Ayden the Inspiration – Resilience and Determination Despite Trauma

Ayden the Inspiration – Resilience and Determination Despite Trauma

Cover story previously published in Rite Up, 2023 – Issue 2. by Kristi Shewmaker    Ayden, age 13 of Valley View, describes himself as outdoorsy. He learned to ride horses before he could walk. Every day after school, he feeds his flock of sheep that pasture next to the house his father built for the family. When his dad gets home from work, they drive across the highway to feed their horses, ponies, cows, chickens and homing pigeons. Born and raised in the country, Ayden lives with his parents Liz and Sergio and his younger sister and brother on some land they simply call home.   Ayden’s family is close-knit. His grandparents, Liz’s parents, live just across the pasture. Every Sunday, Ayden hops the fence and runs to their house where his grandma makes breakfast for everyone. After their family meal, the guys get to work doing chores around the property.
In February of 2022 while working on the farm, Ayden suffered a traumatic injury with heavy farm equipment and lost his arm. He was transported by CareFlite® to Children’s Medical Center Dallas, a Level 1 Trauma Center, where pediatric orthopedic surgeons Corey S. Gill, M.D., M.A., and Jaysson T. Brooks, M.D., performed an amputation and reconstruction of Ayden’s right arm above the elbow. “I didn’t think anything could be done to save any part of his arm,” Liz says, “but they did an amazing job, and I’m thankful for that.”

A few weeks after surgery, Ayden and his family reunited with Dr. Gill at Scottish Rite for Children Orthopedic and Sports Medicine Center in Frisco. They also met the multidisciplinary team of experts who would care for Ayden, including pediatric psychologist Emily Gale, Ph.D., prosthetist Dwight Putnam, C.P., L.P., and occupational therapist Lindsey Williams, O.T.R., C.H.T. “When you lose a limb, the family goes through a process of grief,” Dr. Gill says. “So, it’s really important for our Psychology team to work with them early on.” During his recovery, Ayden and his family toured the Prosthetics Lab at the Dallas campus to learn about the possibility of wearing a prosthetic arm and how it could be customized for him. “It was important for Ayden to know that whether he has a prosthesis or not, it does not define him,” Dr. Gill says. “He could do things with it or without it, but he was going to be great regardless.” Ayden decided to move forward with the arm. After his limb had time to heal, he would return for an evaluation with Dwight. In the meantime, Ayden began occupational therapy with Lindsey twice a week. Initially, she focused on caring for his residual limb, including massaging his scar to desensitize the limb in preparation for wearing a prosthesis. “The day I met Ayden, he was very quiet,” Lindsey says. “He was trying his best, but he didn’t yet know the potential that he had. We were just trying to get rid of his phantom limb pain, trying to cope in that way.” Phantom limb pain occurs when the brain perceives tingling and painful sensations in the limb that is no longer there. To resolve the pain, Lindsey used mirror therapy to trick his brain into thinking his right hand was there. Because Ayden lost his right arm, and he was righthanded, they also focused on dominance retraining, or training his left hand to become the dominant hand. They worked on strengthening the grip of his left hand, as well as coordination, fine motor skills and handwriting.
After the swelling subsided in Ayden’s limb, Dwight recommended a body-powered prosthetic arm. Built specifically for Ayden, the arm attaches to a prosthetic socket that fits onto his residual limb. The prosthesis is worn with a harness that loops around his left arm. The movement of his shoulder creates tension in the harness that is transferred to a cable system, which moves a terminal device in the form of a hand or a hook. Initially, Ayden chose the hand so that it would look like his fingers. The hand has a tripod grasp, meaning the first two fingers and thumb pinch together to grab objects.

For many months, Ayden worked with Lindsey on completing tasks with his left hand as well as learning how to use his prosthesis. They problem-solved daily activities, like how to get dressed, button buttons and zip zippers. In one session, he learned to tie his shoes with one hand. They also worked on two-handed tasks, like scooping ice cream, opening a sauce packet, and cutting apples and avocados.   “Ayden has grown so much,” Lindsey says. “He comes to appointments prepared with a list of things he wants to work on. Early on, he wanted to help his mom. He brought in clothes to fold and hang. He wanted to be able to take out the trash.”
After a year, Ayden decided to try the hook on the end of his prosthetic arm. He wanted to use it to feed his sheep. The pinch on a hook is stronger and can grasp heavier items. Before his injury, Ayden fed his sheep by pouring grain out of a five-gallon bucket into a trough. Lindsey taught him to use the hook to hold the handle while his left hand tilted the bucket. “Almost instantaneously after we added the hook,” Dwight says, “it has increased his abilities to do the things he used to do and contribute to his family.”

“I think he will continue to explore and find things he wants to do with his prosthesis,” Dr. Gill says. “Whether it is for things around the farm or adaptive sports, it’s our job to help him succeed in whatever he wants to do, and I think he will.”   Now, Lindsey is preparing Ayden for high school. She is teaching him one-handed typing using a Dvorak keyboard, which locates the important letters directly under your hand. They just put new stickers on the keys. “Lindsey has really been a blessing to us,” Liz says.   The best part of his care journey, Ayden says, has been getting help from Lindsey. “I’ve learned that I can still do everything the same,” he says. Liz adds that Ayden says he wants to be Dwight, and later in his life, he wants to build prosthetic limbs.
 “At Scottish Rite, they care more about the kids than anything else,” Sergio says. “They actually take care of you. They don’t care if you’re Hispanic, White, Black — whatever color you are — they treat everybody the same.”   In a recent session, Ayden and Lindsey played Jenga®. Ayden grasped a block with his hook. As he wiggled it, it looked like the tower might fall. “But, he got it out,” Lindsey says, “and when it didn’t fall, he had the biggest smile on his face.”

“Nothing is off the table for Ayden,” she says. “The injury was so traumatic for him. It could’ve defeated him, but he has just soared.”

“We can’t thank everyone at Scottish Rite enough,” Liz says. “Something that has been horrible and tragic is turning out to be something wonderful and positive for our child.”

Read the full issue.

American Society of Hand Therapists – Prosthetics Series: Pediatric Upper Extremity Prosthetics

American Society of Hand Therapists – Prosthetics Series: Pediatric Upper Extremity Prosthetics

On this episode, we are joined by Dwight Putnam, a certified prosthetist who works at a pediatric hospital in Texas. He brings a unique perspective to his job as a prosthetist as he previously worked as a professional sculptor. In his job, Dwight works with kids born with congenital hand differences and he builds terminal devices that allow them to participate in the activities that are meaningful to them.

Listen to the podcast.

Limb Loss and Limb Differences: Terms You Need to Know

Limb Loss and Limb Differences: Terms You Need to Know

There are many different words that are used to describe limb loss and limb differences. These medical terms allow patients and their families to effectively communicate with their health care provider. This glossary of words and phrases will help you learn some of the terms used to describe limb differences and limb loss. 

Acquired amputation: The surgical removal of a limb(s) due to complications associated with disease or trauma.

Alignment: The position of the prosthetic socket in relation to the foot and knee.

Amputation: The surgical removal of all or part of a limb due to disease or injury.

Atrophy: A wasting away of a body part, or the decrease in size of a normally developed extremity or organ, due to a decrease in function and/or use.  After amputation, for example, some of the muscles in the remaining (residual) limb often atrophy over time since they are not being used as actively as before. 

Bilateral: Occurring on both sides, as in loss of both arms or both legs.

Check or test socket: A temporary socket, often transparent, made over the plaster model to aid in obtaining proper fit and function of the prosthesis.

Congenital limb deficiency: An absent, shortened or abnormal limb present at birth.

Custom fit: Fitting an individual with a device that is made from a scan or cast of the individual’s unique anatomy and fabricated according to the needs of that individual.

Extremity: A limb of the body, as in upper or lower extremity.

Gait: Referring to the manner or style of walking.

Gait training: Part of ambulatory rehabilitation, or learning how to walk, with your prosthesis or prostheses.

Lower extremity (LE): Relating to the leg.

Nylon sheath: A shear nylon interface worn close to the skin on the residual limb to reduce friction and to help wick away perspiration from the surface of the skin.

Orthosis: A external device that is used to protect, support or improve function of parts of the body that move, i.e., braces, splints, slings, etc. It can include anything from an arch support to a spinal orthosis. Orthoses is plural.  

Orthotics: The profession of providing devices to support and straighten the body (orthoses).

Orthotist: A skilled professional who designs, fabricates, fits and maintains orthotic devices that are prescribed by a physician, generally as a collaboration regarding the biomechanical goals of the orthosis and the patient’s needs.

Proximal Femoral Focal Deficiency (PFFD): Proximal Femoral Focal Deficiency is a complex congenital difference in which the femur (thigh bone) is short or even mostly absent, making that leg significantly shorter than normal. PFFD includes a wide range of severity and multiple treatment options based on how big the length difference is, the child’s age and development and whether other parts of the limb or other extremities are involved.

Prosthesis/prosthetic device: An artificial limb, usually an arm or a leg, that provides a replacement for the amputated or missing limb. Prostheses is plural. Generally, the word prosthetic should be used as an adjective. If referring to an individual’s replacement artificial limb, it should be called a prosthesis not just a prosthetic.

Prosthetics: The profession of providing those with limb loss or with a limb difference (congenital anomaly) a functional and/or cosmetic restoration of missing or underdeveloped human parts.

Prosthetist: A person involved in the science and art of prosthetics; one who designs and fits artificial limbs.

Pylon: A structural part, usually a metal alloy or composite tube, that provides a relatively light weight support structure between other components of the prosthesis such as between the socket or knee unit and the foot.

Residual limb: The portion of the arm or leg remaining after an amputation, sometimes referred to as a stump or residuum.

Revision: Surgical modification of the residual limb.

Socket: Part of the prosthesis that fits around the residual limb.

Symes: a type of surgery for amputation through the ankle joint, generally retaining the heel pad so that the residual limb can tolerate more loading through that area.

Upper extremity (UE): Relating to the arm.

Van Nes (Rotationplasty): Rotationplasty is a surgical reconstruction occasionally indicated for bone tumors near the knee or for PFFD.  There are many variations of this surgery, but in general the limb is shortened, and the anatomical ankle and foot are moved up to about knee level and rotated around so the heel faces forward.  Once healed the person with a rotationplasty can eventually be fitted with a “below knee” prosthetic leg where the foot rests inside a custom socket and the rotated ankle is protected with metal joints and a thigh cuff.   The ankle then controls the prosthesis much like a knee but with slightly less overall range of motion.  

Share Your Story: Chief Growing Officer

Share Your Story: Chief Growing Officer

It’s Limb Loss and Limb Difference Awareness Month, and we want to highlight our patient Isa, who also happens to be the 2022 Gerber baby! Learn more about her journey below.

Blog written by Isa’a parents, John and Meredith. 

What prompted seeking medical attention?
During our 20-week ultrasound, we learned that Isa would be born with a limb difference. We began educating ourselves on the resources available, and when she was born, we met with our local children’s hospital to discuss initial treatment options. We were fortunate to be able to seek out further treatment recommendations from experts in lower limb differences.

How did you learn about the Scottish Rite for Children?
During our initial consultation at our local children’s hospital, they directed us to Scottish Rite and assured us that the providers who would care for her are truly experts in their field. After looking online and reading about treatment options available and testimonials from children and families, we asked to schedule an initial appointment. 

Can you describe Isa’s treatment journey?
We first met Dr. Tony Herring and Dr. David Podeszwa on May 24, 2022. This was an incredible visit and ultimately what helped us to decide that Scottish Rite was where we wanted Isa to get her care. 

Both Dr. Podeszwa’s and Dr. Herring’s teams met with us together. They noted that this doesn’t typically happen, but they wanted us to be able to meet with both teams on the same day. Everyone present was so kind. Dr. Podeszwa started by reviewing Isa’s images (previous MRI from another facility) and discussing treatment options as she got older. Dr. Herring followed and discussed the amputation process for her right foot. He showed videos of children with similar limb differences doing things like walking, running and even slam-dunking a basketball! Seeing these videos and hearing about the successes of other children with similar conditions helped us to feel more confident in the treatment plan for her.

One of the unique opportunities that Scottish Rite provides is peer support. We were matched with another child and family who had a similar limb difference and had been through the amputation and prosthetic journey. Being able to speak with another child and family, again, helped us to feel confident in the treatment plan and hopeful for all the things Isa will be able to do in the future.

After that, we had an additional follow-up visit with Dr. Herring, and then on January 19, 2023 Isa had a Syme amputation of her right foot. The hospital stay helped to prepare us for taking care of her and setting her up for a successful recovery. We cannot thank our nurses, physical therapists, child life and other support staff enough during our time in the hospital! Isa was so loved by everyone, and we felt the support from everyone around us. The hospital stay was short, and on January 21, we started our journey back to Oklahoma.

After the surgery, we had several contacts with Martha, the nurse who works with Dr. Herring, and with Rosie in Child Life. They were instrumental in helping us with questions that arose post-surgery. It was only a few short weeks and then we were back at Scottish Rite following up with Dr. Herring!

At her appointment on February 13, she was cleared to meet with prosthetics to get the first casting for her prosthetic leg. We met with Director of Prosthetics Don Cummings two separate times before we returned on March 21 for her final fitting and physical therapy. Though the initial sessions of physical therapy were challenging, by the third day, Isa was standing and taking supported steps with her new prosthesis! Brenda H. and her team were amazing at making Isa feel comfortable, so she could take those amazing first steps. Child Life specialist Rosie, also visited with us and gifted Isa a stuffed cat, who has an amputation like hers. We spent three days with Don and Brenda who worked to adjust Isa’s prosthetic to the perfect fit. We are so grateful for the education and guidance they provided us. We even had time for a call to our oldest daughter, Tempe, who told us what color she felt Isa would like for the outside of her prosthesis: purple with sparkles. Don said he would work to make Tempe’s vision come true.

We will be forever grateful for the experiences we have had with the teams at Scottish Rite. This has been and will continue to be an amazing journey. 

How would you describe your overall experience at Scottish Rite?
The experience has been amazing. From our first contact to schedule the appointment with Dr. Herring and Dr. Podeszwa to our most recent visit with Don Cummings and Brenda H., we have always felt that everyone at Scottish Rite is there because they love the work they do each day. Each person you meet greets you with a smile and engages you in conversation. Everyone is helpful and always works to provide resources or direct you to the correct person for your needs. The facility is unlike anything else that we have ever experienced and truly works to give children back their childhood.

What are some things Isa likes to do?
Isa loves ANYTHING that her big sister does. She follows her around and always wants to play. Isa loves to play with Duplos and Fisher-Price® Little People. She loves Sesame Street®, especially Elmo® and Cookie Monster®. She loves being outdoors and going for walks. Isa loves being helpful. She will bring you your shoes if it is time to leave. 

She wants to help brush her teeth, and she puts away her toys when it is time to clean up. She loves to talk to others and show them things. Isa has a large vocabulary already and gains new words every day! Also, she loves to crawl and climb. Once she gets comfortable with her prosthesis, it is going to be hard keeping up with her!

 

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With Thanks for a Happy Place

With Thanks for a Happy Place

Published in Rite Up, 2023 – Issue 1. 

Troy Ratliff has supported Scottish Rite for Children for more than 20 years. He connected with the organization through his participation in the San Angelo Sporting Clay Shoot, an event that was established in 1998 to raise funds for patient care. “I just wanted to win a shotgun,” Troy says. “When Keegan was born, I realized what the shoot was all about.”

Troy and his wife, Wendy, live in Mason, Texas, and have three children — Jonnah, age 21; Keegan, age 15; and Cooper, age 13. Wendy was a teacher and a coach for 25 years and now owns Hilltop Tennis, where she gives private lessons to children. Troy is an entrepreneur in the electrical field and owns three companies, including Ratliff Electric, TW Compressor Company and Dynamo Rentals, a generator rental business.

When Wendy was pregnant with Keegan, they discovered at her 4D ultrasound appointment that something was wrong with his leg. An orthopedic surgeon in Midland diagnosed Keegan with fibular hemimelia, a condition in which the fibular bone had stopped growing in his left leg. “Keegan didn’t have a foot,” Wendy says. “It was like a sack. You could feel where the toes had tried to develop, but they never did.”

“We were pretty much devastated,” Troy says. They were referred to Scottish Rite for Children, and when Keegan was 2 months old, they traveled to Dallas for his first appointment. “We took Keegan to the waiting room and saw wagons with kids with no arms and no legs,” Troy says. “When we got into the room, we broke down crying.”

“Scottish Rite is very touching,” Wendy says. “They cater to the kids, and no matter what their disability, they all seem happy. It was eye-opening, a wake-up call.”

The Ratliffs met J. A. “Tony” Herring, M.D., now chief of staff emeritus, who evaluated Keegan and explained the treatment options. They could reconstruct his leg, but that would require many surgeries throughout his childhood with no guarantee of how functional his leg would be. The other option was to amputate.

Through Scottish Rite’s Peer Support Program, the Ratliffs met a patient from El Paso who had a prosthetic leg. “Looking back, the kid explaining how normal of a life he had was the turning point for me,” Wendy says. “It was a breath of fresh air, like everything was going to be okay.” The Ratliffs went home and made the decision to amputate. “I felt like amputating would allow Keegan to be a kid,” Wendy says.

When Keegan was 10 months old, Dr. Herring performed the amputation. On Keegan’s first birthday, he got his first prosthetic leg complete with his favorite superhero. “He got his Batman® leg,” Wendy says, “and within 30 minutes, he was walking on it.”

Keegan still likes Batman® today. “I was Bruce Lee for my eighth grade graduation,” he says. Keegan is an all-around athlete. He plays football, tennis and basketball, but his favorite sport is tennis. He plays for his high school team and in tournaments through Universal Tennis, an organization that connects tennis and pickleball players through level-based play. At an adaptive tournament in Dallas, he won the junior level and the consolation in doubles.

Throughout his life, Keegan has received care from Dr. Herring and prosthetist Don Cummings, director of prosthetics. “For the first two years of Keegan’s life, I didn’t know Don had two prosthetic legs,” Wendy says.

Cummings lost his legs below the knees to bacterial meningitis when he was a freshman in college. “One day, we were building Keegan’s leg, and Don was trying to explain legs to us,” Wendy says. “He goes, ‘let me show you this one,’ and he throws up one of his legs. Then he says, ‘or my other one.’ It’s so cool that he has prosthetic legs because he knows how it feels. He can truly relate to Keegan.”

Keegan recalls having had 16 or 17 prosthetic legs as he has grown. Depending on the activity, he has worn different types. When he ran track and cross country, he wore a running blade designed primarily for sprinting. Now, he mostly wears a hybrid blade that has similar properties but includes a foot plate and foot shell, which allows him to wear various shoes. “With the foot shell, he was able to quarterback better,” Wendy says, “and he can cut better in football and tennis.” On his next leg, Keegan will display his school logo. “Anything you need, they’ll do it for you,” Keegan says.

“The people at Scottish Rite are pretty special,” Wendy says. “Dr. Herring is always smiling. You can’t help but be happy around him. He always wants to see Keegan run. Every time he sees him, he says, ‘get out there and run for me.’”

“Seeing what Scottish Rite has done for Keegan,” Troy says, “I’m just fortunate enough to have the opportunity to give, and my favorite thing is to donate to Scottish Rite.” Not only does Troy continue to participate in the San Angelo Sporting Clay Shoot, but he also supports the event, as well as supporting the West Texas Golf Classic in Lubbock and Emi’s Color Shoot in Amarillo. All three events raise funds for patient care at Scottish Rite. Whether giving individually or through Troy’s companies, the Ratliff family has contributed more than $550,000.

We are grateful for the Ratliffs’ generosity and the many ways that they have supported and promoted Scottish Rite for Children over the years,” says Stephanie Brigger, Vice President of Development. “It is wonderful to witness Keegan’s success and to know that the Ratliffs’ kindness will help other children succeed as well.”

Scottish Rite has been life-changing,” Wendy says.

It’s a safe zone for kids to be themselves and learn that they’re not alone,” Keegan says.

When you walk in the door, you don’t have a condition,” Troy says. “It’s just happy.”

Read the full issue.

Share Your Story: Expecting the Unexpected

Share Your Story: Expecting the Unexpected

Becoming a first-time parent is such a wild ride of emotions. When I found out I was expecting a baby, my reactions ranged from “HOORAY!” to “Oh my!” in a matter of seconds. Right away I felt an intense responsibility for this tiny little baby that I couldn’t wait to hold one day. Besides having gestational diabetes, I had a normal pregnancy. As the days to my due date started to quickly approach, I had this gut feeling that something about this baby was going to be different. Because of gestational diabetes, I had more than the normal amount of

sonograms. During each one, we were told by the technician that, “Things look great!”. Yet for some reason, I couldn’t shake the feeling that something felt off. My husband tried to reassure me, but I felt like my mother’s intuition was already kicking in. I remember after a particularly difficult evening in which I had been craving carbs and a cinnamon roll the size of my face, my husband and I went to dinner at an all you can eat salad bar instead. Previously, we had been saying things like, “As long as he has all of his fingers and toes, we will be happy.” Then in a moment of inspiration, I’m sure as an attempt to cheer me up, my husband said, “Honestly, even without all the fingers and toes, we will be happy.” Then the time came for us to deliver. It was finally time to meet this little baby boy who was about to blow away all our expectations about being parents – in the best way possible.

March 15, 2013, our sweet Miles was born! He came in at a whopping 9 pounds, 15 ounces and was 22 inches long! The first thing I remember hearing was his precious little cry. The second thing I heard was the doctor say, “Hold on Mom, we need to check something real fast.” As she took Miles back to the warmer, I looked at my husband’s face. He was pale white and visibly shaken. His next words, with tears in his eyes, would throw all our expectations out the window. “Miles doesn’t have his left hand,” he whispered to me. I remember looking at him with tears in my own eyes saying, “That was it. I knew something was different, and that was it.”

People talk a lot about “what to expect when you’re expecting,” but not a lot about “what to expect when you hear the unexpected.” Those first few days were such a blur between extreme love and excitement for our beautiful baby boy, mixed with fear about sending our son out into a broken and sometimes harsh world. The initial diagnosis left me feeling immense guilt. As though my body, which was supposed to protect our baby during development, had permanently harmed him. Oh, I wish I could tell that emotional new mom what was in store for her in the months and years to come. If you are new to your parenthood journey, buckle up, it is a wild and beautiful ride!

When Miles was just a few months old, we went to Scottish Rite for Children for his first appointment and diagnosis. He was diagnosed with symbrachydactyly. This diagnosis meant a few things:

1. There was no one to blame. Sometimes it just happens, and doctors don’t really know why.

2. Hearing his diagnosis assured our hearts that he was “fearfully and wonderfully made,” and Miles’s arm is not a weakness, it is proof of how strong he is, that even as a tiny embryo, he kept on fighting to keep growing.

I knew that it was our job as parents to remind him of those things. He is not broken or incomplete in our eyes. The staff at Scottish Rite was so generous with their time and gave us so many book recommendations and encouragement. I remember leaving Scottish Rite feeling as if I had received a big breath of fresh air. We were now part of a community that I never knew existed before, and I was so thankful for it. Getting to attend things like Hand Camp in 2022 was such a beautiful thing because, for one of the first times in his life, he walked into a room and wasn’t seen as different. He was able to connect to those kids in a way I never will be able to, and I am forever grateful for that community.

One of the earliest things we noticed about Miles is that he is an extrovert.

I could give countless examples of how he would try to befriend every single person on the playground or anywhere he found himself. For an entire year in preschool, he was determined to invite the classroom “tough kid” to play with him. It took Miles an entire year of trying, but the next year when that little boy found out Miles was in his new class, too, he told his mom that Miles was the first kid he wanted to invite to his birthday party. You see, Miles started to teach us something from the beginning. He didn’t understand the concept of “I can’t.” He didn’t give himself excuses, and neither did we. He just worked hard and would find a way to do it his way, even if it was unconventional or looked different. Instead of seeing a world full of strangers, he sees future friends. He continues to teach us how we all should love others.

As a parent, I worried about Miles starting school. It is an emotional day for many parents, but I remember how nervous I was to share my boy with the world. Don’t get me wrong, Miles always loved preschool, sports and group activities, but for some reason, this step seemed so big and scary to me. However, I quickly realized that I may be nervous to share Miles with the world, but maybe Miles is just what the world needs more of. I got confirmation of this after Miles had been in school for a few weeks and I asked if he was getting a lot of questions about his arm, and this was his response: “This boy on the playground said we couldn’t play because of my arm. So, I told him, ‘You can’t help how you are born, but you can help if you are kind.’” One of our family mottos is, “Be silly. Be honest. Be kind.” His response made me tear up with pride because at that moment he was living that out.

There was only one time that Miles ever asked for help with something due to his lucky fin. My husband has a 3D printer and Miles had just received his “big kid bike.” He was having a tough time balancing with the training wheels, so he asked my husband to print him an arm to help him adjust. He did. When Miles’ school found out about it, they asked my husband to come and speak to all the kindergarten class about how he was able to identify a problem and fix it. When my husband addressed this room full of 125+ kindergarteners, he started off by saying, “What is something that you notice about Miles?” He was using this as a segue to talk about his arm. But in a room full of kids, they mentioned: “He is funny!”, “He teaches us things sometimes!”, “He plays with us on the playground.”, etc. Not a single kid mentioned his arm. I’m not naive enough to think that will always be the case, but in those sweet kids, I saw Miles was teaching them how not to fear difference but embrace it. We ended up taking off his training wheels, and without the arm, he took off riding on this first try!

We have never treated Miles differently. We have encouraged him and his younger siblings to go out in this world and do great things. You are never too young to make a difference. We remind Miles often that when he walks into a room, people are going to notice him, and we hope he uses that attention for good. Initially, he may be noticed for his limb difference, but I hope he leaves them remembering him as a leader, as a kind friend and as an includer of others. Often, people are going to point out the things that may make life harder. Instead, we hope we teach our kids to use those things to change people’s minds. Showing the world that it is beautifully different, and it needs each one of us.

Miles is now finishing up his 4th grade year! Ten years have passed since we held that tiny little newborn, not knowing the lessons he would teach us. He has taught us how to see the world differently and how to love others better. He now spends his days loving school, doing robotics with friends, surfing, doing Ninja Warrior, rock climbing, drawing and cooking!

For the past six years, Miles has done a birthday fundraiser. This year, he helped write a family cookbook (look up Inclusive Kitchen on Barnes & Noble’s website!), along with designing a “Love Your Neighbor” shirt in his handwriting, and he sold custom drawings to raise money for inclusive playground equipment at his elementary school! He wanted to make sure that every kid in the school felt loved, like they belong and had the chance to play! He, along with his brother and sister, have raised $5,539.25 (and counting) so far!

There are going to be many people that will doubt you in life, but when I told Miles I was doing this story he said, “People are going to doubt you. They are going to try to tell you how you can’t do something. Don’t believe them. Believe in yourself. I like to tell those people, ‘Oh yeah, watch me!’ You can and will do great things in this life. Whether you have glasses, are a wheelchair user, or in my case, have a limb difference, that is what makes the world so beautifully unique!”

DO YOU HAVE A STORY? WE WANT TO HEAR IT! SHARE YOUR STORY WITH US.