Dakota on their fourth Birthday!
Monday, October 15, 2012
Tomorrow is your fourth birthday, I am so proud to be Dakota's Mother. He is such a good boy. I miss you Rain and think of you everyday. I went outside today and there was a baby butterfly sitting on the porch. It made me smile. I feel like it was your way of telling me you are still here with your Momma and your brother. I love you baby girl, happy birthday!
Tuesday, September 14, 2010
Sunny days seem to hurt the mostWear the pain like a heavy coat I feel you everywhere I go I see your smile, I see your face I hear you laughing in the rain Still can't believe you're gone
Chorus:It ain't fair you died too young Like a story that had just begunThe death tore the pages all away God knows how I miss you All the hell that I've been through Just knowing no one could take your *place*(instead of 'love away')Sometimes I wonder who you'd be todayWould you see the world?Would you chase your dreams?Settle down with a family?I wonder, what would you name your babies?Some days the sky's so blueI feel like I can talk to youAnd I know it might sound crazy Chorus Today, Today, Today Today, Today, Today Sunny days seem to hurt the mostI wear the pain like a heavy coat The only thing that gives me hopeIs I know I'll see you again somedaySomeday, Someday
Chorus:It ain't fair you died too young Like a story that had just begunThe death tore the pages all away God knows how I miss you All the hell that I've been through Just knowing no one could take your *place*(instead of 'love away')Sometimes I wonder who you'd be todayWould you see the world?Would you chase your dreams?Settle down with a family?I wonder, what would you name your babies?Some days the sky's so blueI feel like I can talk to youAnd I know it might sound crazy Chorus Today, Today, Today Today, Today, Today Sunny days seem to hurt the mostI wear the pain like a heavy coat The only thing that gives me hopeIs I know I'll see you again somedaySomeday, Someday
Wednesday, November 4, 2009
One year
It has been just over a year since I gave birth to our babies. I can not believe it has been that long. Dakota is the love of my life and the sunshine in my day. My heart still feels so heavy with the ache to hold my baby Rain. I will never forget the baby I only got to hold in my heart and in my body. I love you my little Rain. I do not know how to begin to heal the pain I feel, somedays I think if it wasn't for our little guy I would not want to wake up and deal with the pain again, not another day.
They say the loss of a child will either make you or break you as a couple, in many ways it has broken us. I am not really here in my head alot.
I started this at the one year loss of our baby girl or their birthday. Funny I still feel the pain as much now as I did then. I am so grateful to have our little Dakota.
I heard a song called who you'd be today and it describes the pain I feel for the loss of Rain. Does the pain ever ease? Somehow I manage to push the pain aside and pretend all is right in the world everyday for Dakota and My family when my heart aches to hold my little baby girl. I love you Rain.
They say the loss of a child will either make you or break you as a couple, in many ways it has broken us. I am not really here in my head alot.
I started this at the one year loss of our baby girl or their birthday. Funny I still feel the pain as much now as I did then. I am so grateful to have our little Dakota.
I heard a song called who you'd be today and it describes the pain I feel for the loss of Rain. Does the pain ever ease? Somehow I manage to push the pain aside and pretend all is right in the world everyday for Dakota and My family when my heart aches to hold my little baby girl. I love you Rain.
Sunday, June 29, 2008
Celebrating life is not dependent on how many days we exist on earth;
Celebrating life is not dependent on how many days we exist on earth; it depends on what we do with the number of days we were given.
I have not accepted this yet.
why do babies die?
why why why
We are pregnant with twins and this is our story.
Final Result day.
After getting no sleep you get up and wonder what the day holds, will it be the answer you have been hoping for or the one you don't want.we drive to an appointment 3 hours away the whole time looking at passing cars and endless amounts of trees, something comes to mind that makes you feel and you smile then it seeps again and you wonder.
then we arrive, how did we get here in such a numb state, the car it must know where to go, damn car why did it bring us here, damn everything...the hospital parking lot silent and calm but your heart races, your head down because your spirit has been messed with you see a penny, huh pick it up it will bring good luck, you hope, you'll try anything still knowing its just a worthless penny that someone dropped and didn't give a shit to pick up but you pick it up
hoping..
then you sit in a waiting room waiting to be called still at this point hoping for a mistake a wrong answer, because the right answer doesn't make sense to you.why why why
the genetic counsuler called us in and we walked down a corridor that seemed a mile long like in some twisted dream, no don't go, don't walk, I'll stay outside, I don't want to know, if I stay outside I can come up with my own answer. run, the hall covered with melting artwork that if in a better state would appear beatiful but now its appearance just blur of multi colors from your trail of tears
we all sit
who will begin?
the genetic counsuler begins, is she a counsuler ? someone you tell your sadness too, no I don't know this woman, I do understand her job is not an easy one but right now I'm angry and I don't want to hear"do you have any questions?" Yes I have a question, your mind screaming but your voice can't make the words to come out. If genetic consuler could hear your screaming mind would she run from the room? Would she understand? Has she heard the mind screaming before?
"your having twins and your son is healthy the test results show he's prefectly normal"
Yes, you feel your heart again and it's filled with such joy ...I'm having a son and I'm already so proud of him. He's our boy his name is Dakota.
and then it seeps in again....
and you think how will this affect your son they say twins are a part of each other that something is always missing if the other twin isn't around.
and why does God do this, if there is a God? Give you a healthy son to nuture and love and at the same timeput your heart in such a state of angry agony.
You still sit has your partner is talking to the genetic counsuler, who's name is Molly, not hearing everything but picking out words and terms no, go away I don't want to hear anymore, your name is Molly, I don't know any Molly's and if I meet another in the futureit will bring me back here why!then you ask about stem cell research and if stem cells from your healthy boy can save the baby girl.pause the genetic counsuler is lost I wonder what she's thinking.she doesn't know what to say, say something... say yes... what a great fucking idea! why didn't anyone think of that! oh my fucking God we just discovered that stem cells can save your baby girl it just slipped our minds. Doctors and counsulers sometimes forget these things.......we are so sorry........lets get the team ready....no.....no....no....nothing.... your mind and heart are screaming spinning like some evil merry go roundyou want to puke you want to scream and break something , break something because God is breaking your heart, what God would do this make you happy and extremely angry all in one basket. God? There is no God. I was the verge of accepting God but now I'm back to there is no God.
Why am I blaming God, I'm not I'm not blaming anyone. But people are always saying this and that and you'll understand when you believe in God. I 'm just angy right now and hate the world.
Because on June 25 2008 at 1 07pm we found out that our little girl Rain has Full Trisomy 18.and in same moment we find out our son is fine. How do beging to understand the hows on celebrating one life while plaining the burial of another.
the genetic counsuler named Molly who I know nothing about but will never forget her face because she's the one that had to tell us the news, someday I may accept this now I don't .Now she says we must meet with a Doctor somebody,in the conference room, name you can't remember because youdon't want to hear him either. Asking us " what would you like done?"What do you think we'd like done, you fucking dumbass, save our daughter.That's your job, give us some hope, give us something. Before I come across this table and rip your heart out or should I just place my heart in your hands because its already been ripped out.
Trisomy 18 Trisomy 18
We both found ourselves back on the interstate on our 3 hour ride home but now its not just a ride home, but the begining of a long journey. Me, Tina Marie Coloma, my partner Tami Jean Farley, our (unborn) son Dakota Thomas Rain Coloma Farley and our (unborn) daughter Rain Marie Coloma Farley with Trisomy 18.Sound like a fairy tale well its not, fairy tales are just that.and now someone is probably thinking. Their gay well there you go, its Gods way of punishing you.I pitty the fool that is stupid enough to say that to my face or behind my back. but that kind of person continues to live on. There are people out there that don't even want children and children areun-wanted,homeless, nelglected and abused. Why does this happen to people who want children to love and nuture? There are plenty of humans that do not deserve to breath the same air but they just keep on doing it, so why is itthat an innocent child has to die?Yes you might think I'm being a bit extreme, I'm just angry and hurting. Time heals all wounds they say, time. (how long)Some may now hate me, but they are the ones that don't know me to begin with. Someone who knows me will understand. Some might say well the bitch is pyshco ya well whatever. If that was all I was, was a fricken pyshco bitch I'd wouldn't be what I am now. A grieving mother that has yet to know her healthy son and her daughter with Trisomy 18.
My partner drove home because my stomach was full of acid and queasey well honestly I just didn't have the mental abilty to drive and I asked her to drive knowing it would keep her mind semi-occupied.My partner is the one carrying the twins so how can I ask her to drive because I just can't, makes mefeel weak and shitty. How is she feeling, the same I know, just trying to keep her mind busy.Trying to ease her pain the best way I know how , but I don't know how. I never took the classon how to ease someones pain. I try to be there for her in my numb state.
Trisomy 18, Rain, healthy son Dakota, there's more traffic, stem cells, there's more trees getting to see the other side of the interstate, trisomy 18, how long will she live, our baby girl Rain how long does shehave God, oh ya I forgot there is no God, will Dakota like trucks you think as a semi trailer passes you.the sun is shining through my tears , how long will she live how long will she live will her brother remember her? another grass covered field some more trees.......You want to smile for your son but feel so hurt and angry inside, will he feel this when he's born. shove it away push it down. Will you be so busy trying to care for one while the other needs you. the unknown is scary will you stretch your self thin for your children, damn right you will . I will go to the ends of the earth, just give me the map not just any map the one map that can givethe answer that I / we want to hear.
Home
Can't wait to just lay down and do nothing, rest my brain, my mind, my thoughts, my heart. but in the quiet you can think, your mind goes over it all yet again, Trisomy 18, like you have something on your shoulder whispering in your ear, trisomy 18.....make it go away make it stopdo something find the cure find the answer....how long....so you turn on the tv because the tv makes your mind empty and filled with useless images and chatter, it distracts you from reality. the reality of a journey you don't know how to take.and the tv doesn't work, it worked this morning before your journey began but now it doesn't wantto work, you try to get it work in a desperate attempt to rest your thoughts but it won't work, nothing you do will get to work, nothing, you try again and again, still nothing but why are youtrying so hard you don't want to really watch tv you'd rather pick the damn fucking thing up andthrow against the wall so that it breaks into a thousand pieces. You want to grab something andbeat it , put your foot through the screen. Beat your head against it...........but you don't you just give up .....I'll fix it tomorrow and go to bed....laying in the dark for hoursagain that little voice in your head says trisomy 18....how long..........you try desperately to think of your son........it seeps in. and you think is it wrong not want to think about the death of your daughter and only think of your son. Should I ignore that fact thatone is dying and pretend she doesn't have a terminally ill disorder, I wish I could justthink of things you should be thinking about like what are they going to be when they grow up?But its hard when one isn't going to grow up.But I do know that what ever our son grows up to be, he will make me proud.
sleep....
No more hopes of maybe its just a little bit of Trisomy fucking 18. No, we were told yesterday thatit was Full Trisomy 18.Today is June 26th 2008 Yesterday at 1:07 pm we found out our daughter Rain has T-18.Another day another whisper another rider on the emotional train wreck.grab a ticket you wanna come with me ? no you don't.
Celebrating life is not dependent on how many days we exist on earth; it depends on what we do with the number of days we were given.
I have not accepted this yet.
why do babies die?
why why why
how long will she have? makes me wonder about my son, will I drive him crazy because I will become over protective. Will he miss his twin sister?Will he have this emptyiness? Will I miss him doing a "first" because I'm tending to mydying daughter?it's seeps again, will Rain get any "first's" to write down in their baby book.how long.....can someone tell me how fucking long she has, no of course not.the only answer we get is "not compatible with life" "your baby is dying" "not going to makeit to her first birthday" "might not make it home"
Trisomy 18
my stomach hurts, its like having a concrete cinderblock in there.
will she get her first tooth?crawl walk run...run in a field of flowers will she have a favorite doll or stuffywill I get to see her smile and giggle will I get to hear her say Mommy I Love you will I get to tell her that I love her.will I get to teach her ABC's
will I get to hold her before she dies.........will I be able to let her go.................will I loose it and grab her out of that box she is going to be in? Or will we have her cremanted? Its so hard to think about and decide.no one should have to deal with this no onewill I just give up... no....I'll have my son, I get to grieve and be happy at the same time.
we have been told that our son is a "Healer" in many ways I understand this.
I go from happy thoughts about my son and then it seeps in again, seeps that is not the word I should use it doesn't really seep in, its a gut wrenching heart twisting feeling that grips your body and you just want to scream why the fuck is this happening.
karma? what have I done wrong? ME?
What did my daughter do to deserve this?
1 in 3000 babies are born with Trisomy 18.
why mine?
why her?
why not the young woman down the road that uses drugs and really doesn't want the one she has, why does hers live?no, now I'm wrong...I'm angry very fucking angry but I do not wish this on anyone let alone a child. Children are innocent This is not their fault
Celebrating life is not dependent on how many days we exist on earth; it depends on what we do with the number of days we were given.
I have not accepted this yet.
why do babies die?
Im not giving up but thinking maybe I'm in denial. I refuse to believe that my daughter will not live to see her first birthday.
I've also been thinking more about our son.
I read a blog today that gave me a little hope.
Tina Coloma
I have not accepted this yet.
why do babies die?
why why why
I have not accepted this yet.
why do babies die?
why why why
We are pregnant with twins and this is our story.
Final Result day.
After getting no sleep you get up and wonder what the day holds, will it be the answer you have been hoping for or the one you don't want.we drive to an appointment 3 hours away the whole time looking at passing cars and endless amounts of trees, something comes to mind that makes you feel and you smile then it seeps again and you wonder.
then we arrive, how did we get here in such a numb state, the car it must know where to go, damn car why did it bring us here, damn everything...the hospital parking lot silent and calm but your heart races, your head down because your spirit has been messed with you see a penny, huh pick it up it will bring good luck, you hope, you'll try anything still knowing its just a worthless penny that someone dropped and didn't give a shit to pick up but you pick it up
hoping..
then you sit in a waiting room waiting to be called still at this point hoping for a mistake a wrong answer, because the right answer doesn't make sense to you.why why why
the genetic counsuler called us in and we walked down a corridor that seemed a mile long like in some twisted dream, no don't go, don't walk, I'll stay outside, I don't want to know, if I stay outside I can come up with my own answer. run, the hall covered with melting artwork that if in a better state would appear beatiful but now its appearance just blur of multi colors from your trail of tears
we all sit
who will begin?
the genetic counsuler begins, is she a counsuler ? someone you tell your sadness too, no I don't know this woman, I do understand her job is not an easy one but right now I'm angry and I don't want to hear"do you have any questions?" Yes I have a question, your mind screaming but your voice can't make the words to come out. If genetic consuler could hear your screaming mind would she run from the room? Would she understand? Has she heard the mind screaming before?
"your having twins and your son is healthy the test results show he's prefectly normal"
Yes, you feel your heart again and it's filled with such joy ...I'm having a son and I'm already so proud of him. He's our boy his name is Dakota.
and then it seeps in again....
and you think how will this affect your son they say twins are a part of each other that something is always missing if the other twin isn't around.
and why does God do this, if there is a God? Give you a healthy son to nuture and love and at the same timeput your heart in such a state of angry agony.
You still sit has your partner is talking to the genetic counsuler, who's name is Molly, not hearing everything but picking out words and terms no, go away I don't want to hear anymore, your name is Molly, I don't know any Molly's and if I meet another in the futureit will bring me back here why!then you ask about stem cell research and if stem cells from your healthy boy can save the baby girl.pause the genetic counsuler is lost I wonder what she's thinking.she doesn't know what to say, say something... say yes... what a great fucking idea! why didn't anyone think of that! oh my fucking God we just discovered that stem cells can save your baby girl it just slipped our minds. Doctors and counsulers sometimes forget these things.......we are so sorry........lets get the team ready....no.....no....no....nothing.... your mind and heart are screaming spinning like some evil merry go roundyou want to puke you want to scream and break something , break something because God is breaking your heart, what God would do this make you happy and extremely angry all in one basket. God? There is no God. I was the verge of accepting God but now I'm back to there is no God.
Why am I blaming God, I'm not I'm not blaming anyone. But people are always saying this and that and you'll understand when you believe in God. I 'm just angy right now and hate the world.
Because on June 25 2008 at 1 07pm we found out that our little girl Rain has Full Trisomy 18.and in same moment we find out our son is fine. How do beging to understand the hows on celebrating one life while plaining the burial of another.
the genetic counsuler named Molly who I know nothing about but will never forget her face because she's the one that had to tell us the news, someday I may accept this now I don't .Now she says we must meet with a Doctor somebody,in the conference room, name you can't remember because youdon't want to hear him either. Asking us " what would you like done?"What do you think we'd like done, you fucking dumbass, save our daughter.That's your job, give us some hope, give us something. Before I come across this table and rip your heart out or should I just place my heart in your hands because its already been ripped out.
Trisomy 18 Trisomy 18
We both found ourselves back on the interstate on our 3 hour ride home but now its not just a ride home, but the begining of a long journey. Me, Tina Marie Coloma, my partner Tami Jean Farley, our (unborn) son Dakota Thomas Rain Coloma Farley and our (unborn) daughter Rain Marie Coloma Farley with Trisomy 18.Sound like a fairy tale well its not, fairy tales are just that.and now someone is probably thinking. Their gay well there you go, its Gods way of punishing you.I pitty the fool that is stupid enough to say that to my face or behind my back. but that kind of person continues to live on. There are people out there that don't even want children and children areun-wanted,homeless, nelglected and abused. Why does this happen to people who want children to love and nuture? There are plenty of humans that do not deserve to breath the same air but they just keep on doing it, so why is itthat an innocent child has to die?Yes you might think I'm being a bit extreme, I'm just angry and hurting. Time heals all wounds they say, time. (how long)Some may now hate me, but they are the ones that don't know me to begin with. Someone who knows me will understand. Some might say well the bitch is pyshco ya well whatever. If that was all I was, was a fricken pyshco bitch I'd wouldn't be what I am now. A grieving mother that has yet to know her healthy son and her daughter with Trisomy 18.
My partner drove home because my stomach was full of acid and queasey well honestly I just didn't have the mental abilty to drive and I asked her to drive knowing it would keep her mind semi-occupied.My partner is the one carrying the twins so how can I ask her to drive because I just can't, makes mefeel weak and shitty. How is she feeling, the same I know, just trying to keep her mind busy.Trying to ease her pain the best way I know how , but I don't know how. I never took the classon how to ease someones pain. I try to be there for her in my numb state.
Trisomy 18, Rain, healthy son Dakota, there's more traffic, stem cells, there's more trees getting to see the other side of the interstate, trisomy 18, how long will she live, our baby girl Rain how long does shehave God, oh ya I forgot there is no God, will Dakota like trucks you think as a semi trailer passes you.the sun is shining through my tears , how long will she live how long will she live will her brother remember her? another grass covered field some more trees.......You want to smile for your son but feel so hurt and angry inside, will he feel this when he's born. shove it away push it down. Will you be so busy trying to care for one while the other needs you. the unknown is scary will you stretch your self thin for your children, damn right you will . I will go to the ends of the earth, just give me the map not just any map the one map that can givethe answer that I / we want to hear.
Home
Can't wait to just lay down and do nothing, rest my brain, my mind, my thoughts, my heart. but in the quiet you can think, your mind goes over it all yet again, Trisomy 18, like you have something on your shoulder whispering in your ear, trisomy 18.....make it go away make it stopdo something find the cure find the answer....how long....so you turn on the tv because the tv makes your mind empty and filled with useless images and chatter, it distracts you from reality. the reality of a journey you don't know how to take.and the tv doesn't work, it worked this morning before your journey began but now it doesn't wantto work, you try to get it work in a desperate attempt to rest your thoughts but it won't work, nothing you do will get to work, nothing, you try again and again, still nothing but why are youtrying so hard you don't want to really watch tv you'd rather pick the damn fucking thing up andthrow against the wall so that it breaks into a thousand pieces. You want to grab something andbeat it , put your foot through the screen. Beat your head against it...........but you don't you just give up .....I'll fix it tomorrow and go to bed....laying in the dark for hoursagain that little voice in your head says trisomy 18....how long..........you try desperately to think of your son........it seeps in. and you think is it wrong not want to think about the death of your daughter and only think of your son. Should I ignore that fact thatone is dying and pretend she doesn't have a terminally ill disorder, I wish I could justthink of things you should be thinking about like what are they going to be when they grow up?But its hard when one isn't going to grow up.But I do know that what ever our son grows up to be, he will make me proud.
sleep....
No more hopes of maybe its just a little bit of Trisomy fucking 18. No, we were told yesterday thatit was Full Trisomy 18.Today is June 26th 2008 Yesterday at 1:07 pm we found out our daughter Rain has T-18.Another day another whisper another rider on the emotional train wreck.grab a ticket you wanna come with me ? no you don't.
Celebrating life is not dependent on how many days we exist on earth; it depends on what we do with the number of days we were given.
I have not accepted this yet.
why do babies die?
why why why
how long will she have? makes me wonder about my son, will I drive him crazy because I will become over protective. Will he miss his twin sister?Will he have this emptyiness? Will I miss him doing a "first" because I'm tending to mydying daughter?it's seeps again, will Rain get any "first's" to write down in their baby book.how long.....can someone tell me how fucking long she has, no of course not.the only answer we get is "not compatible with life" "your baby is dying" "not going to makeit to her first birthday" "might not make it home"
Trisomy 18
my stomach hurts, its like having a concrete cinderblock in there.
will she get her first tooth?crawl walk run...run in a field of flowers will she have a favorite doll or stuffywill I get to see her smile and giggle will I get to hear her say Mommy I Love you will I get to tell her that I love her.will I get to teach her ABC's
will I get to hold her before she dies.........will I be able to let her go.................will I loose it and grab her out of that box she is going to be in? Or will we have her cremanted? Its so hard to think about and decide.no one should have to deal with this no onewill I just give up... no....I'll have my son, I get to grieve and be happy at the same time.
we have been told that our son is a "Healer" in many ways I understand this.
I go from happy thoughts about my son and then it seeps in again, seeps that is not the word I should use it doesn't really seep in, its a gut wrenching heart twisting feeling that grips your body and you just want to scream why the fuck is this happening.
karma? what have I done wrong? ME?
What did my daughter do to deserve this?
1 in 3000 babies are born with Trisomy 18.
why mine?
why her?
why not the young woman down the road that uses drugs and really doesn't want the one she has, why does hers live?no, now I'm wrong...I'm angry very fucking angry but I do not wish this on anyone let alone a child. Children are innocent This is not their fault
Celebrating life is not dependent on how many days we exist on earth; it depends on what we do with the number of days we were given.
I have not accepted this yet.
why do babies die?
Im not giving up but thinking maybe I'm in denial. I refuse to believe that my daughter will not live to see her first birthday.
I've also been thinking more about our son.
I read a blog today that gave me a little hope.
Tina Coloma
July 8 2008
80% die in the first week and few survive beyond a few months although there are 10 documented cases of survival to the teens but with very severe handicap. The median length of survival is 6 days.1 About 5 to 10% survive beyond a year.
Newborns have a 40% chance of surviving to age 1 month. Infants have a 5% chance of surviving to age 1 year. Children have a 1% chance of surviving to age 10 years.
Celebrating life is not dependent on how many days we exist on earth; it depends on what we do with the number of days we were given.
I have not accepted this yet.
why do babies die?
why why why
so a few days have gone by I'm still has numb and angry as I was when I found out. Still have that stupid worthless penny in my pocket, I dropped it once and thought about not picking it up but in a panic I did.
I have been searching for an answer to no avail, nobody has one well not one I want to hear.
We read to the twins awhile back The ABC Book by Dr Seuss in the dark with a flashlight. I know I will get to do this again with Dakota but with Rain I do not know. I keep going over things in my head, things that I want to do with my dying daughter but how I do I fit a lifetime into what could be only minutes?
Will she get to finger paint? Will Dakota feel a void while he's doing his alone having this emptiness he will not completely understand until he's older.
I talked ...actually talked about it on the phone with my Mother, I haven't talked to anyone about it expect my partner of course. It seemed so weird like I was out side my body listening to someone else talk. It was a strange feeling but I guess if I talked more to people it wouldn't be so like... this can't be happeningwake up its only a nightmare......wake up.....
So why do I feel so numb? An innocent life is going to taking and its gonna hurt like hell. That's the worst hurt losing a child.....
What will she get out of her short life? Will she learn to say Mommy?
Do I sound selfish?....guilt maybe, wanting my child to do things for me, is that wrong. Should I just accept what Rain will be able to give me. Yes I will without a doubt accept her for what she will be able to give. Its just not fair. You dream of a entire life with your children when you find out that your pregnant.
The tiniest things ...
The tiniest things ...Through out my day I wonder , will Rain get to brush her teeth while I brush mine. When I brush my hair, I wonder how long Rain's hair will be. When I eat a bowl of cereal I wonder will Rain live long enough to eat from a bowl instead of a tube. When I go outside and look at tree's and bird's will Rain touch a tree, will she get to see a bird fly overhead.
Everything my whole day is filled with what it's.
Will she live long enough to do artwork?
AND WHY HAVE THE DOCTORS DOOMED HER TO DEATH?
I have been searching for that answer and we have contacted a few other parents that have lost their babies because of Trisomy 18 through emails. And they say we have to fight tooth and nail to get the doctors to do surgery. Your damn right I'm going to fight, not just going to let this one go, if I have to end up on the news at 5 I'll make them do something, I'm a COLOMA and Coloma's don't give up or give in. I'm stubborn as all hell!
In reference to all the blogs I have read. It's my new daily routine looking for hope or answers. My blog is what I truly am feeling, I know it's a bit rough and not filled with God and Faith but like I've said before.
I'm not there yet, I don't know if I will every be.
I read one blog and it said "Our little girl doesn't have Trisomy 18 anymore" I jumped right on that one and for a few seconds I thought ....There's a cure! What did they do? I felt so much hope and ease for those skriddy seconds but it never dawned on me that the little girl didn't have Trisomy 18 anymore because she had died. Once I got to that line my hopes were shattered.
The more I search the net the more I find that there really isn't a lot of informationon on that damn T-18 but so many children are dying from it. Why isn't it a more well known syndrome why isn't anyone trying to find a cure? The fricken damn government can spend billions fricken trillions on WAR but how much on T-18 research.
STEM CELLS WILL SAVE OUR LITTLE GIRL SOMEDAY BUT SHE MAY NOT LIVE LONG ENOUGH TO BE CURED.
Maybe our son Dakota who's been deemed a "Healer" will find a cure.
July 17 2008
If I knew what I know now I would have laid my hand on Tami's belly longer. On the night of the 16th we were laying in bed feeling the babies kick, Dakota andRain. I can still feel the movement in my memory the last time I felt Rain kick at my hand. It was a strong healthy kick the kind that make feel like everything is okay....... But what I know now is that she was saying good-bye to us. If I had known I would have said good bye too. but I didn't know.
Rain Marie passed away sometime in the night. Our little butterfly is free from any pain, free from her life of what would have been tubes and surgery's. Her heart was too weak to live. Now she can forever live in our hearts.
Rain no longer has Trisomy 18. and that will be the last time I type that word.
Every morning since we found out I would type that in a search engine trying to find an answer something someone anything that would help save our little girl. There were no answers and no cures.
So our un-born baby girl gave her life so that her brother could live.
She hung on long enough for him to be okay with out her. Dakota has been very active inside the womb, he must know or feel something.
Rain let go so we could hold our son Rain let go because she didn't want us to worry or stress over her anymore. Rain let go because she already knew the answerwe were seeking.
We gave our "birth plan" to Doctor H yesterday. Our plans for what we wanted for our twin babies upon delivery. How we wanted procedures to go if Rain came to be born and how we wanted Dakota treated. We wanted them to be together so it would help, we wanted the Kangaroo care that would help we wanted Rain to be resuscitated we wanted foot prints and hand prints locks of hair, pictures
we wanted time....
Rain knew......we didn't. She knew it would hurt.
But we did want her not to feel any pain.....she's not now.
I imagined a life time with them both now I can only wonder and see our little girl through our son.
Things I knew Rain liked... spaghetti. and the stories we read to her and her brother Dakota Rain Thomas Coloma Farley.
Rain will be missed but not forgotten
Rain lived 155 Days
Celebrating life is not dependent on how many days we exist on earth; it depends on what we do with the number of days we were given.
I have not accepted this yet.
why do babies die?
why why why
July 19th 2008
It hurts.
So bad I want to scream and take my fists and pound them into a brick wall.
My partner Tami is going through hell and there's nothing I can do.
I can't fix this one.
We found out yesterday that Tami will carry Rain to term and her lifeless body
will come into the world with no pain, no cries, no heart beat, Rain is already gone but come October we will get to hold her and we will have to let her go. Will I beat some doctor senseless "bring her back, do something NOW"
We will get the foot prints and hand prints, pictures and her locks of hair but right now all I want is my daughter alive.
can anybody give me that.............
Tami went in the babies room this morning to go through some of their things,I haven't yet, it must have been gut renching to look and hold clothes and toys that were meant for her daughter. How she must feel with Rain's lifeless body inside her.
I was planning on a college fund for the both of them. I never thought I'd beplanning Rain's burial fund.
I'm going to go now dig me hole lay in and cry.
A friend sent us this http://www.dashpoemmovie.com/ it hurts deep when you've lost a child.
I have not accepted this yet.
why do babies die?
why why why
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