CaptHeather
10-19-2007, 01:04 PM
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Murphy's Law
Member
Reged: 03/17/05
Posts: 3822
Loc: Red Sox Nation our story
#42188 - 08/16/05 02:00 AM Edit Reply Quote Quick Reply
Originally I said I was going to share this tomorrow (August 16) but opted for today instead. My dd is asleep and my dh is out at a volleyball game, so I have time to sit here and think and write - 2 things I like to do without distraction. Pull up a chair and relax while I tell you about my son. And thanks for reading my story.
I met my dh when we were both 17. Neither of us had ever had another significant other. Some said we were the perfect match. We never knew just how perfect until 8 years later.
We married at 23. I wanted children right away but he wanted to wait. We compromised and waited one year (exactly). I threw away my birth control pills on our first anniversary. I got pregnant 3 months later.
The pregnancy was uneventful. I felt great once I escaped the perils of morning sickness in the first 12 or so weeks. We were looking so forward to the arrival of our little boy!
Toward the end of the pregnancy, I approached my doctor about the lack of movement I was feeling inside my midsection. I had never been pregnant before, so I just wanted to make sure what little movement I was feeling was okay. She ordered an ultrasound and told me he was perfect - just a little cramped and running out of space. She put my worries to rest and I went home.
Three years ago today, at 9pm on August 15 2002 my water broke while I was on the toilet. I jumped into the shower and began throwing my things together. Oh, how I could not wait to meet my son! We drove to the hospital. After a textbook labor and delivery, my son was born. I remember that when I first heard him cry, it was weak - like a kitten. I looked at dh and said "That will NEVER annoy me - he's SO quiet!" Little did I know, he would only get quieter.
When my baby boy Marshall was a month old, I began to notice he was not like other babies. He did not move at all and wasn't even close to holding up his own head. We saw the covering pediatrician (our regular ped was on vacation) at 5 weeks old and he asked if Marshall was born breach. From that second, I knew something really was wrong. I told him that he was not born breach. He explained that he had low muscle tone but that it was not anything serious and it could wait until our regular doctor got back. We scheduled an appointment for 2 weeks later.
I desperately worked my son's legs and arms just hoping to strengthen them. I really just thought that with a little physical therapy he would be okay. When we saw our regular pediatrician finally, he really was worried and called a neurologist while we were there. They didn't have any openings for a few weeks, so they put us in at the first available appointment. In the meantime, I called our Early Intervention program and begged them for someone to come out and evaluate my son. By this time he was 8 weeks old and getting worse. He was no longer audible at all and what little movement he did have was no longer visible.
E.I. came out on October 9, 2002. They seemed concerned. They finished their eval. and left. A few hours later, the nurse called me and told me she could not stop thinking about my little boy and was really worried about his breathing. Since I had been with him every second, I had not noticed that his breathing had gotten progressively worse. Now, looking at him, I could plainly see that his chest was caving in and he was panting with his tummy. WHY didn't I notice that beforehand!? I had been so concerned with his arms and legs, I never thought to check out his breathing! The E.I. nurse told me she set up an appointment at the after-hours clinic for us. So we went. This was the last day of my life I have ever worn a blissfully ignorant smile.
They transported us by ambulance to a bigger hospital and all through the night they did tests. Some were painful. But my child did not cry. You see, he could not cry. His muscles were too weak to cry. But his eyes told a different story. They were scared and he looked to me for comfort. I did the best I could.
The next day they brought us into a little conference room. I looked up across the table and one of the nurses was in tears. I begged God at that second for her to be crying for someone else's baby - not mine! Well, you can imagine - she was crying for my baby. The neurologist told us that Marshall had something called Spinal Muscular Atrophy (or SMA for short). His motor neurons were dying and as a result, so were his muscles. I asked the doctor "Is there a cure?" And he said "no". At that point I fell apart. To think about it still physically hurts my heart. Somehow I managed to ask the doctor "how long?" And what he said made me want to vomit. He said "Marshall will not live to see his first birthday." And, as if that was not bad enough, we learned that Marshall got this SMA from us. SMA is a recessive disorder that both parents have to carry. Consequently, we face a 1:4 risk of SMA with EVERY future pregnancy. 1 in 40 people carry this cursed gene. I am 1 in 40. My husband is also 1 in 40 (hence the "perfect match" I alluded to in the second paragraph).
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. There just weren't enough minutes in the day to spend with him. I tried desperately to memorize every one of his features.
When Marshall was 14 weeks old, his ability to swallow started to disappear, quickly. (They told us this would happen). 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 carried Marshall, who had the rings pinned to his clothes. It was a special day.
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. The weekend was over, and I knew what was coming.
His visiting nurse helped us control his pain with medication. But I still never felt that he was at peace until he was gone. He lingered and fought and cried out and was in and out of consciousness for the remainder of the week. He died in the early morning hours of December 22, 2002. We buried him on Christmas Eve of that year.
Much of the next 9 months is a blur to me. I guess it's safe to say I was existing - merely existing. I wanted nothing more than to die. I don't know why I didn't.
Once I got my depression under control, I started working against SMA. We have established a tax exempt organization in our son's memory to fight SMA. To date we have raised $38,000 toward the cure for SMA.
We have also created Marshall a memorial garden in our yard, complete with a granite bench. Let me tell you, nothing in the world can prepare you to see your child's name in granite, instead of on the back of a baseball uniform - the way it was supposed to be.
I am going to include a link here that tells a bit more about Marshall and also includes pictures of him. Please click here.
And so, 3 years later, I want to wish my boy a Happy Birthday in heaven. It pains my heart to be without him but I am thankful he is at peace.
I miss you, Little Man.
Thanks for letting me share. And never ever be afraid to mention my child's name or ask questions about him. I don't hear his name nearly enough!
Murphy's Law
Member
Reged: 03/17/05
Posts: 3822
Loc: Red Sox Nation our story
#42188 - 08/16/05 02:00 AM Edit Reply Quote Quick Reply
Originally I said I was going to share this tomorrow (August 16) but opted for today instead. My dd is asleep and my dh is out at a volleyball game, so I have time to sit here and think and write - 2 things I like to do without distraction. Pull up a chair and relax while I tell you about my son. And thanks for reading my story.
I met my dh when we were both 17. Neither of us had ever had another significant other. Some said we were the perfect match. We never knew just how perfect until 8 years later.
We married at 23. I wanted children right away but he wanted to wait. We compromised and waited one year (exactly). I threw away my birth control pills on our first anniversary. I got pregnant 3 months later.
The pregnancy was uneventful. I felt great once I escaped the perils of morning sickness in the first 12 or so weeks. We were looking so forward to the arrival of our little boy!
Toward the end of the pregnancy, I approached my doctor about the lack of movement I was feeling inside my midsection. I had never been pregnant before, so I just wanted to make sure what little movement I was feeling was okay. She ordered an ultrasound and told me he was perfect - just a little cramped and running out of space. She put my worries to rest and I went home.
Three years ago today, at 9pm on August 15 2002 my water broke while I was on the toilet. I jumped into the shower and began throwing my things together. Oh, how I could not wait to meet my son! We drove to the hospital. After a textbook labor and delivery, my son was born. I remember that when I first heard him cry, it was weak - like a kitten. I looked at dh and said "That will NEVER annoy me - he's SO quiet!" Little did I know, he would only get quieter.
When my baby boy Marshall was a month old, I began to notice he was not like other babies. He did not move at all and wasn't even close to holding up his own head. We saw the covering pediatrician (our regular ped was on vacation) at 5 weeks old and he asked if Marshall was born breach. From that second, I knew something really was wrong. I told him that he was not born breach. He explained that he had low muscle tone but that it was not anything serious and it could wait until our regular doctor got back. We scheduled an appointment for 2 weeks later.
I desperately worked my son's legs and arms just hoping to strengthen them. I really just thought that with a little physical therapy he would be okay. When we saw our regular pediatrician finally, he really was worried and called a neurologist while we were there. They didn't have any openings for a few weeks, so they put us in at the first available appointment. In the meantime, I called our Early Intervention program and begged them for someone to come out and evaluate my son. By this time he was 8 weeks old and getting worse. He was no longer audible at all and what little movement he did have was no longer visible.
E.I. came out on October 9, 2002. They seemed concerned. They finished their eval. and left. A few hours later, the nurse called me and told me she could not stop thinking about my little boy and was really worried about his breathing. Since I had been with him every second, I had not noticed that his breathing had gotten progressively worse. Now, looking at him, I could plainly see that his chest was caving in and he was panting with his tummy. WHY didn't I notice that beforehand!? I had been so concerned with his arms and legs, I never thought to check out his breathing! The E.I. nurse told me she set up an appointment at the after-hours clinic for us. So we went. This was the last day of my life I have ever worn a blissfully ignorant smile.
They transported us by ambulance to a bigger hospital and all through the night they did tests. Some were painful. But my child did not cry. You see, he could not cry. His muscles were too weak to cry. But his eyes told a different story. They were scared and he looked to me for comfort. I did the best I could.
The next day they brought us into a little conference room. I looked up across the table and one of the nurses was in tears. I begged God at that second for her to be crying for someone else's baby - not mine! Well, you can imagine - she was crying for my baby. The neurologist told us that Marshall had something called Spinal Muscular Atrophy (or SMA for short). His motor neurons were dying and as a result, so were his muscles. I asked the doctor "Is there a cure?" And he said "no". At that point I fell apart. To think about it still physically hurts my heart. Somehow I managed to ask the doctor "how long?" And what he said made me want to vomit. He said "Marshall will not live to see his first birthday." And, as if that was not bad enough, we learned that Marshall got this SMA from us. SMA is a recessive disorder that both parents have to carry. Consequently, we face a 1:4 risk of SMA with EVERY future pregnancy. 1 in 40 people carry this cursed gene. I am 1 in 40. My husband is also 1 in 40 (hence the "perfect match" I alluded to in the second paragraph).
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. There just weren't enough minutes in the day to spend with him. I tried desperately to memorize every one of his features.
When Marshall was 14 weeks old, his ability to swallow started to disappear, quickly. (They told us this would happen). 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 carried Marshall, who had the rings pinned to his clothes. It was a special day.
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. The weekend was over, and I knew what was coming.
His visiting nurse helped us control his pain with medication. But I still never felt that he was at peace until he was gone. He lingered and fought and cried out and was in and out of consciousness for the remainder of the week. He died in the early morning hours of December 22, 2002. We buried him on Christmas Eve of that year.
Much of the next 9 months is a blur to me. I guess it's safe to say I was existing - merely existing. I wanted nothing more than to die. I don't know why I didn't.
Once I got my depression under control, I started working against SMA. We have established a tax exempt organization in our son's memory to fight SMA. To date we have raised $38,000 toward the cure for SMA.
We have also created Marshall a memorial garden in our yard, complete with a granite bench. Let me tell you, nothing in the world can prepare you to see your child's name in granite, instead of on the back of a baseball uniform - the way it was supposed to be.
I am going to include a link here that tells a bit more about Marshall and also includes pictures of him. Please click here.
And so, 3 years later, I want to wish my boy a Happy Birthday in heaven. It pains my heart to be without him but I am thankful he is at peace.
I miss you, Little Man.
Thanks for letting me share. And never ever be afraid to mention my child's name or ask questions about him. I don't hear his name nearly enough!