door with her care provider, and as she walked through, the scanner beeper went off. She was scared and didn’t know what to do as a security person came up to her abruptly and demanded a receipt. Her mind went blank, she couldn’t remember taking the receipt. It was one of her worst fears after seeing a video online about a special needs girl getting handcuffed at Walmart. She started to panic as she looked for her receipt in her pockets and couldn’t remember where she put it. As she was frantically looking, she couldn’t talk, couldn’t think, and another security person came up and demanded it. More security surrounded her. Her fear turned to terror. She thought they were going to take her to jail and she would never see her family again. Finally, they realized it was her phone reacting with the scanner and let her go. She was able to walk out, then broke down into tears and called me. It was horrible, it was traumatic, and it seemed so unnecessary.

This is when I realized, when I couldn’t be beside her to tell people she was special needs, that somehow, I needed to be able to show people. She is unable to articulate it herself, but If she had something she could show them, I believe they would have been more compassionate and patient. I did end up contacting the company’s corporate office and they said they would talk to their employees and go over the video tape. They asked for me to bring Sarai in so they could talk to her but she was way simply too terrified to go back. I’m sharing the story just to remind people to always be kind and to have some caring and patience for people. This story is just one of the many our family has of situations with her in public. nd yes, she has gone back again after some persuading.

Having a 25-year-old daughter that has special needs, we have struggled throughout the years with how to make it clear that in many situations she needs a little more time, requires a little more patience, needs a little more assistance and compassion than is commonly given. I again wondered –‘How do I fix this?’ We remembered that on a trip to Disneyland, the kids with birthdays were given a button that said ‘today is my birthday!’ All of the Disney cast members would look for those with buttons and be sure to greet them with a ‘Happy Birthday!’ whenever they were seen. The buttons were large, fun, and caught your eye when you walked by. Soon, we found ourselves wishing those kids a happy birthday as well! With that in mind, I made some buttons and a lanyard that said things like, ‘Be Patient, I have Special Needs’ and ‘Please be Kind, I have Special Needs.’ At first Sarai had no intention of wearing one, and it took some persuasion to finally pin one to her jacket when we went to the store. What happened then was just short of amazing to us. She had gone up the aisle to get jalapenos to make a snack that she loves to make (jalapeno poppers – I know, right?) She came running back with a big smile on her face. A kind lady had seen her button and had taken the time to come up to her and sweetly ask what she was going to make. After so many years of getting dirty looks from people for accidentally bumping into them or not realizing she was in their way, it was the first time we can remember that someone spoke to her in a store. I think we all cried.

Sarai wears the buttons and lanyards everywhere now and has been constantly engaged at restaurants, parks, stores, movie theaters, and just about everywhere she goes. It seems that everyone has a loved one, a friend, or knows someone with special needs it touches a heart string when someone like Sarai is no longer trying to hide it. We started a foundation called KindHearted for Special Needs where we have tshirts, buttons, lanyards, bracelets that people with Special Needs or family members or loved ones can wear to bring awareness. We have found they give people a moment to pause and take a moment to give patience, kindness, thoughtfulness, assistance or whatever the situation may require, for people with disabilities. We have realized that most want to be good people, and this gives them an opportunity.

With Sarai’s disability she has and will likely maintain the maturity level of about fifth grade.  As I have already mentioned and you can also imagine, the struggle throughout middle and high school was devastating to her and, really, all of us. When she did finish, we thought, ‘what do we do now?’ We tried placing her with some helpful agencies to see if she could work a regular job or some workplace assistance but were told she could never compete in a workplace. Again, we were sadly frustrated. A friend asked if she would mind coming by and helping at a daycare. As it turned out, the kids adored her and she found that she could identify with and engage them better than many adults that just did not have the patience. Helping with the kids has brought meaning and purpose to her which we were so afraid she may never have. She comes home with stories about her little friends almost every day and even invites them to her birthday parties.

Sarai’s love of Barbies and her newfound confidence has brought her much success with an Instagram she has created called Shrunken Adventures. She has given her dolls their own character names and background stories, taking them all over world and documenting with pictures and titles for her thousands of Shrunken Adventures followers.

I would say that my life story has not gone the way I would have written it myself had I been the author, but I love every minute of it. I have three wonderful daughters, a husband which we are celebrating our 30thanniversary, and even an adorable grandson. We are not unique in that we all have struggles, heartaches, tragedies and victories, but I have learned to have a little more patience, a little more kindness, a little more compassion, and to be a little more kind hearted. My fairy tale continues.”

Thank you Linde for sharing your beautiful story with us, we are grateful for your wildly brave heart and the message you are sharing!!

follow the Thompson family’s journey on instagram @kindhearted4specialneeds or check out their website https://kindhearted4specialneeds.com to learn more!

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‘I need to tell you something.’ He teared up. ‘How do we fix it?’ I took my sweet little girl to the car, and buckled her in. ‘There’s nothing wrong with you. You’re perfect!’

Gift from God

So excited to share my Uncle Kent’s story – it is vulnerable, authentic, and full of love!

From an Uncle’s perspective……

Aaron’s dad is my only sibling, and Aaron is the first-born child, grandchild and nephew on both sides of the family.  As you can appreciate, Aaron is the light, the love, the soul and the inspiration to everyone in our family.

As the first born, Aaron’s birth on October 17th was one of the most anticipated days of my life, as it was with every member of our family.  Long before cell phones and use of personal emails, I still recall the updates by landline telephone, with updatesbeing share with one individual and then the information beingcascaded down throughout the family.  Aaron’s arrival was nothing less than precious and memorable event and for everyone who knows Aaron, the entire month of October is dedicated as Aaron’s Birthday month.  Nothing has changed.  I am also blessed with the privilege of being Aaron’s Godfather, this is an honor bestowed upon me that only I can cherish and hold dear to my heart.

Many of the details from October 17th have now faded, but I remember as if it was yesterday when my brother and sister-in-law told me they named their first born “Aaron”.  It was in the same breath they said the name Aaron means, “A Gift from God”.  To this very day, every time I hear Aaron’s name mentioned, the “Gift from God” reference sweeps through my head.

Of everyone in our family and extended family, I believe Aaron and I have much more in common than anyone realizes or thought much about.  Aaron and I both have characteristics that don’t quite fit into society, and it is Aaron, and only Aaron, who has taught me to be a better person and to accept life as it is God’s plan.  Aaron has taught me to be confident in my own skin and to not let the whispers, the comments, and the looks from others determine my happiness or well-being.  I am a gay man and have always thought I was the square peg trying to fit into a round hole, it’s never been easy being gay and at times, it’s been extremely difficult and painful.  But it is Aaron who has taught me to rise above the behaviors of others and be true to myself and cherish life and the love of others who care unconditionally.  Aaron loves everyone unconditionally and expects nothing in return.  Aaron embraces each day, every event, and each milestone with an infectious smile and a contagious level of enthusiasm!  Aaron has taught me to notfocus on things that I cannot change but to embrace and cherish the many blessings in my life.  Aaron’s wisdom, unconditional love and zest for life is something many of us may take for granted, but it is a lesson we should strive for each and everyday.

Aaron is a very special young man and the lessons I’ve learned from him can never be taught in a school or through a book.  Our parents have taught us to love and accept everyone’s differences but when you’re the different one, those lessons take on a whole different meaning.  Aaron’s unconditional love for me and my husband come from his heart and from his love of family, and it is something that will always be cherished.  As you know, when I hear Aaron’s name, I always remember he’s “A Gift from God”. Aaron is a blessing and my life is a better place for being his Uncle.    

Thank you Uncle Kent for sharing your heart with us.     

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Giving Thanks

This week’s story comes from Matt, Aaron’s first sibling. Thank you Matt for an inspiring story and sharing such a huge piece of Aaron’s life.

Thanksgiving is a special time of year for all of us. Being thankful for things like family, friends, health, and companionship. Having way too much turkey and pumpkin pie. Trampling each other to death at Wal-Mart to get the last fidget spinner. While we can expect all of these every year, the Thanksgiving holiday encompasses something a little larger and a little deeper for both myself and my family. 

Aaron is oftentimes the glue that holds our family together. Regardless of what is going on in our lives, or whatever hardships and challenging experiences we might be going through, the one constant every holiday in our house is that Aaron will be there to make us laugh, smile, and help us realize how lucky we are as a family to have one another and have each other’s support. And for that, I am very thankful. However, there is also something else that I am incredibly thankful for that is worth mentioning during this time of year.

I believe Aaron is a product of his environment. The reason he is such a positive part of all of our lives, is because he has so many positive people in his life. It is difficult to put into words how lucky he is to have such a loving and compassionate family. It starts with my parents who have sacrificed and have given so much to ensure that Aaron’s quality of life is as good as it can possibly get. It extends to my sisters who can, and do, seamlessly step in at a moment’s notice and provide the same level of love and comfort. It extends to family friends who also provide the highest level of warmth and endearment that anyone could ask. The number of family friends we have who go out of their way to make Aaron feel important by taking him to lunch, FaceTiming with him, and calling him on his birthday is almost inconceivable. I recently told somebody that we could not ask for a better group of people for Aaron to be surrounded by, and I really do believe that and for that, we are all tremendously grateful. 

To all those people who have selflessly given part of their life to help, mentor, and spend time with Aaron–I can’t say thank you enough. You know who you are. 

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

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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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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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Thanksgiving

GRATITUDE.

A feeling so many of us become overfilled with on this special Thanksgiving Day. Gratitude is not just the word we see thrown all over social media, it is the feeling we experience when we’re connected with love.

Today and everyday is Thanksgiving in Aaron’s heart. He does not necessarily express it with words and catchy phrases, he lives in it with every fiber of his beautiful being.

As long as I have known Aaron (my whole life) he has been an extremely picky eater. He sticks to what he likes and that is a cheeseburger (well done with ketchup only) and fries. So, needless to say, he does not indulge in mom’s extraordinary feast every year on the 4th Thursday of November.

However, to feel “a part of”, he will eat a minuscule piece of turkey doused in ketchup. The piece is more often than not the size of his pinky finger nail. He definitely does this with much hesitation while we all sit at the table chanting “Aaron versus food.” He smiles with excitement let’s out his famous “mang” and throws his arms up in celebration (often while pretending to gag).

While his commitment to feeling a part of is ever so inspiring, I am amazed by his ability to be thankful not only on this day but everyday.

He recognizes on a daily basis all that is to be thankful for in his world. His gratitude is not found through material objects he has acquired, rather it is found in the connection he finds in his relationships. For example, his family, during the holiday season he avoids judgment and criticism by embracing love and acceptance.

A family tradition in our household is to go around the table and share what brings us gratitude. Every single year Aaron says the same thing, “the whole entire 6 of us.” Not the food on the table, the new iPad case, nor the new shampoo he was told not to get. He focuses on his family and friends who are near and far. He expresses interest in what others are doing, simply because he cares. He is not asking to make conversation, however he is asking because he genuinely cares to know if everyone is feeling as much love as he is in that moment. The appreciation for those relationships is infectious and certainly has a ripple effect on the rest of us.

Happy Thanksgiving from me to you!

May your bellies be as full of gratitude as they are good food.

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

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

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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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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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