Dear Koralyn

Dear Koralyn,

I am grasping. Tuesdays and Thursdays find me grasping. Grasping for hope and purpose and meaning in your life and in your death. I cry most Tuesdays and Thursdays, it feels good to let it out when no one is looking. When I am alone and no one is counting on me to be happy and strong. This is when I seem to be desperately grasping at something just out of reach. Since I don't have you to advocate and fight for, I want to fight for something. I want to raise awareness, let everyone know you were here and you mattered. Help those like us who are hurting. Shout from the rooftops so that maybe one less precious daughter or son will die from a CHD. One less mama will be sitting alone desperately trying to figure out how to honor her baby and the life she lived, and the one she never got to live too.

I miss you every day, there is not a day that goes by that I don't think of you and miss you. Not a day goes by that I don't wonder what we would be doing together, you and me, you and daddy, you and your brothers. All of us together. Most days I don't show it, most days now, almost 3 years later aren't that hard without you, not like in the beginning anyway. Then some days, some moments, are still gut punching awful. Rest assured I still long for you to be here, in our home, part of our family. In your car seat on rides to pick up your big brothers from school. In your chair at the dinner table, in your bed, in the room that never got to be yours. In the family photos that I look at and see an empty space in every single one where you would fit perfectly.

While you were alive, I was so scared of the journey we were thrust into. I was a reluctant participant. I mean I showed up and loved you so much but I was scared out of my mind about how you and your half a heart was going to change our lives forever. No more playdates at Mcdonalds or Chick Fil A, without worrying about the germs you would pick up in the playplace. No more family vacations where we could go as high or as low as we wanted without having to worry about how the elevation would affect you. No more medicine free days, or worry free days. I was scared to bring you home, terrified really. I felt so much safer at the hospital, with the professionals there helping me with every med and every desat. I pictured you turning blue in your crib and me panicking and trying to race you 45 minutes away back to the hospital you had lived all your life in. I was so worried I would forget a med or a tube feeding or to chart it all so we could see a problem before it got big. I was overwhelmed at the responsibility of it all. Just so terrified I would fail you, I would fail Amos and the boys and all the doctors who were counting on me to suddenly be super mom. To suddenly be really good at all these hard hard things.

All my life growing up I had been told how special I was. My family had told me many stories of my journey with CHD. How tiny I was (oh but a little stubborn pistol, running up and down the hallways a week after my open heart surgery) How sick I was as a baby and a toddler. How scared everyone was when they heard the words, "she has a hole in her heart." I was so little in fact, I don't really remember the turmoil and fear, I only remember what comes after. The surviving and thriving part. My mom, dad, and grandma would always tell me how worried and frightened they were for me. How hard it was to watch me struggle and suffer. To be taken away and opened and brought back different, with scars that would remain forever. As a little girl I only remember what came after. The pride when my mom told me to "show em your zipper Kenda." (Open heart surgery scars are often called zippers because they look like a zipper going down the center of the patients chest, often with buttons as well where drainage tubes were inserted) I also got lots of attention and special privileges, which of course I loved!

So you see Koralyn, I never grasped the fear and pain part of congenital heart defects until you came along and I became a heart mom instead of just a heart patient. Then I realized what my mom and dad were talking about. How it's like your world turns upside down and your own heart is ripped from your chest and you would give anything and everything to make it better. To make it just go away. I begrudged my new role really. I wanted to go back to simpler times when I was the heart warrior and I was a strong survivor. I didn't want to become the mom of a child with CHD. Who does really? We all want our babies to be born whole and healthy and strong. Isn't that the cliche' statement everyone spouts when having a baby? Oh we don't care what it is "just as long as it's healthy, thats the most important thing."   I wasn't ready to become a spectator, a caregiver. I was so used to being the one that was cared for, it was an ugly shock to be the one sitting by the bed, instead of the one in it. After being in both places I would take being the patient any day of the week. When you sit by the bed as a mom, you can't take away the hard for your precious baby girl. All you can do is sit and fight with prayers and hope and more love and courage then you ever thought you could have. It was and is the hardest thing I have ever done in my life.

About a week before you died, your dad and I sat having a rare dinner to ourselves out on the patio of the food court. It was a sunny evening and we could see the windows to your nicu room from where we sat. At that point I was overwhelmed with fear and exhaustion. We had spent over 100 days in the hospital. Many of those were like a twisting turning roller coaster ride, watching you suffer all sorts of setbacks. Being terrified you were going to die, only to watch you turn the corner and come back from the brink. Then we would get our hopes up, only to have them dashed by yet another set back. Two steps forward and 10 steps back it seemed.

Anyway, we sat talking about the future. At this point we were planning your homecoming after your second surgery. The Glenn procedure would be performed early, and hopefully be just what you needed to finally make it out the door and into the sunshine beyond the hospital walls. I was exhausted and scared and oh so tired of my caregiving role. I sat questioning what our lives would be like with you at home. How would we possibly manage? Would we ever sleep through the night again? What would the boys lives be like? Would they grow up to hate us for all the hard that was about to come their way? Every time one of us got sick even with a simple cold, it could become life threatening for you. Even now, with you gone, every time one of the boys gets sick, I immediately think about you and what a scary situation it would have been if you were here. Would we ever be able to take another family vacation again? What about when it was time for you to date? I remember being so scared that some sweet boy would fall in love with you, and you him. Then he would run when he found out about your half a heart and the fact that you wouldn't ever be able to have babies with him. I asked Amos, what young boy would want to sign up for that? And what about when it came time to tell you about the baby thing? How would I ever sit you down and have that conversation? I knew if you were anything like me, you would want to have babies of your own. I remember daydreaming about being pregnant as a young girl. Wanting to have that round belly and feel that baby kicking. How would I ever be able to tell you that you couldn't have that? I didn't want to crush you, I didn't want it to crush me. It felt like everything that was joyful and simple was about to become complicated and hard.

Of course your Daddy sat there and for every argument I had, for every fear I voiced, he had an answer. We would love you through it. We would just do it because we had to. Because this is the road God had lead us down, and it would be hard and sometimes it would suck, but God would surely equip us, and you for this journey. He was all in Koralyn. He wasn't scared or resentful. He was Amos, sweet lovable Amos, your dad, and boy was he so proud to be your dad. All in. Your proud Daddy, ready to fight for you and fight any boy that broke your heart along the way. And besides, who knew what the future held, maybe by the time we would have to tell you you couldn't ever have babies, they would come up with a solution that would allow you to have as many as you wanted! After all, 30 years ago you would have been born and probably died within the same week, look how far we have come since then.

I know God doesn't work this way, but guilt sometimes plagues me and I wonder if it is because of my weak, scared, begrudging heart you couldn't stay. If only I had been braver and stronger and more all in emotionally, you would have survived and thrived. But because you and God knew how scared and weak I really was, you decided I couldn't muster it. I know, I know, thats not the way it works, tell me a thousand times that is not the way it works. Knowing what I do now, I wish I could go back to that sunny afternoon and be all in. Stand up and say, I am ready and willing to take on this fight. To walk down this hard path as long as my baby girl gets to come with me! Would it change things if I could let go of the fear and the doubt?

Don't get me wrong there were many things, so many things I was looking forward to in being your mama. I thought it was so neat that we would have the same battle scars. The same famous zipper and buttons and I could show you mine and tell you how much we had in common and how strong you really were. I was proud I had learned to feed you with your G-tube and I was ready to be in charge of all your meals at home! I was even going to buy you cute little covers for your button in your tummy, already helping you accessorize like any lady should. I was going to be right there with you for every appointment, every illness and setback, every proud moment and triumph. I guess in many ways I was all in, I was just terrified too. I think now how this, the worst case scenario, the story nobody wants to hear or be, this is much more terrifying. To have to wake up each day and wonder what I am missing, to have to miss you and celebrate your birthdays at a headstone in a graveyard rather then at the family table in our home. I should have been most terrified of this. I was really, I constantly second guessed all of our choices about your medical care and asked every nurse and doctor what the worst case scenario would be. Well Koralyn, we are living it. The worst case scenario happened. Despite everyone's prayers and medical science. Despite all the doctors hard work and all those who fought to keep you alive to make you a miracle, you are gone.

We are left here with three and a half months worth of pictures of you. Pictures and memories. I never got to fill up your baby frame with birth to one year pictures. All three of your brothers have one, yours would only have the first 3 months so I can't bring myself to fill it, less than half way. The nursery never got painted pink for you to come home to. There are lots of unused dresses and bows that remain in boxes, in hopes that one day a little sister might use them. Every time I see a little girl wearing clothes with little pink or red hearts on them, my own mama heart skips a sad beat thinking about how you would have been wearing something similiar. I was going to decorate your room in hearts and buy you ever stinking piece of heart clothing I could find. You probably would have been so sick of hearts your first words would have been, mom, stop with the hearts okay!? What can I say I probably would have driven us both crazy, but we would have had fun and a lot of love and your brothers and dad would have laughed a lot I am sure.

I just miss you Koralyn, this mama heart of mine looks at your picture now and longs to see you as you would be today at almost 3. When I go back to "your hospital" I think about how we would have been regulars there, it would be like a home away from home. Really it was the only home you ever knew. I am sure you would make us buy you frozen yogurt and a new Build A Bear with every visit we made. I think about how nice it would be to be known there, to belong there instead of feeling like we are the story no one wants to hear. Since you came and left, I feel like I don't belong in so many places, and my heart yearns to belong. I wish I could be like my mom and sit with you when you became older and talk about how much you put us through. Tell you how scared I was and what a miracle you are.  Watch you persevere and graduate from kindergarten and then fifth and eighth grade, and on to high school and then college. I wonder would you have become a nurse or a doctor? Or a teacher like me? Would your hair be brown or blonde by now? Would your eyes still be blue, and would you have those crazy long eyelashes like your brothers? How would they treat you? I have these images in my mind of them being ever so gentle and sweet with you. Your protectors. I can hear them making you giggle and scream too of course. I am sure they would be all in and so proud. We would try hard to balance your needs and theirs making you all feel special and loved. I am sure sometimes we would fail miserably but we would try our best and hope in the end, all of you knew that.

So here we are coming up on February, which is "heart month" and February 7-14 is congenital heart defect week. This month is another painful reminder you are not here for me to advocate for. You are not here to be my CHD buddy and fellow heart warrior. This month is a painful reminder of how I never got to be the heart mom I was so terrified to be. What I wouldn't give to be your heart mom now. To just be your mom. What I wouldn't give to be one of the miracle stories, one for the books and the information handed out to newly diagnosed parents. Like the stack we were given at all of our prenatal appointments with you. The stack of  stories every heart parent grasps to hear. Tell me these children do survive and thrive. Paint a picture for me of how it can turn out for good and include pictures of the beaming kids and their happy families. After all Koralyn, I was one of those stories so we were hopeful that you would be too.

I am sorry it is coming up on your third birthday and I haven't done great and wonderful things to honor you. There is no foundation in your name, no scholarship or fund. No walk or special day. I am still wrestling with what to do with this story I have been given. I have spent the last 3 years fighting to survive without you. To not lose hope, to smile for your brothers and love your dad and live. Still go on living and breathing even though it hurts. Trying to find the beauty and the meaning in all the pain of losing you. Trying to do the laundry and the dishes and make the dinners and clean the floors even on my worst days. I had your baby brother too of course, which is no small feat. We walked through a lot of the same doors we did when I was pregnant with you. Boy did that bring back memories and the longing that it could have turned out different. He is such a joy and a gift to our family. Some of God's sweet redemption to our story I believe. We pass your picture in the stairwell and Abram points and smiles and I swear he has said your name twice now. He will grow up knowing you are his big sister. He will know you and your story just like our Asa and Asher do.

I am trying with every single breath I take sweet Koralyn, to honor you and our God who made you. I want so deeply to help other mamas trying to do the same with their grief. I want to do big and wondrous things for you my Koralyn. I can't put into words what exactly it is I mean. This struggle in finding a place for my heartache, for my purpose in being your mom. In wanting to honor you and God who formed you in my womb for a specific purpose. Of course I have never really been a big and wondrous kind of girl, more scared and nervously laughing somewhere in a corner with a few dorks like me. I also try to keep a balance between my thoughts and work for you and my thoughts and work for your brothers. They are strong boys as you know. They ask about you still, where you are, and why you had to die. What made you sick and why we can't go back to Cook Children's to play and to visit your room. I want them to know how special they are for being your brothers and for being themselves. Your brothers, your dad, and God's great grace are what keep me going everyday. Still some days I am barely breathing and stumbling around in confusion. I am still waiting for all of this to make some sense, to have some reasoning. For now I will wait. Wait to see you again. Wait and try to figure out what it is I am supposed to be doing with all this broken in my life. I have all these notions in my mind of what this purpose needs to look like. I need help remembering that simple can be important too. So for now, I will continue to get up every morning and I will thank God I am breathing. I will work hard to love you and your brothers and to honor all of you, the living and the dead, and the gifts that you are to me and to our family. I will miss you, I will never stop missing you. Oh my sweet Koralyn, how I wish it could have been different for us. I love you to heaven and back again and then some more.