Just As You Are
Yesterday I got a photo from Waverly's teacher. She was so excited because Waverly, after much hand over hand prompting, rolled a truck back and forth on the floor for a few seconds. Incredibly simple action, but this is HUGE for Wavey. She doesn't play with any toys anymore, at least not appropriately. Everything goes straight into her mouth. I had to laugh last night, in the midst of tears. I was thrilled to hear that Waverly learned this small skill and I wanted to celebrate. Then I was quickly reminded that this is not something most moms of 5 year-olds get excited about. But that is what makes our little family special.
There are moments when I say "I wish you could have known her when...". I fill in the sentence with some behavior or something she used to say before the disease ravaged her little brain. Of course I wish I could take the MPS away and watch her live a healthy life. But I am beginning to fully realize the incredible beauty in who she is now.