Grace is an exceptional child and always has been. Yesterday she was diagnosed with Stargardt's disease, something that will change everything for her in a short amount of time. I laid in bed with her tonight, something I skip too often, and reminded her how special she is. In true 6 year old fashion she stroked my back and said "I know I'll be awesome even though my eyes don't work that great. You and dad will make me better." There are no words to describe that feeling as a mother. When there is something that you can't shield your children from it feels like you have failed in some way. I keep running back to her name, Grace.
Grace is the perfect complement to her condition and describes everything she embodies. She is strong and stoic when she needs to be. In the quiet moments that don't count to anyone but us, she is graceful and reassuring. She will climb every mountain put in front of her and meet every goal she sets for herself knowing at all times that we are behind her to give an extra push if she needs it. What I realize now is that I need to take my lead from her. Trust in her knowledge and insight; believe that she is graceful and resilient. She will teach me so much about what it means to truly live, in the only way that a 6 year old knows how to.
There is a lot in a name. I know now that we choose the right one