Tuesday, July 7, 2015

Why My Daughter is My Heroine

What if you had the chief of pediatric rheumatology at a well renowned hospital in the Midwest, look you right in the eye after four visits and tell you that even though your child had the positive genetic marker and the family history for an autoimmune disorder called ankylosing spondylitis that wasn't what she had? What if you had been told your child was, "failing to thrive" at age 14 and you watched as her weight plummeted to under 90 pounds, feeling helpless and unable to help her? The child I am talking about is my daughter, Lauren.  When the chief of rheumatology looked at me that day and told me basically that nothing was wrong with my child, I knew that something had to change immediately. I needed to stand up and speak up. I was not going to give up, it's just not in my nature. I have advocated tirelessly for Dominic since he was diagnosed with Autism at age 2 1/2 and with Lauren it was no different. At Lauren's next doctor's appointment, I told the doctor that I was working closely with here locally, "we are done with the director of pediatric rheumatology, you need to send us somewhere else." We were sent to a pediatric rheumatologist located at another hospital over an hour way. At the first visit, he agreed with my "diagnosis" of ankylosing spondylitis and put Lauren on a self-injectable medication, that gave my daughter her quality of life back. She has been able to lead a normal teenage life and participated in eight seasons of cheerleading in high school as well as being inducted into the National Honor Society. Lauren missed many days of eighth and ninth grade because of doctor's appointments, but she never missed a day of school because of how her autoimmune disorder made her feel. When Lauren turned 18 last year, she could have said, "okay, I'm an adult now and I don't have to listen to my mom!" Thank goodness that was not the case. She and I work together as a "team" to keep track of her doctor's appointments and medication refills, even as she gets ready to start her sophomore year of college next month. Lauren and I have always been close, but guiding and assisting her through the challenges of being a teenager with a serious autoimmune disorder has brought our relationship to a different level. According to the Merriam Webster dictionary, a heroine is, "a woman admired or idealized for her courage, outstanding achievements, or noble qualities."


To me, that woman is my daughter, Lauren.

2 comments:

  1. You are such a pro-active mother for your children, and are passing these values on to them. You would be on my list for a heroine. Love, Auntie

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  2. Sending so much love, appreciation, and admiration to both of you!!

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