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Our big girl!
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Kylie 1 day old

Kylie 1 day old
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Bryleigh Addison

Bryleigh Addison
Our youngest miracle

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Saturday, July 17, 2010

A statement

This blog is a place for me to share my feelings, valid or not. This is a place for me to write down how I feel, how I perceive things, and to work through my grief. It is a place for me to feel free to say things that I have a hard time saying out loud, that I have to work through in words that are written, since writing is my comfort zone.

Yes, I am overly emotional. But I am entitled to my own opinion.

You just don't realize- I would not wish this pain and suffering on my own worst enemy, possibly even Satan himself. This pain is a terrible awful, searing pain- a pain that feels like it eats away my insides every single day, and it takes all my energy and all I have to just get through each day in one piece. It takes everything I have to get to the night and make it through that- because when I am sleeping, the nightmares commence.

If someone can prevent going through this pain, if someone can prevent this agonizing reality, then they should. You just don't realize how terrible it is until you're going through it, and I can't make people understand enough how important it is to protect your children as much as possible from things like SIDS, etc. Over 50% of SIDS deaths occur due to co-sleeping. The odds are just too risky for me. I myself move a LOT when I sleep. I could not do that. I'm not saying someone is stupid for doing it, but I'm saying they are risking a whole lot- a lifetime, really. It breaks my heart in two when I see people make these decisions, because I don't have the opportunity to make my own about it, because Kylie is not here. I never knew anyone in my immediate family did that, so it wasn't like I was giving a personal attack. It's just that I see it too much. Take the Kardashian girl, Kourtney I think, who says every night she co-sleeps with her son Mason. That is what sparked this whole thought process, because that is just a risk too great to handle. Every night she risks losing her son, when she could prevent it.

Also, I have this blog because I need to feel like I can have a safe place to grieve in the way I need to. I have been dealing with people being critical of me because they feel I need to see a therapist or someone, because I'm not really grieiving as I should, or because they feel I'm not dealing the way I should. I'm sorry, but no parent grieves the same, and I don't think I should have to meet someone else's criteria of how to grieve over my own child. Just because it seems unhealthy to you doesn't mean it is wrong for me, because if you haven't lost your child, then you won't know. I never said anyone in my immediate family has said stupid things to me, because they haven't. People in general say stupid things all the time- hurtful things. No one in my family has done that before- they know not to say "well at least you know you can have kids now."

I guess that I was right about some things. If you haven't been through it, you can't understand what is going on in my head, or how things seem to me, because lately, I have felt very put down, picked on, and not listened to. I guess these things aren't for me to share here, either, because no one will ever truly understand unless they've been through it, and again, I am having to worry about hurting other's feelings when my own are completely crushed. I thought I had found my safe place.

This grief is killing me. This grief consumes me. This pain is raw and real and fresh, and it starts new every day when i wake up, because all I want in this world is to have my duaghter here with me like most other people. I would give anything to have her here. I would trade places with her in a heart beat, and I would give my life to have hers back. She is my everything, and I now have lost her. Now that we are past the 9 month mark and fastly approaching the 10-month mark, that reality is even more painful, that I am less than 3 months away from my daughter's 1 year birthday and 1 year angelversary... and I don't even want to think about that.

And to clarify one more thing, I have not asked for much. All I have asked for is to be listened to, to be sensitive to my feelings/grief, and to be there for me, and to acknowledge Kylie's special days. It is so important to me, and that is all I have asked. I didn't think that was too much.

Friday, July 16, 2010

A glimpse of who I am

I am not always an easy person to read. I will tell you about me, the me minus the grief, and then I'll add in the me with the grief, if that makes any sense.

I am and always have been a very emotional person. I wear my heart on my sleeve, and I get my feelings hurt easily. I have always cried when reading, watching TV, or watching a movie. I have always been this way.

I have a big heart. I will give and give and give, even if that means I have to go without, because I can't stand for someone to be in a bad place or situation. I have a really hard time saying "no," and even if I do say "no," I feel terribly guilty and let it eat at me for a long time after. I will do for those I care about, not because I have to or because I feel obligated, but because I WANT to. That is how I was raised- my mom will do and do and do for people and will go without. She never does anything for herself.

I have a hard time dealing with confrontations. I don't do well with being in an argument or fight with someone, and for me, it is embarrassing and hurtful. I tend to shy away or walk away- a heated argument is not for me. I also tend to avoid verbal confrontations more than any kind- I would much rather tell you how I feel in writing, because it is "safe" for me.

I am very trusting (if you're not a medical professional working on me). I trust people more than I should; it is just in my nature (again, like my mom). I will let people use me as a door mat all day long, and really, if you tell me you're going to do something, then I expect that you will.

In the same sense, I don't take my friendships lightly. I take friendships very seriously, and I do expect a LOT out of my closest friends, because I would hope that they would expect a lot from me. Close friends should be just that- CLOSE friends. I don't take my part of the bargain lightly, and I don't think others should, either.

I worry a LOT. I guess you could call it serious anxiety, and that is probably right. I will stay awake at night worrying that I didn't pay a bill, that I didn't shut the windows to my classroom, if what I said to someone sounded mean, if someone thinks I'm a bitch, etc. Stupid stuff worries me, serious stuff worries me.. it keeps me up and it keeps my stomach in knots. I worry about everything, literally.

I also take a lot of things personal. It is just how I've been. I think it has to do with how emotional and anxious I've always been. I worry what people think of me all the time, and then if something changes or is different than normal, I take it as a personal issue. I can't help it- it's just me. That in turn causes my anxiety to keep me up all night again. Things just really get to me.

I am a writer, in a ceratin sense. Writing is where I feel comfortable, where I feel I can put my words down safely, and where I feel like my words matter. Because, see, I can take the words in my mind and put them on paper and never have to speak them, but still feel like I have vocalized what was weighing on my mind. When I'm in the writing mood or the feeling just comes to me, I can spit out a poem in 10 minutes or less. When I'm in the writing mood, the words just flow.

I am a reader. I love books. I love to read and get lost in a novel, to pretend that I am part of the action. I love to become emotionally invested and so deep into a book that no one can bring me out of it. It is my escape from reality, my fantasy world. I can visualize what the author describes, and I can place myself in the action, as one of the characters, or as a bystander. I love the feeling of finishing a good book and being satisfied, or eager to read more. I am a hungry reader, I guess you could say.

I have always loved kids. My goal was to be a teacher from the time I could talk, and to also be amother. My biggest fear as I got older was the fear that I would never be able to be a mother. It was alwyas in the back of my mind (I know- what 14 year old thinks they can't be a mom? Me. That's my anxiety working in on me). When I was diagnosed with PCOS at 21, that fear became much more real to me. However, with that being said, it has always been second nature to me to be around kids, especially babies. I am not bragging, but I do have a way with kids, and they are drawn to me. I can quiet and calm the fussy babies, I can make even the rowdiest kids quiten down. I can rock and soothe, and I am a pro at putting babies to sleep. Kids are special, special people- and they need so much love and care. That has always been easy for me.

Now take all of those things (which, by the way, just give you a glimpse of me), and multiply some by 10- my anxiety, my fears, my emotional state, my taking things personally, etc... and that is who I am now. I am even more emotional, even more anxious, even more easily hurt than before. i expect even mor eout of my relationships because I need my friends.

I feel like I can't count on anyone anymore. What I need from my friends and family is to be there for me, to check in on me, to not be a "fair-weather" friend. I feel like so many people avoid me now because they don't want to be brought down by my grief or sadness, like it is too hard or depressing to be around me or to listen to me. All I need are ears to listen- I know a lot of people do not and will not ever understand what I am going through, but is it too much to ask to have people listen?

I can't call people and beg them to listen to me, or demand them to listen, but I don't feel like I can call and tell them how I feel without them asking, because apparently, I can't even talk about how I feel to some of my family members. I just don't understand why I have to tiptoe around others if I am the one who suffered the loss of MY child--why should I have to stop grieving in my own way to make someone else's grief a little easier? Why aren't people worried about how I am grieving or doing?

And even if it isn't to talk about Kylie or my grief- just normal stuff- people still avoid me because they are either 1.) afriad of Kylie coming into the conversation, 2.) afraid of upsetting me, or 3.) just not sure what to do or say anymore. I don't understand why people can't just be honest and up front with me. I've already had the worst hurt in my life, and nothing you can say or do can possibly make me feel any worse than the thought that I have to live my entire life without my daughter, that sh ewill never get to go to school, get married, and have babies. I will never get to see what her children will look like or how I will feel as a grandmother to her children, or how I will feel while planning her wedding, or the pride I would have watching her walk across teh stage to get her diploma. Nothing can hurt worse than the reality that I live in, so why won't people communicate with me? It seems that it is easier to avoid me altogether, but is that really necessary?

And you know, maybe people think I am being immature, and maybe people think that I need to "grow up." However, I have not tried to hide any of my feelings or emotions, and I am not going to alter who I am and how I deal with this horrible reality just to make someone else happy. It may sound incredibly selfish, but I cannot worry about someone else's grief while dealing with my own. I'm not saying that I don't want other people to grieve. What I am saying is that if the way I grieve upsets someone, I can't help it, because I shouldn't have to alter what I am doing to heal for someone else, because this happned to a lot of people, but no one else is Kylie's mommy. No one else carried her for 7 months, and no one else loves her like I do. I cannot try to please everyone.

And this leads me to some rambling of the night... I hate it when people do stupid things.
Co-sleeping with your baby before 2 years old is extremely dangerous. So many babies have died due to SIDS from co-sleeping. I know that there are people I know who co-sleep regularly, and it upsets me so much, because they are just toying with fate. Why would you WANT to go through the pain of losing a child? I don't care if your baby sleeps better that way or not- if you can avoid the death of a child, then AVOID IT. I just want to hit something when I hear of this stuff. I didn't get a choice. People who co-sleep with their babies do get a choice. You can put your baby in the crib/bassinett/pack-n-play/etc. You do NOT have to sleep with your child. If you get a few sleepless nights, aren't they worth the alternative? I would give anything to have my baby with me and do things the right way, and you just test fate every time you sleep with your infant.

It also upsets me when people compare their losses to mine. As a mother who has suffered a loss, it is important to me that my baby was considered a viable preemie. There was nothing "miscarriage" about it- a miscarriage is the loss of a pregnancy (normally, there is not a baby to hold through that). This is no offense to anyone who has suffered a miscarriage or any other type of loss- because I'm sure you feel the same way. Kylie was alive for two weeks, and had things been different, she could still be here with us now and forever. She was born early, and would have had to do all of her growing outside the womb, but she had an 80% survival rate when born. Please don't tell me "I had a miscarriage, too, and it just broke my heart." I did NOT have a miscarriage. I had a child here, born alive, who lived for two weeks.

Also, I have a really hard time when you compare my child and yours, when it comes to "My baby was that size at 22 weeks," or "I bet my baby looks like she did at that time." Please understand I am not mad- it just breaks a piece of my heart whenever I hear things like that. I don't want to think of those things- because you have what I don't- your child.

Do pepole always say stupid things to the grieving? I hear a lot "well at least you know you can have kids!" or "you're young- you have plenty of time" or "it just wasn't mean to be." How can you say those things? I mean, come on! That's why I say "You can't fix stupid." I could never tell someone those things, especially now as I am walking down this path. None of those things will help. Also, things like "well I guess you would rather her have died then instead of living a long miserable life." I can say things like that, but you cant- because if you want to be honest, I would rather not be in this situation at all. I would have rather her been born close to her due date and living a healthy, happy life.

Love your children. Cherish the time you have with them. Don't jeopardize their lives or futures. Don't complain about parenting, because one day, you may wish you could complain. I know I will never take one of my children for granted.

Tuesday, July 13, 2010

A never ending pain

My pain is never-ending,
It will always be.
You may not always see it,
but it is now a part of me.
It lives deep within me,
and resides within my heart,
This deep, life-long grieving,
with which I'll never part.
This pain is hard to describe,
It changes every day,
But it affects who I am,
in every single way.
It makes me stay up at night
so I can cry myself to sleep;
It keeps me from having fun,
for it makes me constantly weep.
It often sits quietly
Hiding behind my eyes
So that others may not see it
when it takes me by surprise.
This pain it is all-consuming,
It never goes away.
It pulls and tugs at all my bones
and reminds me it's here to stay.
It often keeps me from smiling,
and it often keeps me sad.
It has made me a different person,
and it makes me feel so bad.
This pain is hard to describe
as it is now a part of me
It lives and breathes within my soul
even if no one else sees.
I know it's there each moment
of every single day
Because it tugs and pulls at my heart
and won't ever go away.
It makes me force a smile,
when my heart is breaking in two,
and it makes me push back a cry,
if it thinks the tears are too soon.
It follows me through my day,
it always hangs over my head;
It makes me a different person,
one I almost dread.
I wish it would go away,
and leave me alone for a while,
because for once, just once, I say,
I'd like to "mean" my smile.

Friday, July 9, 2010

This journey has too many forks...

Unfortunately, the journey of grief and parenting a child in Heaven has too many forks in the road. There are not enough straight-a-ways, not enough curves and turns... the path I think is okay turns into a fork, and sometimes I choose the harder path, or sometimes the harder path chooses me.. and it is a never-ending, relentless, difficult road. It is like I'll never find my way again.

I think I said it best last night at group when I said I feel like that puzzle that has that one darned missing piece... you know, the piece you search high and low for, that you check pockets for, and that you just can't find anywhere. I feel like I have permanently lost a bit of what makes me who I am. Let's face it- what do we do when a puzzle is missing a piece and it can't be found? We toss it out. We get rid of it. In my case, we save the pieces to give to daycare to be recycled into an art project. But basically, once that piece is missing, it is useless. Since Kylie died, I lost a piece of me that will never return. I know I'll be a functioning member of society, and I shouldn't be thrown in a trash can or anything, but I am different, altered, and incomplete. I will be that way until I join my daughter in Heaven and finally get to do the things with her that I so desperately want to do.

The past two months at group have been difficult for me.. I've been feeling and grieving and experiencing more of my pain and grief than I have in a while, and it is a bit overwhelming. Don't get me wrong- my projects help keep me focused and strong and give me a way to connect to Kylie, but so many emotions are brought out, and there is not a moment that goes by that I don't think of her still. I go over and over those two weeks I had with her, partially because I want to know every sound, every taste, every thing... I find myself using Avaguard like it's going out of style when I go to the hospital... and the first thing I do is put it in my hands and hold it up to my nose as I rub it in, and I close my eyes, and I am back in the NICU, rubbing it in as I walk to Kylie's bed, and my heart is racing because I'm so excited to see her little face... I can remember those steps, how anxious I was to get to her side, and how nervous I was to see what the monitors would say... but always with this huge smile on my face because I was a Mommy and my little girl was perfect in every single way- I had a daughter of my own and she was a miracle baby in every aspect of the word. See? In a split second, I can relive ALL of that and more... just from a tiny scent of a hand sanitizer.

So last night at group Ellen went over a list of words/phrases with us, and it was really good for us to hear them.. some of the words?
- poem in my heart
- black hole
- loss of control
- private hell

All of those I remember, probably because I relate closely to them. It is unfortunate, I guess, but the most relatable term is private hell. This is not a pain that other people will be able to understand or comprehend if they haven't been through it themselves. I may look okay and sound okay on the outside, but inside, my life is pure hell, pure torture. Not a moment goes by that I am not crying on the inside, that I am not angry, sad, depressed, upset... every emotion possible.

So I have a lot on my mind, and this journey just keeps having twists and turns, and I get frustrated with people when they don't understand... I just don't know how much more of this I can go through quietly.

Wednesday, July 7, 2010

Fear

I will be talking about something that is not directly related to my motherhood, but to the fears I have as a mother and other things... but it is kind of political, so this is your warning.

So I am scared. With all of this "Obamacare" crap, I am scared stiff, and the rest of you should be, too.

My grandparents are Medicare/Medicaid patients. They paid their part while working so they could receive benefits in their old age, and were also supposed to be given a reduction in their insurance pay after so many years of putting in work after age 65. Of course, that hasn't happened, but they are being shafted. Because of Obamacare, and the huge cuts and deficits in Medicare/Medicaid, my grandparents have received a letter in the mail.

Their doctor has decided that he cannot afford to take care of Medicare/Medicaid patients, along with all the other doctors in the practice, so they will put the first 350 Medicare/Medicaid patients to respond and pay under a private contract. They have to pay $600 up front, and then $100 per month as long as they are receiving care. To me, this is absolutely ABSURD. The people recieving Medicare/Medicaid are the ones who don't have that kind of money to fork out for health care, which is why they are using that particular insurance coverage. Luckily, my grandparents should be okay, because my Granny has a different doctor. However, the day after I discovered this, I learned something else...

The new man appointed to Medicare/Medicaid was appointed by President Obama in order to avoid difficult hearings and debates in Congress. Obama was concerned that Republicans would prevent his choice man from getting the job, and he has a right to be concerned. This man has made many comments about "rationing" health care. Just some information for you before I go on:

On a news show the other day, it was stated that at least one million cancer patients in England died because they were DENIED medical treatment for their cancer, and many of those patients could have been healed, cured, or had a much longer life, or had an extended quality of life. This is because of universal health care, and the fact that you have to be approved for care. Let me explain what it means to me: the sick, the weak, and the elderly are not worth taking care of, so let us focus on something else.

This is what our government is turning to, people! Why do you think there will be so much money for universal health care? Because instead of helping people, we are going to be watching them die, most often a slow and painful death, because they will not be allowed to get the health care that we get now. It's already changing the care our elderly get with their Medicare/Medicaid!!!! This new leader of that program specifically wants to RATION health care.. and to me, that means he (and Obama) have decided that it is time to play God and they get to decide who lives and who dies. Why do you think so many people come here to the US for cancer treatments? They don't have the option to live in their own countries, so they come here, where miracles are worked every day, and research has helped millions of people live.

Hell, if it weren't for medical research and the persistence of all doctors and developers, we could be wiped out from some pandemic plague, like those from long ago. Thank goodness for vaccines and other medical break throughs that will most likely prevent a huge pandemic... that is, until Obamacare takes full force.

This brings me to my motherly instincts, and the mothering feelings and ambitions I have.

There is no way anyone can tell me that premature babies won't be affected by universal health care. My Kylie would never have been given a chance to live if universal health care was in full effect. Want to know why? She would have been deemed too sick and too weak. She never would have had the option to have the surgery, and for all we know, they probably wouldn't have even put her on a ventilator to help her live. All of the work and research that has gone in to helping premature babies survive will be worthless, because this new health care system will deny coverage and care for those tiny little babies.

I am a woman who has PCOS and possibly needs fertility treatments to conceive. Before you know it, you won't be able to have fertility treatments without paying in full out of pocket. Before you know it, people will just go without having babies at all because they won't be able to afford paying out of pocket for their fertility.

Then there is the case of those people who spend their lives sick. My dad has diabetes, severe asthma, lots of allergies, and has lots of other things going on. There will be a day when they refuse him any more treatment because his care will be too costly. That is part of this. My grandparents will be affected...

How could those who voted Obama in to office not see all of this? He is a liar, and he said what he could to get in to office. What he is doing is no different than Hitler- let's make everyone feel good about me and what I'm doing, and then we'll start attacking what they cherish one step at a time. It's a sad state when your federal government is suing its own states, when you can't trust a single person in government, and when you have no faith in your leaders. It is also a sad state when you fear for what will happen next each day.

I am terrified of what our country is coming to. I have always had a deep sense of pride in my country and my freedoms- the ability to write in this blog what I want to write, the ability to work and stand up for myself and speak freely about whatever it is I want to discuss... the ability to make decisions about my health care, my doctors, and my outcomes.

As a person who has gone through a lot with doctors lately, I don't want some jackass in the federal government telling me who my doctor is and who I have to listen to, because I don't trust just anyone anymore.

Guys, this is a sad time in our country's timeline, and I'm scared that it is no where near being over... I just hope to God that I am able to successfully have my family completed with all the babies I'm going to have before this mess gets too big to handle.. and of course, I'm going to start my reserve fund to move out of country.

Monday, July 5, 2010

So a little blah...

So today is the final day of our weekend-long 4th of July celebrations. Today is our family cook out with my grandparents, aunt, uncles, etc. The morning has been pretty slow-go, but at least a lot of the cleaning was done before hand. The party on Saturday went off well, but it drained all of us, and we needed yesterday to recover.

For the remodel, mom and I got a new door knob for the pantry in the kitchen and a new faucet for the spare bathroom to match the new light fixture we just had put in a few months ago. Dad and Chris are at the house now getting some more measurements and such. I can't wait for things to start tomorrow so that I can be closer to getting back in my house.

Saturday was a hard day for me. Last year at the party, I was 4 months pregnant. This year, I am 9 months without my child. I was grumpy, upset, and hurt all day. It seemed like everyone had plans to go somewhere else or do something, and very few people wanted to be up front with me and tell me they weren't coming or whatever. My feelings were really hurt, because out of all days, I really needed people around me on that day, and so few people were there for me. I am thankful for Caitlin, because just knowing she was right there, and that she KNEW how much I was hurting, well, that meant a lot to me. I had a hard time watching everyone else with their children, knowing that I should have been the one tracking down my baby because everyone wanted to play "pass the baby" with her... knowing that won't ever happen with my Kylie just breaks my heart. Having those people around me who know me best and know how to make me laugh was so important to me, and I felt so abandoned, yet again. The worst part was that most people just didn't even tell me they weren't or were coming. They just ignored me. Am I that miserable to be around, that you don't want to even talk to me or be honest with me anymore?

So many people decided they wouldn't come because they didn't want their children exposed to alcohol. Oh my freaking goodness- it was quiet and tame, and you didn't see anyone drink! Some people didn't even have the nerve to tell me that that was the reason they didn't come. I had to figure it out, or someone else had to tell me for them. You know what? All of this is part of life. The more children are shielded from things instead of being TAUGHT about things, well, just wait til they get older. My parents never shielded us from people smoking or drinking- they informed us from day one that it is something that adults do and it is bad for children and can make you really sick, and that you have to be old enough to handle the responsibility of those things. By my dad and mom sharing that with me, and by them teaching me to respect those things, I did not go buck wild as a teenager, and I still, to this day, respect alcohol and such. I have been drunk very few times in my life, and I have never been a clubbing type person. It really offends me when people say they dont want to attend the party because of the drinking, because they make me feel ashamed of drinking anything at all, or that I am an alcoholic, or that my family is full of alcoholics because we like to enjoy a beverage every now and then. I think it's wrong to make someone feel that way. Just because you don't like to drink or don't want to doesn't mean you have to embarrass and talk down to someone who does.

So yes, I'm frustrated, because I am beginning to see more and more that those who I thought so much of don't think as much of me as I do them. If they did, they'd be honest with me and give me the benefit of the doubt, and I wouldn't have to keep begging for someone to talk to, someone to show me some care and concern, and I wouldn't have to feel embarrassed or ashamed.

Why me?

Thursday, July 1, 2010

Happy 9 month birthday, Kylie Brielle!

9 months ago right now, at this very moment, at 10:20 PM on October 1, 2009, I was in a hospital bed in the antepartum unit of Huntsville Hospital while my daughter approached her one-day mark in a Giraffe bed in the NICU, depending on ventilators, medication, and nurses for her survival.

9 months ago right now, I was a basket case of emotions; I was excited, because despite the situation, I was actually a mommy. A real mommy that gave birth and delivered a little girl that my husband and I created. I was scared because so much could go so wrong, and my little girl had a long, hard road ahead of her. I was exhausted because of the lack of sleep over the course of the past month while dealing with hospitals, doctors, and severe pain. I was hormonal, because I had just given birth and my body was going through all kinds of crazy stuff. I was happy because my dream of motherhood came true and because despite everything, Kylie had a good first day. I was on cloud nine because I got to touch my little girls hand, a hand that I never truly imagined I'd see, ever. I was so many things at this moment.

9 months ago right now, my world was so different. I was planning the future, looking ahead at the obstacles we would have to overcome, making plans for therapists, and preparing my friends and family for the long road we were embarking upon. I knew things wouldn't be easy, but I never imagined that my path would become what it has.

Fast forward to the present...

I am still a basket case with emotions. I am happy that my daughter is no longer suffering, that she has eternal peace and happiness. I am happy that I am a mom, in all aspects of the word, and that I have two weeks of beautiful memories with my daughter. I am thankful for the blessings she has shown me and for the blessing of her life. I am thankful for the impact she is having and will continue to have on others, this community, and the world. I am sad, so sad, that I have to mother her from earth while she resides in Heaven, and I am sad that I cannot watch her grow into the woman I always imagined her to be. I am grieving for the life that will never be, the boyfriends she'll never have, the opportunities that will never come, the wedding I'll never help plan... I am grieving for the life I had planned for my little family and the future that is forever altered. I am angry with God, with doctors, with nurses, for taking my daughter, or not doing what I thought they should do to help her, or not giving me options to protect her. I am angry that medical professionals did not take me seriously and did not listen to what was going on. I am angry that I have to continue my life without my child. I am hurt, deeply, by all that has happened and that will happen because of losing my daughter. I am hopeful, hopeful that Kylie's memory will help others have a chance at life, cope with losing their own children, and/or raise awareness to prematurity, NEC, and baby loss.

Right now, I miss my daughter more than I have missed anyone in my entire life. My heart aches, constantly, for her. I know I say it every day, and many times a day, but my life is empty and missing a piece without her. This pain is nothing I would wish on my worst enemy. I am constantly beating myself up with guilt, with pain, with anger, with hurt. I am constantly analyzing and asking the "what ifs..." I am lost without her. Sure I have projects and things to occupy my time, but it doesn't mean that I am okay deep down inside.

Days like today show up every month... her birthday and her angelversary. 2 days of a month that just tear me down and depress me more than I have been in a while. Just when I feel I am able to cope better, to handle it better, I fall to pieces, like today.

My dearest Kylie,

You are the light of my life, sweet angel. My world exists because of you. I always knew I would love my children, but until I actually had you, I had no clue of the power of a mother's love. It far surpasses any love that you can have for someone. Yes, my baby girl, I am so sad that you will never experience a love such as that. I know, despite how short your life was, that you would have been a beautiful, fantastic, loving mother. Your heart is so pure, and I know that your heart would have always been pure. The ability to love purely, deeply, and honestly would have made you an even better mother than me.

My love for you is so overwhelming at times, that I just cannot seem to put it into words. Of course I love your daddy, and I could not bear to be without him, but even my love for you is different from that. Your daddy and I both agreed that though we love one another, we love you MORE than we love each other. It doesn't make us love each other any less, but both of us would do absolutely anything and everything for you. Kylie, it is hard to explain in words... just trust me on this one. You are a creation that came out of love, mutal respect, honor, and trust. Your daddy and I wanted a child of our own more than anything, and we have always wanted to be parents. When we found out we were going to have you, nothing else mattered. YOU and your life were what mattered. It is our job to protect you, to love you, to teach you, to care for you, and to respect you. The fact that you are a combination of us, well, that makes you so special. Even more special than daddy and I are to each other.

I want you to know that very few children are wanted more than you were. Not that others were not wanted, but no one could love you and want you like me and your daddy. Today, I celebrate the life you were given, the life you gave to me, and the gift of you. It saddens me more than you could ever comprehend, to have to celebrate your life when you no longer have an earthly one, but I will always celebrate you. You, my daughter, are perfection. You are love. You are what life is all about.

Kylie Brielle, I hope today was a beautiful day in Heaven, and I hope the night stars shine brightly upon you, bathing you in light, warmth, and love. I hope that you had the most delicious chocolate cake, and I hope that you felt close to me and daddy today. I miss you dearly, and I love you with every fiber of my being. You, sweet baby girl, are my life, and I don't every want you to forget that. Happy 9 month birthday, angel. You are mommy's heart.

As always, be sweet.

Love forever and ever,

Mommy