The meeting came and went, I went to work, my wife went to do research. We sat down with the doctor not knowing what to expect. We were called in by his nurse after Morgan had a phone consultation from another doctor in the practice. We were wondering if he found something out about our delivery or Marcellus that they missed before, the magical piece that would tie this all together. That is what we were hoping for, kinda.
Before the meeting his death remained a mystery, the blood clot caused the NEC which in turn killed him. But what caused the blood clot? The neonatologist said a 'cascade of events triggered the blood clot.' What cascade of events? Physical events, biological events? We were not grabbing him and flipping him around the room like a bunch of circus performers, we do not know what those cascade of events could ever be. What about the premature birth, sure 50% of premature birth is undefined. It just happens. No it just does not happen, SOMETHING happens, but we do not know yet. We do not know medical science well enough to explain half of premature birth, why babies get NEC, or why he got blood clots.
Going into the meeting I was hoping for "this is why you went into labor, which was a cause of his blood clots, and this is how you stop it for next time." That would have answered all my 'how' questions in one fell swoop. Of course not the 'why' questions that I ask every day. On the other side we could have found out that my wife delivered early because of a condition that would present itself in every pregnancy hereafter and our babies lives would always be in jeopardy like Marcellus. That would have been the answers I would not want to find out. What we really found out is Marcellus was born early because 50% of preterm labor just happens, it is unexplained. We know what we are doing for next time, weekly progesterone shots which will reduce the chance of preterm labor by 70% in her. We will also have weekly cervical ultrasounds to check the cervix length to see if she has a degree of cervical inefficiency. This is the plan of the Maternal Fetal specialist at the largest hospital in Raleigh. The same hospital that Marcellus delivered at, stayed, and unfortunately died in. This is not the plan of some family doctor who has no idea about birth, we talked with the Dr. who knew more about preterm labor than anyone in this city probably. I have confidence in him. Not an arrogant confidence that we will never deliver prematurely again but a confidence that it MIGHT not happen again. Before the meeting I was sure we would be plagued forever by NICU's, preemie clothes, and breathing machines. A big fear of mine now. But I need to keep it in my mind that it could happen again, or we could lose our baby even before its born. Speaking of our baby he said we could have one 18-24 months after Marcellus was born. That would mean trying for one the second half of this year.
I want a baby, do not get me wrong. I want a baby so bad it eclipses any want I ever had, the Nintendo, going to a certain college, turning 21, the wedding, all pale in comparison to wanting a baby. I want a child with my wife, I want us to be a family....on this earth. But I do not want a child before we are ready. I need to grieve for Marcellus, I need to think about him as my ever being and not as my past. I do not want to be secretly hoping that our future baby is actually Marcellus and we would get the chance to raise him we so desperately yearn for every day. It would be unfair to both Marcellus and our new child to try too soon. We just know what we are to do when we are ready.
I am still a father, I do not need a baby on this earth to show me that. I just want the opportunity to teach a little child the way I feel a father should teach their child not the other way around. Marcellus taught me so much that I will never be able to thank him enough for that, I just wanted to opportunity to teach him.
I miss him so much, I love him so deeply I cannot express. He is forever my firstborn son, he resembles what is all good and wonderful in this world for me. I will always be able to smile thinking of my wonderful son Marcellus. I miss you buddy, more than anyone could ever miss someone on this earth.
Thursday, January 12, 2012
Wednesday, January 11, 2012
Specialists
Ww have a meeting here soon with a Maternal Fetal Specialist. Someone who is going to throw a bunch of words and conjectures at us about pregnancy. Morgan and I were laying in bed last night really thinking of when we could/should try again. Of course most people say "you are young, you have time for more kids." Or "have another one sooner rather than later." These people mean well but they miss the mark (I originally wrote 'full of shit' but decided to be gentle on them). I do not feel like we are young, I feel like our lives are over, that we eclipsed every chance to have a child with this one opportunity. Being a parent and then having that ripped away ripped our future from our lives. I cannot remember what it was like before Marcellus and I cannot fathom having a 'normal' life after. Any possibility of being a father to living children does not register with me. Even though it is very possible. Technically she has had 2 out of 2 pregnancies that were successful, we just do not know how/why Marcellus was born or died the way he did. Technicalities may matter to other people but for me it feels like the largest failure in the world.
When people tell us to have another child they say that because they know we are young, healthy, and want a child so bad. So they feel like they need to validate our wants and needs by encouraging us to have a child. But maybe we are not ready, sure our bodies may be but what about our psyche. We are not waiting until we can have a healthy child, we have to wait until we can have a sick or possibly another dead child. I know that sounds morbid or gross but its a reality. Any notions of normal, romantic pregnancies bearing 9 pound fat children are gone. We are in a world where babies die, we need to prepare to lose another child before we can try. Now we are not ready, that may change in 2 months, 6 months, or a year, we do not know. But for the record, preparing for the possibility of losing a child is not an open invitation to test that preparation God, Allah, Satan, or whomever else is reading this.
For now I have to get ready for this meeting with the Dr. I will update what he says about us and our future children. Wish us the best of luck.
When people tell us to have another child they say that because they know we are young, healthy, and want a child so bad. So they feel like they need to validate our wants and needs by encouraging us to have a child. But maybe we are not ready, sure our bodies may be but what about our psyche. We are not waiting until we can have a healthy child, we have to wait until we can have a sick or possibly another dead child. I know that sounds morbid or gross but its a reality. Any notions of normal, romantic pregnancies bearing 9 pound fat children are gone. We are in a world where babies die, we need to prepare to lose another child before we can try. Now we are not ready, that may change in 2 months, 6 months, or a year, we do not know. But for the record, preparing for the possibility of losing a child is not an open invitation to test that preparation God, Allah, Satan, or whomever else is reading this.
For now I have to get ready for this meeting with the Dr. I will update what he says about us and our future children. Wish us the best of luck.
Sunday, January 8, 2012
My meditation room....
Stinks of apple cinnamon.
I have been working on the bedroom that would have been officially Marcellus's. However since we were going to use a co-sleeper we were not going to be using this room as an official nursery until he got a lil older. Well he is not actively participating in living at the moment so we have to decide what to do with the room. What we really had to do was figure his stuff out.
Since Marcellus came early we accumulated a ton of stuff very quickly. A phenomenon called 'have a baby, get a ton of shit.' With him being in the NICU his short but eventful life we just piled off his stuff in the room willy-nilly. After he died and we came back from Minnesota the room became a huge trigger. My wife could not walk in there without having a full blown panic attack. I could not take more than a couple minutes in there before I started sobbing like a schoolgirl. But we kind of needed the room, with us both going to school in the Spring we would need the space to distance ourselves. Our place is big downstairs but open. I also needed a zen area, a retreat. We do not have a garage for that purpose. That meant taking care of his stuff.
If the water is cold you just jump in and get it over with. Thats what I did. I just jumped in, dealt with the shock and did it. It hurt, I cried, I threw things. I broke down over a bib, a stuffed animal that plays a lullaby as you tug its tail, outfits we bought him, blankets purchased by his Grandfather. Finally after dragging myself along I completed the task. I made a Marcellus drawer in the antique dresser that houses the stuff we will never get rid of or let the other children (God willing) use. I then packed up the stuff that had no direct association with my beautiful Son to be hopefully unpacked with joy and set up for use in the future.
It was hard to see all of his stuff in the closet. He will never use it. It is just gathering dust, waiting for its turn to do its duty. Sometimes I want to set it all up, to put the car seat in the car, take the stroller outside and go for a walk and see how it feels to be like everyone else in that other world out there. Other times I want to set everything up and take a baseball bat to it in a fit of glorious rage. But I do not dare unpack it in fear I will never put it back. Grief has a way of making you hang on to dreams longer than you care to wish.
I have cleaned up the papers and the mess, bought a filing cabinet and started to declutter. I found an apple cinnamon holiday yankee candle that I lit as I sit in the executive chair drinking my herbal tea. I have my youtube playing my Marcellus song list and the dog is laying in a makeshift bed on the floor. I need to set up some pictures so I can look at him as I work. I want to put up the one of his mommy holding him and smiling at me with such happiness that makes my heart melt. There is still work to do up here, and I may never finish, I just wanted to be in the room he should be in. I want to be able to pause and reflect on him, to appreciate the time I did have him and lament the long time I do not. The meditation room is not a healing space, it is a coping device, a way to help me travel through this grief. God I miss him so much.
I have been working on the bedroom that would have been officially Marcellus's. However since we were going to use a co-sleeper we were not going to be using this room as an official nursery until he got a lil older. Well he is not actively participating in living at the moment so we have to decide what to do with the room. What we really had to do was figure his stuff out.
Since Marcellus came early we accumulated a ton of stuff very quickly. A phenomenon called 'have a baby, get a ton of shit.' With him being in the NICU his short but eventful life we just piled off his stuff in the room willy-nilly. After he died and we came back from Minnesota the room became a huge trigger. My wife could not walk in there without having a full blown panic attack. I could not take more than a couple minutes in there before I started sobbing like a schoolgirl. But we kind of needed the room, with us both going to school in the Spring we would need the space to distance ourselves. Our place is big downstairs but open. I also needed a zen area, a retreat. We do not have a garage for that purpose. That meant taking care of his stuff.
If the water is cold you just jump in and get it over with. Thats what I did. I just jumped in, dealt with the shock and did it. It hurt, I cried, I threw things. I broke down over a bib, a stuffed animal that plays a lullaby as you tug its tail, outfits we bought him, blankets purchased by his Grandfather. Finally after dragging myself along I completed the task. I made a Marcellus drawer in the antique dresser that houses the stuff we will never get rid of or let the other children (God willing) use. I then packed up the stuff that had no direct association with my beautiful Son to be hopefully unpacked with joy and set up for use in the future.
It was hard to see all of his stuff in the closet. He will never use it. It is just gathering dust, waiting for its turn to do its duty. Sometimes I want to set it all up, to put the car seat in the car, take the stroller outside and go for a walk and see how it feels to be like everyone else in that other world out there. Other times I want to set everything up and take a baseball bat to it in a fit of glorious rage. But I do not dare unpack it in fear I will never put it back. Grief has a way of making you hang on to dreams longer than you care to wish.
I have cleaned up the papers and the mess, bought a filing cabinet and started to declutter. I found an apple cinnamon holiday yankee candle that I lit as I sit in the executive chair drinking my herbal tea. I have my youtube playing my Marcellus song list and the dog is laying in a makeshift bed on the floor. I need to set up some pictures so I can look at him as I work. I want to put up the one of his mommy holding him and smiling at me with such happiness that makes my heart melt. There is still work to do up here, and I may never finish, I just wanted to be in the room he should be in. I want to be able to pause and reflect on him, to appreciate the time I did have him and lament the long time I do not. The meditation room is not a healing space, it is a coping device, a way to help me travel through this grief. God I miss him so much.
Friday, January 6, 2012
Support for when you are drowning.
It has been a bit since I have written in here. I am sure after a while blogging becomes a little redundant. But really I have not had much to say. I have been going through this past week with appointments and school and now work for the next two days. The appointments were with counselors, a couple we met, Patty, and Parent Care.
I have a hard time talking to my friends and family about this. I feel like when I get to the phone or see them in person I have to be concerned about them, I have to direct my conversation towards them. But really I should not have to I just do. It is hard for me to open up to them because I do not want to burden them with my emotions. I know that is not logical, that our friendships and families operate on a give and take relationship and that my baby is dead, I have a right to open up to them. I just cannot shake how I feel when I talk to them, it just is how it goes. I am sorry to them who cannot feel more connected to me, I am sorry to my wife who has to shoulder a larger piece of my grief because of this and I am sorry for myself because I am not seeking the help I could use.
I do like to be surrounded by people who have done it before. I can open up to them. At Parent Care my heart just opens and my feelings spill out in front of strangers. When we talk to Mike and Karen I can be honest and ashamed. When the counselors ask the questions I can respond honestly and with a thought out answer.
I cannot open up to friends who want to listen, to coworkers who dont want to listen, and to family who seem so far away. Mike offered to meet me anytime I wanted to talk, he is 20 years out of a similar situation that I am in. He is a wonderful guy with a lot of insight but not too far from his grief that he only offers the "trust me, it will get better as you get older." He still can tap into his grief from 20 years ago and offer similarities. I am going to take him up on the offer. I really feel that grief cannot be done alone, even though the actual grieving has to be done alone, you need a dedicated support team to keep your head above he water.
Grief is drowning, you are in the ocean kicking with all your might trying to fight the waves. You quickly get exhausted. Your only option then is to ask for help or slip under the waves never to return. Some slip under the wave never to be seen again, others ask for help. It is tough to do either, to slip under or accept the help of someone else. I need help, I need to accept someones help before I slip under the waves.
My wife and I have been supporting each other, especially when we thought we were so alone in this world. When Marcellus left he took a huge part of our hearts with him and we can never get those back. So my wife and I spent a lot of time grieving together since only us knew each others pain. To each other we both represented Marcellus, we were the ones with him the most. When we held each other we held a piece of him, we held onto the memories we had of him. Now that we have left the shock and numbness and we know he is gone forever my wife is my life partner. She is the one I need to count on for the rest of my life. She shares in our memories of him, but she is not a symbol of that. Marcellus is now the symbol for me. I need my wife differently now, I need her to hold me when I need it. I feel so empty now, It feels like my soul has a huge hole in it and my energy is spilling out. My chest feels cold, a void, empty. I have to begin now trying to live with the void. To weave Marcellus into my soul and help me guide me through life with this void. My wife is instrumental to my well being, she is the first person keeping me a float, but she cannot do it herself.
I need to bring Marcellus closer to my heart. To weave him into the frayed fabric of my life. The fabric that feels like it has spent its winter in the road covered in salt, sand, slush, and dirt. Countless tires ran it over mangling it into an unrecognizable lump. I somehow have to pick up this fabric and recreate it into a life, and Marcellus needs to help me with it. Help me buddy, help me pick this life up off the road.
I have a hard time talking to my friends and family about this. I feel like when I get to the phone or see them in person I have to be concerned about them, I have to direct my conversation towards them. But really I should not have to I just do. It is hard for me to open up to them because I do not want to burden them with my emotions. I know that is not logical, that our friendships and families operate on a give and take relationship and that my baby is dead, I have a right to open up to them. I just cannot shake how I feel when I talk to them, it just is how it goes. I am sorry to them who cannot feel more connected to me, I am sorry to my wife who has to shoulder a larger piece of my grief because of this and I am sorry for myself because I am not seeking the help I could use.
I do like to be surrounded by people who have done it before. I can open up to them. At Parent Care my heart just opens and my feelings spill out in front of strangers. When we talk to Mike and Karen I can be honest and ashamed. When the counselors ask the questions I can respond honestly and with a thought out answer.
I cannot open up to friends who want to listen, to coworkers who dont want to listen, and to family who seem so far away. Mike offered to meet me anytime I wanted to talk, he is 20 years out of a similar situation that I am in. He is a wonderful guy with a lot of insight but not too far from his grief that he only offers the "trust me, it will get better as you get older." He still can tap into his grief from 20 years ago and offer similarities. I am going to take him up on the offer. I really feel that grief cannot be done alone, even though the actual grieving has to be done alone, you need a dedicated support team to keep your head above he water.
Grief is drowning, you are in the ocean kicking with all your might trying to fight the waves. You quickly get exhausted. Your only option then is to ask for help or slip under the waves never to return. Some slip under the wave never to be seen again, others ask for help. It is tough to do either, to slip under or accept the help of someone else. I need help, I need to accept someones help before I slip under the waves.
My wife and I have been supporting each other, especially when we thought we were so alone in this world. When Marcellus left he took a huge part of our hearts with him and we can never get those back. So my wife and I spent a lot of time grieving together since only us knew each others pain. To each other we both represented Marcellus, we were the ones with him the most. When we held each other we held a piece of him, we held onto the memories we had of him. Now that we have left the shock and numbness and we know he is gone forever my wife is my life partner. She is the one I need to count on for the rest of my life. She shares in our memories of him, but she is not a symbol of that. Marcellus is now the symbol for me. I need my wife differently now, I need her to hold me when I need it. I feel so empty now, It feels like my soul has a huge hole in it and my energy is spilling out. My chest feels cold, a void, empty. I have to begin now trying to live with the void. To weave Marcellus into my soul and help me guide me through life with this void. My wife is instrumental to my well being, she is the first person keeping me a float, but she cannot do it herself.
I need to bring Marcellus closer to my heart. To weave him into the frayed fabric of my life. The fabric that feels like it has spent its winter in the road covered in salt, sand, slush, and dirt. Countless tires ran it over mangling it into an unrecognizable lump. I somehow have to pick up this fabric and recreate it into a life, and Marcellus needs to help me with it. Help me buddy, help me pick this life up off the road.
Sunday, January 1, 2012
Sometimes I just need to sit and cry.
It is hard to be here, it is hard to sit on this couch with tears streaming down my face searching online for some solace with this. I miss him, I miss my son so much it hurts. It hurts through the entire core of my body. I do not always want to post on here about insightful things when dealing with my grief. Sometimes I want to sit and ramble on about what I am feeling now. What I am feeling now is alone. Lonely, completely alone. No one is reaching out to me, rubbing my back and telling me it will be ok. I do not need that. I just need to sit on this couch, drink my tea, pull up sad songs on youtube and cry. I miss Marcellus so much. I cannot believe he is gone. That he left. How can I do this without him? How can I do an entire year without my son. To relive all the months coming that he was with us. What am I going to do when October 28th comes around? Or November 9th? What will I do when these dates come when he is gone. I just need him here. I just want him here. I just need him so bad my heart hurts so much. I hate having to try to remember his face. I hate having to try to remember that he is my son. I hate having to remind myself that I am a father. I hate seeing all the successful parents out there unhappy with their kids. I want to tell them that I am so jealous of anyone with children. I hurt so bad right now. Its just full on waves of pain rippling through my body and soul. I do not know why he had to leave me. I do not know why he had to go be with God and leave me without my son. I wanted to be his father so bad. I wanted to be the dorky dad wearing the baby carrier taking him into the mens restroom to change his diaper on the koala changing station that no other father ever uses. I wanted to be the dad at the babywearing meetups. I wanted to be the dad with his baby so damned proud to have him here. To be able to hug, hold, and kiss him. I will never be able to kiss him again. He is dead, he is gone. I miss him so terribly much. I love you.
~He Lost A Baby Too~
Thank you for being by my side every step of this difficult journey. I could not do this without you. I love you very much and I love our son very much!"
Friday, December 30, 2011
The rambling taboo subject of dead babies
It has been over 7 weeks since he died. I say died because terms like 'passed on' or 'he left us' tend to hide the magnitude of what really happened. People do not like to hear about dead babies, it is a taboo subject when death in general is frowned upon in our society in general. Our country spends billions on healthcare for the elderly. Now before you call me a genocidal maniac and Dr. Kevorkian's right hand man, listen to what I mean. We are so concerned about prolonging life in this country. The goal is not the quality but the length. My grandmother was in a nursing home due to a degenerative disease, she was total care. Absolutely could not do a thing for herself. What kind of life was that? I have seen others in nursing home forgotten by their family just being cared for by overworked nursing aides. These people are kept alive basically as a symbol for their families, to escape the inevitable. Say there were no nursing homes, just acute care like hospitals and we cared for our elderly parents in our own home without all the intrusive medical treatments. What if these people who were in the home and not the nursing home died because they did not have all the care they provide. Is that a bad thing? To die at home while you can still perform some of your own acts of daily living and surrounded by family in a safe environment? Or would you rather sit in a nursing home for 5 years wallowing in your own diaper because they are too busy to change you. Me I prefer to die at home, with my family. I want them all to be surrounding my bed as I grip the hand of my grandson and whisper in his ear where I buried my treasure. I do not want to die in a nursing home. I told Marcellus I would though, for him. I told him the day he died that I would trade places with him, that he could live and I would wallow in a nursing home for years as he looked over me. But he did not live. He did not trade places with me, I could not take him away from that.
So I had to watch my baby die. And plunge myself in a world full of dead babies. A secret society of sorts, parents who lost children. A such taboo subject that people do not know what to say to you about it. I dont want to be in this society, I do not want to know what is comforting and what is not comforting to say to people in grief. A couple weeks before Marcellus was born we went to a pig pickin hosted by some of my brewing buddies. One of my brewing buddies lost his 2 year old unexpectedly and this was their first public function. I avoided them, I had no idea how to approach them. Her death affected me, I felt very sad to hear about it. I felt like I needed to go to the funeral for some reason. I saw the mother walking by the cars, visibly lost in thought. I thought about walking up to her and trying to give her sympathetic words. I am so glad I did not now. Nothing I could have said would have made it any better to her. She wanted to be alone, and me approaching her would have voided that want and made her upset. Now I know what to say to them because I know what they are going through. It sucks. It is no longer taboo to me.
I told my best friend who I finally talked to last night about what I am going through. He admitted it is hard to know what to say and he has never been exposed to something like this. I told him straight up what I wanted him to do. I told him that never to worry about bringing it up to us because we are always lost in thought about it. People say things like they do not want to upset you by bringing it up. Like we are going through our day happy as two bees in a sunflower field until you brought up our dead baby. We are constantly upset about it. Its the first thing that we wake up to and the last thing that we fall asleep to. Marcellus is always in my thoughts because he is always in my heart. I told him I would carry him with me. If I could not raise him I would live for him.
Marcellus is not taboo, he is not forgotten, he is not passed on. He is dead. His body is lying in a box buried in the cold ground. Sometimes I lay in bed and put my hands over my eyes to see total darkness so I could know a little what it is like in there where he is. When I do that I slowly let a little light in and imagine what it would be like to be called home with Jesus. I hope he is smiling down on us, giving our hearts a hug. I miss my son so terribly much it hurts, it hurts right below my heart in a knot. Last night I sobbed uncontrollably because I missed him so much. No words could have made me feel better, I just needed to cry. I will cry my tears for him. He deserves that from me. I love him so much.
So I had to watch my baby die. And plunge myself in a world full of dead babies. A secret society of sorts, parents who lost children. A such taboo subject that people do not know what to say to you about it. I dont want to be in this society, I do not want to know what is comforting and what is not comforting to say to people in grief. A couple weeks before Marcellus was born we went to a pig pickin hosted by some of my brewing buddies. One of my brewing buddies lost his 2 year old unexpectedly and this was their first public function. I avoided them, I had no idea how to approach them. Her death affected me, I felt very sad to hear about it. I felt like I needed to go to the funeral for some reason. I saw the mother walking by the cars, visibly lost in thought. I thought about walking up to her and trying to give her sympathetic words. I am so glad I did not now. Nothing I could have said would have made it any better to her. She wanted to be alone, and me approaching her would have voided that want and made her upset. Now I know what to say to them because I know what they are going through. It sucks. It is no longer taboo to me.
I told my best friend who I finally talked to last night about what I am going through. He admitted it is hard to know what to say and he has never been exposed to something like this. I told him straight up what I wanted him to do. I told him that never to worry about bringing it up to us because we are always lost in thought about it. People say things like they do not want to upset you by bringing it up. Like we are going through our day happy as two bees in a sunflower field until you brought up our dead baby. We are constantly upset about it. Its the first thing that we wake up to and the last thing that we fall asleep to. Marcellus is always in my thoughts because he is always in my heart. I told him I would carry him with me. If I could not raise him I would live for him.
Marcellus is not taboo, he is not forgotten, he is not passed on. He is dead. His body is lying in a box buried in the cold ground. Sometimes I lay in bed and put my hands over my eyes to see total darkness so I could know a little what it is like in there where he is. When I do that I slowly let a little light in and imagine what it would be like to be called home with Jesus. I hope he is smiling down on us, giving our hearts a hug. I miss my son so terribly much it hurts, it hurts right below my heart in a knot. Last night I sobbed uncontrollably because I missed him so much. No words could have made me feel better, I just needed to cry. I will cry my tears for him. He deserves that from me. I love him so much.
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