Last night as I climbed into bed anticipating Friday, I was overcome with emotion. Today, November 17th, was Waverly's last full day on earth. She was present for the sun rise and set for the final time. It broke me.
She hadn't opened her eyes for days and we knew her final breath could come at any moment. However I was able to complete my motherly routine that day to the fullest. Administering medications, bathing her, dressing her, reading to her, singing to her. We stopped moving her around from room to room because her body was sore and with each repositioning we feared we were causing her pain. We spent the day in her room. Propped her up in her bed, with pillows to prevent additional bed sores.
Bed sores were the worst part of the process. Inevitable, no matter how much you try. But I felt as if I had failed her. I couldn't stop her body from shutting down and revolting against my best efforts.
Waverly's geneticist stopped by on her way to the airport. She was grateful for one more visit with one of her favorite patients. And our amazing hospice nurse came by, signaling that the time was near but Wavey had proven to be a fighter and was going to follow her own path. It was our job to follow her lead. I wonder if she knew that day as she said goodbye and told us she would be back the following day that it was the end.
I remember Oliver was at Jill's House, so it was just Matt and I. We camped out in Waverly's room, unable to concentrate on reading or writing. We felt we had said all we could say to one another and to Waverly. We couldn't force any other profound moments. I remember turning on the iPad and watching an episode of Judge Judy. How stupid to have watched a ridiculous show in that moment, but we were exhausted in every possible way.
I remember as we laid her down in our bed that night, so I could sleep next to her and Matt slept on a mattress on the other side of her, I cried and said what I had been unable to say at any other point. It was time. Her body was failing her and it crushed me. We finally verbalized that she could go.
We never fully slept. I tended to stay up late into the night, unable to rest unable my eyes could no longer stay open. Matt was able to fall asleep, but would awake early waiting for the sun to rise again. We make a very good team. In the midst of tossing and turning, alarms would go off signaling us to administer medication.
And as soon as the darkness was chased away by the rising sun, she took her final breath. Choosing a moment when both Matt and I weren't staring at her. She had a momentary break and that is when she was called home. A morning when Oliver was being loved and cared for by the staff at Jill's House. He didn't have to listen to the screams from the depths of our souls that only a parent who loses a child can allow to escape.
In that instant our lives changed. Our identities changed. We were before and after.