当你见到艾米·麦考密克(Amy McCormick)和她的女儿凯莉(Kylie)时，你会立刻觉得自己好像认识她们很多年了。They both consistently greet you with warm smiles and joyful hellos, chatting about their love ofHamilton, the arts and their newly adopted rescue puppy named Autumn.
Kylie was only seven years old when she was performing in a year-round production ofAnnie, acting and dancing heavily through rehearsals and plays week after week. Kylie started experiencing foot and ankle pain so severe she couldn’t walk, and eventually told her mother she couldn’t attend rehearsals. Alarmed by Kylie’s admission, Amy took Kylie to the emergency room where she was diagnosed with an ankle sprain. A week later, they saw a podiatrist who promptly put Kylie into a cast for six weeks. Unbeknownst to them, the cast only exacerbated Kylie’s pain and her ankle and knee would continue to swell and radiate terrible pain throughout her young body.
“The podiatrist was confused and said he could no longer help,“ remarks Amy. “The next day, I took Kylie to our wonderful pediatrician who ordered blood work. Two days later, I received a phone call while I was at work. The caller ID reading our pediatrician’s name sent shivers down my spine; I literally froze, as I knew it must be bad for him to call me at work. The pediatrician went over Kylie’s tests and stated that they were all abnormally high and that Kylie needed to see a pediatric rheumatologist immediately. That was where this long, painful journey began. Kylie ended up being diagnosed with polyarticularjuvenile idiopathic arthritisat age eight and thenfibromyalgiaat age 13.”
As Kylie’s sole caretaker, Amy says, “When Kylie was first diagnosed I felt completely alone, lost and overwhelmed. I was uncertain whether or not I was making the best medical decisions for my little girl. I doubted everything and I certainly did not know any of the medical jargon that I am now so familiar with.” Using her resources, Amy worked closely with Kylie’spediatric rheumatologistandmedical team, who helped them both to become more confident in how they handle decision-making and the peaks and valleys of juvenile arthritis. She notes, “Thanks to the Arthritis Foundation, we have a wealth of resources at our disposal in handling this disease.”
She continues, “Being Kylie’s sole caretaker is the best job there is. She and I make a good team. Kylie is a great advocate for herself in school and at the doctor’s office. The biggest challenge is making every decision solo, since there can be some doubt and some occasions where I wish I had a partner to help me make big medical decisions.Communicating with other JA parentshas been the best way to help with this. I am blessed to have a wonderful support team of JA moms who I can confer with anytime I need to.”
A year ago, Kylie says, she was in complete pain and agony. “I was barely able to make it through the school day and acting rehearsals were extremely tiring and painful. A few months ago I was feeling a little bit better than I was a year ago.” However, today is a different story for Kylie, now 15 years old and a sophomore in high school. “Today, I am just dandy! I am flourishing like a pretty flower. I am able to participate in dance and varsity cheerleading at my school.”
Kylie is looking forward to a summer vacation at Hershey Park, attendingCamp CHATand the2017 National Juvenile Arthritis Conference, where she will be reunited with her best friends Jasmine, Emily and all of the other friends she has met through camps and conferences. “My favorite Arthritis Foundation event is Camp CHAT! It is a week of being constantly surrounded by people who know what you are going through and have gone through it, too, but you don’t feel pressured to talk about arthritis. You create lifelong bonds with people who always know the pain you are going through. This week is so vital to my life because it gives me stress relief from everyday life, especially the pain of arthritis.”
同样，Amy也很期待参加他们的第八届JA大会。她说:“无法用语言来解释Conference为我们家庭所做的一切。我的许多最亲密的朋友都是JA的父母。当你感到无路可走的时候，唯一能让你感觉更好的就是有一个真正理解你的朋友，因为他们也曾经历过。JA似乎没有希望，但大会给了我们希望。我们的JA家庭是我们的第二个家庭，我真的不知道如果没有他们我将会是什么样子。”Atthis year’s JA Conference, there will be a number of networking opportunities for moms and dads, including specific opportunities for those who are sole caretakers.
Beyond the summer, Kylie is looking forward to pursuing a career in forensic science and to continue volunteering with her mom in their community. This past winter, Amy and Kylie volunteered by cooking an entire meal for the families at the Ronald McDonald House. They were able to sit with patients and families after, playing games and spreading holiday cheer. It doesn’t take much to recognize the care and compassion this dynamic duo has, not only for each other, but also for the person next to them.
“My mom usually knows when I’m in pain before I know! She’s always paying close attention to me and caring enough to ask about my pain,“ says Kylie. “There are times when I don’t feel like talking and I just want to rest, but there are other times when I just need a hug and a caring voice to tell me it will be okay. My mama fills all this and more. I love you, Mom.”