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First I cry and then I go online to this site and vent. I also talk to family and friends about things. I also think about how much worse it could be.
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I started a weekly yoga class about a month before [my child] got sick. That has been so helpful to me. It's 75 minutes of quiet centered time each week and it has really helped me put this journey in perspective. - On the other end of the spectrum, sometimes when I'm alone in the car I play some music I really like with the volume up and I sing along.
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When I'm feeling down about pieces of [my daughter’s] childhood being taken away, I first allow myself to be sad and blue for however long I need. Then I decide to be thankful for all she is able to do, and for the health she has. [My daughter] and I have been bringing things
(teddy bears, art projects, etc.) to the hospital where our rheumy practices for kids who have to be in the hospital. This helps both of us put things into perspective.
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In the beginning I told myself that I wasn't going to let this disease beat us and assigned myself the job of helping to find a cure… This discussion board and the support of everyone in the JM community is where I turn to remind myself that our family is not alone.
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Turning to God, friends, talking to others experiencing JDM and having a sense of humor.
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