After Waverly was diagnosed, Matt and I were hyper aware of changes in her. We were constantly looking for regression. We both remember vividly when Waverly started picking up her spoon and putting the handle into her food instead of the bowl of the spoon. We would turn it over in her hands and after a few dunks in her yogurt, it was upside down once again. It was a small change, but it signified so much more to come.
Oliver has started to put the wrong end of the spoon in his food. This small behavior has produced so much emotion for me. I feel like he has crested the developmental hill and is beginning the awful journey downward. All of the gains we worked so hard to master are slowly going to begin to slip away.
I can see it in his eyes. He looks lost and confused at times. His eyes well up with tears and his lips pout out in a huff. He isn't sure why things are changing, but he is well aware that things are different. He has been acting out the past few weeks - very unlike Oliver. He is pushing and throwing himself to the floor in protest. I truly believe he is scared and unable to understand what is happening to him.
Waverly has been crying for weeks. Wandering in circles, pacing the hallways and crying. We have been through this stage before with her and I assure you it does not get easy, only more painful. Watching your beautiful little girl so confused with life around her that she weeps most of the day. We have a difficult time soothing her. She awakes each morning in tears.
I try to stay positive and enjoy these little things each day, but tonight a wave of sadness has knocked me over and I am being washed away. My heart aches and I am unable to save them. Sometimes I simply need to sit here in my sadness and allow it to impact me. To fight for a cure for Sanfilippo. To love Waverly & Oliver better tomorrow. To take each moment I have with them to heart and appreciate these glorious little lives I have been so blessed by.