I miss my life when my family was whole.
I miss my best friend.
I miss being happy.
I miss laughing.
I miss my husband.
I miss being loved.
I miss my boys side by side sleeping.
I MISS NOAH.
Thursday, July 31, 2008
Tuesday, July 29, 2008
Time
Time is not a friend.
2 years ago I was hugely pregnant on bedrest, but blissfully happy to soon hold my twin boys.
2 years ago, both of my children were healthy (so I thought).
22 months ago, I welcomed my beautiful boys into this world along with fear and worry.
19 months ago, I held my sweet boy in my arms for the last time.
Time is cruel. It just keeps moving. How did the time pass since Noah died? I am sure it was just yesterday. Time has a funny way of distorting memories. I hate that. I want to remember all of it. The love, happiness, and heartbreak.
2 years ago I was hugely pregnant on bedrest, but blissfully happy to soon hold my twin boys.
2 years ago, both of my children were healthy (so I thought).
22 months ago, I welcomed my beautiful boys into this world along with fear and worry.
19 months ago, I held my sweet boy in my arms for the last time.
Time is cruel. It just keeps moving. How did the time pass since Noah died? I am sure it was just yesterday. Time has a funny way of distorting memories. I hate that. I want to remember all of it. The love, happiness, and heartbreak.
Tuesday, July 22, 2008
Saying Goodbye
I have never really written about the night Noah died. I feel like I am starting to forget things. I know they are painful memories, but I don't want to forget. Noah's death begins about a week before he actually passed. He began having apnea spells. Noah was on a sat monitor all of the time due to tracheomalacia (positional airway) and low muscle tone. The beep of his desats were a normal sound. This happened hundreds of times a day. Usually, he could be repositioned and he would be fine. The Friday before he died, he desatted and was not responding to repositioning. We began rubbing his chest and feet and blowing in his face. This stimulated him enough to get him to breath. He had done this before while at Children' Mercy. They wrote it off as prematurity, but he is not truly a preemie and it was often associated with seizure like activity.
The following week, the apnea spells and seizures continued. We were scheduled to have a Mic-Key button placed, but the surgery was cancelled due to the apnea. In hindsight, the surgery would have killed Noah. I don't know what we were thinking except he hated the NG tube down his nose. On Wednesday, he stopped breathing. I had been holding Monkey and Noah desatted. I held him and tried all I could to get him to breath. I silently prayed he would not die while I was by myself with Monkey. I finally began breathing for him in his mouth. He finally took a breath and seemed ok. I, on the other hand, was not. I had a cold and had no real choice but to start breathing for him or to watch him die. I got him sick. I ultimately killed my baby trying to save him. How do I live with that? I couldn't get him here safely and I couldn't protect him while he was here. I am a failure as a mother. I am so sorry Noah.
The following day Noah began showing signs of a cold. We had been warned that if he got even a cold, that it could be detrimental. His muscle tone was so weak that he could not fight off the infection and the cold quickly turned to pneumonia. I feel so guilty because we put him through another EEG and MRI that day. We were trying to diagnose the seizures so we could treat them. Why did I do that? The techs administering the MRI were terrible with him. They taped him to the table, flat on his back even after I told them he could not breath that way. It took them several minutes to finally move him to his side. How could I torture my baby that way?
We made it through Friday and Saturday and he seemed to be stable. He had not had any really apnea spells and I truly thought he would be fine. On Saturday, I ran an errand with my husband and I remember standing in line at the store, telling him that I was scared for Noah. Later that evening, I had that terrible feeling that something was not right. We took Noah to the ER. I packed a bag, knowing that we would be there for a week or so. I was not prepared to lose him. The thought had actually not occurred to me at the time. Once we were there, they all acted like they pitied us, but no one seemed to be hurrying around to make him better. They couldn't get an IV in, he was so dehydrated. He had 3 apnea spells in the ER. They finally moved us up to pediatrics where the nurses all knew us. We were there only an hour when Noah stopped breathing. They began bagging him while we waited for our pediatrician to arrive. We had already decided against a DNR. Once our Dr. arrived he told us it was time. I remember standing there pleading with him to do something else. There was nothing else to do. If we put him on vent, he would never come off. I told them to stop and they wrapped him in his favorite blanket and placed him in my arms. I rocked and held him while our family arrived to say goodbye. My husband took turns hugging and kissing him. We told him how much we loved him. It took almost two hours for his heart to stop. During that time, I don't remember anything but people's feet. I never looked up. I only looked at his face, knowing that it would the last time. I remember how hard his belly was from the oxygen being forced into him. His lips, once a perfect pink bow, were now purplish. He was gone. Noah left us at 3:22 A.M. Sunday morning.
All of our family had a chance to hold him and kiss him goodbye. We bathed him, dressed him in his pajamas, and wrapped him in his blanket. The nurses took hand prints and footprints. They cut a lock of hair. I remember the Dr. having us sign a consent for the autopsy. I didn't really know at the time what I was signing. He said they would do genetic testing. I wanted that for me and Monkey's future children. When the man from the funeral home arrived, he asked me lay him on the bed. They led me out of the room and closed the door. I remember resisting the urge to throw myself on the floor and refusing to leave. I had to leave my baby. It was like an out of body experience or a dream as I left. I was sure that didn't happen to me. Noah wasn't dead.
Once we arrived home, there was a lot of commotion. Our families trying to take care of arrangements, but I couldn't think of that. I just went to the twin's room and sat in the floor between their cribs. I looked at Monkey asleep in his crib and at Noah's empty bed. Did Monkey know he just lost his brother and best friend? Do babies know such things when their twin dies? I spent many nights sitting between their beds, struggling with wanting to die to be with Noah and wanting to live for Monkey. All of this time later, I still struggle with that. Who needs me more?
I am so sorry that I couldn't keep Noah safe. My body failed him and I failed him. Maybe he would have started breathing on his own if I had just waited longer. I was scared and didn't want him to die. I couldn't lose him, but in the end that cost me his life. Looking back, I think Noah was telling me it was time and I wasn't listening. I am sorry I put him through the testing and the doctor's appointments. I tried to not think of him dying, but living. I fought for him everyday. They thought he would die in the hospital and we fought to bring him home. We wanted to show him life and for him to be with his twin brother. I hope we did somethings right. I pray Noah did not suffer. I pray he knows he is always in my heart and always present in Monkey's laugh. Everyday that I look at Monkey, I see Noah. He is forever with me.
The following week, the apnea spells and seizures continued. We were scheduled to have a Mic-Key button placed, but the surgery was cancelled due to the apnea. In hindsight, the surgery would have killed Noah. I don't know what we were thinking except he hated the NG tube down his nose. On Wednesday, he stopped breathing. I had been holding Monkey and Noah desatted. I held him and tried all I could to get him to breath. I silently prayed he would not die while I was by myself with Monkey. I finally began breathing for him in his mouth. He finally took a breath and seemed ok. I, on the other hand, was not. I had a cold and had no real choice but to start breathing for him or to watch him die. I got him sick. I ultimately killed my baby trying to save him. How do I live with that? I couldn't get him here safely and I couldn't protect him while he was here. I am a failure as a mother. I am so sorry Noah.
The following day Noah began showing signs of a cold. We had been warned that if he got even a cold, that it could be detrimental. His muscle tone was so weak that he could not fight off the infection and the cold quickly turned to pneumonia. I feel so guilty because we put him through another EEG and MRI that day. We were trying to diagnose the seizures so we could treat them. Why did I do that? The techs administering the MRI were terrible with him. They taped him to the table, flat on his back even after I told them he could not breath that way. It took them several minutes to finally move him to his side. How could I torture my baby that way?
We made it through Friday and Saturday and he seemed to be stable. He had not had any really apnea spells and I truly thought he would be fine. On Saturday, I ran an errand with my husband and I remember standing in line at the store, telling him that I was scared for Noah. Later that evening, I had that terrible feeling that something was not right. We took Noah to the ER. I packed a bag, knowing that we would be there for a week or so. I was not prepared to lose him. The thought had actually not occurred to me at the time. Once we were there, they all acted like they pitied us, but no one seemed to be hurrying around to make him better. They couldn't get an IV in, he was so dehydrated. He had 3 apnea spells in the ER. They finally moved us up to pediatrics where the nurses all knew us. We were there only an hour when Noah stopped breathing. They began bagging him while we waited for our pediatrician to arrive. We had already decided against a DNR. Once our Dr. arrived he told us it was time. I remember standing there pleading with him to do something else. There was nothing else to do. If we put him on vent, he would never come off. I told them to stop and they wrapped him in his favorite blanket and placed him in my arms. I rocked and held him while our family arrived to say goodbye. My husband took turns hugging and kissing him. We told him how much we loved him. It took almost two hours for his heart to stop. During that time, I don't remember anything but people's feet. I never looked up. I only looked at his face, knowing that it would the last time. I remember how hard his belly was from the oxygen being forced into him. His lips, once a perfect pink bow, were now purplish. He was gone. Noah left us at 3:22 A.M. Sunday morning.
All of our family had a chance to hold him and kiss him goodbye. We bathed him, dressed him in his pajamas, and wrapped him in his blanket. The nurses took hand prints and footprints. They cut a lock of hair. I remember the Dr. having us sign a consent for the autopsy. I didn't really know at the time what I was signing. He said they would do genetic testing. I wanted that for me and Monkey's future children. When the man from the funeral home arrived, he asked me lay him on the bed. They led me out of the room and closed the door. I remember resisting the urge to throw myself on the floor and refusing to leave. I had to leave my baby. It was like an out of body experience or a dream as I left. I was sure that didn't happen to me. Noah wasn't dead.
Once we arrived home, there was a lot of commotion. Our families trying to take care of arrangements, but I couldn't think of that. I just went to the twin's room and sat in the floor between their cribs. I looked at Monkey asleep in his crib and at Noah's empty bed. Did Monkey know he just lost his brother and best friend? Do babies know such things when their twin dies? I spent many nights sitting between their beds, struggling with wanting to die to be with Noah and wanting to live for Monkey. All of this time later, I still struggle with that. Who needs me more?
I am so sorry that I couldn't keep Noah safe. My body failed him and I failed him. Maybe he would have started breathing on his own if I had just waited longer. I was scared and didn't want him to die. I couldn't lose him, but in the end that cost me his life. Looking back, I think Noah was telling me it was time and I wasn't listening. I am sorry I put him through the testing and the doctor's appointments. I tried to not think of him dying, but living. I fought for him everyday. They thought he would die in the hospital and we fought to bring him home. We wanted to show him life and for him to be with his twin brother. I hope we did somethings right. I pray Noah did not suffer. I pray he knows he is always in my heart and always present in Monkey's laugh. Everyday that I look at Monkey, I see Noah. He is forever with me.
Monday, July 21, 2008
Lost
When our children die, why do we say we lost them? The girl at the gym asked me today if Monkey was my first child. As usual, I hesitated before answering. I am so careful of how I answer that question. I told her that actually he is a twin and we lost his brother at 3 months. Lost? Why do I keep saying that? Is it really better for others to hear I lost him instead of that he died or is it that it makes me feel better? I find myself saying Noah died. He is dead. Maybe, I am trying to really believe that this separation is permanent. That he is really a box of ashes that I buried in the cemetery (that is a whole other issue for another day). Does that reality that you held your baby while he took his last breaths ever sink in? I think denial is my defense mechanism these days. I feel so guilty, but sometimes I don't think of him as often. Not because it doesn't occur to me, but because I shove it down. I am so afraid that I am going to fall apart. I miss my baby. I want to hold him in these aching arms. I wish he was lost. Then I could find my sweet Noah.
Sunday, July 20, 2008
Train Wreck - Wordle
Here is my wordle. I saw this over at Glow in the Woods. Bon, it is art. It is very hard to stand back and look. This is my life and it is sad, scary, and hellish at this very moment. It should be titled "The Train Wreck". No one wants to look, but if you take a peek, you will not able to turn away from how horrific it is. There is nothing JUST. My baby is dead. Noah is dead. If I keep saying it, will I finally believe it?
Saturday, July 19, 2008
Lifes mean little jokes
I went to the gym this morning, hoping to get away for awhile and do something good for myself. When I was about half way through, a couple ladies started talking about their vacation. She said she went to see the human body exhibit. You know the one with the real human bodies? She talked about what they looked like and how she was queasy. I listened slightly interested only because I had taken anatomy with a cadaver lab when I was in college. She said they had a room with babies from a couple weeks gestation to a few months old. She talked of what they died of and how she was uncomfortable looking. I seriously thought I might throw up or just scream. She keeps describing it and all I can think of is the night Noah died. The way he looked. He didn't look like my baby anymore. I never saw him after that night. I decided not to see him at the funeral home before he was cremated. I was afraid that I wouldn't be able to leave. I felt that he was no longer there. Just a body. I so much regret that decision now. To have had one more chance to look at his long, slender hands and touch his hair. I think I was scared to see him after the autopsy. I couldn't bear the thought of them cutting him open.
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The husband and I had it out today. He keeps saying that he doesn't know. I understand the overwhelming sense of grief, but not quitting on your family. He says he wants Monkey more, but I am just not comfortable letting that happen. We are seriously about two steps away from divorce. The idea makes me sick to my stomach. I can't live like this, but I'm not ready to throw it all away. I know this has gone on much too long. He agreed to try a new marriage counselor. I don't know, we may be too far gone. I have considered setting up a schedule for him to see Monkey and not talk to him otherwise. I am miserable when I am around him. He reminds me of all I have lost. He was my best friend, my lover, and soul mate. Now I don't know who this man is. He is certainly not the one I fell in love with all those years ago. I wish I could think of something else to try, something he would feel he could do.
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The husband and I had it out today. He keeps saying that he doesn't know. I understand the overwhelming sense of grief, but not quitting on your family. He says he wants Monkey more, but I am just not comfortable letting that happen. We are seriously about two steps away from divorce. The idea makes me sick to my stomach. I can't live like this, but I'm not ready to throw it all away. I know this has gone on much too long. He agreed to try a new marriage counselor. I don't know, we may be too far gone. I have considered setting up a schedule for him to see Monkey and not talk to him otherwise. I am miserable when I am around him. He reminds me of all I have lost. He was my best friend, my lover, and soul mate. Now I don't know who this man is. He is certainly not the one I fell in love with all those years ago. I wish I could think of something else to try, something he would feel he could do.
Friday, July 11, 2008
Marriage
Marriage is an interesting thing. Apparently, I didn't get it quite right. I have been with my husband since our senior year in high school. We had that lovey dovey stage, but we were just babies. We barely survived college in tact and still decided to take the plunge into marriage. It seemed the right thing to do. It was the logical next step as my husband said once before. Don't get me wrong I love my him. We have always had a difficult relationship. We are very different. I think that drew us together in the beginning and has torn us apart since Noah passed away.
Our marriage has three stages, before the boys, the boys, and after Noah died. It has been different in each stage. In the beginning, we struggled to find our way, but there was never a doubt that we were supposed to be together. He was my rock, my best friend, and soul mate. Once the boys arrived, we moved into the best place we had ever been. Maybe it was survival and we were just too stressed and tired to struggle. We had a common goal, keeping Noah alive and taking care of Monkey. We were a team and the little, petty stuff just seemed to go away. Once Noah died, our relationship just slowly disintegrated. I think we were trying to survive each day and take care of Monkey. I know for myself that I just didn't have the energy to take care of him too. I am very sorry for that. I was so sad and angry that I didn't have the patience for him. He is a procrastinator, the kind of person who buries his head in the sand and pretends that shitty stuff isn't happening. I am not that way. I want a plan. I want to fix what is broken. Neither of us did a very good job of dealing with losing Noah. He avoided it and I wanted to fix it. It didn't matter what we did, he was still gone. He wasn't coming back. It seems once we both came to terms with this cold, hard fact, we realized that our relationship was virtually gone. I think we both tried to pretend it was going to be okay. We talked about more children, but he wasn't real interested in making them and I was scared shitless it would actually happen. We moved into a new house, planning our future. What a joke. Now he is gone and all we do is fight.
I never dreamed this would be my life. A dead baby and a husband, who is not sure he wants to save his marriage. How did I get here? How do I get out of here? I know Noah is not coming back no matter how sad and angry I may be. My husband, though, doesn't want a divorce. Does that mean he wants me? Is it pride standing in our way? I have tried vulnerable, but he is not cracking. I feel like such a fool, waiting on his love. I just can't walk away. Not yet.
Our marriage has three stages, before the boys, the boys, and after Noah died. It has been different in each stage. In the beginning, we struggled to find our way, but there was never a doubt that we were supposed to be together. He was my rock, my best friend, and soul mate. Once the boys arrived, we moved into the best place we had ever been. Maybe it was survival and we were just too stressed and tired to struggle. We had a common goal, keeping Noah alive and taking care of Monkey. We were a team and the little, petty stuff just seemed to go away. Once Noah died, our relationship just slowly disintegrated. I think we were trying to survive each day and take care of Monkey. I know for myself that I just didn't have the energy to take care of him too. I am very sorry for that. I was so sad and angry that I didn't have the patience for him. He is a procrastinator, the kind of person who buries his head in the sand and pretends that shitty stuff isn't happening. I am not that way. I want a plan. I want to fix what is broken. Neither of us did a very good job of dealing with losing Noah. He avoided it and I wanted to fix it. It didn't matter what we did, he was still gone. He wasn't coming back. It seems once we both came to terms with this cold, hard fact, we realized that our relationship was virtually gone. I think we both tried to pretend it was going to be okay. We talked about more children, but he wasn't real interested in making them and I was scared shitless it would actually happen. We moved into a new house, planning our future. What a joke. Now he is gone and all we do is fight.
I never dreamed this would be my life. A dead baby and a husband, who is not sure he wants to save his marriage. How did I get here? How do I get out of here? I know Noah is not coming back no matter how sad and angry I may be. My husband, though, doesn't want a divorce. Does that mean he wants me? Is it pride standing in our way? I have tried vulnerable, but he is not cracking. I feel like such a fool, waiting on his love. I just can't walk away. Not yet.
Saturday, July 5, 2008
Dreams
I used to lay down each night and pray for two things. Sleep to end this silent suffering I was enduring each day I had to live without Noah and dreams of him to reassure me he was okay. Some nights I didn't have either. Sleep is hard to come by and I found I rarely dreamed of Noah. Everyone else seemed too, but not me. Why?
The last dream of Noah that I remember, we were on an airplane. The plane was much like that of the one used to fly him from our local hospital to Children's Mercy. There was no one else on the plane in my dream. I don't remember there even being a pilot. I was sitting holding Noah, healthy, swaddled in a simple white blanket. It was serene and we were flying over an unknown city. All I remember is peace. For the first time I felt peace with my sweet, little boy.
I would give anything for the kind of peace now. Just one little dream please. That is all I am asking for. Just a few moments to be with my baby. He feels so far away today.
I try to remember each dream someone tells me about. My favorite came from our Early Intervention nurse who made home visits each week to check in on Noah. I really thing she may have been checking in on me. In her dream, she is walking through a desert and comes upon an oasis with a beautiful pond and flowers. There she finds a little boy singing and dancing. She asks the little boy what he is doing there. He says " I am waiting for my brother". My angel is waiting on his big brother. If only Monkey would have gotten to know his dear twin brother.
I pray dreams come tonight. Maybe a little boy will be singing and dancing. Maybe he will be waiting for his mother.
I love you Noah.
The last dream of Noah that I remember, we were on an airplane. The plane was much like that of the one used to fly him from our local hospital to Children's Mercy. There was no one else on the plane in my dream. I don't remember there even being a pilot. I was sitting holding Noah, healthy, swaddled in a simple white blanket. It was serene and we were flying over an unknown city. All I remember is peace. For the first time I felt peace with my sweet, little boy.
I would give anything for the kind of peace now. Just one little dream please. That is all I am asking for. Just a few moments to be with my baby. He feels so far away today.
I try to remember each dream someone tells me about. My favorite came from our Early Intervention nurse who made home visits each week to check in on Noah. I really thing she may have been checking in on me. In her dream, she is walking through a desert and comes upon an oasis with a beautiful pond and flowers. There she finds a little boy singing and dancing. She asks the little boy what he is doing there. He says " I am waiting for my brother". My angel is waiting on his big brother. If only Monkey would have gotten to know his dear twin brother.
I pray dreams come tonight. Maybe a little boy will be singing and dancing. Maybe he will be waiting for his mother.
I love you Noah.
Friday, July 4, 2008
Things that suck
I took Monkey to the park last night to play. A tall, skinny boy and his sister began playing on the swing next to ours. She called him Noah. Oh, what might have been. Is this his way of popping in to say hello? I know there are many boys named Noah, but none swing next to Monkey. For a brief moment, I closed my eyes and pretended those were both my boys. One time to all play together at the park. I know this will never happen, but I can dream.
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I am fat...I don't care...yes, I do. I carry this pooch of skin from twin babies that were big enough to be singletons. I look in the mirror and don't recognize this person. So unhappy, so out of control, and so scared. Who is that person looking back? How did I get here? I turned 29 a few weeks ago. I feel like I am 50. I look like hell. I just don't care enough to do anything about it. How did I become an unhappy, angry mother of one living baby and one dead without her soul mate?
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I am fat...I don't care...yes, I do. I carry this pooch of skin from twin babies that were big enough to be singletons. I look in the mirror and don't recognize this person. So unhappy, so out of control, and so scared. Who is that person looking back? How did I get here? I turned 29 a few weeks ago. I feel like I am 50. I look like hell. I just don't care enough to do anything about it. How did I become an unhappy, angry mother of one living baby and one dead without her soul mate?
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