The story of Katie
My daughter was born at home in 2012. Within six months we could tell something wasn’t quite right. Diagnosed with failure to thrive, she lost weight and had stopped growing by nine. She was hospitalized over night midway though her ninth month with jaundice, discharged semi healthy but with no answers. The next few months passed with trips to multiple specialists and the mystery thickening. Just a week shy of her first birthday, we were rushed to emergency with critically low potassium levels and received the diagnosis of Bartters Syndrome (during diagnosis, the specialists described this as the zebra amongst the horses- they had been looking for the “horses” not the zebras) on mothers day of 2013. My daughter was small, developmentally delayed and very ill indeed.
The first few weeks following her diagnosis are a blur. We were in shock, alternatively angry and sad. We couldn’t comprehend what her life would be like, how she would cope and so on. As she has got older and can communicate with us, we have been able to manage her condition far better, Facebook groups have been a blessing as they connect is with other sufferers. Between what she can tell us and their stories, we patch together a picture of what she must deal with everyday.
As much as I wish I could wave a magic wand and make my daughter better, I would never change what she has done to me. She has changed my heart and shown me how separate my own ego from the accomplishments of my children. She has taught me to leave my children in freedom to become what it is they can be, not to be attached to my idea of who they are. I look forward to seeing her grow and continue to thrive and to finding a cure for her condition.