I want to share more with you about our time after Lexi came home from the hospital on hospice but just as she was often checked out with the foggy expression that burns me, making me feel like she isn't here I spent a lot of time somewhere else. I was in my head, daydreaming and going through the motions of regular life. It takes a lot of energy to not feel. The excruciating weight of grief of seeing Lexi's bad days turn into bad months was always there but I pushed it down and did my best to survive.
I tried to focus on the fact that this life is temporary and we are waiting for heaven but that is kind of a dark place to rest in. I could have hope in this life for myself and Daniel and my boys but where Lexi was concerned I had to fight hopelessness every single day. Sometimes every hour. I often lost that battle. Disengaging became much easier than fighting for joy. When she was away from me I tried my best not to think of her at all so I could enjoy the other parts of my life.
It's hard to remember a lot of what we went through...It's scary to remember. Overall I can picture an incredibly fragile Lexi. I became so careful with her. Every time I held her it was as if she was breakable. There were times where even holding her was painful for her.
She struggled a lot with her breathing and we were thankful for the oxygen at home. Every time she got sick it was life threatening. Daniel literally saved her life once when she stopped breathing and passed out because her airway was blocked with mucus. We had cancelled a vacation with friends because she was extremely sick. Daniel and I were taking shifts caring for her and while I was napping he yelled for me. I came down to find a passed out gray Lexi not breathing and Daniel saying, "I don't know what to do. I don't know what to do." She had stopped breathing during her bath and even after suctioning her had not started again. I asked him to give her to me and let me hold her. He handed her to me and her body heaved in a large breath and she opened her eyes. That day was one of the few times I have seen Daniel cry.
The natural conclusion was that Lexi's body was shutting down. We had no expectations for her for any tomorrows and were biding our time. Her temperature was often low. She slept more than she was awake. Her oxygen regularly dropped below healthy levels and she constantly had one sickness or another.
This was her life, our life for 15 months. Until one day in early fall of her 9th year the light in her eyes came back. I remember thinking, "Hello gorgeous. I've missed you!"