Monday, April 30, 2012
The Chaotic Steps of Grieving
First off, I have to say that I don't much like the new Blogger set up; I am not that computer savvy and I am having a hard time getting used to it!
Well, at least I can view my stats and at least I know that a few people are reading this! Thanks!
One thing I have learned from my own experience with grief is that is does not follow any particular pattern. The stages of grief are emphasized and the fact that there does not have to be any order to the stages is barely mentioned. I am surprised that, some days are really OK and I think: "wow, I must finally be feeling better" and then I feel terrible again. I could feel fine and then a few hours later feel terrible...
One thing I have found is that things are less fuzzy, now. I can remember things much clearer and sometimes memories pop up from out of nowhere. I find my mind wandering and I find myself thinking about things to which I never gave much attention. Sometimes I think about things that cause me to feel a lot of pain like- whether or my baby feel any pain when she died. Then, even though it happened 8 months ago, I cry about it as if it happened yesterday.
Going to the cemetery is also difficult- especially after the whole Easter decoration debacle. I have to say, though, that the Catholic Cemeteries Association (CCA) got back to me and asked me to meet with a representative. I plan to do so at the end of the month- after my oldest child celebrated her First Communion. That is something I have to do now- always plan ahead so that nothing interferes with things like that. I know that dealing with it will only cause me to feel terrible pain but I also know that my daughter is counting on me to make her a dress and to be happy on one of the happiest day of her life... My life revolves around pain.
My husband and I have decided, though, that we will move her to another cemetery when we have the money. CCA has their rules and, in all fairness, we must abide them if she is to be kept there. Since their rules just don't work well for us, we believe the best thing would be to move her.
I think what gets me, though, is that people really don't have a choice. If you are a Catholic, you should be buried in a Catholic cemetery. Just yesterday there was a CCA add left in the back of our church! So, people want to be good Catholics and they consent to be buried there. This means that CCA can impose and rule- regardless of how absurd or unfair- and people have to obey.
So, now they want to charge $350.00 (min.) for a concrete slab that goes under a stone in order to stop stones from becoming uneven due to the freezing and thawing nature of the ground. The thing is that no one knows about this when they bury a loved one there. We found out about it when we went looking at stones. The woman at the shop told us that it is a new rule and that it also makes no sense but that it is the rule and so we have to abide by it. They basically do this because they can- because all good Catholics want to be buried in a Catholic cemetery.
At the asme time, though, all good Catholics should not throw away things like rosaries, crucifixes with the likeness of Our Lord on them and blessed palms (this is actually considered sacrilege). Good Catholics should know that the Easter season does not end at Easter but instead at Pentacost and therefore it is right to celebrate the risen Lord until then. Any good Catholic should know that the sacred must always trump the secular and that things like being able to maintain the lawn is not as important as celebrating the Resurrection in ALL its glory (they do have weed- whackers that can easily clean things up around stands)... Most of all, a good Catholic should not take advantage financially of grieving family members when they are most vulnerable!
So, this seems like a Catholic cemetery in name, only and not in practice therefore I believe I have the right not to support it in any way, shape or form.
In any case, this was something that caused me to go from feeling fine to feeling quite bad. I couldn't sleep after knowing that they had thrown out a rosary that was a gift from my oldest child to my dead baby. We had prayed on that rosary several times and it was terrible to know that they had thrown it away. Also. I used to pray the rosary every morning with Barbara and so the fact that I left a rosary there was very meaningful.
We didn't go to the cemetery the Sunday after the debacle; I was far too upset and I wasn't ready for the kids to know that they had taken Barbara's things and thrown them away. We went yesterday, though, and my 2 1/2 year old asked where Barbara's things were. We told her that they have taken them away. She then asked if we could have them back and I had to tell her that they had been thrown out and that we would never get her things back again.
Just like I will never get her back again.
How can anyone describe the pain of losing a child? It isn't something that can be done. Things like throwing away a wreath become a big deal.
Feeling a life slip away from you when the only thing you want to do is keep the life from slipping away is the most odd thing to feel. Sometimes I look back on her last few moments and I think that maybe if I had begged God more or if I had just held onto her tighter she would still be here. Maybe if I had been a better person or... it goes on and on. I don't think I ever realized how helpless I was as a human being until she died in my arms.
When I think about the four weeks of hell spent in the NICU, I tend to believe that my daughter is entitled to an Easter wreath.
At least now I no longer always feel guilty when I am feeling OK. I used to feel guilty for feeling happy- like I don't ever deserve to be happy again since my baby died. It is freeing to feel happy. At the same time, it is a new feeling after so many months of sorrow. I feel somehow liberated and, in away, this in itself makes me feel sad because I don't want to be liberated from Barbara. I feel as if my sorrow is all I have that keeps her with me...
Anyhow, there is no logical pattern to grief- that is for sure. I am starting to think that grief- like love and extreme anger- defy all logic. I also know that certain things are set- backs to feeling better... Avoiding these setbacks, though, is the same thing as avoiding life (which I obviously can't do) therefore I am starting to think that these set- backs are part of it all...
Everyone said that God had a plan...I have to trust that this is all a part of it!
Wednesday, April 18, 2012
Catholic Cemeteries Association of Cleveland
Today I was chatting with my cousin online and he mentioned that he had been at the cemetery yesterday. I asked him if Barbara's Easter things were still there and he replied that they would be picked up tomorrow so I had my mother run to the cemetery to get them before they were picked up and thrown away.
What I didn't know was that my cousin knew that they were gone and, in order to protect my feelings, asked me to have my mom call him. So, she knew that when she went there, they would be gone.
On thing that had been at her grave was a rosary that had lovingly been donated to her by my oldest child. I don't know how I will explain this to her. Two blessed palms were also taken as were two fake floral arrangements, a crucifix and a little stuffed rabbit from her grandmother (my mother).
As Catholics, we have to be buried in Catholic cemeteries whenever possible. This limits where our bodies can be put... So, we have no choice. Well, I am sick of it.
Here is an email I sent to CCAC a few minutes ago:
To Whom It May Concern at Catholic Cemeteries Association:
My husband and I drive every Sunday from Kent to your Brookpark cemetery in order to honor the remains of our deceased infant. Because my husband and I were so distraught when our baby died, relatives were kind enough to take care of the details surrounding her burial and, although we are grateful for this, had we been aware of the rules and regulations in your cemeteries, we would have looked elsewhere to have her buried.
We did not know that, in addition to a stone, we would have to pay for a concrete slab as well. This presents an issue for us as this makes getting our child a stone financially impossible. While $350.00 (min) may not seem like a big deal to you, it is to us and I am certain to many other people who have loved ones buried in your cemetery. I know that we are not the only people who are upset about this; at the same time we were learning about it (from Milano Co.) another woman was also hearing about it for the first time. She was elderly and, presumably, had buried her husband or child. She was so shocked and confused and, despite my own anger and pain, I felt bad for her. The sick thing is that people who have just lost a loved one are vulnerable and not thinking clearly. That, combined with the fact that, as Catholics, we must be buried in a Catholic cemetery, makes it all too easy for people like you to take advantage of people like us.
We also did not know that Easter decorations would be taken down so soon after Easter. While I heard today that there were signs posted, I never saw any. Furthermore, the Easter season officially does not end until Pentacost, which is still weeks away.
The Easter decorations we left for our child meant something to us; these things were not rubbish to be thrown away. Moreover, there were consecrated objects (a rosary that was a gift from our oldest child and two blessed palms) that were taken and, presumably, thrown away. This is sacrilege (CCC 2120). While my mother was at the cemetery hoping to get there in time to take our daughter's things down, other mourners were there and were equally as upset and angry as I am.
While I understand the need for cleanliness, hygiene and fire safety, I also feel that some of your rules and regulations go well beyond safety and any sort of rational thought. I have to wonder what sort of heartless person can think it is OK to remove personal objects from the grave of a baby- or the grave of anyone for that matter. I suppose it is all business to you.
I want you to know that, instead of shelling out an extra $350.00 for a concrete slab for a stone to rest on, the $350.00 will be put, instead, towards moving her out of your cemetery. I want you also to know that I will tell everyone I know not to bury their loved ones in any of your cemeteries. I furthermore want you to know that it is a terrible, terrible sin to take such advantage of people who believe they don't have any other choice (as Catholics)but to be buried in your cemetery.
A copy of this will also be sent to Bishop Lennon, who- as our bishop- should know that rosaries and palms are being thrown away by your staff at your command.
Losing a child has been the most painful thing that has ever happened to my husband and I; it is sad that our grief has only been maximized by your illogical, silly and absurd rules and regulations.
Sincerely,
Mrs.XXXXXXXXXXXXX
Please pray for all of the people who have been hurt by these rules and regulations!
What I didn't know was that my cousin knew that they were gone and, in order to protect my feelings, asked me to have my mom call him. So, she knew that when she went there, they would be gone.
On thing that had been at her grave was a rosary that had lovingly been donated to her by my oldest child. I don't know how I will explain this to her. Two blessed palms were also taken as were two fake floral arrangements, a crucifix and a little stuffed rabbit from her grandmother (my mother).
As Catholics, we have to be buried in Catholic cemeteries whenever possible. This limits where our bodies can be put... So, we have no choice. Well, I am sick of it.
Here is an email I sent to CCAC a few minutes ago:
To Whom It May Concern at Catholic Cemeteries Association:
My husband and I drive every Sunday from Kent to your Brookpark cemetery in order to honor the remains of our deceased infant. Because my husband and I were so distraught when our baby died, relatives were kind enough to take care of the details surrounding her burial and, although we are grateful for this, had we been aware of the rules and regulations in your cemeteries, we would have looked elsewhere to have her buried.
We did not know that, in addition to a stone, we would have to pay for a concrete slab as well. This presents an issue for us as this makes getting our child a stone financially impossible. While $350.00 (min) may not seem like a big deal to you, it is to us and I am certain to many other people who have loved ones buried in your cemetery. I know that we are not the only people who are upset about this; at the same time we were learning about it (from Milano Co.) another woman was also hearing about it for the first time. She was elderly and, presumably, had buried her husband or child. She was so shocked and confused and, despite my own anger and pain, I felt bad for her. The sick thing is that people who have just lost a loved one are vulnerable and not thinking clearly. That, combined with the fact that, as Catholics, we must be buried in a Catholic cemetery, makes it all too easy for people like you to take advantage of people like us.
We also did not know that Easter decorations would be taken down so soon after Easter. While I heard today that there were signs posted, I never saw any. Furthermore, the Easter season officially does not end until Pentacost, which is still weeks away.
The Easter decorations we left for our child meant something to us; these things were not rubbish to be thrown away. Moreover, there were consecrated objects (a rosary that was a gift from our oldest child and two blessed palms) that were taken and, presumably, thrown away. This is sacrilege (CCC 2120). While my mother was at the cemetery hoping to get there in time to take our daughter's things down, other mourners were there and were equally as upset and angry as I am.
While I understand the need for cleanliness, hygiene and fire safety, I also feel that some of your rules and regulations go well beyond safety and any sort of rational thought. I have to wonder what sort of heartless person can think it is OK to remove personal objects from the grave of a baby- or the grave of anyone for that matter. I suppose it is all business to you.
I want you to know that, instead of shelling out an extra $350.00 for a concrete slab for a stone to rest on, the $350.00 will be put, instead, towards moving her out of your cemetery. I want you also to know that I will tell everyone I know not to bury their loved ones in any of your cemeteries. I furthermore want you to know that it is a terrible, terrible sin to take such advantage of people who believe they don't have any other choice (as Catholics)but to be buried in your cemetery.
A copy of this will also be sent to Bishop Lennon, who- as our bishop- should know that rosaries and palms are being thrown away by your staff at your command.
Losing a child has been the most painful thing that has ever happened to my husband and I; it is sad that our grief has only been maximized by your illogical, silly and absurd rules and regulations.
Sincerely,
Mrs.XXXXXXXXXXXXX
Please pray for all of the people who have been hurt by these rules and regulations!
Life Isn't Fair
I was fairly depressed this past Easter... I actually didn't go to Mass. I did not get out of bed until 3 or so and then did not feel like doing much of anything. It was dark by the time we got to the cemetery and it was also tough because the other kids were with us- which meant that we could not cry of express our pain. I hated going there; it makes me angry that we have to go to the cemetery to see her when we ought to have been giving her an Easter basket.
My faith has been tried over the past seven months but holidays tend to be especially difficult. I just don't get it.
At least once a week I hear a story about a child being either sickened or killed as a result of negligent parents; usually as a result of living in a meth lab or some other such thing. This past week, a woman finally spoke about how her child died years ago. The woman left her toddler unattended so that she could go to club; when she came back the child had been killed as a result of her climbing on a bookshelf that fell on top of her. A week later, the woman threw the child in the trash. She would have gotten away with it except for an X- boyfriend who reported what had happened to the police... Last week, a child died as a result of inhaling toxic fumes while living in the meth lab also inhabited by his mother, her boyfriend (not the baby's father) and a friend.
When I go to the cemetery and see the huge children's section, I have to ask "Why, Lord?" All of the parents of these babies are heart broken with a wound that will never truly heal and then there are parents out there who just don't care and God gives them children who will have to suffer because their parents aren't able to really be parents. It makes no sense!
While Barbara was in the NICU there were so many parents of healthier babies who rarely- if ever- visited. Many parents (mothers included) smoked like chimneys right outside the hospital doors... The parents of one baby who was going to be fine were allowed to sleep next to their child decided not to do so because the couch and chair they had been given were too uncomfortable.
I suppose I feel like I am being punished. I know that I have done some sinful things and did not always live how I ought to have been living; I know this. Sometimes I think I am being punished for my past. At other times I wonder why I am being punished and when it will be enough. They say that God does not give us more than we can handle but I am starting to wonder about that.
It follows, then, that if I feel as if I am being punished, I have to wonder why other people who seem like they could care less about their children get to keep them. This is why it all seems to unfair.
My mother used to say that life isn't fair. That was her reply to every problem I has as a child. I used to get so angry with her because, when I wanted sympathy, I got that. Now, I think that it has roughened me up enough so that I expect things to be unfair- not that it doesn't hurt, still... but I think it hurts much less.
There is a reason for this, people tell me, that only God knows. I pray every night that God will at least give me a sense of warmth when it comes to the death of my child- not that He will tell me His reason- but only that my heart may feel at peace enough to know that there is really a reason and that she is really with Him.
I am still very lonely. It is lonely to be the mother of a dead baby.
My faith has been tried over the past seven months but holidays tend to be especially difficult. I just don't get it.
At least once a week I hear a story about a child being either sickened or killed as a result of negligent parents; usually as a result of living in a meth lab or some other such thing. This past week, a woman finally spoke about how her child died years ago. The woman left her toddler unattended so that she could go to club; when she came back the child had been killed as a result of her climbing on a bookshelf that fell on top of her. A week later, the woman threw the child in the trash. She would have gotten away with it except for an X- boyfriend who reported what had happened to the police... Last week, a child died as a result of inhaling toxic fumes while living in the meth lab also inhabited by his mother, her boyfriend (not the baby's father) and a friend.
When I go to the cemetery and see the huge children's section, I have to ask "Why, Lord?" All of the parents of these babies are heart broken with a wound that will never truly heal and then there are parents out there who just don't care and God gives them children who will have to suffer because their parents aren't able to really be parents. It makes no sense!
While Barbara was in the NICU there were so many parents of healthier babies who rarely- if ever- visited. Many parents (mothers included) smoked like chimneys right outside the hospital doors... The parents of one baby who was going to be fine were allowed to sleep next to their child decided not to do so because the couch and chair they had been given were too uncomfortable.
I suppose I feel like I am being punished. I know that I have done some sinful things and did not always live how I ought to have been living; I know this. Sometimes I think I am being punished for my past. At other times I wonder why I am being punished and when it will be enough. They say that God does not give us more than we can handle but I am starting to wonder about that.
It follows, then, that if I feel as if I am being punished, I have to wonder why other people who seem like they could care less about their children get to keep them. This is why it all seems to unfair.
My mother used to say that life isn't fair. That was her reply to every problem I has as a child. I used to get so angry with her because, when I wanted sympathy, I got that. Now, I think that it has roughened me up enough so that I expect things to be unfair- not that it doesn't hurt, still... but I think it hurts much less.
There is a reason for this, people tell me, that only God knows. I pray every night that God will at least give me a sense of warmth when it comes to the death of my child- not that He will tell me His reason- but only that my heart may feel at peace enough to know that there is really a reason and that she is really with Him.
I am still very lonely. It is lonely to be the mother of a dead baby.
Tuesday, April 3, 2012
Palm Sunday and feeling very Forsaken
Last Sunday was Palm Sunday; the beginning of Holy Week.
While I am usually moved to tears during Mass, I actually found myself sobbing last Sunday as a result of the responsorial hymn being "My God, Why have you forsaken me" because this is how I have so often felt these past 6 months. i have felt truly abandoned at times- not just by God but pretty much by anyone else I love and with whom I have been close.
Ironically, a little passage in our bulletin (yes, I read the bulletin!) spoke to the fact that everyone suffers but that people should never have to suffer alone; family members should offer support to other family members who are suffering. Supporting suffering family members was suggested as a proper Holy Week activity and goal.
While this is right and is a step in the right direction, even my 9 year -old knows that she should always strive to comfort others- anyone- who suffers or is ill. She knows this as a "Corporal Work of Mercy". Again, she knows this and she is only 9.
When my baby was in the NICU, six family members came to visit and six friends also came to visit. Now, I come from a HUGE family: ten aunts and uncles and at least 20- some cousins who live within driving range of the hospital. While my brother and sister- in- law visited my child, my own sister did not.
Since my child has died, neither sibling bothered to call or visit until after my mother said something to them (still, only my sister called); this was three months after the fact. One uncle visited and dropped off a meal for us. One Aunt has called twice. Two Aunts and one cousin came to a Mass held in her honor and one cousin has contacted me via email and instant message.
No one visits her grave at the cemetery. When flowers are left for my grandfather (the next grave over) no one bothered to leave any for my Barbara until last week.
My mother claims that very few family members have called or visited because they don't know what to say. When she it told that someone actually left a flower at Barbara's grave, she acted like it was really something extra- extravagant rather than something family members should simply do.
Does anyone know what to say in situations like this? Also, a few good friends have been a great comfort to me without saying anything at all. The point is not to say something witty or earth- shattering because nothing anyone can say can bring someone back from the dead but rather to let someone know that you care, that you are thinking of them and praying for them. The point is to sit with someone and just let them know that you are with them and that they are not alone. The point is to be there to listen and hug... Taking up some space next to me, hugging me and listening to me does not have anything to do with saying anything.
Not knowing what to say is a poor excuse.
I feel hurt, angry and disappointed on top of every other bad thing I am feeling. Supposedly, God shows His love for us through others but, when it comes to my family, I have to wonder whether or not God really loves me.
The past six months would have been much easier if my family had been behind me. It is amazing how one tiny act of kindness could have made things so much brighter. I have lost a lot of faith in people as a result of how my family has behaved and I am just not sure I can get it back. If your family won't come through for you, then who will?
This is just one way in which I have felt forsaken.
I know that God is there and I know that He never abandons any of us. I also know that even Jesus felt forsaken as he was drawing His last few breaths on the Cross. I know, then, that my feeling of being forsaken is not so unusual...
I wonder if it is like this for every mom who has lost a child. Does everyone never know what to say?
I don't know who- if anyone reads this. I hope that other people are having a better time and receiving more love and support than I am. I also hope that those of you who are reading this and know someone who is in my place will be moved enough by my blog to support someone who is grieving even if there is some confusion over what should or should not be said. Believe me- you don't have to say anything at all except for that you love the person who is grieving and that you are there for them. One small but kind gesture will mean the world to someone in pain- trust me!
The thing is that Our Lord did not command us to love one another during Holy Week; instead He did not put any such limits on the love we must all have for each other. If my 9 year- old know this, why can't people who are two, three and four times her age grasp this simple and yet (apparently) foreign concept?
We must always remember that it is not a choice; to love each other is not a choice. It is a COMMAND in Holy Week and beyond.
" Thou shalt love thy neighbor as thyself." St. Matthew 22: 39
While I am usually moved to tears during Mass, I actually found myself sobbing last Sunday as a result of the responsorial hymn being "My God, Why have you forsaken me" because this is how I have so often felt these past 6 months. i have felt truly abandoned at times- not just by God but pretty much by anyone else I love and with whom I have been close.
Ironically, a little passage in our bulletin (yes, I read the bulletin!) spoke to the fact that everyone suffers but that people should never have to suffer alone; family members should offer support to other family members who are suffering. Supporting suffering family members was suggested as a proper Holy Week activity and goal.
While this is right and is a step in the right direction, even my 9 year -old knows that she should always strive to comfort others- anyone- who suffers or is ill. She knows this as a "Corporal Work of Mercy". Again, she knows this and she is only 9.
When my baby was in the NICU, six family members came to visit and six friends also came to visit. Now, I come from a HUGE family: ten aunts and uncles and at least 20- some cousins who live within driving range of the hospital. While my brother and sister- in- law visited my child, my own sister did not.
Since my child has died, neither sibling bothered to call or visit until after my mother said something to them (still, only my sister called); this was three months after the fact. One uncle visited and dropped off a meal for us. One Aunt has called twice. Two Aunts and one cousin came to a Mass held in her honor and one cousin has contacted me via email and instant message.
No one visits her grave at the cemetery. When flowers are left for my grandfather (the next grave over) no one bothered to leave any for my Barbara until last week.
My mother claims that very few family members have called or visited because they don't know what to say. When she it told that someone actually left a flower at Barbara's grave, she acted like it was really something extra- extravagant rather than something family members should simply do.
Does anyone know what to say in situations like this? Also, a few good friends have been a great comfort to me without saying anything at all. The point is not to say something witty or earth- shattering because nothing anyone can say can bring someone back from the dead but rather to let someone know that you care, that you are thinking of them and praying for them. The point is to sit with someone and just let them know that you are with them and that they are not alone. The point is to be there to listen and hug... Taking up some space next to me, hugging me and listening to me does not have anything to do with saying anything.
Not knowing what to say is a poor excuse.
I feel hurt, angry and disappointed on top of every other bad thing I am feeling. Supposedly, God shows His love for us through others but, when it comes to my family, I have to wonder whether or not God really loves me.
The past six months would have been much easier if my family had been behind me. It is amazing how one tiny act of kindness could have made things so much brighter. I have lost a lot of faith in people as a result of how my family has behaved and I am just not sure I can get it back. If your family won't come through for you, then who will?
This is just one way in which I have felt forsaken.
I know that God is there and I know that He never abandons any of us. I also know that even Jesus felt forsaken as he was drawing His last few breaths on the Cross. I know, then, that my feeling of being forsaken is not so unusual...
I wonder if it is like this for every mom who has lost a child. Does everyone never know what to say?
I don't know who- if anyone reads this. I hope that other people are having a better time and receiving more love and support than I am. I also hope that those of you who are reading this and know someone who is in my place will be moved enough by my blog to support someone who is grieving even if there is some confusion over what should or should not be said. Believe me- you don't have to say anything at all except for that you love the person who is grieving and that you are there for them. One small but kind gesture will mean the world to someone in pain- trust me!
The thing is that Our Lord did not command us to love one another during Holy Week; instead He did not put any such limits on the love we must all have for each other. If my 9 year- old know this, why can't people who are two, three and four times her age grasp this simple and yet (apparently) foreign concept?
We must always remember that it is not a choice; to love each other is not a choice. It is a COMMAND in Holy Week and beyond.
" Thou shalt love thy neighbor as thyself." St. Matthew 22: 39
Friday, March 30, 2012
Medical Ethics?
Last night was a difficult night for me. I could not sleep. I just kept remembering my baby and certain details about her very short existence. I began crying when I thought that she may never have seen my face. The two times she was capable of opening her eyes, she looked at her father and a friend of the midwife's. In the NICU, she could not open her eyes. Once a nurse opened her eyelids and noticed that she was moving her eyes in the direction of sound. I went on the other side of her and called her name and she moved her eyes to look at me. I am not sure, though, if she was capable of sight.
This was one of the happiest days I shared with my baby in the NICU and, ironically, it was the beginning of the end. That day, the talk had shifted from putting in a trache and sending her home in a "vegetative" state to getting her breathing on her own and nursing. That day, things looked up.
The next day, she crashed. She was, again, unresponsive. We told the doctor that we believed she had an infection but our concerns were blown off. Two hours before she died, the doctor on call told us that he felt she had an infection. He also told us that this was the end and that he would not resuscitate her because her little body had already been through so much. He thought that she would die right away and so he quickly got her out of her crib and asked me if I wanted to hold her. I didn't need to think about it.
She held on for nearly 2 1/2 hours. I gave her life and I held her as the life left her. I am not sure how to get over this.
The NICU staff treated her like an object. Their main objective, at first, was to get us to pull the plug. We refused several times but "no" wasn't good enough. They gave up and just did nothing. They gave up and just let her get worse until she- on her own- began to get better. Then they began doing something for her. Until then, though, they just let her lay there waiting to die since we wouldn't pull the plug on her.
Certain nurses never bothered to reposition her or speak to her or even monitor her temperature even though I begged them too. She was an object; not a person. I never knew how pro- death doctors and hospitals were.
The night before she died, I knew she was going to die if she did not get help soon. I begged several times for the doctor to see her and he wouldn't. He refused. The next morning, we waited until rounds to talk with the doctor because that was when we were told we could finally see him. We waited and waited and, when we asked what was taking so long, we were told that they had decided to take a break from rounds. It was not until I asked whether or not the number of times I had asked to see the doctor had been charted that rounds finally continued.
This is the bottom line: being sued. Money. It all comes down to money.
It also is a case of pulling the plug on hopeless and useless cases so that space can be better occupied by babies that will life a productive life. My baby was an object that took up space; she was not a person or a life. She was not my child... She was a thing. Medical ethics at its finest, I suppose.
It is one thing to mourn over the loss of a child but another entirely to have to deal with this sort of evil and injustice. Today I will pray for every baby and parent in the NICU and for the people who care for them. I pray that the parents may be given the strength they need to carry on and make good decisions despite what the doctors think. I pray that the doctors and nurses may receive the grace they need to operate in a compassionate and loving way and that they may be moved to view each baby as a human being- worthy of care and respect. Finally, I pray for the babies; that God may comfort them and always let His presence be known to them.
This was one of the happiest days I shared with my baby in the NICU and, ironically, it was the beginning of the end. That day, the talk had shifted from putting in a trache and sending her home in a "vegetative" state to getting her breathing on her own and nursing. That day, things looked up.
The next day, she crashed. She was, again, unresponsive. We told the doctor that we believed she had an infection but our concerns were blown off. Two hours before she died, the doctor on call told us that he felt she had an infection. He also told us that this was the end and that he would not resuscitate her because her little body had already been through so much. He thought that she would die right away and so he quickly got her out of her crib and asked me if I wanted to hold her. I didn't need to think about it.
She held on for nearly 2 1/2 hours. I gave her life and I held her as the life left her. I am not sure how to get over this.
The NICU staff treated her like an object. Their main objective, at first, was to get us to pull the plug. We refused several times but "no" wasn't good enough. They gave up and just did nothing. They gave up and just let her get worse until she- on her own- began to get better. Then they began doing something for her. Until then, though, they just let her lay there waiting to die since we wouldn't pull the plug on her.
Certain nurses never bothered to reposition her or speak to her or even monitor her temperature even though I begged them too. She was an object; not a person. I never knew how pro- death doctors and hospitals were.
The night before she died, I knew she was going to die if she did not get help soon. I begged several times for the doctor to see her and he wouldn't. He refused. The next morning, we waited until rounds to talk with the doctor because that was when we were told we could finally see him. We waited and waited and, when we asked what was taking so long, we were told that they had decided to take a break from rounds. It was not until I asked whether or not the number of times I had asked to see the doctor had been charted that rounds finally continued.
This is the bottom line: being sued. Money. It all comes down to money.
It also is a case of pulling the plug on hopeless and useless cases so that space can be better occupied by babies that will life a productive life. My baby was an object that took up space; she was not a person or a life. She was not my child... She was a thing. Medical ethics at its finest, I suppose.
It is one thing to mourn over the loss of a child but another entirely to have to deal with this sort of evil and injustice. Today I will pray for every baby and parent in the NICU and for the people who care for them. I pray that the parents may be given the strength they need to carry on and make good decisions despite what the doctors think. I pray that the doctors and nurses may receive the grace they need to operate in a compassionate and loving way and that they may be moved to view each baby as a human being- worthy of care and respect. Finally, I pray for the babies; that God may comfort them and always let His presence be known to them.
Thursday, March 29, 2012
How Grief Looks
After four terrible weeks in the NICU at the local Children's Hospital, my baby's body finally gave in and she took her last breath in my arms. Because she had been sick since birth, I had time to think about what would happen i she were to die. First of all, I thought that I would not be able to handle it. I thought that I would go nuts.
But when she died, I was fairly calm. I knew by the way her monitors looked that she was dying and I began praying. I never thought I would pray at a time like this; I always thought I would just scream and cry. But I prayed. It was automatic but not without emotion. I first prayed the "Hail Mary" because I suppose I needed her strength. Then I prayed the "Lord's Prayer", the "Salve Regina" and the "Prayer to St. Michael." Then I cried. I called out for Our Blessed Mother and I gave myself to God at that point just like Jesus commended His spirit to God before his death. That is all I could have done; it was happening and I couldn't stop it.
Then I thought that it as over. It was done. I thought that the next few weeks would be difficult but then things would get better. I had no idea that it was really just beginning. I had no idea what challenges, thoughts and feelings lay ahead.
That was October. Now it is nearly the end of March and I am starting to look back on things. I find it strange that things were not as I thought they would be. I thought that things would be bad and then get increasingly better. I thought that the grieving process would look like a graph with a steady, upward slope. I also thought that, by now, I would feel much better and that I would be at peace with things.
How silly I was! In reality, the slope of my grief graph has an incline but it is not steady or smooth, there are many drops along the way and, although these drops are fewer as time goes by, they still exist. I still have bad days- sometimes very bad days.
I think what happens is that the emotional gives way to the rational and I start to think and remember. Also, I am no longer in shock and I know now that Barbara Bernadette will never come back. Some memories still feel so real and new while others are fading away. There is a calmness about my grief, now, when there wasn't before. I guess if my grief graph was colored, it would begin very red and then blue and then red and then fade into a deep blue with fewer red segments. Red is all emotion- intense sorrow and pain. Blue is a calm sort of acceptance. I am at deep blue at the moment.
It seems like my feelings change constantly and I feel things and think things that I never thought I could think or feel before. I feel angry, I feel sad, I feel lonely and sometimes I actually feel OK. Then I feel guilty that I feel OK.
Sometimes I feel fine and then I remember something or someone says something and I feel terrible. Then I believe that I have regressed somewhat. Then I feel angry with myself because I ought to be progressing- not regressing.
I guess one thing I have learned is that you can't control your grief; you just have to let it go where it will. You just have to own it and accept it. You just have to give it to God. You just have to keep in constant contact with Him and ask for help.
I try not to punish myself for regressing but I do find that others believe that, by this point, I ought to be over it and on the up and up. This hurts and only makes things worse. it is one thing to feel bad but another entirely to feel like a freak because I feel bad! Unless someone has also lost a baby, they have no idea what it is like and therefore have no right to criticize someone who has. This, obviously, creates issues and distance between myself and others and I either have to stop speaking with these people or never let them know how I feel. Either way, I feel hurt and betrayed. This looks black; isolation is black. Betrayal is black. Feeling let down is black.
Anyhow, maybe the regressions are not regressions at all; maybe they are a natural part of it all...? Maybe I should stop expecting so much of myself and just be how I have to be in order to just live sometimes because sometimes just living is hard enough. Maybe it is better to look at the reality of things- what I have been through and how miraculous it is that I am getting through it...
So, my graph is misshapen and discolored. My life, now, feels misshapen and discolored. Nothing is the same. Nothing will ever be the same. My entire family has to fit into a new shape- that of a family circle with a hole somewhere within it where my fourth child should be.
Nothing about my grief has been predictable or understandable. I suppose this is OK since nothing about life really is predictable and understandable. Nothing about my baby's life was predictable and understandable. We were- and are- at the mercy of God in all things and only God knows what will be with complete certainty. This may sound frightening and, in some ways it is. To realize that we are not in control and that only God is is scary. At the same time, though, it is comforting to know that He does have a plan and that things- no matter how painful- will work out for the best. It may not be what we think is best- but it really will be for the best. This is one constant comfort in a world full or so many questions and concerns.
If we are not in control, then why bother to fight it? In the end, all I can do is accept my loss. Acceptance is white and gold- the color of vestments on important Feast Days and Church Holy Days. The little Infant of Prague wears white and gold on Church feast days as well... All I can do is accept and rely on God; there really is nothing else to do- after all, white and gold are wonderful colors of a celebratory nature!
"With expectation I have waited for the Lord and he was attentive to me.
And he heard my prayers, and brought me out of the pit of misery and the mire of the dregs.
And he set my feet upon a rock, and directed my steps.
And he put a new canticle into my mouth, a song to our God.
Many shall see, and shall fear: and they shall hope in the Lord."
- Psalm 39:2-4 (Douay- Rheims; St. Benedict Press)
But when she died, I was fairly calm. I knew by the way her monitors looked that she was dying and I began praying. I never thought I would pray at a time like this; I always thought I would just scream and cry. But I prayed. It was automatic but not without emotion. I first prayed the "Hail Mary" because I suppose I needed her strength. Then I prayed the "Lord's Prayer", the "Salve Regina" and the "Prayer to St. Michael." Then I cried. I called out for Our Blessed Mother and I gave myself to God at that point just like Jesus commended His spirit to God before his death. That is all I could have done; it was happening and I couldn't stop it.
Then I thought that it as over. It was done. I thought that the next few weeks would be difficult but then things would get better. I had no idea that it was really just beginning. I had no idea what challenges, thoughts and feelings lay ahead.
That was October. Now it is nearly the end of March and I am starting to look back on things. I find it strange that things were not as I thought they would be. I thought that things would be bad and then get increasingly better. I thought that the grieving process would look like a graph with a steady, upward slope. I also thought that, by now, I would feel much better and that I would be at peace with things.
How silly I was! In reality, the slope of my grief graph has an incline but it is not steady or smooth, there are many drops along the way and, although these drops are fewer as time goes by, they still exist. I still have bad days- sometimes very bad days.
I think what happens is that the emotional gives way to the rational and I start to think and remember. Also, I am no longer in shock and I know now that Barbara Bernadette will never come back. Some memories still feel so real and new while others are fading away. There is a calmness about my grief, now, when there wasn't before. I guess if my grief graph was colored, it would begin very red and then blue and then red and then fade into a deep blue with fewer red segments. Red is all emotion- intense sorrow and pain. Blue is a calm sort of acceptance. I am at deep blue at the moment.
It seems like my feelings change constantly and I feel things and think things that I never thought I could think or feel before. I feel angry, I feel sad, I feel lonely and sometimes I actually feel OK. Then I feel guilty that I feel OK.
Sometimes I feel fine and then I remember something or someone says something and I feel terrible. Then I believe that I have regressed somewhat. Then I feel angry with myself because I ought to be progressing- not regressing.
I guess one thing I have learned is that you can't control your grief; you just have to let it go where it will. You just have to own it and accept it. You just have to give it to God. You just have to keep in constant contact with Him and ask for help.
I try not to punish myself for regressing but I do find that others believe that, by this point, I ought to be over it and on the up and up. This hurts and only makes things worse. it is one thing to feel bad but another entirely to feel like a freak because I feel bad! Unless someone has also lost a baby, they have no idea what it is like and therefore have no right to criticize someone who has. This, obviously, creates issues and distance between myself and others and I either have to stop speaking with these people or never let them know how I feel. Either way, I feel hurt and betrayed. This looks black; isolation is black. Betrayal is black. Feeling let down is black.
Anyhow, maybe the regressions are not regressions at all; maybe they are a natural part of it all...? Maybe I should stop expecting so much of myself and just be how I have to be in order to just live sometimes because sometimes just living is hard enough. Maybe it is better to look at the reality of things- what I have been through and how miraculous it is that I am getting through it...
So, my graph is misshapen and discolored. My life, now, feels misshapen and discolored. Nothing is the same. Nothing will ever be the same. My entire family has to fit into a new shape- that of a family circle with a hole somewhere within it where my fourth child should be.
Nothing about my grief has been predictable or understandable. I suppose this is OK since nothing about life really is predictable and understandable. Nothing about my baby's life was predictable and understandable. We were- and are- at the mercy of God in all things and only God knows what will be with complete certainty. This may sound frightening and, in some ways it is. To realize that we are not in control and that only God is is scary. At the same time, though, it is comforting to know that He does have a plan and that things- no matter how painful- will work out for the best. It may not be what we think is best- but it really will be for the best. This is one constant comfort in a world full or so many questions and concerns.
If we are not in control, then why bother to fight it? In the end, all I can do is accept my loss. Acceptance is white and gold- the color of vestments on important Feast Days and Church Holy Days. The little Infant of Prague wears white and gold on Church feast days as well... All I can do is accept and rely on God; there really is nothing else to do- after all, white and gold are wonderful colors of a celebratory nature!
"With expectation I have waited for the Lord and he was attentive to me.
And he heard my prayers, and brought me out of the pit of misery and the mire of the dregs.
And he set my feet upon a rock, and directed my steps.
And he put a new canticle into my mouth, a song to our God.
Many shall see, and shall fear: and they shall hope in the Lord."
- Psalm 39:2-4 (Douay- Rheims; St. Benedict Press)
Introduction
I used to read other blogs and wonder why and how people could post such personal stuff on the internet for everyone to see. I thought that someone who could share such personal thoughts and feelings with just anyone probably has some issues or, at least, has narcissistic tendencies. I no longer can think this way because I now know how terrible and lonely life can be and so I can understand (to some extent) why people write the things they do online. I also think that it is easier to write things for an audience of strangers than it is to tell people something face- to- face. Unfortunately, in our society, we have an issue with being honest about our feelings and also have an issue with personal space and closeness. I suppose this can drive someone to feel better about posting things online rather than telling people things in real life.
I must identify myself as a Catholic because there is just no way of getting around it; if it isn't an issue at the beginning, it will be one as blog entries are published because practicing Catholics are... well... different. It is just as much a culture as it is a religion- especially if one is trying in earnest to live their religion. Catholicism permeates every aspect of my existence and- to a large extent- makes me who I am. I am inseparable from the Church and she is inseparable from me.
Catholics don't believe that dead people become angels; angels are pure spirits that were created before people existed. They are not people and people are not angels; people can never be angels. People die and their souls are always the soul of a human being. This is one thing that sets Catholics apart from followers of other religions. Catholics believe that people go to heaven, purgatory or hell when they die. We also believe that the body dies but the soul does not. We believe that, in the end, our souls will be reunited with our bodies and affirm this every time we say certain prayers; it is actually an important tenant in our belief system. So, things like this are obviously issues when it comes to talking about death with non- Catholics.
So it is hard to hear well- meaning people tell me all about how my baby girl is now an angel... It is also hard to hear people tell me that God knows best and that He has a plan for us when, even though I know this is true, my heart is breaking. There has been a lot that has gone on over the past 6 months that has shaken my faith and has changed my life forever. I think of my faith as a life- saving raft that I must cling to in very stormy seas. This analogy has helped me to hang on even when life seemed unbearable and my humanity gets the best of me.
The death of my four- week old baby girl has changed every aspect of my existence. Nothing is the same. I find that I can't relate to anyone anymore and that I have had to deal with this more- or- less alone because no one "knows what to say". Being so alone in my grief, I have realized that all I have is God; that all else is temporary and fleeting. This is very comforting but also inspires a feeling of extreme desolation. I feel very isolated.
My pastor has been very kind to my husband and I; he prays for us everyday and has met with us when things got really bad. He drove an hour each way to visit my baby in the NICU and to administer "anointing of the sick." It was wonderful to have a messenger of God in such a Godless place. But I have found that women who used to smile and say "hello" to me now just avoid me and stay as far away as possible. It is as if they believe that death is catching. This has hurt. I had hoped to find some support within my parish community but I am finding that this is not going to happen. It seems that some Catholics have forgotten the command to love each other.
So many good things are happening to other people and, although I am happy for them, I just can't relate. I feel so left out. I can't even speak with my best friend anymore. She is so happy and I believe that I can't pretend that things are OK anymore. I don't want to bring her down.
I feel very angry with the doctors, with my family and with God. There is no way of coming to terms with such a loss and it seems so cruel and incomprehensible that God should see fit to take away small babies from the arms of their parents. I know that He does, though, constantly. When I visit my baby at the cemetery, I see hundreds of graves belonging to babies and very small children and I think "what kind of God is this?" I think about each of these parents and the heartache they feel; their tears could easily fill up an ocean. Then I think about all the other baby graves in the US and then all around the world and I know that I am not alone in my grief; there are millions of other mothers in my position.
I pray that these mothers have support and are comforted by friends and family but I am sure that many are not. I am sure that many of these mothers feel much like I do: alone. The mere fact that we have lost babies seems to necessarily separate us from those who haven't lost babies. NO ONE can understand unless they have gone through the same loss.
So, I have decided to break my silence in a very public way. I hope that other mothers will find this blog and read it and understand that they are not alone- that I am thinking of them and praying for them and that we are united in our grief. I also want to express my thoughts and feelings so that others who think and feel the same things will know that they are not nuts and that someone out there understands. It is so hard to say certain things because we are just expected to go about things quietly and most people expect us to just "get over it."
Some of the things I will write will be very personal and embarrassing. I don't mind exposing myself in this way as long as other women may be helped and comforted and may know that they are not alone!
I must remember how Our Blessed Mother, pregnant herself, journeyed to Elizabeth's home in order to provide her with comfort and care. I must remember that she did not think about her own situation or discomfort but instead thought only of her cousin. I must also remember that Jesus commands us to care for each other and love each other and, right now- in my weakened state- this is the best I can do to express my love for my fellow man (or woman).
Blessed be God forever!
I must identify myself as a Catholic because there is just no way of getting around it; if it isn't an issue at the beginning, it will be one as blog entries are published because practicing Catholics are... well... different. It is just as much a culture as it is a religion- especially if one is trying in earnest to live their religion. Catholicism permeates every aspect of my existence and- to a large extent- makes me who I am. I am inseparable from the Church and she is inseparable from me.
Catholics don't believe that dead people become angels; angels are pure spirits that were created before people existed. They are not people and people are not angels; people can never be angels. People die and their souls are always the soul of a human being. This is one thing that sets Catholics apart from followers of other religions. Catholics believe that people go to heaven, purgatory or hell when they die. We also believe that the body dies but the soul does not. We believe that, in the end, our souls will be reunited with our bodies and affirm this every time we say certain prayers; it is actually an important tenant in our belief system. So, things like this are obviously issues when it comes to talking about death with non- Catholics.
So it is hard to hear well- meaning people tell me all about how my baby girl is now an angel... It is also hard to hear people tell me that God knows best and that He has a plan for us when, even though I know this is true, my heart is breaking. There has been a lot that has gone on over the past 6 months that has shaken my faith and has changed my life forever. I think of my faith as a life- saving raft that I must cling to in very stormy seas. This analogy has helped me to hang on even when life seemed unbearable and my humanity gets the best of me.
The death of my four- week old baby girl has changed every aspect of my existence. Nothing is the same. I find that I can't relate to anyone anymore and that I have had to deal with this more- or- less alone because no one "knows what to say". Being so alone in my grief, I have realized that all I have is God; that all else is temporary and fleeting. This is very comforting but also inspires a feeling of extreme desolation. I feel very isolated.
My pastor has been very kind to my husband and I; he prays for us everyday and has met with us when things got really bad. He drove an hour each way to visit my baby in the NICU and to administer "anointing of the sick." It was wonderful to have a messenger of God in such a Godless place. But I have found that women who used to smile and say "hello" to me now just avoid me and stay as far away as possible. It is as if they believe that death is catching. This has hurt. I had hoped to find some support within my parish community but I am finding that this is not going to happen. It seems that some Catholics have forgotten the command to love each other.
So many good things are happening to other people and, although I am happy for them, I just can't relate. I feel so left out. I can't even speak with my best friend anymore. She is so happy and I believe that I can't pretend that things are OK anymore. I don't want to bring her down.
I feel very angry with the doctors, with my family and with God. There is no way of coming to terms with such a loss and it seems so cruel and incomprehensible that God should see fit to take away small babies from the arms of their parents. I know that He does, though, constantly. When I visit my baby at the cemetery, I see hundreds of graves belonging to babies and very small children and I think "what kind of God is this?" I think about each of these parents and the heartache they feel; their tears could easily fill up an ocean. Then I think about all the other baby graves in the US and then all around the world and I know that I am not alone in my grief; there are millions of other mothers in my position.
I pray that these mothers have support and are comforted by friends and family but I am sure that many are not. I am sure that many of these mothers feel much like I do: alone. The mere fact that we have lost babies seems to necessarily separate us from those who haven't lost babies. NO ONE can understand unless they have gone through the same loss.
So, I have decided to break my silence in a very public way. I hope that other mothers will find this blog and read it and understand that they are not alone- that I am thinking of them and praying for them and that we are united in our grief. I also want to express my thoughts and feelings so that others who think and feel the same things will know that they are not nuts and that someone out there understands. It is so hard to say certain things because we are just expected to go about things quietly and most people expect us to just "get over it."
Some of the things I will write will be very personal and embarrassing. I don't mind exposing myself in this way as long as other women may be helped and comforted and may know that they are not alone!
I must remember how Our Blessed Mother, pregnant herself, journeyed to Elizabeth's home in order to provide her with comfort and care. I must remember that she did not think about her own situation or discomfort but instead thought only of her cousin. I must also remember that Jesus commands us to care for each other and love each other and, right now- in my weakened state- this is the best I can do to express my love for my fellow man (or woman).
Blessed be God forever!
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