Matthew was now a little over nine months old. We were blessed to have already had him one and a half months longer than we had had Sarah, but as each day passed, we knew this child would become more and more debilitated. Thoughts of feeding tubes, and possibly ventilators, were more than I could fathom. This was not the life I had envisioned. This was not what I wanted for my baby.
In spite of all the fears and obstacles, I still loved my baby boy very much. There is no logical explanation of the bond of love between a mother and her child, even when that bonding has been hindered in some way. There is a tie. The needs of the child come before the needs of the mother. The time had come for me to surrender my claim on this child's life, and give him back to God. We had symbolically done that at his dedication service, but now it was time to surrender his actual earthly life back to his Creator. I didn't want to see Matthew suffer or struggle to stay with us anymore. Fully aware of what I was doing, I began to pray that God would take him home.
From the day he was born, we knew Matthew could die at any moment. Every day for 9 1/2 months we would go to his room in the morning, or after a nap, not knowing if we would find a live baby, or a dead one. It was something we didn't think about much in the earlier days, but toward the end, as his condition deteriorated, it was on my mind every time I walked toward his room; a sense of dread my walking partner. We had one of those baby monitors that nearly every new parent has these days. One end is placed in the baby's room near the crib, the other in the room you will be in which enables you to hear your baby cry when upset or ready to get up. Matthew's cry was so soft and kitten-like, we had a hard time hearing him, especially if Mike was playing loudly, or the TV or music was on. Sometimes it seemed Matthew's room emitted no sounds at all, a black hole where no noise existed; not even the sound of life. I would put my ear next to the monitor and strain to hear sounds of Matthew's breathing, or any other noise that would indicate he was still with us. An audible little squeak or sound of movement would bring an instant flood of relief to my mind, and to the tension in my stomach. He was still alive; I could breathe again. I was living on the edge; trying to maintain a normal family life for my very healthy almost 3 year old, while at the same time feeling the anxiety and stress of knowing death was knocking on our door; the anticipation of which was agonizing. Wanting him to live- wishing it was over. What an emotional mess.