I look at my marriage disintegrating before my eyes and realize it is my dreams that I am fighting for so fiercely. M has stripped away all that I thought and hoped for my future. That is a lot to take in. There will be no family dinners, holidays celebrated, babies crying, or quiet moments in bed together before our children stir.
They say in divorce that you must mourn just as you would for a loved one. You do mourn, but it is different. Death is final and most of the time you have no control over it. Divorce is promises broken, rejection by the one you love most, and the reality that nothing in your life is what you thought it was. Losing Noah is by far the hardest thing that I have dealt with, but losing my marriage has taken away my ability to trust and look to the future. Is there life out there for divorced, babylost mama? I have enough baggage to scare everyone away. I can't see my future other than being alone and sad.
M remains vague about our future. No, he has not filed for divorce, but he is not here either. I am alone during the hardest part of the year. I put up the tree and the rest of the Christmas decorations. It all just feels empty. He is not here. Our home is not filled with laughter and happiness, only grief and heartbreak.
I keep holding on to the pieces of the life I knew. Some may see it as foolish, but I really do want my marriage and family together. I know that I can't bring Noah back, but I can have enough faith to wait out the storm. I just keep hoping for the break in clouds, to feel the sunshine on my face.
Sunday, November 30, 2008
Saturday, November 29, 2008
Marriage and Grief
I feel very alone when I think about Noah now. The experience seems uniquely mine, but M was there every step of the way. He was a good Daddy to the boys. I think he was overwhelmed as much as I was. We both did what had to be done and I don't think we gave the consequences much thought at the time. I don't think we even had any idea of what was ahead of us. I know we didn't expect to lose Noah so soon. I truly thought that I would get at least a couple of years, not months.
Our relationship has been rocky at times, but nothing that seemed out of the ordinary. We got together when we were young and had a difficult time growing up together. It seemed, or I at least I thought, we wanted the same things. We both had good jobs. We bought a nice house. We were living a pretty charmed life. Maybe that is why our relationship seemed okay at the time. Things changed when I got pregnant. We had been trying for quite some time, but it is like when it became a reality, he freaked out a little. I felt disconnected from him during the pregnancy. I was so in love with being pregnant that I just let it go. I figured he was just scared.
Now, I look at him and I don't really recognize my husband. Losing Noah has definitely taken a toll on him. I truly feel he is majorly depressed. I suggested today that he take something. He agreed to look into it so we will see what happens. I don't know where I want this to go, but I do still love him. I still believe in the vows we took 6 years ago. I know I am the fool for waiting while he acts like our marriage is disposable. I just think it is something more that is causing him to do this. I am not claiming to be totally the victim. I have my faults just like everyone else. I know I was difficult to live with at times.
So here I am waiting. What is the harm? Divorce is just so final and I am not sure I can be the one to take that step. I know he is unsure. He has dug this hole and now he can't figure out how to get out of it. I am trying to be the bigger person and help, but it so damn hard. I have no patience so I tend to get angry and hurt by him. It just seems like an impossible situation.
As Noah's day nears, I wish he could connect. He is the only person who gets it. He is the only person who loved him as much as I do. I know he misses him and carries his own guilt. At times, it is hard to see past my own feelings to help him with his. I wish there was some place for Dads of lost babies. Their needs seem to be different that ours. Does this place exist? I hope for his sake that he finds it.
Our relationship has been rocky at times, but nothing that seemed out of the ordinary. We got together when we were young and had a difficult time growing up together. It seemed, or I at least I thought, we wanted the same things. We both had good jobs. We bought a nice house. We were living a pretty charmed life. Maybe that is why our relationship seemed okay at the time. Things changed when I got pregnant. We had been trying for quite some time, but it is like when it became a reality, he freaked out a little. I felt disconnected from him during the pregnancy. I was so in love with being pregnant that I just let it go. I figured he was just scared.
Now, I look at him and I don't really recognize my husband. Losing Noah has definitely taken a toll on him. I truly feel he is majorly depressed. I suggested today that he take something. He agreed to look into it so we will see what happens. I don't know where I want this to go, but I do still love him. I still believe in the vows we took 6 years ago. I know I am the fool for waiting while he acts like our marriage is disposable. I just think it is something more that is causing him to do this. I am not claiming to be totally the victim. I have my faults just like everyone else. I know I was difficult to live with at times.
So here I am waiting. What is the harm? Divorce is just so final and I am not sure I can be the one to take that step. I know he is unsure. He has dug this hole and now he can't figure out how to get out of it. I am trying to be the bigger person and help, but it so damn hard. I have no patience so I tend to get angry and hurt by him. It just seems like an impossible situation.
As Noah's day nears, I wish he could connect. He is the only person who gets it. He is the only person who loved him as much as I do. I know he misses him and carries his own guilt. At times, it is hard to see past my own feelings to help him with his. I wish there was some place for Dads of lost babies. Their needs seem to be different that ours. Does this place exist? I hope for his sake that he finds it.
Friday, November 28, 2008
Decisions No Parent Should Make
Once darkness falls, my mind begins filling with all that could have been. I know it is because I finally let myself go there. I let myself feel all of the sorrow, love, and pain for my lost son. Sometimes, all I feel is guilt.
I try to imagine Noah at Monkey's age right now. What would his life be like? Would it have any quality? When Noah was alive, my biggest fear was prolonging his life if there was no quality. Who I am to make that choice for him? I kept telling myself quality was more important than quantity. Maybe that was just my way of preparing myself for the inevitable. I knew he wouldn't be with us forever. That doesn't mean that I didn't dream of him growing up. During those long week's in the NICU, I tried to imagine him and Monkey. I knew he would never crawl or walk. I had decided that we would move. Buy a house with a large playroom just for my boys. I imagined their first day of kindergarten. I knew Monkey would look out for his little brother.
When I imagined all of this, I always blocked out the negative. I think of it now and see so many different things. First, what would have his development have been like? Would he ever be able to communicate? Would he be able to eat or would he always be tube fed? The seizures were my biggest fear. Would he suffer from them all of is life? Would he be in pain? I also think about the responsibility that would have fell on Monkey. Would he have grown up too fast having to be Noah's protector? People are cruel. I can only imagine the terrible things people would say about and to my boys.
I feel like a horrible person when I admit that I was very scared of Noah's survival. I wasn't scared of the challenge of caring for him. That was the easy part. I was so scared he would suffer. Scared he would have been suffering if we went to extreme measures to prolong his life. That would have been terribly selfish of us. On the other hand, who are we to play God with his life? Was it really our choice to not put him on a ventilator? Deciding on the DNR was the hardest choice I have ever made. We made that decision early in his life. We knew the odds were very low he would ever come off of it if he were to need it. I couldn't imagine that as life. That seemed very selfish because it would have been for us not him. I am not saying that someone who chooses that option is wrong. It just wasn't the right choice for us and Noah.
Many times, I think about that choice at the hospital that fateful night. They bagged him for a very long time. My insides were screaming to go with the ventilator, but I think I knew he was gone. I truly do feel like I would have just been prolonging his pain. The ventilator would have been for me. Honestly, I don't know that I could have made the decision to take him off.
I am trying to let go of this stuff. These are the things that haunted me during his life and now after his death. No matter what, they were choices that no parent should ever have to make for their child. I felt that all I could do is what we felt best for Noah. It doesn't make it any less difficult though. I can only hope I made the right choices and that he didn't suffer.
It will be two years in a few weeks. I can feel it. It is like the air is slowing being sucked out of the room. Everything either sends me into a rage or brings me to tears. Every now and then, a tender moment with Monkey sneaks in and takes me by surprise, which winds up making me cry. I hate being out of control and this grief is out my control right now. I am just trying to go with it and stop apologizing for it. I lost my son. I am allowed this. I can't help that everyone else chooses to ignore it and is uncomfortable with my anger and sorrow. I don't have the energy right now to worry about them. They will just have to fend for themselves because right now I am just focused on making it through the next few weeks. I want to think of him and only him. I miss him so much every part of me aches to hold him one last time.
I try to imagine Noah at Monkey's age right now. What would his life be like? Would it have any quality? When Noah was alive, my biggest fear was prolonging his life if there was no quality. Who I am to make that choice for him? I kept telling myself quality was more important than quantity. Maybe that was just my way of preparing myself for the inevitable. I knew he wouldn't be with us forever. That doesn't mean that I didn't dream of him growing up. During those long week's in the NICU, I tried to imagine him and Monkey. I knew he would never crawl or walk. I had decided that we would move. Buy a house with a large playroom just for my boys. I imagined their first day of kindergarten. I knew Monkey would look out for his little brother.
When I imagined all of this, I always blocked out the negative. I think of it now and see so many different things. First, what would have his development have been like? Would he ever be able to communicate? Would he be able to eat or would he always be tube fed? The seizures were my biggest fear. Would he suffer from them all of is life? Would he be in pain? I also think about the responsibility that would have fell on Monkey. Would he have grown up too fast having to be Noah's protector? People are cruel. I can only imagine the terrible things people would say about and to my boys.
I feel like a horrible person when I admit that I was very scared of Noah's survival. I wasn't scared of the challenge of caring for him. That was the easy part. I was so scared he would suffer. Scared he would have been suffering if we went to extreme measures to prolong his life. That would have been terribly selfish of us. On the other hand, who are we to play God with his life? Was it really our choice to not put him on a ventilator? Deciding on the DNR was the hardest choice I have ever made. We made that decision early in his life. We knew the odds were very low he would ever come off of it if he were to need it. I couldn't imagine that as life. That seemed very selfish because it would have been for us not him. I am not saying that someone who chooses that option is wrong. It just wasn't the right choice for us and Noah.
Many times, I think about that choice at the hospital that fateful night. They bagged him for a very long time. My insides were screaming to go with the ventilator, but I think I knew he was gone. I truly do feel like I would have just been prolonging his pain. The ventilator would have been for me. Honestly, I don't know that I could have made the decision to take him off.
I am trying to let go of this stuff. These are the things that haunted me during his life and now after his death. No matter what, they were choices that no parent should ever have to make for their child. I felt that all I could do is what we felt best for Noah. It doesn't make it any less difficult though. I can only hope I made the right choices and that he didn't suffer.
It will be two years in a few weeks. I can feel it. It is like the air is slowing being sucked out of the room. Everything either sends me into a rage or brings me to tears. Every now and then, a tender moment with Monkey sneaks in and takes me by surprise, which winds up making me cry. I hate being out of control and this grief is out my control right now. I am just trying to go with it and stop apologizing for it. I lost my son. I am allowed this. I can't help that everyone else chooses to ignore it and is uncomfortable with my anger and sorrow. I don't have the energy right now to worry about them. They will just have to fend for themselves because right now I am just focused on making it through the next few weeks. I want to think of him and only him. I miss him so much every part of me aches to hold him one last time.
Wednesday, November 26, 2008
Brotherly Love
Monkey and I went to see Noah yesterday. As we pulled into the part of the cemetery where Noah's ashes are buried this is how the conversation went.
Monkey: "Hi, Bubba".
Me: "Yes, this is Bubba".
Monkey: Begins blowing kisses to Noah's headstone...
Me: Choking back the tears the are going to break through. "That is so nice of you to blow Bubba kisses. They are floating up to him in heaven. He sends you his love also. He visits you in your dreams each night and gives you kisses while you sleep".
Monkey: "Love you Bubba".
Me: There is no stopping the tears...
Monkey: "Bubba, Bye, Bye"?
Me: "Noah is bye, bye. He is up in heaven watching over us".
Monkey: "Bye, Bye Bubba".
Me: Sobbing like a baby..
My two year old child gets it. He knows his brother and freely shows his love. I want him to know his dear brother, but to never hurt. I know that I cannot stop the hurt that may one day surface, but I want to always reassure him that it is not his fault and that Noah is always in our hearts. They are kindred spirits whether together or apart. Nothing can break the bond of brothers, especially twin brothers. I am pretty sure my heart was full of pride and broken all at once watching Monkey show his love. It is so unfair that they will never play together and grow up best friends.
Monkey: "Hi, Bubba".
Me: "Yes, this is Bubba".
Monkey: Begins blowing kisses to Noah's headstone...
Me: Choking back the tears the are going to break through. "That is so nice of you to blow Bubba kisses. They are floating up to him in heaven. He sends you his love also. He visits you in your dreams each night and gives you kisses while you sleep".
Monkey: "Love you Bubba".
Me: There is no stopping the tears...
Monkey: "Bubba, Bye, Bye"?
Me: "Noah is bye, bye. He is up in heaven watching over us".
Monkey: "Bye, Bye Bubba".
Me: Sobbing like a baby..
My two year old child gets it. He knows his brother and freely shows his love. I want him to know his dear brother, but to never hurt. I know that I cannot stop the hurt that may one day surface, but I want to always reassure him that it is not his fault and that Noah is always in our hearts. They are kindred spirits whether together or apart. Nothing can break the bond of brothers, especially twin brothers. I am pretty sure my heart was full of pride and broken all at once watching Monkey show his love. It is so unfair that they will never play together and grow up best friends.
The Turtle and The Monkey
Thanksgiving 2006
Monday, November 24, 2008
Okay, we'll have Christmas..
Shopping with Monkey is always an interesting experience. He is far from the typical kid screaming for a toy.
We went to Lowe's and looked at the Christmas stuff. The oohs and aahs were priceless as he saw an inflatable Mickey Mouse. It was almost cute enough to convince me to buy into tacky Christmas crap. I hate that stuff (no offense to those who love their inflatables), it is just not my thing. Monkey is in love with Mickey and has been since he was about 9 months old. I showed him a stuffed Mickey whose ears moved when he sang. Monkey hugged and gave it a kiss. I asked him if he wanted it and he in his usual way said no and pushed it away. He always does that. You show him a toy, he gets excited, you ask if he wants it and he says no.
We kept looking and he was extremely interested in a plastic Mickey snow globe. It is not even a real snow globe with water, but one with the fake stuff that spins around when you push the button. He played with it all through the store so I spent the $10 and bought it for him. My sweet boy looked at me with those huge brown eyes and said "Thank you Mama" over and over again. A two year old who is truly appreciative. He really amazes me. If he keeps that up, I will buy him whatever he wants. He melts me with that sweet, pouty look and the thank yous. In that moment, I decided that I would drag out all of the Christmas decorations for him. I had decided earlier that I wouldn't. I just didn't think I had the energy to face another holiday right now. Christmas is just a time of sorrow and hurt for me, but Monkey reminded me that sometimes the joy of the season is about a cheap, plastic Mickey snow globe and the wonder of a baby discovering this holiday for the very first time.
We went to Lowe's and looked at the Christmas stuff. The oohs and aahs were priceless as he saw an inflatable Mickey Mouse. It was almost cute enough to convince me to buy into tacky Christmas crap. I hate that stuff (no offense to those who love their inflatables), it is just not my thing. Monkey is in love with Mickey and has been since he was about 9 months old. I showed him a stuffed Mickey whose ears moved when he sang. Monkey hugged and gave it a kiss. I asked him if he wanted it and he in his usual way said no and pushed it away. He always does that. You show him a toy, he gets excited, you ask if he wants it and he says no.
We kept looking and he was extremely interested in a plastic Mickey snow globe. It is not even a real snow globe with water, but one with the fake stuff that spins around when you push the button. He played with it all through the store so I spent the $10 and bought it for him. My sweet boy looked at me with those huge brown eyes and said "Thank you Mama" over and over again. A two year old who is truly appreciative. He really amazes me. If he keeps that up, I will buy him whatever he wants. He melts me with that sweet, pouty look and the thank yous. In that moment, I decided that I would drag out all of the Christmas decorations for him. I had decided earlier that I wouldn't. I just didn't think I had the energy to face another holiday right now. Christmas is just a time of sorrow and hurt for me, but Monkey reminded me that sometimes the joy of the season is about a cheap, plastic Mickey snow globe and the wonder of a baby discovering this holiday for the very first time.
Saturday, November 22, 2008
A new room??
I was rocking Monkey today and found myself looking around his room. When Noah died it took months (about 8) for us to take down his crib. We put up a shelf to hold his favorite stuffed animals and mementos of his life. That shelf is still in Monkey's room. I look at it and wonder if it is fair to keep Noah's belongings in his room. From the outside, they are just stuffed animals, but they were his. I have thought about boxing them up, but I just can't do it. Is it wrong to keep the pictures of my boys together in their (Monkey's) room? I don't want him to grow up in his brother's shadow. It is a part of his life, but should not define him. How do I do this without scarring him in some way? I am thinking of redoing his entire room. Maybe it would be a clean start. A new room for just Monkey. The memories should be kept elsewhere. I just don't want to saddle him with any kind of guilt or sadness. I just can't quite bring myself to put what is left of Noah's life in a box.
Friday, November 21, 2008
Sick again..
Monkey is sick again. Yesterday I felt triumphant when they removed the PICC line and said it looked like the infection was gone. Even though he started running a fever Wednesday. They said it was viral. It would have to be with all the antibiotics running through his little body. Monkey sounds like a little, croaky frog. He has croup.
I knew it last night when I heard that little, raspy voice and hoarse cry. The coughing started this morning so I took him to the doctor we just saw 4 days ago. It is definitely croup. We started him on breathing treatments and steroids. Hopefully, it will not get too bad. This put us in the hospital last year at his time. When does Monkey and myself for that matter get a break?
That's it. I am putting him in a bubble...that should keep him healthy. Right?
I knew it last night when I heard that little, raspy voice and hoarse cry. The coughing started this morning so I took him to the doctor we just saw 4 days ago. It is definitely croup. We started him on breathing treatments and steroids. Hopefully, it will not get too bad. This put us in the hospital last year at his time. When does Monkey and myself for that matter get a break?
That's it. I am putting him in a bubble...that should keep him healthy. Right?
Monday, November 17, 2008
Broken
I reached the ped's floor today and she directed me to room 215. I slowly walked towards the door and had to stop. I felt weak and a little sick to my stomach. I started to enter and just couldn't do it. I asked her if we could go to another room. I felt stupid. I told her I know it is silly, I just can't do it today. I know she thinks I am crazy. I just wanted to cry. Today is the 17th. One month from today will be two years. How has two years pasted?
While getting Monkey's meds, my favorite nurse came to visit. She has been by my side through the last two years. She helped get Noah home and has always made sure that my boys are taken care of. She is actually the nurse manager. I told her about the Heparin incident. We talked for awhile and she asked about Noah. She then asked if my husband and I were going to have more kids. I just froze. I told her that things weren't going so well. She has been through a nasty divorce just about a year ago. She is the first person outside of my family and immediate friends that he is gone. She was so kind and supportive. It took all of my strength not to cry. Why can't I just open up and admit that it all sucks. That I can't do this anymore. Holding it together is killing me.
My husband came over tonight to see Monkey. It breaks my heart to see them together. Monkey is so excited to see him and I just want him to leave. I can't stand being near him. It is too painful. It just reminds me that he doesn't want me. He doesn't believe in our marriage. We had a terrible fight. I hate him for this, yet I am still here hanging on. Hoping and praying that what is left of my family will be together once again.
I just want to throw myself on the floor and surrender to this pain. If I do, will I be able to stop it? I just keep shoving it down. I can't take anymore sleepless nights and tears. I am broken and this pain is suffocating me. Do I just walk away? Where do I go from here?
While getting Monkey's meds, my favorite nurse came to visit. She has been by my side through the last two years. She helped get Noah home and has always made sure that my boys are taken care of. She is actually the nurse manager. I told her about the Heparin incident. We talked for awhile and she asked about Noah. She then asked if my husband and I were going to have more kids. I just froze. I told her that things weren't going so well. She has been through a nasty divorce just about a year ago. She is the first person outside of my family and immediate friends that he is gone. She was so kind and supportive. It took all of my strength not to cry. Why can't I just open up and admit that it all sucks. That I can't do this anymore. Holding it together is killing me.
My husband came over tonight to see Monkey. It breaks my heart to see them together. Monkey is so excited to see him and I just want him to leave. I can't stand being near him. It is too painful. It just reminds me that he doesn't want me. He doesn't believe in our marriage. We had a terrible fight. I hate him for this, yet I am still here hanging on. Hoping and praying that what is left of my family will be together once again.
I just want to throw myself on the floor and surrender to this pain. If I do, will I be able to stop it? I just keep shoving it down. I can't take anymore sleepless nights and tears. I am broken and this pain is suffocating me. Do I just walk away? Where do I go from here?
Did I mention that I hate hospitals??
Monkey went for his daily adventure to the hospital for his meds. I didn't know the nurse working and it bothered me. I thought I knew all of the pediatric nurses. I have a tendency to distrust those I don't know and who haven't taken care of my boys previously. She was nice enough so I just let it go.
She flushed his PICC line with saline and hooked up is antibiotics. When they finished, she flushed the PICC again and gives his solumedral (steriod). The last step is to flush with 1ml of Heparin. She had a syringe with 5 mls. Other nurses have done this before, but have always told me he just gets 1 ml. I dislike this practice, but they have been aware and have given the drug correctly. She begins to give it to him and I remind her he only gets 1 ml. She proceeds to give him 4-5 mls before looking at me with that look of knowing you have done something wrong. I was pissed. She told me that she had a boy with a line in his chest and he got 5 ml. She said she was confused. Now I was really pissed. My son is not that boy. It is not okay to screw up with my child. She kept apologizing with a shaky voice, but really I didn't care. It is not acceptable to make a drug mistake, to possibly hurt my child. She kept using this other patient as an excuse. Doesn't work for me. Sorry.
She told me it wouldn't hurt him. Why would I believe someone who just screwed up? I contacted my husband's aunt who is nurse and she reassured me that it wouldn't make him sick. This made me feel better, but it doesn't excuse incompetence. I will be filing a complaint with her boss and she will not take care of my son again. It is the principal of the matter. What if it had been drug that would have hurt him? I don't want someone making that mistake with my child or anyone else's child. How do I know that the boy she took care of previously wasn't 10 and triple Monkey's weight. From now on, I only want to see the amount of Heparin he should be given. No more syringes with more and they just give 1ml. Too much room for error.
Maybe I am overreacting, but I am an overprotective Mama bear. I am his advocate and must speak up when I feel my child is in danger. I am not a doctor and do not know the dosing of drugs for toddlers, but I make mental note every time something is prescribed. I look each time they give him something new. I may make the nurses crazy with my looking over their shoulders, but it is my right and duty to protect my child. It is hard to believe in this day and age such a risky practice is used.
She flushed his PICC line with saline and hooked up is antibiotics. When they finished, she flushed the PICC again and gives his solumedral (steriod). The last step is to flush with 1ml of Heparin. She had a syringe with 5 mls. Other nurses have done this before, but have always told me he just gets 1 ml. I dislike this practice, but they have been aware and have given the drug correctly. She begins to give it to him and I remind her he only gets 1 ml. She proceeds to give him 4-5 mls before looking at me with that look of knowing you have done something wrong. I was pissed. She told me that she had a boy with a line in his chest and he got 5 ml. She said she was confused. Now I was really pissed. My son is not that boy. It is not okay to screw up with my child. She kept apologizing with a shaky voice, but really I didn't care. It is not acceptable to make a drug mistake, to possibly hurt my child. She kept using this other patient as an excuse. Doesn't work for me. Sorry.
She told me it wouldn't hurt him. Why would I believe someone who just screwed up? I contacted my husband's aunt who is nurse and she reassured me that it wouldn't make him sick. This made me feel better, but it doesn't excuse incompetence. I will be filing a complaint with her boss and she will not take care of my son again. It is the principal of the matter. What if it had been drug that would have hurt him? I don't want someone making that mistake with my child or anyone else's child. How do I know that the boy she took care of previously wasn't 10 and triple Monkey's weight. From now on, I only want to see the amount of Heparin he should be given. No more syringes with more and they just give 1ml. Too much room for error.
Maybe I am overreacting, but I am an overprotective Mama bear. I am his advocate and must speak up when I feel my child is in danger. I am not a doctor and do not know the dosing of drugs for toddlers, but I make mental note every time something is prescribed. I look each time they give him something new. I may make the nurses crazy with my looking over their shoulders, but it is my right and duty to protect my child. It is hard to believe in this day and age such a risky practice is used.
Saturday, November 15, 2008
Fear
I live in a world of fear. Fear of losing my only living child. Fear of losing my family. Fear of losing my mind.
I have lived in a world of fear for a long time now. I can imagine all of the terrible things that can happen to me and the ones I love. At no time, did I ever know to fear an unknown, rare disease that would take my child from me.
I was always afraid to die. I was afraid of the pain, the unknown, being alone, and the idea that no one would remember me. I am still afraid to die, but it is different now. Now my fear is for my son having to live without me. This fear is torn though. What about the son who is not with me? Is he okay without me?
I dream he is strong and wise. He looks over me and his brother gently guiding us through life until we meet him again. I tell myself Monkey needs me more. Noah is in a place, whatever and wherever it may be, where is he safe and loved. He is whole and it doesn't matter if he is healthy because it his soul that is there not his earthly body. I dream he can feel my love. I must believe that my love for him can transcend what separates us.
___________________________________________________
I mourn for the life he lived and the life he never knew. I mourn for Monkey losing his twin, never knowing the bond between brothers. I mourn for me. For the son I only held for a short while. This grief is suffocating yet comforting all at once. It is isolating and full all at once. I have found this wonderful community of babylost mamas, who I may never meet in person, who have allowed me into their sisterhood and yet at the same time, am very alone in my everyday life. I have my family and friends, but they do not understand that while they discuss everyday things, my baby's life is running through my mind. They talk about the upcoming holidays and I am swept away to the cold December day saying goodbye to my sweet boy. They expect joy, but I don't believe I have truly felt joy since the day I found out I was expecting. Since then, the joy has been laced with fear and sadness. Grief is confusing and all consuming. I am not sure what drives me. I am not even sure how to reign in its power. It takes over when I am not looking and I become unable to speak or think.
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Today is day 4 of our daily trips to the hospital for Monkey's meds. We made a late night visit last night because his PICC line was bleeding and the dressing had to be changed. As I carried Monkey through the doors of the ER, I remembered carrying Noah through those doors. Each time I step foot in that building, I must tell myself that I will carry Monkey out with me. Just because we are there does not mean I will leave without him, not like I did without Noah. Each day, I take a deep breath and head for the pediatric floor. I force a smile and say hi to my favorite nurses. Nurses who stood by my side as I fought for Noah's life. Even they have moved on. They have not forgotten, but they, like everyone else, do not see my wounds. They do not feel my grief and fear. As I wait for them to direct me to room, I silently pray it will not be 215. I can't sit in that room with my living child and remember losing his brother. I must be strong and that is more than I can bear.
I have lived in a world of fear for a long time now. I can imagine all of the terrible things that can happen to me and the ones I love. At no time, did I ever know to fear an unknown, rare disease that would take my child from me.
I was always afraid to die. I was afraid of the pain, the unknown, being alone, and the idea that no one would remember me. I am still afraid to die, but it is different now. Now my fear is for my son having to live without me. This fear is torn though. What about the son who is not with me? Is he okay without me?
I dream he is strong and wise. He looks over me and his brother gently guiding us through life until we meet him again. I tell myself Monkey needs me more. Noah is in a place, whatever and wherever it may be, where is he safe and loved. He is whole and it doesn't matter if he is healthy because it his soul that is there not his earthly body. I dream he can feel my love. I must believe that my love for him can transcend what separates us.
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I mourn for the life he lived and the life he never knew. I mourn for Monkey losing his twin, never knowing the bond between brothers. I mourn for me. For the son I only held for a short while. This grief is suffocating yet comforting all at once. It is isolating and full all at once. I have found this wonderful community of babylost mamas, who I may never meet in person, who have allowed me into their sisterhood and yet at the same time, am very alone in my everyday life. I have my family and friends, but they do not understand that while they discuss everyday things, my baby's life is running through my mind. They talk about the upcoming holidays and I am swept away to the cold December day saying goodbye to my sweet boy. They expect joy, but I don't believe I have truly felt joy since the day I found out I was expecting. Since then, the joy has been laced with fear and sadness. Grief is confusing and all consuming. I am not sure what drives me. I am not even sure how to reign in its power. It takes over when I am not looking and I become unable to speak or think.
__________________________________________________
Today is day 4 of our daily trips to the hospital for Monkey's meds. We made a late night visit last night because his PICC line was bleeding and the dressing had to be changed. As I carried Monkey through the doors of the ER, I remembered carrying Noah through those doors. Each time I step foot in that building, I must tell myself that I will carry Monkey out with me. Just because we are there does not mean I will leave without him, not like I did without Noah. Each day, I take a deep breath and head for the pediatric floor. I force a smile and say hi to my favorite nurses. Nurses who stood by my side as I fought for Noah's life. Even they have moved on. They have not forgotten, but they, like everyone else, do not see my wounds. They do not feel my grief and fear. As I wait for them to direct me to room, I silently pray it will not be 215. I can't sit in that room with my living child and remember losing his brother. I must be strong and that is more than I can bear.
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