Steven had many milestones, the first day, the first week, the first month, but the one that sticks in my head the most is his First Birthday. Not only because it was his first but it was to be his last too. He had made it, or so we thought, through what was the toughest test. To make it through to his first Birthday. We were constantly told he would pass away any day, and to be one year old was something the doctors told us would never happen. I guess I always knew in my heart that he would not live a very long life, but every time he out lasted the odds, I would be one step closer to thinking it wouldn't happen. I was also expecting our second child, Bethani. With her impending birth coming closer, I was slipping farther into denial. I guess I just wanted to believe that he would always be there, even though I knew the truth. I started to see the times he stopped breathing and the times he was hospitalized, as a part of regular life for him. The suction machine, the feeding pump, the monitor, and the tackle box full of medications, bandages, ointments, tubing etc. were all ingrained into my life. To me there wasn't anything else. It was all I knew. How could I think about having to give that up someday? It was who I was, Steven's Mother.

The first time I really started to know the time was coming soon when Steven would leave us was when he had, had a surgical procedure to cut the tendons in his legs. I was in the last few weeks of my pregnancy with Bethani at the time. They did this because the Cerebral Palsy had tightened his legs so bad it was almost impossible to get his legs apart to change his diaper. He became really ill after the surgery and had to stay longer than what was expected. He had this surgery done at Brook AMC in San Antonio, so we had to stay at the Ronald Mc Donald House there (I thank God there are places’ like these houses, I don’t know what I would have done with out them). The hospital Steven was in had open wards so I was unable to spend the nights with him, but I was there throughout the days. One morning I came onto the ward and I found him turning blue and unable to breathe because no one had suctioned his nose or mouth through the night. He had also contracted RSV from some of the patients on the ward because it was an open ward and they had not quarantined them. Steven had also not been placed on a monitor like I had asked. After I had suctioned him, with my own suction device and turning him on his side (which was a better position for him to be in, I confronted his nurse about the care that he was receiving. She told me that they would not put him on a monitor because he didn’t need it and they were to understaffed to constantly suction him at night. I was sick. I didn't know what to do. I didn't want to leave him there but was unable to get him released because he had RSV. I was finally able, after constantly hounding the doctors and nurses and talking with a nurse practitioner at Ft. Hood, that Steven often saw and I was friends with, to get them to put him on a monitor. I was still uneasy but it was all I could do. It was the first time since his birth that I felt absolutely helpless. When he finally came home from that ordeal Steven had lost the ability to suck and roll over. The suck was because I wasn't able to feed him that way in the hospital because he was so sick. The rolling over was because his legs were now in a cast all the way up too his waist. When the cast was finally removed his legs were permanently stuck in the frog position. He was also extremely sensitive to touch after the surgery; he would startle at the slightest movement on his body. This would be the beginning of his downfall. In some ways I regret ever allowing them to do this elective surgery. But then how would I have continued to change his diapers?