Sully the Raccoon Hosts a Book Give Away!

by jphilo | Aug 26, 2020 | Advocacy, Books and Resources, Different Dream

Sully the Raccoon Hosts a Book Give Away!

Different Dream is pleased to welcome author Arielle Hobbs as today’s guest blogger. Her children’s story Sully the Raccoon was released in July. Read on to find out how the life of her son Sully gave birth to the book and how you can enter a drawing for a free copy!

In the beginning, Sully the Raccoon was written as a tool for me to help introduce Sully to the new kids in his classes each year. His classmates got a kick out of the stories I told about life with Sully, so I kept adding to them until it became the little book it is today. The main storyline and Sully’s antics in the book are based on real-life events.

Sully did wear a raccoon costume for many years–and sometimes still does.
He did sneak out of the house in the middle of the night to jump on the trampoline–it was 10 degrees.
He still eats candy with the wrappers on–who has time to take the wrappers off?

To me, Sully is the most perfect gift from God; not just a gift to us, his parents, but a gift to the whole world. It was important for me to address the stigma surrounding disability that something was wrong with Sully. Regardless of how it looked on the outside, I had to learn to love Sully just the way he is. The process wasn’t as natural as with my neuro-typical kids.

Certainly, I didn’t love him any less. But for many years I fought for him to be better or different instead of just embracing the excellence that he is.

After writing this for Sully’s classmates, I recognized how retelling our story became therapeutic and affirming for our family. Writing Sully the Raccoon reminded us of all the ways Sully makes us laugh and smile.

His hugs should be a national treasure.
His smile should be plastered on every billboard.
His excitement and joy for living should be bottled and sold in pharmacies around the world.

The Sully the Raccoon book series is my way of sharing Sully with the world, but also a way to remind myself of how unbelievably perfect he is.

Thanks to Arielle’s generosity, one Different Dream winner is going to win a FREE copy of Sully the Raccoon. To enter the drawing leave a comment below about why you’d like to win the book. Be sure to leave your comment by midnight on September 10, 2020 to be entered in the drawing.

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Arielle lives in Florida with her family and enjoys the beach (almost) every day. She is mom to Jax, Sully, and Frankie. Sully was medically fragile for the first few years of his life and later on diagnosed with global apraxia, IDD, and is nonverbal. Sully is a true miracle, vibrant, healthy, and thriving. Arielle is an author and nearing the end of her masters degree in professional mental health counseling.

Author Jolene Philo

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The Real Story of Pregnancy and CMV

The real story of pregnancy and CMV needs to be told often and well. Today guest blogger Amanda Devereaux is here to tell you the story of how Cytomegalovirus (CMV) affects her family and how to avoid passing it on to an unborn child.

One of the strangest things about learning your child will have a disability is how the diagnosis seems to come out of nowhere. In general, women do everything they can to have a healthy pregnancy, and most of them expect to have a healthy baby. Interesting, considering about 1 in 33 babies in the US will be born with a birth defect. Many times we, as a society, avoid the idea of having an atypical child because we don’t want to worry expecting parents. Also, there’s often nothing a parent can do before birth to prevent the health condition in the child.

But what about the times when a condition could be prevented? The real story of pregnancy and CMV in our family illustrates how important prevention is.

Our daughter’s birth defects stemmed from a preventable infectious disease called Cytomegalovirus, or CMV. I, like most people, had little-to-no knowledge about CMV before it caused permanent damage to my daughter’s brain in utero. We found out after our 20 week ultrasound that I had caught CMV early in my second pregnancy and passed it to our unborn child.

A Common Threat

CMV is a common virus, and most people have been infected by the time they are 40. Young children are thought to be hot zones for CMV. They carry it if they catch it outside the womb, and many pregnant women who catch the virus have come into contact with it while caring for children. When the virus crosses the placenta and reaches the unborn child, it can cause permanent damage to their body and brain. Common diagnoses for these children are hearing loss, cerebral palsy, vision loss, epilepsy, and more. One in 1000 children born in the US will have a permanent birth defect or health condition due to CMV. 400 children will die each year.

Preventing CMV

Because CMV is a contagious virus that passes through direct contact with bodily fluids, it can be prevented. Vaccine work has been ongoing for decades with no vaccine yet approved. Until we can prevent CMV with a vaccine, diligent hygiene by pregnant women and women planning a pregnancy should be practiced. This starts with talking about CMV, not keeping it a secret. Prevention steps include:

Not sharing a toothbrush
Not sharing food, utensils, drinks, or straws
Never putting a pacifier in your mouth
Avoiding contact with saliva when kissing a child
Washing hands, especially after wiping a young child’s nose or drool, changing diapers, feeding a young child, or handling children’s toys

These simple prevention tips are the things I wish I had known while I was pregnant—not because we love Pippa any less, but because birth defects are a risk for any woman having a child. Without an accurate picture of a world with disabilities from pregnancy forward, we aren’t acknowledging the diversity of life or the ways we can care for our children and prevent them from undue challenges.

A Different Dream

Our daughter, Pippa, is almost 5 years old now. CMV caused her irreversible brain damage in utero. She began walking at age 2.5. She does not talk, but certainly lets us know what she is thinking in other ways. She is a happy, wonderful child and she makes us laugh every day. She likes going for walks and bike rides, and loves Daniel Tiger. Our dreams for her are different than they once were, and that is okay. We are learning to embrace this. However, we often think about what her life—and ours—might be like if we had known about CMV during my pregnancy. We have realized part of our dream is to help others avoid the struggles we have to face and to embrace a fuller picture of childbearing. We hope that someday CMV may be prevented, and one day, all pregnant women will know CMV by name. That’s why I’m sharing the real story of pregnancy and CMV in our family.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Amanda graduated with her Bachelor’s Degree in Nursing in 2007. She has worked in public health for 11 years, most recently focusing on maternal child health. Currently, she works as the Program Director for the National CMV Foundation. Amanda became passionate about eliminating congenital Cytomegalovirus (CMV) when her daughter was born affected by the virus in 2015. In 2017 Amanda and her family successfully lobbied for CMV awareness and screening legislation in Iowa. Amanda lives in Des Moines, Iowa with her husband, Paul, and 2 children Atticus and Pippa.