The Heart of the Matter

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This book was inspired by our son who was born with a missing limb. At first we were scared and grieved what we thought was a tragedy. As we set out to learn more about the limitations of limb different people in order to best assist our son, it was quickly apparent that the only limitation was our fearful belief that limb differences created barriers that our son could never overcome.

Thanks to the limb difference community for showing us all the ways they have overcome struggles and not allowed their differences to hold them back in any way. The reality is that every person has limits and barriers but we make the choice to overcome them. This reality will be no different for our son. Subsequently, the tone of this book is to explore the topic of limb differences from a fun and cheerful perspective rather than a sad and tragic perspective. If our son has taught us anything, it is that there is nothing tragic about him. In fact, he is a really awesome kid who also happens to be missing part of his arm.

I hope parents and teachers can use this book as an educational tool to 1) help children feel comfortable exploring their natural curiosity about people who look different from them, 2) to teach them to question and interact in socially appropriate and inclusive ways, and 3) to ultimately recognize that our similarities as human beings will always be greater than our differences.

Q & A: What makes this book different?

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Q: What is different about this book compared to other children’s book on this topic?

A: A few things.

  • One main difference is the target audience. The target audience for most children’s books about limb differences is written for children who have limb differences. Let’s Explore The Missing Piece of Captain Reece targets children who have little to no understanding or exposure to people that have limb differences.
  • Another major difference is the tone of the book. Developmental research is overwhelmingly clear that children learn via play. I wanted to improve the odds of capturing children’s interest to explore an unusual topic on human differences by appealing to their playful side. What kid doesn’t like pirates and boogers? Haha.

This book may be a useful tool to encourage active bystander intervention for bullying behavior in children. Research shows that bystanders, referred to individuals who witness harmful behavior towards another person, can actually have a powerful role in interrupting or stopping harmful behavior when they feel more confident in their ability to help. One of my greatest fears upon learning that our son had a missing limb is the increased likelihood that he may be rejected and/or bullied by other children because of his differences. Since I can’t always be there to intervene during challenging social situations, I want to equip not only our son, but also the children around him, with a strategy to interrupt hurtful social behaviors he may encounter from others.

Want to Purchase a Copy?

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Link to Purchase Book

Let’s Explore The Missing Piece of Captain Reece

Join the circle for story time as children explore what happened to the pirate’s missing arm. Children will love the fun-filled pages that teach them how to politely ask questions and interact with a pirate who, although looks a bit different due to his missing arm, is just a really cool kid like everyone else.

Books can be ordered online. Additionally, the author has a limited number of autographed copies of the book for purchase. If you are interested, please contact the author directly to request a signed copy: email dr.tamararichardson@yahoo.com.

 

Behind the Scenes: Our Story

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Hello there! My name is Tamara and I started this blog to reach out to other people who have shared similar experiences to us. Here is our story:

When I was 15 weeks pregnant, we got the dreadful call that the Penta screening test indicated Reece tested positive for Down Syndrome. In order to confirm the results, we followed up with an ultrasound and amniocentesis. The ultrasound revealed Reece was missing his right arm below the elbow and had a small hole in his heart. It was going to be several days before we got genetic testing results, but the ultrasound findings were devestating. I remember sitting there at first in shock…I couldn’t breathe and felt like I had literally been hit by a truck. As soon as the doctor walked out, I broke down crying.

I never imagined having anything but a happy, healthy child. Afterall, our first child came out just fine. The world stopped in that moment as my brain became overwhelmed trying to process what it was going to mean to have a child with Down Syndrome, a missing limb, and a heart defect. The pain in my husband’s eyes was unbearable to watch as he sat there feeling helpless, overwhelmed, and incapable of knowing what to do. Fortunately, my aunt who was an RN, came with us. I have always adored this woman because we share the same sick sense of humor. But in that moment, she was a God-send when she grabbed my chin, looked me straight in the eyes and said, “I don’t know how, but we WILL get through this no matter what.” She was the strength I didn’t have in that moment and I am forever grateful.

Time started moving again. The doctor came back and said he was not only going to test for Down Syndrome, but also Fanconi Anemia, a genetic disorder that usually results in most patients developing acute myelogenous leukemia, and 90% develop bone marrow failure…among other fatal complications. I was numb by that point and it was a long, quiet ride home.

We went back several days later and found out it was not Down Syndrome. However, we were still waiting on results from the Fanconi Anemia test. In addition, the doctor said he wanted to run a test for DiGeorge Syndrome, a genetic disorder that often includes congenital heart disease, cleft palate, severe mental retardation, autoimmune complications resulting in recurrent infections, thyroid disease, and 20-30 fold increase risk of schizophrenia…among other things.

Needless to say, the emotional pain was excruciating during those weeks of not knowing whether he would live or die and I spent most of that time feeling as if I were among the living dead.

Eventually, the tests came back fine. He was born healthy and the hole in his heart had closed. We joyously celebrated that the only thing missing was part of his limb.

Now, people see him sometimes with pity in their eyes and occasionally comment on what a tragedy it is for him to only have 1 arm. I never want to minimize another person’s pain and recognize limb loss is a tragedy for some people. However, we do not exprience this as a tragedy, in part, because a missing limb PALES in comparison to the possible fatal conditions that could have been our reality.

There is nothing tragic about our son….well, except for the fact we are still sleep deprived parents who own 2 copies of the book, “Go the F*%k to Sleep” =). Mostly, we see a child who is just like other 2 year olds; little barbarian terrorists who make you want to pull your hair out one second and then melt your soul into the biggest puddle of overwhelming joy and love that only a parent can understand the next second.

Sometimes we see his physical limitations very clearly. Certainly, it is still emotionally challenging when we bump against his limitations. But this is equally true for our daughter, who has all of her limbs. It is emotionally difficult when we fail miserably in our parenting skills—which is daily for me.

Unfortunately, humans don’t get to escape the experience of pain or limitations. The recognition that every single one of us have limits and subsequently the choice to adapt to them as best we can is probably the single greatest idea that protects us from suffering when we experience the emotionaI struggles surrounding his missing limb. That, and the fact that the limb difference community has been one of the most empowering, inspiring, and supportive groups of people that we have ever known.

Thanks for sharing in my story. More to come later!