Marshall's Story Our Story begins like any other. In December of 2001, I became pregnant with Marshall. He was born on August 16, 2002. The pregnancy, labor and delivery were easy. I had worked right up until the day I delivered. Once my water had broken, Marshall was out in less than 9 hours. We named him Marshall Daniel Mo Potter after his great grandfather, his uncle and his Papa Mo. He was given a clean bill of health almost immediately and nursed like a champ. We were so thrilled to have our healthy baby boy. Looking back now, some of the signs were already present. His cry, sneeze and cough were extremely weak. In the hospital, and once we brought him home, we were told constantly what a good baby we had, and everyone commented on how content he was. We didn’t know that he was just too weak to elicit any attention by crying or screaming. We agreed that he was such a good baby. When Marshall was four weeks old, we were visiting with my best friend who has a son very close in age to Marshall. I remember picking up her baby boy, Gage, and noticing how very strong he was. I called this to her attention and asked her to hold Marshall. We both agreed that he was significantly weaker. I also couldn’t remember him ever moving his arms or legs. His well visit was coming up in another week, so I decided to wait until then. Maybe he developed slower than average, I thought. At his five week visit, his regular pediatrician was on vacation. After examining him, the covering physician asked me if he had been born breach. I told him that he wasn’t, and from that moment, I knew something was wrong with my baby. He confirmed that Marshall had low muscle tone. He didn’t think it was anything serious and told me it could wait until Marshall saw his regular pediatrician in two more weeks. So, we waited. I worked Marshall’s muscles constantly, hoping and praying for some type of improvement. I also called Early Intervention and begged them to send someone out soon. I was very worried about my baby. I never had a good feeling about this whole thing from the very beginning. Two weeks later we saw his pediatrician. He seemed very concerned about Marshall, knowing something was wrong, but not knowing what. He scheduled us an appointment with a pediatric neurologist for one week from that day. We never did get to that appointment. The day before E. I. came out, I remember watching some video we had taken of Marshall when he was just 4 days old. He had been moving his arms and legs all over the place. It was then that I realized that there was something terribly wrong, and that my baby was never going to be the same again. I figured worst case scenario was that he would be wheelchair confined. I was an occupational therapist, I could handle that! Never once, did I think my baby was dying. I remember the day that Kathy, RN came from E.I. She seemed worried about his breathing. (That was a new concern, wasn’t it?) No one else had mentioned this before. She persuaded me to call Marshall’s doctor, who did not feel that Marshall was in any greater danger than he had been last week. So we did nothing. Several hours after leaving my house, Kathy called again and told me she had set up an appointment for that night for Marshall at the local hospital. She said she did not have a good feeling about it and that it was imperative that his breathing get checked out. So we went to the appointment at and the doctor agreed that there was something seriously wrong with Marshall. They transported us by ambulance to Umass Hospital where we would have tests run on Marshall. I slept over with Marshall and his dad went home to rest. The following day, Thursday, October 10, 2002 was when they completed the tests and handed us the news. Marshall had SMA Type I and was dying. “There is no cure” they told us. At that moment, millions of feelings were rushing around in my head. I wanted to throw up. I hoped and prayed the doctor had made a terrible mistake. Nothing could be wrong with my baby, after all, I was healthy and got excellent prenatal care. I never even smoked a cigarette in my life! How could there be something wrong with my baby? It was then that I learned about the dirty genes (as I like to call them) that Mark and I both carry. We had passed this on to our “Little Man”. I will forever carry the guilt. I will forever feel that this was indirectly my fault. I know in my heart that because I did not know about it, it could not have been prevented. But, I will always feel that we did this to him, and I may never get over that. October 12, 2002 we took Marshall home with us to experience the rest of his life, but ultimately to die. The hospital was great about organizing some resources and giving us Nancy, Marshall’s nurse for the rest of his life. I remember the first time she came, she told us she was just doing the intake, and we would be passed to another nurse. I guess she couldn’t resist those blue eyes either because she never passed us on to another nurse. We will be forever grateful that she did not. She was nothing less than excellent to our whole family for the 11 weeks that we had her. Mark and I decided almost right away that we had to make some ground rules. #1. No crying in front of the baby. He didn’t know anything was wrong and we did not want him to feel the stress and sadness that we carried with us. Nothing but smiles for Marshall D. #2. Marshall would never sleep another night in his crib. He would sleep between his mom and dad, in the big bed, for the rest of his life. (He did, too!) #3. Take as many pictures as possible. We are SO glad we did this! We look at them daily now. #4. We would take him everywhere possible because we wanted him to experience everything he could in his short time with us. We had fun with him. We took him to church, to the zoo, the mountains, the beach, to cut down his only Christmas tree, and he even sat in a Mustang Cobra. We also allowed him to spend as much time as possible with those who loved him. We spent endless hours on the couch making him smile (which made us smile!), cuddling him and just loving him. Nancy from Umass and Kathy from E.I. continued to come on a weekly basis and more often when we needed it. They have been our support from the very beginning. When Marshall was 14 weeks old, his swallow started to disappear, quickly. We scheduled him for a g-tube surgery right away. He received this the week of Thanksgiving. We were so happy we did this because it allowed us an extra month of precious time with him. My sister even decided to push up her wedding date so Marshall could be her ring bearer. She got married on December 14, 2002. I remember feeling that Marshall’s time with us was coming to a close. I asked him on Friday of that weekend to just get through the weekend. I told him that whatever happened after that was probably meant to be. I wanted my sister to have wonderful memories of him from that weekend. There were also a lot of relatives in from out of state for the wedding and to see Marshall. I wanted them to remember him in his best condition ever. We had a great time at the wedding, and the photographer took so many nice pictures of Marshall, Mark and I. Sunday afternoon we spent time at my aunt’s house with more relatives. That was his last good day. He listened to his mom because Sunday night, he started to fail. He was obviously uncomfortable and his breathing became so labored. Monday morning I called Nancy and begged her to come over. She was there right away and agreed he was failing. We decided it was time to use the morphine. With the exception of one other day, he was on it continuously for the rest of his life. I won’t go into great detail about Marshall’s death on December 22, 2002. I will tell you that he fought it so hard. It was just his personality. I remember when he would try not to fall asleep in his early days, he always fought that too. Watching him die was the hardest thing I have ever experienced in my whole life. There was not one peaceful thing about it. He actually died 3 times between 8pm and 2am. Each time he fought back harder. There was a point when I could not watch him suffer any longer and I left the room sobbing. It was then that he decided he could let go. Nancy told me that sometimes kids don’t want the person they care for the most to be present when they die. I have to believe this is true. I will forever feel guilty for walking out on my baby, but I knew he was safe within his Daddy’s arms, and with his two uncles next to him. It was actually a relief when he finally passed because we knew he would no longer suffer. Now, we are the ones suffering. We have to learn to live without him. We find a tiny bit of consolation in the fact that we had his heart valves donated so that another baby in need may have been helped. We like to know that our Marshall D. will live on within someone else. We buried him on December 24, 2002 right next to my dad. He will always be a part of our hearts, and so much more. For the four months and six days that he was alive, that little boy experienced more than most kids do in an entire lifetime. He brought so much joy to all who knew him. We know he was sent to us for a reason. We are not quite sure about the reason why he had to leave. He will be forever missed. We want to add that FSMA (www.fsma.org) was a constant support in the battle for my baby’s life. We appreciate everything that was done for us either directly or indirectly as a result of FSMA. We met many people that we now call part of our family, as a result of FSMA, and we know we will always have a constant support through this organization. We hope that we can now be the support that we so often required throughout Marshall’s illness. Anyone wanting to talk, please don’t hesitate to email us at frosty4@gis.net Love, Laurie & Mark Potter & Our Angel with the Golden Glow, Marshall Daniel Mo Potter - Aug. 16, 2002 - Dec. 22, 2002