This has been an agonizing week. I am by nature an impatient person who likes to plan and have control of the situation. I am also a woman who desperately wants to cling to every breath inside of Waverly. We have been holding vigil by her side, sleeping next to her, one of us always near her. We are anticipating the absolute worst moment of our lives, knowing it is coming to take her away from us.
Wavey has proven to be a fighter. Sanfilippo has weakened her body, but it has strengthened her spirit. She has fought for every step, every milestone, every developmental age. And she clung to them as the disease ravaged her brain.
Each breath brings a sigh of relief and ramps up the anticipation that the next one could be her last. My chest hurts, my head is sore, my eyes are swollen from tears. I am exhausted in every sense of the word.
Doubt creeps in and I question my choices. Anger creeps in and I want to explode. Denial creeps in and I am convinced she will wake up healthy. Sorrow is every present and knocks me over in waves of sadness. And through each emotional swing, love is at the center. I love my little girl fiercely. I would give anything to trade places with her and take her pain away.
Please pray for Waverly. Pray that we are able to control her pain and seizures, so she can be as comfortable as possible through this end of life process. Pray for Matt and I as we navigate this together, both of us experiencing a myriad of emotions and never at the same time.