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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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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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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Through connection we can overcome the label of disability and unleash our true abilities. 

Smile

Social media can be a powerful tool. Social media can serve as a platform to share your life with the hopes of inspiring others. I was able to connect with this week’s writer, Kayla, after being touched and inspired by her posts. I selected the genius “message” tab and asked Kayla if she’d be willing to share about her son on the blog. She graciously said yes. The privilege of connecting with those who have or love someone with extra abilities continues to humble me to my core. Further proof that Through connection we can overcome the label of disability and unleash our true abilities.

Meet Jagger:

Jagger is a uniquely wonderful human being to whom I have the honor of calling my son. His ability to make you smile even when you’re having a bad day is something very special and how even though hitting milestones doesn’t come easy, he doesn’t stop trying to figure out how to do things.

He has taught our family the ability to smile even when times get tough, that there is so much beauty in the unexpected. And to be patient, things will come with time and effort.

If there is one thing people could learn from my son is, when facing adversity, never give up, and just keep smiling because things will get better!

Thank you Kayla!

You can keep up with their journey by following @kayladine on Instagram!

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

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What Counts

This week’s story is brought to you by Aaron’s Aunt Red, also known as “Red”.

Please enjoy the story:

Sometimes I think the more the heart in my chest fights and pushes against my weaknesses or blah days, the closer I am to my spiritual “what counts”  self.  I said SOMETIMES.

But glimmers of “what counts” come from my nephew Aaron at ALL TIMES. I said ALL TIMES.I know this because I am an expert! An expert at being Aunt Red hanging out with Nephew Aaron! Aaron is a glimmer, a shine, a twinkle, a light. However you put it, he is  “what counts.”

Recently, he reminded me of this:

One night, while loading 2 days worth of dirty dishes into my worn out dishwasher that makes noise on the sanitize cycle, I thought about people who I lost touch with, and tried to reconnect with …and no reply for one reason or another. Life happens but I am very popular with myself —shouldn’t everyone answer?

I felt sorry for myself. It’s genetic. I’m Irish. I was taking in my 5-minute lament. I should have jumped into that noisy dishwasher for a mental wash— and sanitize on the ‘Quit feeling sorry for yourself’ cycle.

The next day at work, a call came in on my cell that I wanted to take but couldn’t. I listened to the message from Aaron ona break: “Siiiissssay! (Pause) Siiiiiisssay! IT’S AARON! Hi. Cheese fart. How’s your day? It’s cold here. (Pause). I love you. Bye.” The sting of disconnect was gone. And we have a joke as old as the ages (me) about cheese farts.

Aaron’s message was a glimmer of “what counts” from his voice of strength, love and determination. We caught up on FaceTime soon after. My nephew Aaron’s family tells me he checks in with everyone. I’m happy to be on his list! But the timing of when he checked in with me that day was too coincidental not to believe it went from my sappy selfie lament to his happy ears. Aaron’s mother, my sister (sssiiiissaay), says, “I don’t believe in winki dinks” – it’s more than a coincidence. Aaron’s message was more than a coincidence. It was meant to be.

I believe in  “what counts.” Aaron is ALWAYS  “what counts” in this world.  Wherever you’re at, he’ll find you and pull you up or out! Aaron knows how to connect and keep all connected. What a gift! His personality, instincts, love and humor are a joy to be around!

Aaron is a seer of “what counts!”

You’ll see this when you’re around him!

By: Aunt Red

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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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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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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