January 2008: Our Last Day Of Hope

today was a good day.  every single doctor, nurse, and fellow NICU parent that we have talked to have all said the same thing:  the NICU is a roller coaster.  there are good days and there are bad days.  one doctor said that even though there are bad days, you always want to keep seeing progress and slowly but steadily climb up and out of this pit. 

so far, Charlie has only had a couple good days.  every other day has either been bad or on the verge of bad.  we are not progressing.  for every step we take forward we take two steps back.  we still have no answers.  no prognosis.  no reason.

today the sun was out.  a rare thing these days.  it was a beautiful day.  cold, but not as cold as it has been.  jay and i had a nice walk over to the NICU from RMH.  we got there and started our routine.  sit with Charlie.  we listened to the morning rounds.  we talked with the nurse.  we went to lunch in the cafeteria.  then we sat with him all afternoon.  just watching him.  jay has two tasks that he has taken on and loves every second of.  his first is to brush Charlie's hair.  i don't know why he likes this so much, but every time he comes in to see him, it's the first thing he does.  he gets out Charlie's little brush and combs his hair.  his second task is to read books to him.  he doesn't read as much as he just shows Charlie the pictures.  he loves to do this.  i think it makes him feel like he is teaching him something. 

then we  stayed for the evening rounds.  Charlie has done so well today.  he has had a few "de-sats", but nothing too major.  i don't think they even had to air-bag him at all today.  he was taking more breaths on his own.  we didn't leave the hospital until about 9:00 at night.  as we were standing outside waiting for the shuttle to take us back to RMH, jay was looking at me.  i said "what?".  and he said, "nothing.  i think Charlie is going to be okay".  i smiled and said, "so do i". 

Present Day: Love Me Some Lilacs

look at me!!! i learned how to post photos on my blog!!!  unfortunately, i take my pictures so that they're big files, so it takes forever to load them up here.  i also don't know yet how to position them well within the post, so for now, here they are.  what do you think of my professional terminology?  big files....pretty pictures....that's the extent of my photography knowledge. 

so aside from the sneezing, runny nose, watery eyes and itchy throat, lilacs are by far one of my favorite flowers.  i think they're absolutely gorgeous...they have that whimsical feel that i absolutely love.  again, i'm so inspired by that new blog i'm following, and i want SO badly to have a gorgeous, simple, well-decorated house.  and as much as i want that, i want awesome curb appeal too.  i think landscaping can really make or break a house.  right now, we seem to be in the "break" phase, but we're working on it. 

so, maybe if i have the patience to wait for the photos to upload i'll share more "pretty pictures" with you. 

January 2008: A Prayer

dear god,

i know i don't go to church much, and i know i don't pray very often.  to be honest, i really don't know how to pray.  i've heard that if you want to pray to just pretend that you're having a conversation with someone. that's really hard for me, and i end up feeling stupid, so i never say my prayers outloud.  the term "pray" is so overused, i don't even know what it means anymore.  i don't know what i believe anymore, but i want to believe that you know what is my heart.  but just in case, here is my prayer....outloud.

please god. please make my son healthy.  please make him okay.  i can't watch him suffer any longer.  i hate every second that he struggles to breathe.  he can't move.  he can't roll over, he can't be held, he can't feel my love because all he can do is lay there with a breathing tube, IVs, monitors, and every day i feel more and more tortured as i watch him suffer.  i love my son more than life itself.  i would do anything for him.  please, please just tell me what to do.  please let me somehow take his pain and bear it so that he will be okay.  please give me his pain and his sickness.  i don't care how much it hurts, i just want him to be okay.  please put me in that room, laying there alone.  please.  i will die for him if you will just let me.  i will die any way you want me to just to have him live a healthy, normal life.  i want so much for him.  i want him to know all the joy that can be in this world.  i want him to love another person the way i love him.  i want him to run, and to play, and to have friends, and go to school, and get married, and have children.  i want him to live a happy life.  i want him to dream, and to make those dreams come true.  please.  i am begging you from the depths of my soul.  just make my son okay.  i will do anything.  i can't lose him.  i can't live without my child.  if you take him you better take me too because i will have no life if i don't have him.  i love him so much it hurts.  i love him like i never thought possible.  please god.  please.  i am here on my knees, pleading with you.  i am crying like never before.  my very existence is so wrapped up in my son that i can think of nothing else.  please god.  please just make my son healthy.  please just make my son okay.  please give him the miracle that only you can give, and the miracle that he needs and i need more than anything.  make my son okay. 

Present Day: Need some ideas

okay, i know i only have a few followers, but please, can anyone give me some ideas.  i'm what i like to call...."creatively challenged".  i love projects and whatnot, but i'm one of the least creative people out there.  i just started following a new blog, and i'm TOTALLY inspired to get my house looking a little more like a home....little less like a dorm room.  sooooo....i have a whole bunch of rocks that are extremely special to me and i've been wanting to do something with them for 3 years now.  these aren't cool rocks or anything, they're just your standard, grey rocks, all different shapes and sizes.  but i need to showcase them somehow.  HELP!  any ideas?  my blog isn't cool enough to be able to offer an incentive reward for ideas, but i'd be extremely appreciative of your help.

here's the new blog i'm following....haven't read too much yet, but i like what i see so far.  she's a little more popular than me...over 11,000 followers.  can you tell i have blog-esteem issues?

http://thriftydecorchick.blogspot.com/

Present Day: Mother's Day, The Good, The Bad and The Ugly

strong warning about this post:  you're either going to love it or hate it.  if you have lost a baby and are anything like me when it comes to anger, this post might be for you.  if not, you may not want to read any further...

well, today was mother's day.  mother's day...over the past four years those words, and this day has come to mean so many different things to me.  i think that you could use nearly every human emotion to describe how i have felt about this day.

the ugly:
let's call a spade a spade here...grief is a fucking bitch.  it is ugly, it is nasty, it fills you with emotions you had no idea you could feel.  i never knew how desperately i could want to just die until my first mother's day as a mother.  it was horrible.  it was unbearable.  Charlie had died, and nobody on this earth could possibly understand the depths of my pain.  everyone i talked to tried to make me feel better about it, and all i wanted was to feel worse.  i thought that if i just felt bad enough i would actually die, and then it would be over.  i saw commercial after commercial advertising heartfelt messages about mother's day.  how could they do that to me?  how could they bring me so low?  how could they stand there and advertise cards and flowers for mothers, showing pictures of mothers holding babies and chasing around kids.  nobody even knew i was a mother.  and those who did know that i had given birth to a son and watched him slowly die didn't think of me as a mother.  it seemed that everyone around me thought that in order to qualify as a mother you had to have a living baby.  and i couldn't do this.  i  had nothing.  i was empty and lifeless.

the bad:
i watched ellen's mother's day special on saturday (again....dvr).  the main reason i watched it was because i wanted to see if that by some one in a million chance she might read the letter i had sent her asking her to wish loss moms a happy mothers day.  as soon as it started, i saw the audience full of pregnant women and i thought to myself "well, you did it to me again you stupid bitch".   i could barely watch. i had to fast forward through just about everything.  did you see all the baby stuff she gave all of them?  it was insane.  it made me want to blow up my tv.  these were all first time moms.  let me give you a little reality check...to come home after your baby has died and see the bassinet waiting, and the car seat locked in place, and know that they will never be used by your baby is a trauma that will haunt you until the day you die.  when you have to pick out an outfit for your baby to be buried in, you will never wish for death to take you more than at that moment.  you fools.  you god damn fools.  you have no idea.  you are living in lala land while some of us will be walking through hell on earth for the rest of our life.  my message to every pregnant woman out there...don't buy a thing.  you don't need it.  if your baby comes out healthy and ready to go home in two days, all you really need are diapers, wipes, food, and a few clothes, all of which your partner can get while you're in the hospital, and some of which some hospitals will even give you when you leave.  savor your baby...not the merchandise.

i know every person that reads this is thinking that i'm nothing but a jealous bitch.  and you're right. i am.  i'm angry, i'm jealous, i'm mad.  it is not fair.  the first time moms on ellen's show were bouncing around and dancing.  my first pregnancy, i was in so much pain i cried at night and thought i wouldn't make it one more day.  my second pregnancy, i could have easily died.  my third pregnancy, i was on bedrest for three months.  pregnancy has never been a happy thing for me.  it has been nothing but a nightmare filled with fear, and hopes that 3 out of 4 times were crushed. 

and you know what i hate most of all?  i just can't get over it.  everyone probably thinks i need to shut up and quit whining and complaining.  but i can't. get. over. it.  i have LS now.  and he is the reason i get up in the morning.  he's the reason that for the first time since january 2008 i have wanted to die.  he's everything to me.  but i still want my other three babies.  i want his siblings.  i want the chaos in my house of having four boys.  i want to be a happy pregnant person because that's all i see around me.  i want something that i will never have.  and some days i still just can't accept that i can't have it.

so for now, i'm breaking up with ellen again.  i thought i was in a better place and would be able to handle the insensitivity, but obviously i'm not.  obviously i can't cope with someone rubbing it in my face that there are hundreds of happy pregnant women out there.

the good.
i have a healthy baby.  i have a living son.  i tell him every day that i couldn't love him any more even if i tried. today i could go out in public on mother's day and people knew that i was a mom.  and there is no better feeling in the world than seeing his face light up and his arms flail when i walk up to his crib every morning.  i love you LS.  i owe my life to you.

Present Day: Blogging Dummy, Part II

okay seriously...can anyone tell me how i reply to a comment someone has left?  on other blogs i've seen there's a reply button, but i can't find this on my own blog!

anyway, i wanted to respond to jessica for the nice comment she left on my ellen post.  thank you for letting me know that i'm not the only one out there that thinks that infant loss gets ignored.  i appreciate your kind words, and not feeling like i'm nuts!

Present Day: The History of Ellen and Me...Ellen and I...Me and Ellen.....Ellen and Me, Right?

so after reading heather spohr's post today and feeling insanely jealous that she got to go see ellen degeneres, i want to share with you why ellen and i are best friends (a fact she still isn't aware of).

it all started three years ago, a couple of months after Charlie died.  i know i haven't gotten to that point in my story yet, but if you've been following me (let's hear is for the sexy 7!), you probably figured that that's where we were headed with Charlie.  there's a reason i capitalize his name and no one else's...actually, i don't even know why i do that.  i always capitalize the names of anyone who has died. don't ask me why, i just do.

but i digress....so a few months after Charlie died, i happened to tune into the ellen degeneres show.  i was hooked.  it was love at first sight.  i found myself smiling for the first time in months.  i of course felt guilty smiling and enjoying something.  but, for that time, it was an hour out of my day where i could get halfway into another world.  it kept my attention long enough to prevent a breakdown.  however, i did have a problem with her show.  it was the way that she treated anything dealing with babies.  i mean, she really does talk about babies a lot.  she always asks her guests about their kids, she kisses the bellies of her pregnant audience members, she shows funny videos of babies...but, i tried to just tune that part out and continued watching.  it was my escape...or at least as much of an escape as my mind would allow.

then, in may of 2009 i was having yet another sleepless night and i decided to write to ellen.  mother's day was coming up, and i was feeling really horrible.  i was pregnant with the Twins, and even though i was filled with hope, i felt like shit.  just plain shit.  Charlie was gone.  i didn't know what i was. nobody would have any clue that i was a mother if they saw me walking down the street.  i felt alone, ignored, betrayed, left out...do you want me to keep going with the description?  i started to wonder...am i really even a mom?  i know i was pregnant, i know i delivered a baby, but what am i? i was desperate for someone to make mother's day really special for me.  i was dying inside.  so, i wrote  ellen the letter that i'm putting below.  i didn't send it right away though.  i couldn't decide whether or not i actually wanted to take the plunge and hit the send button.  a few days later, ellen announced that for mother's day her entire audience was going to be pregnant people.  i thought someone had just driven an knife through me.  i don't know why it hurt so badly, but hearing that just made my heart sink, and i stopped watching her show right then and there.  i couldn't take it anymore. 

a couple months ago, i decided to give ellen another shot.  i started recording it again (yeah right, like i'm going to sit through commercials).  i've been watching her faithfully for a few months now, and i have to say that i'm happy to be back.  i still get upset with the way she talks about babies and whatnot, but having LS makes it easier to cope with that anger and frustration.  so, i wrote ellen again.  this time, i actually sent the message.  the first message i sent basically told the story i just told you (in a lot fewer words).  i didn't have room to include my original letter, so i wrote her again a week or so later and put in my original letter.  NO RESPONSE!!!!! man!!!!!  not that i was really expecting one, but i was hoping.  in my first letter, i asked her if she would fill her audience this mother's day with moms who have lost.  yeah i know...totally unrealistic and depressing, but it would sure make one hell of a point.  i gaurentee she wouldn't have to look very hard to fill up her seats with loss moms.  think how amazing that would be.  think how many stories would be in the room.

which brings me to my rant of the day...WHY THE F*** DO PEOPLE IGNORE INFANT LOSS?  i swear, sometimes i get so mad about it that i feel like my head is going to explode.  am i totally nuts? does anyone else feel like infant loss is a completely taboo topic that no one talks about?  all these damn commercials, movies, tv stars, movie stars, magazines....EVERYWHERE you look, it's one happy baby story after another.  i've watched the show NICU only a couple times, then i had to stop watching.  all the babies i saw went home.  am i living in a completely warped world or something? i swear, i really didn't know about infant loss until it slammed me in the face.  i didn't even know it was a possibility anymore.  i thought that with today's modern medicine, babies always lived.  i'll ask the question again, and hopefully now that i have the sexy 7 followers, i hope someone will respond....am i the only idiot out there?  i feel like i was SO stupid, SO ignorant.  am i justified in my opinion that nobody talks about loss?  what is going on here?  sometimes i feel like i'm living in a completely different world than what i see in the media. 

so that's why i have my pie-in-the-sky dream of ellen filling her audience with loss moms. i don't know about others, but it would mean the absolute world to me to be recognized as a mom on mother's day...not because i have one living son, but because i have four children altogether. 

here's the original letter i wrote to ellen...

“Mother’s Day is quickly approaching and I wanted to ask you to recognize a very special group of mothers.  We are mothers that are often overlooked or avoided.  Overlooked because many do not consider us to be mothers, and avoided because it is too awkward and painful to confront us.  We are the mothers whose babies have passed away.  We find ourselves asking “What am I?”.  What are the criteria for being a mother? We carried a life, many of us gave birth, and many of us were even able to hold our babies.   Yet we are not changing diapers and pushing around strollers.  We are not kept awake by 3 AM feedings, but we have our own struggles that we must face.  What do we say when someone asks us if we have children?  What do we do with the car seat and the crib that we purchased in anticipation of our baby’s arrival?  How do we hope for another baby without feeling that we are betraying the memory of the one we lost?  Every mother has a story, and we all deserve to be remembered – whether our child is with us or not. 
     I’m hoping you’ll pass along two messages for me.  First, to the family and friends of a grieving mother – acknowledge us!  We are longing to have our child’s existence and our motherhood validated.  And to all of the grieving mothers out there –you are still a mom!  Your arms are empty, but your heart is not.  Your love does not die when your baby dies.  Your love for your child grows every day, and this is what makes you a mom.  So to all moms out there, and especially to grieving moms, I hope you have a very special Mother’s Day.”