3. Why did you want to make “PCD Has Nothing on Me!” a children’s book dedicated to other kids?
I want kids to see and understand how a child with chronic illness feels. They may have a friend who is unable to do something they can and, instead of not including them, they should find an alternative to ensure that their friend still feels like they belong. I hear people say a lot that kids can be so rude and mean, especially to kids with a disability or who they see as different. But, as a kid myself, I don’t agree with this. I think the problem is not knowing, not having all the facts so they do not know how to deal with something or someone that is different from their “normal.” If a kid understands how to deal and act with that kid that has a chronic illness, I know that they will be nice and do the right thing. For example, I can’t run or jump excessively because, if I do, I immediately go into extreme breathing distress and need my nebulizer and sometimes even oxygen. My friends and cousins know this. When I have play dates with them, we find games or activities we can all do together that will not compromise my lungs. But I also want kids with PCD or a chronic illness to know that I get it. They are not alone. No matter what the medical condition is, we all share the same fears, questions, doubts and insecurities. I want them to know there is hope and we can overcome this.
4. What do you want other children with PCD to get from your book?
I want other children with PCD or chronic illnesses to know they are not alone in what they are going through and feeling. I want to let them know no matter what they are going through, they should stay faithful to God, be brave and be strong. There is nothing they can’t overcome or achieve if they set their mind to it. Our challenges don’t define who we are.
5. What was your favorite part about writing “PCD Has Nothing on Me?”
I really enjoyed rereading my journals in order to put my book together. It made me happy, sad, smile, laugh – all those things. When I read them, it took me back to the time when I wrote them, and I realized that the saying “this too shall pass” is real. I also really enjoyed spending the day at the Make-A-Wish NJ castle. I have never been to Walt Disney World, and the visit to the castle was like being at Magic Kingdom. Did you know that the Disney imaginers helped design and build the castle? Yup, I learned that on my tour.
6. You recently received a letter from first lady Michelle Obama congratulating you on your accomplishments. What was that like for you?
OMG! It was mind-blowing. I was so excited. I wrote to Mrs. Michelle Obama a while ago about my book and how much I loved her because she is so stylish and seems to be a great mom. Plus, she does a lot for the kids, especially wanting them to stay healthy and in school. I really like that. But I was really down that I hadn’t heard back from her. I would always see her on TV doing things and would see her posts on Instagram and would think, “wow, really you have time for all that and not to write back to me?” LOL. She did write me back, though. It just took her some time. Receiving the letter from her made me feel so proud of myself.
7. I know that for a long time all you wanted was to feel or be “normal.” What’s your advice to other kids living with PCD who don’t feel “normal?”
Normal is whatever we choose and need it to be. Normal looks and feels different for everyone. Embrace your normal, whatever that is or looks like, because it’s what makes you unique.
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