A favorite mommy; a woman with whom I would hope to be friends if we lived closer, broke down last week after class, as she told me about her friend's recent loss. Perfect pregnancy, everything was fine. And then life ripped her off. Her baby died. I believe she gave birth to a son, and I think he had died right before birth - but I am not sure of the details.
But I know her baby died. That is the only important detail. And I can only imagine her pain. Really. This mama got nine months to bond with her baby. To track his development, imagine what he looked like, anticipate his arrival, his existence, to feel him move, to love him. And then she was robbed of that most beautiful moment.
The first moment.
And the rest of it, too.
And her friend, her friend is a beautiful person who asked me what, if anything, she could do. She couldn't even ask those words. I just assumed that was what she was asking when she told me what happened. And, guess what? I don't have the right answer. All I can say is what helped me, and hope that some of it at least, will help this mama too. I am not sure if this was her first child, but I think he was. And yet who considers her a mama besides herself? I hope at least a few other people in her life can give her that hard earned acknowledgment.
But what I told her friend - who is strong and brave enough to want to help - was that these situations are very alike, but very different. Even if the details were more alike, our grief would likely be different. That said, I am still very 'in touch' with my grief, and although I sometimes wonder if I am stuck in 'the anger phase', I was more than willing to share what helped me in those raw first few months. This is not the first time I have been asked this question, either. When people seek me out to ask me what they might be able to say or do that could possibly help, I know right away that these are the best friends. These friends could even possibly save their bereaved friend's life.
When I mentioned that my sister-in-laws cleaned out almost all of Elijah's things from the house and packed them away in the garage, one friend was shocked. She thought it was cruel. I guess it could seem that way to some, but for me I could not look at any of my son's things without being reminded how 'dead' he was. So suddenly. I knew that someday I would want to see his pictures and hold his toys and smell his clothes. But not for months. I asked them to put his things away. I remember coming home from the hospital that morning after Elijah died and calling my friend to come and help me take down his crib. She did. It was excruciating. Excruciating does not even come close. I have yet to find a word that does.
After that, I asked that his things be put away, and not by me. I appreciated this help. It paralyzed me to think that I might have to touch it all and put it away myself.
I hope that someone will offer to put his things away and keep them very safe for her - if this is what she wants.
I hope that this mama has a picture of her baby, and I hope that when she is ready to look at it, someone will ask her to share that picture. It is not morbid or grotesque; it is the only photographic remembrance she has and will ever have of her child.
I hope that this mama was able to hold her baby for a long time if she wanted to. I hope that she was able to bathe her baby, and touch his toes and kiss his tiny fingers. I hope that she was able to cry and sing to him until she was ready. (you never are. never. but still you let them go.)
I hope that her friends will ask her about her time with him. I hope that she will talk about it with them soon. I think it helps. Her friends wanted to love that baby too; they are ready to share her tears and her pain. And her anger. Make plenty of room for that.
I hope that someone will offer to make a quilt for this mama out of the clothes and blankies that were meant for this baby. Most mamas will not want to use these in the future. But some will; the clothes will always hold some special significance.
I hope that her friends will call her nearly every day, just to check in. Just to say, "Hi, I was thinking about you and how is your day going, and 'crappy' is a totally acceptable answer."
Just to leave another message and say that she doesn't have to call you back, but you're just checking in, and you will call again later. She doesn't have to pick up. That isn't the point. The point is that she has a lifeline. I am not exaggerating when I say that this 'tactic' saved my life at least once, very likely twice. I had about three friends who called me constantly. For months, maybe a year. And when it had gone on too long without a response, they would ask for one. Just a quick check. But usually I talked. And cried. And sometimes I talked about my baby. And my anger. And they listened to it all. Whether I was talking or not.
Most of all, I wish for her some way of meandering through the following months just seeking some sort of peace, and not seeking 'normal'. I wish that I could speed up time for her; this really is the only concept (time) to which I can attribute any positive measures of healing and coping.
Losing a child feels like the biggest rip-off of your life. It is.
I am truly sorry for your loss. I can not even begin to imagine your pain. I know you have so much love you wanted to share.
I will be here for you.
Showing posts sorted by relevance for query biggest rip off. Sort by date Show all posts
Showing posts sorted by relevance for query biggest rip off. Sort by date Show all posts
Monday, December 11, 2006
Friday, April 04, 2008
Cheated
Today I feel crappy. I would love to write about Bubbles' progress and the work we have been doing with him. I really would. And also about my Big News that makes me feel just a little bit special.
But that will have to wait.
Because today I am having one of those 'it's not fair' days. And feeling ripped-off. And feeling damn angry at the pediatrician. Because, lets face it, she is the easiest one to blame. And truthfully, she does deserve some of it.
While we were agonizing over the decision to pursue a lawsuit or not, one of my friends (who happens to be an attorney) pointed out that I, myself, had expressed fear that Elijah would not live a long life.
It's true.
From the beginning, I hated it when nurses in the NICU called him an angel, an name that came out easily when they saw his true halo of platinum curls, his cherubic face, his startlingly mellow disposition. "He's such an angel!"
I would frown. No, not an angel. A real boy. Like Pinocchio.
Not an angel. My baby. My son. My boy.
Flesh and blood, see?
Not an angel.
I remember that Christmas with him so well (there was just that one). He was thrilled by all of the lights of the holiday; eyes twinkling, always gazing at the lights and singing to the fairies that danced around them.
I took him to the church (in which I had grown up) midnight service on Christmas Eve. It makes my mom so happy, and I love my mom, so yes - I go to church then. Plus, I love the music.
Elijah loved every bit of it; the smells of incense, the sounds of the pipe organ and choir, the gazing at the beautifully painted cathedral ceiling. When my mother and I sang the carols, he sang along. But when the entire congregation sang Silent Night, a capella, I was holding him in my hands, with his feet against my heart, facing me. His face just shone in the candlelight, his hair was indeed a halo, his eyes glittered with the knowing of a thousand bodhisattvas, and 'sleep in heavenly peace...' came out as a bit of a choked sniffle for me; I blinked once and the tears just started flowing. I looked over at my mother. She was also singing to Elijah, and she was also crying. I wondered how many Christmases we would have together. I knew in my heart there would not be many, if any, more. But who wants to listen to their heart say stupid shit like that?
Maybe a year later, I asked my mom if she remembered that, and asked her what she was thinking. I knew the answer.
Every specialist we saw at the Ivory Tower hospital would marvel over how different! and special! and tiny! and adorable! our little mystery boy was. They took every opportunity to point out his anomalies and how they just didn't add up to any syndrome for which they had a name. They talked at length about his delays and deficits; it got to be quite tiresome, so I would go in there saying, "I know what he is supposed to be doing, let's talk about what he is doing."
There were never any answers. (I realized later, that this was due largely in part to the fact that the doctors at Ivory Tower never actually communicate with each other or actually take any sort of academic interest in your child, even if they are a head-scratching mystery. Their approach is more along the lines of: 'If I can't diagnose it, then there is no need to discuss this further. I want diagnoses! Not the inability to give one!')
But to every single specialist, I would ask the same question.
"I understand that you don't have any diagnosis for my son, but do you have any reason to believe that Elijah will die at a young age?"
The answer was invariably the same.
"No, we have no reason to believe this."
Even when I told the Dr. Asshat neurologist that I was concerned about his lable of microcephaly, and wouldn't that alone be a reason to believe he would die at a young age, he dismissed it with,
"No, we have no reason to believe this."
Of course, almost all real information about microcephaly will tell you that the life expectancy for a person with this diagnosis is significantly shortened.
Also, two other doctors who saw Elijah after this dx (a geneticist, and an infant development specialist) disagreed with and recinded that lable, as his head was in proportion to his body. There was some space between his brain and skull that apparently should not have been there, but everything about him was proportional - for a two or three month old baby rather than an eight month old baby.
I kept asking. I asked his pediatrician about ten times while he was alive, and again after he died. She always said that there was no indication.
I begged her to share with me, after he died, if there was no indication, was there perhaps an intuition? I was desperate for her to say yes. It would have helped to explain the lack of interest by all those specialists, though it also would have made me wonder at the lack of urgency in getting him into each one of those specialty clinics (lost cause?). She said no.
Once, at an appointment with a geneticist, she asked me why I asked that question about his life expectancy. I actually teared up when I told her that I was afraid that he would die young. Her response?
"Maybe we should take another look at him in a year. Let's set up an appointment for next September."
Seriously. Every word, true.
In spite of all my fears, I never, ever thought that it would be only 13 months and 11 days.
So, when I was in turmoil over the lawsuit decision, and my friend reminded me that, if I chose to pursue this, I would be required to defend his (quality of) life in general, as he was a 'special needs' child, and that I had spoken about my fearful intuition openly, I responded thusly:
I feel cheated today.
But that will have to wait.
Because today I am having one of those 'it's not fair' days. And feeling ripped-off. And feeling damn angry at the pediatrician. Because, lets face it, she is the easiest one to blame. And truthfully, she does deserve some of it.
While we were agonizing over the decision to pursue a lawsuit or not, one of my friends (who happens to be an attorney) pointed out that I, myself, had expressed fear that Elijah would not live a long life.
It's true.
From the beginning, I hated it when nurses in the NICU called him an angel, an name that came out easily when they saw his true halo of platinum curls, his cherubic face, his startlingly mellow disposition. "He's such an angel!"
I would frown. No, not an angel. A real boy. Like Pinocchio.
Not an angel. My baby. My son. My boy.
Flesh and blood, see?
Not an angel.
I remember that Christmas with him so well (there was just that one). He was thrilled by all of the lights of the holiday; eyes twinkling, always gazing at the lights and singing to the fairies that danced around them.
I took him to the church (in which I had grown up) midnight service on Christmas Eve. It makes my mom so happy, and I love my mom, so yes - I go to church then. Plus, I love the music.
Elijah loved every bit of it; the smells of incense, the sounds of the pipe organ and choir, the gazing at the beautifully painted cathedral ceiling. When my mother and I sang the carols, he sang along. But when the entire congregation sang Silent Night, a capella, I was holding him in my hands, with his feet against my heart, facing me. His face just shone in the candlelight, his hair was indeed a halo, his eyes glittered with the knowing of a thousand bodhisattvas, and 'sleep in heavenly peace...' came out as a bit of a choked sniffle for me; I blinked once and the tears just started flowing. I looked over at my mother. She was also singing to Elijah, and she was also crying. I wondered how many Christmases we would have together. I knew in my heart there would not be many, if any, more. But who wants to listen to their heart say stupid shit like that?
Maybe a year later, I asked my mom if she remembered that, and asked her what she was thinking. I knew the answer.
Every specialist we saw at the Ivory Tower hospital would marvel over how different! and special! and tiny! and adorable! our little mystery boy was. They took every opportunity to point out his anomalies and how they just didn't add up to any syndrome for which they had a name. They talked at length about his delays and deficits; it got to be quite tiresome, so I would go in there saying, "I know what he is supposed to be doing, let's talk about what he is doing."
There were never any answers. (I realized later, that this was due largely in part to the fact that the doctors at Ivory Tower never actually communicate with each other or actually take any sort of academic interest in your child, even if they are a head-scratching mystery. Their approach is more along the lines of: 'If I can't diagnose it, then there is no need to discuss this further. I want diagnoses! Not the inability to give one!')
But to every single specialist, I would ask the same question.
"I understand that you don't have any diagnosis for my son, but do you have any reason to believe that Elijah will die at a young age?"
The answer was invariably the same.
"No, we have no reason to believe this."
Even when I told the Dr. Asshat neurologist that I was concerned about his lable of microcephaly, and wouldn't that alone be a reason to believe he would die at a young age, he dismissed it with,
"No, we have no reason to believe this."
Of course, almost all real information about microcephaly will tell you that the life expectancy for a person with this diagnosis is significantly shortened.
Also, two other doctors who saw Elijah after this dx (a geneticist, and an infant development specialist) disagreed with and recinded that lable, as his head was in proportion to his body. There was some space between his brain and skull that apparently should not have been there, but everything about him was proportional - for a two or three month old baby rather than an eight month old baby.
I kept asking. I asked his pediatrician about ten times while he was alive, and again after he died. She always said that there was no indication.
I begged her to share with me, after he died, if there was no indication, was there perhaps an intuition? I was desperate for her to say yes. It would have helped to explain the lack of interest by all those specialists, though it also would have made me wonder at the lack of urgency in getting him into each one of those specialty clinics (lost cause?). She said no.
Once, at an appointment with a geneticist, she asked me why I asked that question about his life expectancy. I actually teared up when I told her that I was afraid that he would die young. Her response?
"Maybe we should take another look at him in a year. Let's set up an appointment for next September."
Seriously. Every word, true.
In spite of all my fears, I never, ever thought that it would be only 13 months and 11 days.
So, when I was in turmoil over the lawsuit decision, and my friend reminded me that, if I chose to pursue this, I would be required to defend his (quality of) life in general, as he was a 'special needs' child, and that I had spoken about my fearful intuition openly, I responded thusly:
If your four year old daughter is diagnosed with terminal brain cancer,
and you had no idea how much longer she had to live, and on the way home from
the grocery store, your car is struck by a person who made a poor decision
and is driving drunk, and your daughter is killed, then is her life not worth
fighting for? Is your anger unfounded? Should you not feel like you
have been cheated out of time and handed the biggest rip-off in the history of
motherhood?
I feel cheated today.
Sunday, August 05, 2007
Eight Random Facts, 29 Days Later
"Bad Friend has promptness issues looking for more tolerant friends to join crew of managing details of my life."
-is what my personal ad would read if i had one. (the platonic one, of course.)
So sorry I missed this way back, Jen - I think I was in The Holy City.
HERE’S THE RULES…- We have to post these rules before we give you the facts.- Players start with 8 random facts/habits about themselves.- People who are tagged need to write their own blog about their eight things and post these rules.- At the end of your blog post, you need to choose eight people who get tagged and list their names- Don’t forget to leave them a comment telling them they are tagged.
Rules, shmools, drools.
- Best job I've ever had is the one I started in 2001 - (absolutely shameless mamablogger gushiness alert): The Mama.
- I can't stand sesame oil. Makes me gag. Sesame seeds? No problem.
- I am a triple virgo. Scared you, didn't I? (it's true)
- I think I may never fully move beyond the residual anger that is part of my lifelong bereavement process. Losing your child=Biggest fucking rip-off you can imagine life tossing your way.
- I think I would have
five four childrenone more child if dh wasn't so terrified of chaos. And being outnumbered. And the lack of money. (I think my cervix just cried out "TRAITOR" in protest and anger ) - My father chose my daughter's name. He had died three months before. He came to me in a dream and told me to name her after a song he used to play for me on the piano. I did. Which is why she is known 'round these parts as 'Fugue in D minor'.
- Both dh's father, and my own father died on our mothers' respective birthdays, and both within the same calendar year. I don't think this was very nice.
- I was a vegetarian for 17 years and now I love cheeseburgers.
- I don't like to follow rules.
I tag:
Daisy, of Compost Happens
You
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