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Our big girl!

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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Friday, April 30, 2010

March for Babies 2010

My dearest Kylie,

Today was the day, sweet girl. This morning, we walked in your memory. This morning, we walked for all babies, angels and alive, and those not even born yet. This morning was for you, in my mind.

Kylie, it was the most perfect morning we could ever have hoped for. It started off crisp and cool, but it turned out to be sunny and gorgeous. There were around 1,000 walkers, we believe. I helped with the registration table this morning, and so many people came. It was amazing to see the team shirts, and then to see those who just saw the advertisement and decided to come show support. I could not believe how many people wanted to help out our tiniest babies.

During opening ceremonies, Benita came and found me and your daddy. As the ambassador mom was speaking, she then acknowledged us and asked us to come on stage in front of all the participants. She told how we had suffered a loss and turned it into a positive, by starting a team and becoming... yes, my dear, THE TOP FAMILY FUNDRAISING TEAM IN THE STATE! Oh, my little angel, right there on that stage in front of all those people, I felt you near me, whispering through my hair in the breeze, and they offered us a balloon to release just for you...... Sweet little girl, I could not have felt more close to you than I did in that moment. I felt you all around me, as if you were holding me up, as if you were wrapping your tiny little arms around my neck and hugging me close. Everything I worked so hard for unfolded right there in front of me, and had it not been for you holding me up, I probably would have lost it right then.

Today as I walked, I thought of you the entire time, and I was happy. I was happy because you were with me. You walked beside me the entire time, and you did so well. You walked with Gramps, and you walked with Auntie Ashley and Uncle Jon, and your big tister. You walked with us, pushing us on, knowing how important this was. Today, for the March for Babies, you were the star. You were the hero. I am so proud of you. Standing on that stage, I smiled because I was thinking of what a proud moment it was for me as a mommy, to be standing there being acknowledged because of YOU.

When I finished walking, I just sat and felt at peace. I was at peace because of you, and because what I just did was all driven by a mother's love. I love you so much, and I miss you terribly, but I am so proud of you and what your tiny life has done for others. You are amazing, Kylie Brielle Keith. Just absolutely amazing.

Thank you, as always, for blessing me with your life. I am the most proud mommy in the world right now. I love you deeply. As always, be sweet. (Like there is ever any question)

With forever love,



Preparing for the MOD, and all for Kylie

The post below is from four days before our area's March for Babies to benefit the March of Dimes. On February 1, I created our family team, and we ended up with over 68 walkers, and over $8,000 total! It was an amazing feat... and this letter talks to Kylie about those things...

My dearest Kylie Brielle,

You never cease to amaze me, little angel. Never, ever. The power of your two-week life is overwhelming-the amount of people you have touched, the love and joy of life you have taught those who both knew you and never met you... today, at this very moment, I could never be more proud of you than I am at this very moment. Because of you, my daughter, YOU, we have over $7,500, which is $7,000 more than my original goal. All of this is because so many people were touched by your story, the story of your life and your death, the story of your struggle, the miracle of your life, and the story of the joy you have brought to my world.

When we as parents make plans for our children, we all know from the beginning that we want our children to be succesful in whatever it is they do. We want them to be healthy, happy, and successful. My hopes and dreams for you were no different, but I had so many more. But, you are now eternally healthy and happy in the arms of Jesus, and oh, tiny little miracle child, you are more succesful than I could ever imagine being in my lifetime. You are my inspiration, my hero. You are everything i want to be and more- no one can ever take away from you your innocence, your beauty, your strength. If you only knew how much I admire you... words cannot express how much I admire all of you and your beautiful qualities. I could not have asked to be blessed with a more perfect child.

As I write this to you, the tears have found me once again. Here lately, I felt they had left me, but now, in the success of our fundraising efforts, and thinking of why we are doing this, I feel again... I feel that desperate yearning for you to be here with me, I feel that aching heaviness in my arms, wishing for a baby to hold. I feel that rip in my heart, where it tore permanently when you left me. I think of you and how it isn't fair that this gift to the March of Dimes in your name, honor, and memory, is the only gift I can give you. I can't wrap your birthday presents for you to unwrap, and I cannot bake you a cake to eat... I can't do the things other mommies get to do with their children. I know I cannot change what has happened, but I'm sure you already know that I would if I could. However, my pain, my agony, my heartbreak... none of it compares to how proud I am that I can call you mine. I am eternally blessed with the joy of being your mother. I asked God so often, and still do, how I got so lucky to be your mommy, how I did so many things right to deserve you. Oh, baby girl, I love you more than anything, and I always will. Right now, I cannot tell you enough how much I love you, and equally, how much I miss you.

You are such a fighter, Kylie. I watched you fight the toughest battle i could ever imagine... a battle no mother wants to watch their child fight, yet you kept defying odds. I assure you, I begged God to take me instead of you, to give you a chance at a life, because you just began. I tried everything to keep you here... but I also knew when enough was enough-- you suffered and fought long enough, and the peaceful expression on your face as you were placed in my arms helped me to realize that it was okay for you to stop fighting, as painful as it was for me. I want you to know that I am SO proud of you, and I am so proud that you were so strong. I never ever fault you for anything- you are perfect.

So my sweet baby, when we walk on Saturday, we are walking for you and your strength. And when I feel like I can't go any further, I will think of you, and I will fight the urge, just like you fought for your life. When we feel weak and tired and just plain worn out, your memory will keep us going. When I want to give up, when i want to stop because it's too much, I won't, because it would be dishonoring you and your life. I am going to be strong for you, little girl. I can't promise I won't cry, as I have been most of tonight, but I can promise I will finish for YOU. I love you so, so, much, and this is all because I love you.

I think it is appropriate to share words to Jo Dee Messina's "Heaven Was Needing a Hero:"
"I came by today to see you, though I had to let you know, if I knew the last time that I held you was the last time I'd of held you, and never let go... though it's kept me awake nights wondering, i lie in the dark jsut asking why... i've always been told, you won't be called home until it's your time... i guess Heaven was needing a hero, somebody just like you... brave enough to stand up for what you believe and follow it through... when i try to make it make sense in my mind, the only conclusion I come to... is Heaven was needing a hero, like you..."

"'re such a part of who I am, now that part will just be void, no matter how much I need you now, Heaven needed you more.... cuz Heaven was needing a hero, somebody just like you... brave enough to stand up for what you believe and follow it through... when i try to make it make sense in my mind, the only conclusion I come to... is Heaven was needing a hero, like you..."

Kylie you are a hero to so many people. You are my hero, for sure, but you are a hero for all the babies who will benefit from knowing your story, all the researchers who will use the money we donated to find cures for NEC and other deadly diseases.... you are a true hero, Kylie Brielle. A true hero.

God, thank you for blessing me with such an amazing child. Thank you for allowing her to touch the hearts and lives of so many people, and thank you for giving me the chance to love as a mother does. Thank you for Kylie, though her life was so, so short. Thank you for my daughter.

I love you and miss you so much... and as always my sweet miracle child, be sweet, and good night.

With forever love,


Note for Kylie from Saturday, April 10

My dearest Kylie Brielle,

These days are still hard without you, and there is not a moment that goes by that I do not think of you, little angel. There are so many things I wish to share with you, and then i realize that I can't... not the way I want to, anyway...

1. I wanted to watch you learn to follow items with your eyes as I moved it in front of you.
2. I wanted to support your little arms as you stood for the first time.
3. I wanted to watch with delight as you spit your first bite of food out.
4. I wanted to video every second of your sweet little face, asleep and awake-- every second wouldn't even be enough to appease me.
5. I wanted to cradle you close to me and watch you sleep every day, watching you breathe softly and peacefully.
6. i wanted to rock you in your nursery, singing to you, reading to you, and talking to you.
7. I wanted to kiss your little button nose every single day for the rest of my life.
8. I wanted to watch you learn to roll over.
9. i wanted to watch you scoot and crawl, and eventually walk.
10. i wanted to hear your giggle, your coos, and your gurgles.
11. I wanted to nurse you, to bond with you.
12. I wanted to watch you grow into a tiny toddler.
13. I wanted to watch you blow out your first birthday candles, and I wanted to watch you dig in to your first birthday cake.

If I kept going with the list, we'd be here for the rest of my life... your future that I planned no longer exists, and it seems so cruel, so unfair, so miserable. How could someone rob you of your future? How could someone rob ME of my future with you? It is like the sermon by Jonathon Edwards, "Sinners in the Hands of an Angry God." I feel like God is dangling me over the pit of hell, and I have no control over anything anymore... that he is punishing me for something... and if I'm being punished at all, i think the punishment is more than anyone deserves, because it sucks to feel this way.

See? You don't even know what I'm talking about--I never had the chance to read to you the best literature of the time. i never even got to read a book to you at all while you were with us. there are so many things I would do differently if I knew what would happen and I could go back...

Kylie, I want you to know how hard I tried to protect you, how hard I fought for you to have your full 9 months. I was desperate to keep you safe and sound, and I was in such misery and pain that I didn't know what else to do. i did all I could, but it doesn't stop me from feeling guilty, like I could have done more... I am so, so sorry that it wasn't enough... if I had only known then what I know now... things might be different. I just don't know how I can continue going in this pain, sweet girl. Things are so different now... I look at things differently, hear them differently, treat them differently..

My life without you seems less important, less "worth" it... now don't take that the wrong way... it just seems less interesting, exciting, less happy of course...

I just miss you.

So, so much.

I love you, my tiny little miracle baby.

<3 always,

Your Mommy forever

Losing you

(Original post on facebook)

Walking around the corner, still rubbing the cold Avagaurd into my hands, my heart nearly stops. I'm nowhere near your bed, but something is not right... the moment sticks in my throat, difficult to comprehend, yet knowing all the same. Words flash through my mind, memories play in fast forward, and hopes, those hopes precariously stacked in my mind for you and your future, teeter and crumble. I knew, though I didn't want to know. I felt, though I didn't want to feel. And yet, I was stronger than I anticipated. The words came, though I had no clue what to say. I instructed, and people listened. I asked, and I was answered. Even now, I can see the monitors, I can see you, I can hear the noises of the NICU, much louder than any moment prior... and yet, I felt like I was in a bubble, and a surreal moment was happening with me watching myself... yes, quite like an out of body experience. And your Daddy came, and I told him over and over... it is time, we have to let you go... and I am shocked that I can say that so plainly, yet my mind is screaming- not now... no not my daughter... no not ever. Those screams, the agony... it is all there, but the dam refuses to burst. I feel like I will drown in my own pain before it can surface, and then I realize that I must hold you. I must let you feel me before your heart stops. I must know that, even if it was brief, you felt my arms around you and I bonded with you like a mother should.

And then, I failed. I failed to be what I thought I would. I thought I would scream at the doctors and nurses, at their inability to save you, at MY inability to save you. I thought I would be so loud, they would ask me to leave... but the sobs came quietly but fervently. Your tiny little life left us moments after you were put in our arms, I know, but I couldn't say anything about that. I apologized to you, because a huge part of me felt it was my fault, that I should have done more.. I apologized for making you suffer, for making you when I couldn't save you. That's what moms are supposed to do. Those moments still seem so fresh, so raw, so real.. Your little body was, though swollen, so tiny in my arms, yet you fit perfectly, just like I always thought you would. For a moment, I regained hope, that maybe my arms would bring you back. That I would hold you like that every day, and you would be okay, that the power of my overwhelming love for you would save us both. And then I gave you to your daddy, and I realized that even my intense passion for your little life would never be enough to get you back... and I became numb. Numb, watching your daddy hold you in his big arms, because I always thought that he would look exactly that way holding you... you would be swallowed in his arms, but that was what was supposed to happen. You were supposed to be tiny, but enveloped with daddy's arms and love. I never could look at his face, because the pain was in his every breath. The pain was so evident... the ache that choked us both, the love for you that kept us both from screaming out, yet the pain in losing you that kept us from talking. And then you were back in my arms... and I rocked you... and it surprised me that rocking you felt so natural, even though you had already gone. It must be a motherly instinct--that urge to rock and soothe... and just like I'd done it all my life, I began wiping the dry skin from your face, looking for lint in your hair, and rubbing your nose that is the mirror of my own. I look at those wrinkled creases in your forehead and see your daddy there in that feature, and desperately, I try to fix your ear that has been folded against your head. It is strange how motherly I became, though I had not held you before this moment. The NICU stopped existing, and even your daddy, your Grammy, and your Grandma disappeared in my mind. It was just me and you... and it was beautiful, though so desperately sad. It was a beautiful moment because for that short time, I was your mommy, and you were my daughter, and I could do those things I had been so anxious to do since you were conceived. Strangely, I thought of your daddy not getting to give you a bath, thought of me never clipping your finger nails. I thought of me never getting to dress you, and never putting a bow in your hair. And yet, we rocked, you and I. We rocked, and we rocked... and my eyes never left your face... and I kissed your nose, and it was the most beautiful, heart-wrenching moment of my life. A brief moment before you were put in my arms, a fear rose in me: what would it be like to kiss and hold my baby who has died? and then the fear was gone the minute you fit in the crook of my arm. It would never be weird, or odd, or strange. Alive or not, you were my daughter, and nothing about holding you or kissing you or talking to you was strange... and so, I talked to you like you were with me. I introduced you to your Grammy and your Gramps. I told you how beautiful you were, and how much I loved you. When you were in my arms, nothing else existed but you.

I knew I had to give you back, so your family could meet you, and yet, it was still so unreal... i was walking in a fog... and yet I still hoped... we could change the odds, right? We coudl bring you back... but my heart was so heavy already, and my eyes were so red from my tears that I had no clue I was crying. My arms, already heavy... they knew. My whole body had known for a few days when my milk started running low, when my dreams were consummed with tears and heart-break... when my heart was in my throat the entire time I was with you. It is strange how the connection exists between mother and child, because I "knew" before I knew that you would be leaving me. I wouldn't have admitted it then, but I know now. My number one sign, that choked me up to ask the lactation consultant was why my milk was so little at a time... i was doing everything right. It was just preparing me for not having to pump anymore, I know. I know that now. I knew it then, but to speak it would be to admit the unthinkable.

When Miss Carolyn brought you to us, I looked around at all of the faces in the room briefly. I was aware more of my own family and friends... but most aware of my mom. Angel, your Grammy fought harder for you than anyone could have imagined. She fought, and she fought, and she fought to save you, to protect you, to save me and protect me. She asked questions, she begged for help, she did everything she could think of. The moment I saw you in her arms, I felt I would do anything to take that pain away from her, though I couldn't even take it away from myself. If you only knew how much she loved you, and still does... you are the luckiest girl in the world to have such a wonderful grandmother. I could not begin to tell you how spoiled you would be. And then... oh, sweet baby, you were in your Grampy's arms. I have very rarely seen my daddy cry, but in that moment, I couldn't bear to look in his eyes. I finally realized that day something about parenting: as a parent, you want to fix your child(ren)'s problems, but there are some problems that cannot be fixed. The pain in mom and dad's faces told me that story- they were in agony, not just because they lost their first granddaughter, but because they could not fix the pain I was in or would continue to have. And then, Kylie, you met your Aunt Ashley, who prayed as much for me to conceive you as I did. We had big plans, she and I, that you and Nick would be so close as cousins, and you would do everything together. Her pain, much like my parents, had two parts to it, and as she held you, I could see that she loved you more than any aunt has ever loved their niece before. Uncle Jon was able to hold you next, and though he spent so little time with you, he loved you dearly. He hurt for you, and he wanted to fix it as much as everyone else. And then, you meet your Aunt Jessica... her hurt was for you and for me, and she had so many plans for you as well. You would have been our shadow, our shopping buddy, our little princess. And Uncle Chris saw in you such beauty, and he smiled as he looked in your tiny face--because he knew that your soul was already in such peace in the arms of Jesus.

And all this time, I thought of your sister, the sister who, though not blood related, loved you before you were born. The sister who anticipated meeting you just like everyone else. The sister who kissed my belly and talked to you on Saturday mornings as we cuddled in bed. The sister who even now talks to your pictures, kisses them. I thought so desperately that i wanted her to meet you, and even now, I regret that she didn't. I have no pictures of you two together, nothing to show her when she gets older of her being a good big sister. I have nothing to add to my memories, and that saddens me that I don't have you and her together.

I also remember my anxiety as you were passed around the room, I wanted to follow you, to keep my hands under you, because i was terrified you would be dropped...

And my little miracle baby, when you were back in my arms, you were still perfect. I didn't see the curl in your lip from the tight vent tube. I didn't see the flattened ear, the gauze covering where your IV was... I saw your daddy and me intertwined into the perfect mixture that was you, Kylie Brielle Keith, the most perfect little package I have ever had the joy of being given. I know you may tire of hearing this, but I will always believe it and say it. I ran my fingers over yours, your tiny little fingers, all ten of them... and imagined painting them. I slid mine over your tiny little toes, and imagined playing "this little piggy" with you. I imagined holding a bottle to your mouth, imagined your fine, wavy hair as you were a toddler, turned into long blonde hair that hung in ringlets. I imagined those blue eyes sparkling with wonderment as you took your first steps. And then I remembered those were things that wouldn't happen. My heart seemed to break every moment thinking of the new thing I would never do with you, or watch you do yourself.

The day I lost you, I lost everything. I lost the future I had envisioned. I lost the purposes for my life, the reasons I had for living. I have become an altered version of myself, but things will never be the same. I cannot go back to that person who was Kylie's Mommy on earth--I am now Kylie's Mommy from earth.

I don't want you think I am complaining that I went through it with you. I am complaining that YOU had to go through it at all. These past few days, those last hours with you have replayed and replayed in my mind, and it is important that I remember them this way... though I wish desperately we never had to go through them at all. Your 6 month birthday would be in a few days... and it is so hard for me. That is half a year since you changed my life with your birth.

God, I wish things were different.