I woke up yesterday morning with a sense of peace. The pressure on my chest subsided and the knot in my stomach loosened a bit. Like most people in the midst of crisis, you begin to adapt to the chaos. And we have been living in this slow moving disaster for 7.5 years. We have always known what the outcome would be and tried to remain realistic with our hopes. We were told when the kids were diagnosed that treatments were not the horizon. We are certainly closer, but not nearly close enough anymore.
Waverly is stable. We haven't seen many changes since Friday. She had a lot more coughing yesterday afternoon and evening. She also seemed more spastic with her movements. We have yet to see a bump in spirit from the antibiotics, but at least we know any pain the infection has caused is slowly subsiding as they take effect.
We are trying to navigate our new normal. Oliver went back to school yesterday. Matt returned to work this morning. We have some visitors lined up over the coming days. I have had some people volunteer to pick up/bring home Oliver from school for me and/or sit with Waverly whilst I drive him. Attempting to keep his routine as regular as possible is going to be one of our goals. Friends have dropped off meals daily since this ordeal began and I have discovered that even ice cream can arrive via Fed-Ex as a lovely gifts from friends who want to share sweetness.
Our hospice nurse and doctor both visited the home yesterday. I think we have a good pain management plan in place. We talked about the nuances of Sanfilippo. I am grateful for the in home support they offer.
There is no time frame. We could settle into and Waverly remains stable for weeks, months, longer. Or things could drastically change.
After 7.5 years of living in utter stress, we will at times look around and say we're ok. They we glance at Waverly and realize quickly that this is not ok. This is a drastic shift from her most recent normal. When people who know and love her visit, they are shocked by the changes.
One of our pastors visited us yesterday. Matt and I loved the opportunity to talk and pray with her. One of the things I appreciated the most was her prayer of comfort. It wasn't for healing or a miracle, but for Waverly to be comforted and cradled. I think when people are suffering terrible pain or strife, we too often call on God for a miracle without acknowledging the true suffering being experienced. We need to take the time to be present.
Our job is to relieve her of pain and bring moments of joy into her life. Favorite books, movies and songs. Light up toys and music. Walks in the sunshine, cuddles in her favorite blankets, time with those who love and adore her.
I do not know when, but I do know my daughter is dying. My son is dying. And it is a privilege to hold their hands and provide them with as much dignity and love as we can muster.