was breathing with more effort then usual. We had been suspecting reflux and I heard gulps like he was refluxing. I thought I would call the doctor in the morning and talk about medicine. Mike tried to take him for a drive to calm him to sleep as we assumed the reflux was bothering him and that maybe he was getting the respiratory virus the girls had dealt with the week before. When they got back from the drive Ben had never fallen asleep and in that time he had developed a fever of 102. Mike took him to the emergency room at Children's St. Paul while I stayed home with the girls. His breathing got more out of control and they had to put him on abegan to think of it as being like a birth, something bigger than myself, something I could never do alone but God would be with me. Those days by Ben's bedside were special to me because they were time I had with him, to hold his little hand, to sing to him, to pray and pray and pray for him. The child life specialist was such a comfort to me. She helped give us the words for how to explain the disease to the girls, and for how to later explain the shortness of the life Ben would have. A friend connected with the national support group, Families of SMA, and found a mom who herself had a daughter with SMA Type 1 who was born and went