Yesterday was a terrible day. I’m not sure I have much more energy today to write about it, but I want to capture it while it is all still crystal clear in my memory.
The night before (Sunday into Monday), Caron and I took shifts with Amber, swapping every few hours when it was time to give Amber her medications. In total, we each probably got about 2.5 hours of intermittent “sleep”, which is only slightly less than the past several nights. Amber did not sleep well either, but as the night wore on, she started coming out of her deep sleep and talking to us. This burst of energy and awareness lasted until around 1:00 in the afternoon, and it was beautiful. We even got to hear “I love you” several more times from her. This was an incredible blessing.
Through the night her breathing had become rough and irregular, but through the afternoon it really declined rapidly. She sounded kind of hoarse and would take 5 or 6 short breaths, and then a long 4-5 second pause. As the afternoon continued further, the number of breaths shrank, the length of the pause grew, and the “death rattle” started setting in. By 4:50, it became a regular rhythm of a short breath and long pause, and in her final minutes, the breaths slowly faded, and then stopped.
The nurses from Hospice prepared us as much as possible for this. We knew this was coming. Amber was comfortable and peaceful the whole time, and showed no signs of distress. But still – this was absolutely terrible. It was also absolutely the right thing to do, and something that we were only capable of doing because we love her so much. Caron held Amber in her arms the entire day, right to the very end, with me right next to her.
And then we cried. Deeper sorrow than I have felt at any time through this journey. The deepest sadness I have ever felt in my life. Amber was gone. Her soul departed, and we were left with just her limp body. The tears were a torrential downpour, our chests aching like someone just punched us.
I carried her back to her bedroom, laid her in her bed, and we prayed that she enter Heaven swiftly. My brain knows that she is no longer in any pain, that she no longer has any physical challenges. But my heart and my soul are shattered.
After an eternity, I call Hospice to let them know she passed. The nurse will come shortly to begin the process. Then, I call her grandparents and aunts and uncles to let them know.
Once the nurse arrives, she helps Caron and me begin preparing Amber. After bathing and dressing Amber for transport, Caron and Marie paint Amber’s nails one last time. Then the paperwork is filled out, and the funeral home is called.
Once the funeral director has arrived, after a few more pieces of administrivia, it is time to have Amber’s body removed. I am given the option, so I pick up Amber from her bed, and carry her out the front door to the waiting vehicle. It is dark, with only the house lights lighting our front yard and walk. I stop and turn to look back at the house with Amber. This is the last time she will see this house, the last time I will see her in this yard, the last time I will hold her in my arms. My little girl, who so bravely fought an aggressive brain cancer, and who made such significant recovery from initially losing the use of her left side. My little dancer, my love bug. My giggler, my sassy-pants. My Amber. I kiss her forehead and squeeze her for a few more seconds. Then I turn toward the vehicle again, lay her gently on the gurney, and watch her disappear down the driveway.
I can only describe what I am feeling as “broken”.
After a few more hours with Caron and our children, we all head to bed, with Caron and Brianna sleeping in Amber’s bed. Sleep does not come easily. But when it does, I sleep deeply, as deep as my despair has been.
This morning, we got out of bed to face our new life, our new reality. Now only 3 children need to be fed breakfast, to be dressed for school (yes, the kids wanted to go to school and see their friends today), to be kissed and sent out the door. And then, Caron and I started the next pieces of process – putting together a wake for Friday evening and a funeral Mass for Saturday morning, and visiting the cemetery where our little girl is to be buried (and someday, us alongside).
It has been an incredibly difficult couple of days.