The days and weeks passed, and the evidence of Matthew's condition continued to make itself more and more known. He became weaker, unable to hold up his head, or hold a small toy or rattle. I felt bad for him; he was old enough to be crawling and playing, yet couldn't even grasp a small bauble to satisfy his own curiosity or desire to chew on something. He could only be held, or sat in the infant seat when not lying down. He was having more difficulty eating as the muscles involved in sucking and swallowing became fibrous, reluctant to do the job they had been designed to do. Feedings became longer and more difficult, and choking more of a risk. We had been told with Sarah that when eating became too difficult, or impossible, a feeding tube could be placed to provide nutrition. I hated that idea. It wasn't normal, and I was striving for normal in the midst of the ultimate abnormal. I didn't want to see Matthew suffer, and a feeding tube seemed like an uncomfortable option, with me being the most uncomfortable with it. I resisted. He was losing weight; his face gaunt. Picking him up was like picking up a rag doll, as he had little to no muscle strength left in his body. He was getting tired- tired of fighting, tired of living in a dying shell, and I knew it. I began to accept the fact that we were not going to get a miracle for this baby either, and my focus needed to further shift from what was best for me, to what was best for Matthew. I began to make plans for when he died.
I spoke to our Pediatrician regarding Matthew's soon-coming death. We had been down this road together before, and I trusted her, knowing she would do the right thing for us. She had gone to bat for us with the Medical Examiner when Sarah had died, and saved us from the agony of our daughter needing to be autopsied. In most cities and counties, the law requires an autopsy to be performed on anyone who dies at home. She stood in the gap for us the day we brought Sarah into Emergency, convincing the M.E. that she knew us very well, and that the preexisting condition Sarah had was enough reason to not do an autopsy. He agreed. I loved her that day. I had seen an autopsy done, and the thought of my baby undergoing one nearly dropped me to my knees. It would have traumatized me further. So as we spoke that day, she reassured me that things would be different this time. She had already spoken to the Medical Examiner, and had obtained permission for us to simply allow Matthew to die at home. We would need to call her, and the funeral home when he passed away. That was it. His death would be quiet and peaceful, not heralded by lights and sirens, as his sister's had been. One part of the "death plan" complete.
One of our Pastor's wives was, and still is, a beautiful songstress. She was tiny in frame, but huge on voice. I loved hearing her sing. I called her one afternoon and asked if she would be willing to sing at Matthew's funeral. There was no response for a few, long seconds. I suppose it is a bit unsettling to be asked to sing at the funeral of someone who hasn't died yet, especially a baby. After those few awkward moments, she asked how Matthew was doing; was he getting worse. We talked for a few minutes, and I shared with her Matthew's continuing deterioration, along with my belief that he wasn't going to live much longer. She agreed to sing, and I told her the songs I wanted. The conversation ended. Part two of the "death plan" was now complete. I was getting ready.
Within a very short period of time after my phone call with our pastor's wife, our senior pastor was at my door. I thought it unusual, then I realized my Singer had tattled on me. He never said he was "tipped off", but I knew he didn't just stop by without good reason. He asked how Matthew was doing, and I repeated what I had earlier told the Singer; he was failing. He asked if he could hold Matthew, to which I agreed. My little jellyfish-like baby, held in the arms of my pastor; an image I can still see in my mind today. I believe he prayed a silent prayer over him in that brief moment, but the realization was coming to everyone, including him, that this baby was not going to be healed. He didn't stay at the house long, just long enough to get a real appraisal of what was happening, and how bad things really were. He gave me a hug, and said some kind words to me as he left. He was always gentle in voice and action, and I appreciated it. I always felt loved by this man of God.
Premonition, maternal instinct, insight, a "knowing". Whatever you want to call it, mine was right. Our days with Matthew were numbered. The end was near.