Monday, January 16, 2012

Your Child Has a Chronic Illness: A Mother's Perspective

While I have played around with the idea of starting a blog since I received my RA diagnosis in August, my mom was truly the inspiration for sitting down to begin this one. Her belief in me is unwavering, and the pride she feels for me helps me to be proud of myself. I always knew I wanted her perspective at some point. Today, as part of my continuing dedication to the topic of living with chronic pain, I want to give you my mom's perspective. Thank you so much for the time you spent writing this, Momma.

"It’s taken me a bit to actually begin this since I have several feelings stirring around in regards to Kathryn’s diagnosis, rheumatoid arthritis. 

First off, anger.  Why her?  Why us?  We did everything right early on to ensure Kathryn’s health and well-being.  Where does this disease come from?  Why must it be so difficult and painful for her?  She is a bright, talented, and incredibly kind-hearted person with a gentle and deep spirit.  She does not deserve this sort of health sentence.  Yep, I am pissed!

Along with that one…guilt.  Did I or we do something wrong early on in Kathryn’s infancy? Should it be me with this disease and not her or her younger sister?  Did I miss something in the pregnancy that I could have prevented or better understood?  And this emotion invariably leads to…

Sadness.  What a crappy disease.  Why is it so stubborn and resistant to her efforts to control it?  Must she be struck with this now as a young woman with plenty on her plate and so much to look forward to?  And this one spills over into…

Gratitude and appreciation:  How can I help?  How can I boost Kathryn and her boyfriend’s moods and keep this positive? How do I assert myself at the right times and pull back to respect Kathryn’s feelings and judgments?  After all, this is HER disease and HER body and HER life.  I feel as if I don’t know much right now, but I am absolutely certain that I love her deeply and dearly, and I do NOT want to make matters worse for her in any way.  I feel gratitude that she is here in my life now and that I can be of some moral and financial and physical support.  I feel deep appreciation for her spirit, her determination and sense of humor, for her intelligence and moral compass. And, as with all things related to Kathryn’s world, she persues this challenge with her unique curiosity and problem-solving skills.  How can I possibly express enough gratitude to her boyfriend for being Kathryn’s companion and aide through very trying circumstances?

For now, I want to help, stay positive, keep searching for the best possible outcomes, and love Kathryn up.  After all, this is what I do best. "

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