On Your Second Birthday in Heaven

Happy 2nd Birthday!
 
My sweet baby girl, 

       I can not believe it has been two years now since I first held you in my arms. A mixture of joy, and love, and fear rushing through me. Your Daddy looking at you so proudly, you were just perfect. Oh, that day is forever etched into my mind. From the moment we first met you, we were forever changed. We have never loved anyone quite the way we love you.
    
          This year has been a rough road on the journey of missing you. Just when I thought I was getting to a point where I could handle my grief, the floor fell out and I hit a new bottom I didn't know existed. There are just some things that shouldn't happen in life. Losing a child has got to be at the top of that list. It's not the natural order of things, you should be here.
    
         The thing no one tells you about losing your child, is that you begin to question everything. Your faith, your purpose, your very existence. If my job in this life is to be a mother, then why couldn't I protect my child from this fate? I hope you forgive me sweet girl, if there had been any way for me to save you, no cost would have been to high. I did everything I could when I was pregnant. I took my vitamins, I exercised, I ate healthy, I didn't drink or smoke, I wanted to give you the very best chance at life. I know it isn't my fault, but I still feel like I failed you somehow.
    
       I think about what you'd look like now, your dark eyes, your Daddy's full lips, how would you have changed? What color would your hair be? Brown like Lincoln, or a shade of auburn'; like Sophia and Declan, or maybe a color all your own. Would you be tall? Quiet and curious or loud and lively?
    
       I wonder what your little voice would be like, what your favorite food would be. Which shows would be your favorite? Would you sing and dance to the theme songs? Would you like dresses and princesses? Or boots and mud? Would you let me snuggle you and play with your hair? All I ever hoped for was to lie down next to you and truly hold you in my arms.
   
      I'll never know these little things, these wonderful things, and that weighs on me so heavily.
       
        You deserved to grow up, to live, and love, and learn. I'm sorry my sweet girl, that your time was cut so unbelievably short. That your little life was filled with so much pain and struggle. I hope you felt our love. I hope knowing Mommy and Daddy were by your side every moment eased your suffering. The thought of you in pain keeps me up at night.
    
          If I close my eyes right now, I'm right back at the NICU in Syracuse. You're curled up on your tummy, knees tucked up under  you, feet held in your Daddy's palm. I can hear the ice rattling in my starbucks tumbler, as my breast pump bag taps against me with each movement. See your sweet little smile, your eyes closed against the bright lights. I can hear the nurses rushing around, tending to all the impossibly tiny babies. You looked so big, and so healthy compared to them. Yet, your fight was not easier. I longed to just hold you in my arms for hours, but those tubes in your belly button, giving your heart the medicine it needed to keep you alive, they meant I had to be content half cradling you with my arm.
  
          Your temperature was elevated from the medication as well, so you couldn't wear any of the cute hats or clothes I had for you. There just weren't many things you got to experience that we had dreamed for you.
    
          Everyone told me to pray. To have faith that God would heal you. I watched you fight for your life, your tiny body pushed to its limits. I wondered how an all powerful God could watch you suffer and not heal your little heart. I excused myself every two hours to pump milk for you, I'd go into the nursing room and sit in silence. The tears came so easily, the heartache and fear I felt for you couldn't be held back in those quiet moments. My only hope was that the milk I made for you would keep you strong and help you fight.
    
        I did pray. I begged. I pleaded. I hoped. I wished. I poured out my soul. None of that was enough to save you though. You fought so hard, and you were amazing. So beautiful and strong. I am so proud to be your Mama. My faith may be irreparably shattered, but you gave me a gift in all of this. The moment you left this world, I knew. I looked at you and I knew you were gone. I now believe in a soul, or spirit, or life-force, that can not be explained in words. You may not be in your body anymore, but I know somewhere, somehow, a form of you exists, and I will hold onto that.
   
        This journey is lonely, and there is not a foreseeable end to the pain and sadness, but one thing never changes, you were worth every second. I am lucky to have known you, I am blessed to have loved you. You will always be my girl.

Every Day is a Grief Day

Every. Single. Day.

Every day is a grief day.

Sometimes you're in the middle of something important and a tiny voice in the back of your head tells you that you need to pee. You're busy though, maybe you're even in the middle of an important conversation and it would be inappropriate to just excuse yourself mid sentence. So, you tell the little voice, "I hear you, but you have to wait." And you hold it.

But you can't hold it forever. Eventually you have to go relieve yourself.

Grief is like this for me. There's a constant voice in my heart, "She should be here." And I tell myself, hold it in, don't cry here. You're grocery shopping, what will people think? If someone asks you if you're okay, it'll make everything worse. You're not okay, you'll never be okay, there is no "okay" when you lose a child.

Push it down. Push it down.

Not here! Not now! I'm playing with my other babies, and they won't understand. It'll make them sad too if they know I'm crying about their baby sister.

Push it down. Push it down.

Stop it! Hold it together! It's just a commercial for diapers! You have to find a way to get through!!

Push it down....

And then it happens. You put if off for so long, and now you can't hold it anymore. Only, instead of just a few tears sliding silently down your cheek, an entire ocean tries to escape from your eyes. Instead of your legs feeling a little unsteady, you fall to your knees under the crushing weight. Instead of one small memory in your mind, every memory, the painful and the wonderful ones collide in front of you. And you're helpless. You're drowning. You have to let it finish.

The thing is, even after you have this massive break down, and you will need a day or two to recover from it, it's never over. It just restarts. "Not right now..."

There's no end to grief. Some moments are gentle, and some rage.

As time passes, you learn to sense the breakdown is near, but even 17 months later, I can be caught by surprise.

I try to remind myself that it's okay. That if I lose it for a moment, it doesn't mean I'm failing at something, or that I'm not strong. I try to remind myself that it's okay if I'm not strong.

Everything I thought I knew has changed. Everything that used to have a clear meaning, now seems forever altered.

You use facts to ground yourself. The sun rises. The grass is green. Some of those still ring true. So many things seem different now though.

"How many children do you have?" Is a loaded question.

"You're doing so well, you're so strong..." Sound false in your ears. You're drowning, but you thank them, because you know they're doing the best they can to console you. They can't know, and you don't want anyone to ever know this pain.

"I don't know how you do it." Neither do I. I wake up, I'm alive and she's not, I breathe, my heart continues to beat.

I miss her. With every iota of my being... I miss her. I don't feel whole.

These are the things I know for certain.

Every day is a grief day.

Every. Single. Day.

First Birthday

To my daughter on her first birthday.

My dear sweet Kinley,

There should be so much laughter in our home today. So much wonder and joy in your eyes. I imagine us singing you happy birthday and watching you blow out your candles. I imagine you opening presents and sticking bows on your perfect little head. I imagine your sister and your brothers watching you with laughter.

I wonder if you'd have curls like your brother, or very little hair like your sister. I wonder what your laugh would sound like. I long to hear your little voice calling, "Mama. Daddy."

So many dreams we had for you sweet girl. So much life we wanted to share with you. I'm so sorry that you're not here to enjoy your birthday with us. I'm so sorry that we couldn't save you.

I'm making you a cake anyway. We are blowing up balloons and sending them up into the sky for you. We are honoring your memory with gifts and donations in your name, but it doesn't feel like enough. It doesn't help the hurt. It doesn't stop the tears from flowing and the ache in my heart that is a Kinley shaped hole. A hole that can never be filled.

I've been looking at your pictures, but I don't need them to see your face. All I have to do is close my eyes and you are there. You're always with me, every moment of every day. Your new baby brother looks so much like you, all your siblings look like you.

My arms still ache for you sweet girl. I hope you know I'd give anything to have you here
with us.

I hope that somehow you will be with us today. Seeing your cake and your gifts, feeling the love from your family. You are so loved my sweet baby, so very loved.

Even though you're gone, you've given us so much. You lived such a short time, and yet you've impacted so many lives, and every aspect of mine.

I have you to thank for so many things...

You've brought Daddy and I closer to each other than we ever imagined. No one can understand what we feel more than each other and every day we try to honor your memory. We will never stop remembering you.

Each moment has so much more meaning since you came into our lives. It's so much easier to let the silly things go and focus on the important things. Time can be so fleeting, we have to make each second count.

Your baby brother is such a light for us, as I do the things with him that I dreamed of doing with you, I like to think you're here with us, right beside him.

From the second they placed you in my arms, I knew there was something different about you. I don't know how to describe it adequately, but meeting you made me believe in souls like never before. It was as if I could see your soul on the outside. This glow, this tangible thing, and it was glorious, undeniably beautiful. Perhaps that's why, when I look up at the stars, I search for the brightest one and I feel you there.

Daddy and I will always look for you in the stars. In the butterflies. In the moments of love and hope. Though we miss you and long for you, though our hearts are forever changed and broken, we see you, we feel you. You are forever with us.

So on this special day, your first birthday, though I will cry and mourn and miss you so, I know in some way you are here with us.

I love you, Kinley Eleanor.
Always.

Your Mama

The Beginning

        Josh hadn't been home from his second Deployment very long when we found out we were expecting a baby. It was fourth of July weekend when I just had a feeling and took a pregnancy test. I remember wanting to do or say something cute to tell him, but I was too excited to wait. I popped my head out of the bathroom door and grinning from ear to ear told him the news. We were so excited, it was such a happy time for our little family.
        We waited until our first ultrasound to tell the kids, we wanted to be sure everything was going well with the pregnancy and see the baby on the screen before we let them in on our news. We'd already announced it to our friends and family. Seeing the tiny bean of a baby on the screen and hearing the heartbeat was so exciting. We'd never had a first trimester ultrasound before. The doctor told us our dates looked perfect and that the baby looked healthy and growing great. Our due date was March 16th, 2015.
           I wanted the kids to be there with us when we found out girl or boy, so we went to Round Rock and had a special ultrasound done at 15 weeks. It was that day that we found out we would be having another sweet girl. Sophia was beaming with happiness at the news. I had been so sure that it was a little boy, but I was excited at the idea of another sweet girl to dress up and love on. Josh and I played around with name ideas on the hour plus drive home and quickly came to the conclusion that her name would be Kinley.
          Everything seemed so wonderfully perfect. We had so many plans for our newest addition already, so much love for this sweet baby we'd be meeting one day soon.
       
           At 20 weeks we went in for our Anatomy scan. We already knew it was a girl, so we were just expecting to see her sweet little self on the ultrasound screen and then be on our way, just like we'd done with Lincoln and Sophia at the same gestation. This time it didn't end in smiles and laughs though.
          The tech measured our baby, she told us it was indeed a sweet girl, and then she went about doing her measurements and checks. Her face got very serious as she took pictures of Kinley's heart. She had me turn on my side, then on my other side, she had me move all sorts of ways trying to get all the pictures she needed. I felt a little nervous at this point, but babies can be stubborn and not be in the right position, so I tried not to worry.
            The tech smiled at us and said she'd just go get the doctor, that she had a lot better luck getting the pictures of babies that were in harder positions.
            The female doctor came in, I still can't remember her name, I just remember she had very bad bedside manor. She looked and looked, she had me move all sorts of ways as well, and then she started talking...
           "Have you heard of the snowboarder named Shaun White?" She asked. I shook my head no, and she continued, "Your baby looks like she may have a heart defect called Tetralogy of Fallot, Shaun White also had that as a child, and it was corrected with surgery, and he's gone on to do everything you and I could do. Your baby will need open heart surgery very quickly after birth."
          I was already crying. How could this be? How had we not seen anything wrong before? Did I do something to cause this? Will my baby be in a lot of pain? Open heart surgery sounds terrifying!
          "I can't seem to get all the angles of the heart that I'd like, so it's possible her heart could be okay and I'm just not seeing it right, but I don't think that's the case. I'll have you come back in 2 more weeks and we will look again."

         We left shocked and scared. We waited the two longest weeks ever. I googled Shaun White and Congenital Heart Defects and my dread grew. Everyone told me not to worry, that it was probably a mistake, that everything would be okay... but I felt this immense dread building inside, it was as if I knew in my heart and soul that things were not right and my baby would need me to prepare for any outcome.

         Two weeks later, after a tearful ultrasound, we got the news. Kinley did indeed have something wrong with her heart. It most likely wasn't the TOF they had originally thought, but instead Transposition of the Great Arteries, and Coarctation of the Aorta, and a Ventricular Septal Defect. This sweet girl, our tiny baby, had a heart that just didn't form the way that it should have. It could happen to anyone the told me, it's like being struck by lightening they said, it happens to 1 in 100 babies....but it wasn't just happening to anyone, it had happened to us.
      
         I cried, the fear engulfed me. I'd had two healthy babies before, what did I know about having a baby that would need heart surgery at birth and need care for her heart her entire life? What had I done to cause this? How would I tell my sweet baby that her heart was broken?
       We were referred to a heart specialist and sent on our way.

         Over the next few months we saw the specialist in Texas, he told us that the first Doctors had been wrong and that our baby would not need surgery. That she only had a small hole in her heart and that it would likely close on it's own in the first few weeks of her life. We were thrilled and so very relieved. But deep down I still had this nagging feeling that something was wrong.

       We were moving to New York, and our Texas doctor strongly still believed that Kinley had TGA. He advised me to get a second opinion as soon as we got to New York. I agreed with him, and he put in the orders for us.

       I will be forever thankful to that doctor. The heart doctor in New York, Dr. Smith, immediately recognized the TGA and other heart defects the first doctors had seen. He told me Kinley would need the surgery within the first days of her birth, and that he had high hopes for her. He was confident that they would be able to correct the problems and that she would be okay.

         Obviously that's not how things worked out for us, but I am grateful for the hope he allowed me to begin feeling, it gave me the strength to bond even more tightly with my girl in those last few months of pregnancy.

         It was the news I needed to begin a plan for Kinley and our fight for her to live,

This was only the beginning of our story.

Nightmare

It happens almost every night now, and it has been this way for the last 11 months.

I don't even have to close my eyes anymore before it starts playing in my head.

It's almost like a movie, only I can smell the room, taste my own fear, and I know it's not just a dream.

One moment I'm laughing with the nurse, she's smiling at me and nodding her head. We're laughing about the monitor that goes on Kinley's foot, and how it's constantly moving and making the machine beep. It's been a false alarm so many times that I've almost become numb to the sound. I know that someone will come adjust it shortly and reset the machine and all will be fine.

Only this time the machine keeps beeping.

This time I watch the nurse eye the numbers on each screen and get quiet. I see her reach for medication and quietly ask a doctor to come take a look.

I watch the room slowly fill with doctors and nurses. In the 12 days of her life the only time there's been this many people in the room was on surgery day. Something isn't right and I'm on full alert.

Josh and I look at each other with fear and anxiety. Yesterday Kinley had one of her best days so far. They moved her to this private room and finally got the dreaded ECMO machine out of here. They don't anticipate her needing to go back on that machine again. Things are looking up, aren't they? We hold hands, as if that connection can give us the strength to keep fighting, to keep being strong for our girl.

One of the female doctors comes to talk to us, I can tell from the look on her face the news isn't good. She explains that Kinley isn't responding to the medicines like she has been, that they are trying to get her heart rate up, but that she's not liking what she's seeing.

The male doctor that I've been calling Sheldon (because I can't remember all their names, and he looks like the guy from Big Bang Theory) is trying to get her pacemaker to register, but no matter what he does it won't pick up.

Someone is on the phone with the surgeon, he's in the parking garage and he's trying his best to get up there in time...

Time is relative. I don't know how much time passed, I just know that it was like watching the room from outside my body. They pumped meds into my tiny baby, they scrambled around doing everything that they could think of.

Then the female doctor was back in front of us again, she was telling us that we may be asked to make a hard decision soon. She needed to know if we wanted them to try and get Kinley back on the life support machine (ECMO), but that we needed to know that it might not work this time. Her tiny heart just wasn't beating on it's own now, and they were manually giving her oxygen at this point.

At first we told her absolutely, do whatever it takes! Hurry! Save our baby! Everything seemed to kick into high gear then, everyone was moving things around the room, nurses were on phones calling for blood bags and equipment, the surgeon finally rushed into the room and began pumping Kinley's tiny heart manually, holding it in his fingers outside of her open chest.

I could hear myself screaming, "Oh God, Oh God. Is this it? Oh God." I leaned on Josh because I didn't know how much longer I could hold myself up. Someone asked me if I wanted to wait outside, but I declined. I needed to be with my baby.

I watched her face. Her tiny little face. I watched her change color and at some point I knew. I looked at her and I knew she was gone. Her little soul had left her body and I could feel it in every cell of my body.

I sobbed so hard. I couldn't watch them do anything else to her tiny body. I knew she was gone and I wanted her to have some peace. I wanted her body to have a rest. My voice was too small, I turned to Josh and I said, "She's gone. Oh God, She's gone. Make them stop. We need to make them stop."

His voice was so tormented and broken, but he managed what I couldn't and he told them to stop.

They all looked broken, but relieved. They knew what we knew, she was gone and nothing could save her. Her body had gone too long without a heart beat, no oxygen had been going to her body or her brain. Even if they'd been able to get the ECMO machine together, it was too late. Our sweet girl had fought so hard, but it wasn't enough. Her tiny body just couldn't fight anymore.

It's a little blurry at this point, I think I may have left my own body for a moment, I remember feeling my legs start to give. Josh and another person, (maybe the female doctor?) held me up on either side and someone brought a chair in behind me. I just cried. I cried like I'd never cried before.

They asked me if I wanted to hold her. I did.
They asked me if I wanted them to take all the wires and tubes away first. I did.


They cleared the room except for two nurses and they wrapped her up in a blanket and handed my baby to me. For only the second time ever, I held her without wires or tubes. She looked empty, her light gone. She felt so cold already. I kissed her head over and over and told her I loved her. My tears fell on her skin. I rocked her in my arms and prayed that she hadn't felt pain. That she knew we were there with her, that we were so proud of her, that she was never alone.

I watched my husband's heart break. I watched his torment, and I saw the guilt in his eyes. The same guilt mirrored in mine, we couldn't save her. I watched him hold her in his arms to say goodbye. We were wrecked. We'd never be the same again.

The surgeon cried with us. The nurses cried with us. One of our favorite ECMO tech's made a special trip up to see us and he sobbed beside us. Kinley touched so many people in that hospital in such a short time, so many people loved her.

Two of the nurses helped me make foot prints and hand prints. They took a small piece of her hair for me to keep. They were so gentle and patient with us. They told to me take as much time as I needed, but there would never be enough time.

Eventually it was time to go. I needed to go home, to hold my children. I needed to be the one to tell them. We would need each other now more than any time in our lives before.

That walk. I'll never forget that walk. Leaving my baby alone on the bed, knowing I'd never see her sweet face again. I'd never smell her magical baby smell, or hold her tiny hand in mine. I can't put into words the heartbreak, the utter grief and despair. Without Josh, without him holding me up, I don't think I would have made it.

This, this is what I dream each night. I relive the worst moment of my entire existence. It never gets any less real. It's like I'm still in that room, with the sounds, and the smells, and the feelings.

I can't escape it, because it's not a bad dream, it's reality, and to forget would be to forget a piece of my baby. There won't be any forgetting.