My lovely little girl is having a lot of difficulty walking once again. Ever since our vacation, her ability to stand on her own has deteriorated rapidly. As with so many things because of Sanfilippo, we are never sure if this is our new normal or if she will once again bounce back. She can no longer stand on her own - she will almost immediately try to sit, with no ability to see if there is actually a chair to land on. Her left leg is worse off - lots of toe walking and her knee is constantly bent. It looks incredibly painful.
Last week I actually leg go of her hand for a second and she took a step. I was an arm length away from her and she walked towards me. I was able to snap a quick pic. I love this picture. It shows such freedom. A friend recently said to me that watching our children lose the ability to walk is watching them lose their sense of freedom. That spoke volumes to me. So true.
I hope that I will be able to take more photos of Waverly taking a few independent steps. I hope this isn't the last time. At least I captured it. Her smile. The tilt of her head in delight as she moves towards me. Beauty. My beauty.