(Updated)
Hope was born with a genetic disorder called tuberous sclerosis complex. Put simply, she has benign tumors on her brain, kidneys, liver, and skin. The affects of TSC vary widely, but for Hope it has meant a tough battle to control seizures, developmental and cognitive delays, and various social and behavioral difficulties. We are very fortunate that we are not dealing with certain medical complications that can result from TSC, such as tumors growing and causing hydrocephalus and/or kidney complications. Our greatest struggles, after dealing with seizures, are her learning and social delays. There has been one issue for which we were completely unprepared: at first meeting, one is unable to tell that Hope has anything wrong. Why would that be an issue? Well, people expect her to understand, act, and interact like any other girl her age. This can bring about much frustration and misunderstanding. It is heartbreaking to see her struggle in that way. (In September 2012, we learned that one of the many tumors on Hope's kidneys had begun growing rapidly. We were relieved the biopsy confirmed it was benign, but she is now facing lifelong medication to control its growth.)
However, TSC is not what defines Hope. She is a beautiful girl (young woman!), inside and out. She loves to dance, write, and draw, and she brings so much joy and laughter into our lives. I know the Lord in ways I would not have if we had not been blessed with Hope.
As we walk the uncertain road of life with TSC, we take the not-so-good along with the wonderful and find the lessons and the joys in it all. This blog has proved to be a great place to share how we have learned to find humor in that which we cannot control, and joy where once we would have only seen pain.
