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been through many dark days who suddenly was faced with rather different thoughts than most of her teenage friends.
WHAT AREAS DO YOU PROVIDE CARE FOR? As her parent, the primary support that I now provide is the fact that Kristen knows that I am here for her: to help her in any way, to listen to her, to provide emotional support, to lend encouragement, and to share positive thinking.
WHAT ARE SOME CHALLENGES YOU FACE? While Kristen was in the hospital at age 15, I began searching for resources and information. What I found was…not much. MS is rare in children. I found a group of researchers in Stony Brook, New York who planned to have a conference call among parents of children under the age of eighteen who had been diagnosed with MS. I felt like I hit the jackpot! Finally, I had someone to talk to about something we all had in common…a child with MS. I couldn’t wait until the phone call! We talked about school, friends, hobbies, doctors, and anything else that we had on our minds. We shared experiences. MS was a piece of the conversation, but most importantly it was the connection that the phone call generated amongst the parents. That was powerful!
HOW DO YOU BALANCE YOUR PERSONAL NEEDS WITH THE TIME REQUIRED TO BE A CARE PARTNER? Kristen is independent. She graduated from college in the health field, and pursued a master’s degree in occupational therapy. She works full-time in a local hospital. When Kristen was first diagnosed, things were very different. Kristen had multiple symptoms at the same time which required a lengthy hospital stay, followed by a month of home health visits.
I continued my job and enlisted support from my friends and family. Juggling home life, contacts with school, and meeting the needs of a sick child were very demanding. I coped by keeping my days as routine as possible and by accepting offers of assistance.
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