An interview with Emma, author of The ABCs of Kids Like Me.
Note: This interview features a person with Primary Immune Deficiency (PI). It was not written by a healthcare professional and is not meant to replace the expert care of a qualified physician. Please consult your physician with any questions you might have about your health.
I first came to know Emma when her mom, Jill, sent Baxter a book Emma had written about her immune globulin infusions for Primary Immune Deficiency. I was impressed with Emma’s grasp of her chronic disease and how well she managed it. We decided to contact Jill to find out more about her bright and talented child.
As it turned out, Emma was just about done with her second book, The ABCs of Kids Like Me. In this book, she takes each letter of the alphabet and creates a caption and picture of something that’s relevant for a child with a chronic disease. Original art and words of wisdom from a nine-year-old who has endured more pokes, prods and doctor visits than all of her peers. In the second half of the book, Emma provides blank pages and asks readers to make their own alphabet of things that help them live with a chronic disease. What began as art therapy has become a way to help others. Clearly, Emma has a gift.
The ABCs of Kids Like Me is such an uplifting and positive book that we felt it must be published and made available to other children with chronic illness. Jill and Emma agreed and copies of the book are now available at no charge from this website.
Amazing children come from amazing parents. When I first met Jill, I was struck by her passion and sense of determination. You can feel it in her presence. Knowing this about Jill, I wasn’t surprised to hear how much she wanted to be a mom and what she endured to become one. She calls Emma her miracle baby. Jill went through many attempts at in vitro fertilization over several years. Finally, after nearly giving up hope, she became pregnant with Emma!
- David Bond, Baxter Healthcare Corporation
David: Tell me about your interest in writing and drawing. You’re really a great artist. You have a nice style and great use of color. Have you ever had any lessons?
Emma: No, I just do it myself. I think I have a thing for being creative, and I started liking to doodle and went on to making pictures.
David: How did you come up with the idea for The ABCs of Kids Like Me?
Emma: I read a book about a boy living with cancer, and wanted to do one for kids like me.
David: How has your family helped you manage your PI?
Emma: They treat me normal, not weird or anything, like an alien or something! Ha!
David: Do your friends know you have an Immune Deficiency?
Emma: Yes, I did a talk one day about my disease at school. We even got to have a field trip for my whole class to come with me for one of my infusions. One of the parents at my school thought I had AIDS and my mom wanted everyone to learn exactly what I have, not AIDS.
David: Have you had a chance to talk with other kids with PI?
Emma: Yes. When we went to Washington, DC and Orlando FL with the Immune Deficiency Foundation, I met other kids like me.
David: What would you like to share with other kids and families dealing with PI?
Emma: After doing the infusions for a long time, nothing hurts anymore. You get tougher the longer you do it. And you aren’t sick all the time.
David: What is your next book going to be about?
Emma: I think it is going to be fiction about a dog.
David: Do you have any hobbies or interests besides drawing and writing?
Emma: I love sports, and playing softball.
David: Do you have any idea what you might like to do when you grow up?
Emma: Well, maybe a doctor, nurse or meteorologist.
David: You must be so proud of Emma. She is such a bright and talented child. I really like that she is interested in helping others at such a young age. At what age did she become interested in helping other kids?
Jill: Really from the time she was so very sick and we made the journey out to Duke Children’s to have a stem cell/immunology work up, she has wanted to help others. It seems that as long as she feels she is helping others, her own fears and anxieties seem diminished.
David: How did you come to find out that Emma had PI?
Jill: Emma was always sick, even from the early days. At nine months, when she first got tubes put in her ears, she had very low immune function. However, we were not told any of the levels until she was in the allergy workup, and we were trying to see when her numbers started to decline.
David: At what point did you find out that you had PI, too?
Jill: After Emma’s diagnosis and my next upper respiratory infection that would not clear up even after two rounds of antibiotics, we decided to test for deficiencies.
David: Is it sometimes difficult to explain to other people what PI is?
Jill: Yes, when Emma was younger we would just tell her friends and family that Emma didn’t have the“vitamins”in her blood like they did. However, after learning so much, we have amended that sentence to say“antibodies”in her blood like others.
David: As an illustration of Emma’s empathy, will you tell the story of how she selected the Great Dane puppy she wanted as a Christmas present?
Jill: We had been searching for a puppy and when we went to see the litter, Emma chose the dog that had a broken leg. She said it probably needed her, since she knows what it is like to be different and have medical problems.
David: What was your reaction to learning that Emma had PI? What lessons have you learned over time about caring for a child with a chronic disease?
Jeff: First, relief that we finally found out WHAT was wrong. Then it slowly sank in how serious it was. Then you just want info. Anything can be dealt with if you have all the info in a way you can understand. What I learned was two things. Someone is always worse than your kid. Emma was so sick but, we saw so many kids who had a lot tougher road. The second is that I truly believe that God only gives what you can handle. I know that Emma has a mission from God. We may not ever know who she touches, but someone is going to be inspired, someone is going to be lifted up because of Emma.
David: I know that Emma has quite an extended family. She comes from what is referred to as a“blended family”- one in which the parents are divorced and each remarry and there are step siblings and half siblings not to mention several more step grandparents and step aunts and step uncles in the mix. What are the dynamics of this blended family like?
Jeff: Well, first all the hard work is done by Emma’s mom, Jill. She is the one who has battled with all the ear infections and sore throats. Since we live 30 miles away from each other, most of the time that we see Emma is a good time. We have missed out on a lot of times because she was too sick to visit. The dynamics are really no different than with any other blended family. Everybody knows she has a PI but she doesn’t get treated differently. She is just one of 26 nieces and nephews on my side of the family. I know that she likes to be like other kids.