"What does she have?" It's a question that I have been asked concerning my little girl. I know I am too close to the situation, but at first/quick glance I don't think SK stands out too much in a crowd, besides the fact that she is darling, of course. Now, I would say that in the past six months I have been asked this question more often. So it seems like people are starting to notice something, so I get a variation on the question, "What does she have?"
I guess it seems like a simple enough question and in retrospect I guess there is a simple answer, but not to me. To me it's quite the complex question and I still find myself at a loss when trying to answer it. It's not that I am upset by the question (well, not anymore), it's just that it still catches me off guard. I know, I know you're thinking the answer is cerebral palsy, right? Well, that doesn't let anyone know what my girl has.
She has a Mama and Daddy that love her to pieces, she has 3 brothers that adore her. She has 4 grandparents whose faces light up when they see her and talk to her. She has cerebral palsy. She has an extended family that are crazy about her. She has a church and community that love and support her. She has a gtube. She has friends that will do just about anything for her. She has a Savior who loves her more than we can comprehend. She has seizures. She has a smile that makes the world a better place. She has an unbelievable wardrobe. She has kidney stones. She has the most beautiful brown eyes. She has the inability to walk or talk. She has an understanding of things that we may never fully know. She has a love inside her that is WAY bigger than her little 30 pound body can contain.
So you see that answer is hard for me...she doesn't just have cerebral palsy, that doesn't begin to describe my girl.
Thank you all for understanding and knowing that she is so much more than the diagnoses that the medical community/society uses to define her, sooo much more.
Romans 8:24-25 "For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what he already has? But if we hope for what we do not yet have, we wait for it patiently."