Awareness

 October is Pregnancy and Infant Loss Awareness Month. If you have a Facebook account I am sure you have seen at least one post about it. I have mixed emotions about these "awareness" months. I think they are important and can be healing and beneficial. The skeptic in me wonders if anyone outside the realm of say, baby loss, or congenital heart defects, or autism, even cares. Do they take the time to actually learn more or find compassion or do they just keep scrolling. After all, if it hasn't touched your life why should you care really? Isn't that society's mantra now? So these months are important and needed but I think they can also be a source of pain for the grieving parent who wants everyone to be as passionate as they about baby loss or whatever it is they are walking through with their precious children. We all want to be heard. We all want someone to stand alongside us and tell us our pain matters and means something. That need is ingrained into our very souls. I believe put there by the God who created us.

 I have been pregnant 7 times that I know of. The experts will tell you, that most women are pregnant  and miscarry before even realizing it several times in the span of their fertile years. After having Asa, I had an ectopic pregnancy and then months later, a miscarriage as well. I was devastated after the miscarriage and just knew we were never going to be able have another precious baby. I struggled with feelings of guilt and inadequacy. I felt as though my body had failed me and that I had failed my husband. We were blessed months later to find out we were pregnant with Asher.

When people ask me how many children I have, I always say 5 (since becoming pregnant with Karis) It is not that those two pregnancies I lost early on don't matter to me. Really they have affected each pregnancy since. It is not that I don't believe they were babies. I do. I believe they were babies, humans, souls, whatever you want to call them, from the moment of conception. I believe and have hope that one day I will meet them and know them. It just seems easier at this point in my life to say 5. I don't want to have to explain all my losses and receive looks of pity or make some innocent person feel even more uncomfortable then they already do when I mention my dead daughter. I guess I don't mention those other losses out of ease for both myself and the person asking. Of course I often share those two other losses with women who share about their own miscarriages. It is so healing to know you are not alone in that pain and fear. To know there are others who have gone before you and know the heartache of losing a baby you so longed and hoped for. It is a real physical and emotional pain to suffer miscarriage and ectopic pregnancies. It shapes our subsequent pregnancies if we are so blessed to have them. Mom's who have lost babies will relate to the fear in the first three months with a new pregnancy. Every pain or twinge or new sensation brings with it the thought you could be losing the baby again. You are more careful about what you do during those first months. Wondering if it was something you did, or something you ate, or were exposed to. The reality and fear that it did, and can happen to you are never far away. At least that has been my experience every pregnancy since suffering those early losses.

    The other day I was on a field trip with Asa and a sweet mom asked me all sorts of pregnancy questions. One of her questions caught me off guard and hit a nerve. We were talking about the rough morning I had had, trying to get myself and 3 boys ready and to school by 8am. She asked me, now how many kids do you have? I said, this will be my 5th. Her response stung. She replied, yes but really 4 right? I swallowed and said well, no my daughter would be 3 now, but yes this will be my 4th child at home to take care of. It was an innocent comment, and I don't think this mama was trying to hurt my heart, yet it stung. It stung because I do, and always will consider myself a mom to Koralyn. I carried her to 39 weeks gestation. I worked hard to grow her and keep her inside as long as possible. I saw her on the sonogram screens countless times throughout my many prenatal visits, tests and never ending ultrasounds. I felt her move inside of me and we bonded just like the rest of my children. Then I spent her entire life by her side, fighting for her. Any chance I got to hold her, touch her, or care for her, I was there. I pumped milk for her. Even doing so on a packed flight while on the way to bury my mom. I learned to feed her through a tube and sat through countless discussions with doctors and nurses. Several times I sat in a tiny room for hours and waited for the phone to ring to hear the latest update from her surgeon. I held her swollen bleeding body as they unhooked her vent and she took her last earthly breath. I picked out the dress she would be buried in, one she should have worn home instead of to her grave. I laid her in her casket for the last time before the lid was closed, never to be reopen this side of heaven. I was, and I am, her mama and I will be until the day I die. So when someone naively says, oh but really you only have 4 kids right? It stings to the very depth of my mama soul. Most child loss moms would say the same thing. Their child was here, they mattered. To that family they still matter. They are loved and missed and cared for every single day.

Another comment that stings is when I will have a well meaning woman try to relate to my loss of Koralyn. I have often heard the statement, "oh I know how you feel, I have had a miscarriage myself." Now hear me when I say I know these ladies mean well. I know they are trying to relate and say something comforting, yet this statement stings as well. I think this is the other problem I have with Pregnancy and Infant Loss Awareness Month. As I said above, I believe life begins at conception. I believe every life matters and that the pain and grief of miscarriage and pregnancy loss is real and justified. Yet comparing an early miscarriage to infant loss is like comparing apples to oranges, as my Grandma would say. They are both painful and real, yet they are both very very different. As a woman who has experienced both I can attest to that. I think by bunching all of this together it really does neither justice. I was thrilled with each positive pregnancy test. I was equally devastated with each loss. Losing those pregnancies and losing Koralyn can't even begin to compare to one another. Its not that one mattered more or less, its just that it really is two very different roads. I once had a friend say, its like those ladies have lost a nail and you have lost a whole hand, and they sit across from you telling you they know exactly how you feel.  Their intention  is not to be offensive or hurtful, yet it is. Her analogy is a good one. This isn't to discourage you from sharing your own pain. It all matters, I think its the comparison that stings sometimes.

The closer I get to having Karis, the more I am realizing our family will never truly feel complete here on this earth. In many ways I suppose I naively thought having another daughter would do that. I know how silly that is really, it becomes more clear as the days slip away.As we come to the end of this chapter of our lives. The one in which I carry and birth babies, my heart longs to have all my children here with me. So that there aren't any stinging questions and painful absences. Even though I will only have 4 here on earth, my body shows the wear and tear of carrying 5 to full term. I worked hard to bring these 5 babies into this world and I want them all here to show for it. I suppose that is normal human nature.   We don't want to exert huge effort only to have nothing to show for it. Or worse yet, only a cold stone in the ground with a name and two dates that are far too close together. Every parent prays they will out live their children. They will be able to raise and watch them flourish. A lot of parents get that privilege and yet far too many do not.  We realize every day that there should be another little body in the car when we are driving everywhere. There should be another chair filled at our table every time we sit down for a meal. There should be another birthday party to plan, another bed to fill, another little person to love and hug and teach. There should be, but there isn't. Every time I look at our family photos I see the spot where Koralyn would be and my eyes long to see it in real time. My soul aches to have us all here together as it should be.

 I am realizing in many ways, Karis will open up new doors of grief we never knew existed. I know I have had to work through a lot of that grief even in my pregnancy with her. I have had to work through a lot of the grief of missing my mom and wanting her here during this time in my life. I am thankful for this hard fought healing. I praise God he is giving us this gift of Karis. Just like I praise God for the gift of Koralyn and her half a heart, and my crazy boys and their whole hearts. Learning that the hard, the pain, and the grief  of things can all be gifts. Learning to lean into it, instead of constantly trying to run from it. So that we can lean into our faith in Jesus who bore all of our pain on the cross. I think in many ways only those who have tasted pain and suffering can fully grasp joy and God's love for us. And who in this ever changing scary world hasn't experienced pain and loss in some way? It is impossible not to, if you live long enough.

 That is when I rest in the plan of God. That He knows what He is doing. He knows our hearts ache to parent Koralyn here in our home on this earth. He knows we grieve and probably will for the rest of our lives. Yet He knows we have hope in Him and we are waiting for the day He will wipe away our tears and introduce us to our sweet Koralyn. Oh what a day of rejoicing that will be!

Last night Amos and I watched a documentary called The Drop Box. It is about a pastor in South Korea who has saved hundreds of babies by creating a drop box. A place where desperate moms can abandon their babies, knowing they will be taken in and cared for. It is a powerful testament to this pastors belief in the sacred sanctity of all life. He talks at the end of the film what led him to create this drop box. It was his extremely disabled son Eun-Man. He speaks of his pain and questioning God about why. Why did you give me this baby instead of a normal healthy one? Why me? He talks about how he now knows Eun- Man his son, was a gift from God, not a burden. How God uses what the world sees are broken and discarded and he makes it beautiful and useful. I can't put into words really what a beautiful testimony it was to the faithfulness of God in the midst of great trials and pain. How this one man has taken his pain, and what the world says is ugly and unnecessary and he has used it to save lives and glorify God. That has always been my prayer with our sweet Koralyn. That God would take our pain, and turn it into His glory. If only we could all see the way this man sees. Beauty for ashes my friends. Beauty for ashes. If you know the pain of loss, know that you are not alone. Know that you have never been alone.

Psalm 34:18
" The LORD is near to the brokenhearted And saves those who are crushed in spirit" 

Job 5:18
For he wounds, but he also binds up; he injures, but his hands also heal.

What comes next?

   We fully expected to go back into the Perinatologist's  office and have her tell us our daughter's heart looked great, we were free to go enjoy the rest of the pregnancy. Four weeks before, she had told us to come back just as precaution because Karis' right atrium looked more prominent than her left. She said she was probably being overly cautious and since Karis wouldn't move it was probably just her position. We would get more images next month and then be good to go. So that July morning we were expecting easy. We would get to see Karis on the screen and confirm her cuteness and go on about our day and our "normal" pregnancy.

   Of course life and circumstances never turn out exactly how you have envisioned them in your mind do they? So when the doctor was taking what felt like an extra long time to get the images of Karis' heart, I knew we weren't about to be released from her care. I had been here before, the dark room, looking up at the screen as my husband sat to the side and the doctor moved the wand around on my belly over and over again. I knew long meant things weren't as they should be and the doctor was being extra careful to try and get the images she needed. I sat for awhile and then I asked; so her right atrium still looks enlarged doesn't it? Sweet Dr. Bleich sighed and said, yes it does. She brought up images on the screen and explained what she was looking for. She told us she suspected Coarctation of the Aorta.  Amos shifted in his seat and I started blurting out a thousand questions. Dr. Bleich was sweet and patient, answering my questions and telling me what to expect next. She reassured us that this diagnosis, if indeed it is confirmed, is not as severe as Hypoplastic Left Heart Syndrome. She also reminded us we need to remember this baby, sweet Karis, is not our Koralyn and we would not be experiencing the same thing with her. She told us her office would schedule with the pediatric cardiologist and let us know of our appointment time. She hugged me sweetly and let us go.

  The tears didn't come until Amos and I sat down in the all too familiar hospital cafeteria for lunch. I was feeling a range of emotions but was too proud to cry while in line for my pasta dish. I stood waiting for my turn, feeling like the room was spinning, like we had been here before and it was not somewhere we ever wanted to be again. I felt physically numb and detached from the noise and people around me. I felt as if I was floating above the scene, like this couldn't actually be my life, I was just watching it play out.  Emotionally distraught. Confusion, anger, fear, all swirling in my head at once as I tried to stand still and not pass out with the weight of it all. How could we be here again, in this awful space where they tell you something might be wrong with your precious baby growing in your womb. The baby you have prayed for long before even becoming pregnant. How could we be expected to calmly make our way to the elevator and then  down the hall for a bite to eat before we headed back to reality. It all felt surreal. I remember after getting Koralyn's initial diagnosis Amos and I left the hospital in Mansfield and did the only thing we could do I suppose. We went about our day as if we hadn't just been run over by a Mack truck. We mindlessly drove to get a burger, ordered and sat down and just like now, the tears came with our food. Everything felt numb and surreal. Like we were moving more slowly then the world around us. Our plans had suddenly been derailed and yet the world just kept moving like nothing was different, like we didn't just receive a gut punch that knocked us into oblivion. Now here we were 3 years later doing it all over again. I wanted to stand up in that room full of people and yell loud how unfair this all was! Not again, not more hard, not one more thing to try and survive. How could this be happening.

  Immediately the anger came. I sat and wondered out loud to my husband why us. All we wanted and hoped and prayed for was a daughter. A healthy, whole, daughter to love and bring home and raise. People had babies all the time, perfect healthy babies, boys and girls. People had big families all the time, five or six kids and all were healthy. So why was it too much to ask for us to get one more chance at having a daughter? We do our best, we are raising our boys the best we know how and loving them as much as any parent could love their kids. I try to be so careful during all my pregnancies, going so far as to cut out caffeine and lunch meat and all the things the experts tell you to avoid. Trying to rest and be gentle with my body so my baby can have the best chance at developing well. I sat and wondered how some moms drink and smoke and abuse themselves while pregnant and their babies come out whole and healthy. I sat and thought of all the babies that were normal and healthy and the mom chose to abort them for whatever reason. I thought about all the babies who are born and then are abused and neglected and unloved. Discarded, as if they don't matter. I sat and thought on all these things and stewed in my anger and confusion. Did I do something to deserve this? Did I eat something or expose myself to something to cause this again? Am I paying for past sins? Should we not have been greedy in wanting just one more child when we have three healthy boys to love and raise? Am I not good enough? Oh the questions that flood your mind when bad things happen. Like a confused child, I want a reason and an answer and I want it now! It better make sense and calm all these crazy emotions running through my veins. Inside I stomp my feet and lay down on the floor in a heap demanding an explanation like a toddler.

  My anger never lasts long. Always my next instinct is to run into the arms of God. Like that same tantrum throwing toddler. Now suddenly embarrassed at my outburst,  red faced and running for reassurance that He still loves me. He does of course. He knows I am human and weak. Confused and prideful in my indignation. I wasn't always comfortable in that. I grew up thinking you were never allowed to question God. Never allowed to feel negative or confused towards Him. I am so glad I have come to know Him better. Know Him as my Father, who knows my weaknesses and loves me anyway. How silly it was of me to think that as long as I didn't ever say it out loud or do my best to stifle those feelings I would be okay. He knows me better then I know myself. I believe He knew exactly how I would feel and react to this news about Karis. He isn't waiting for me to fail so He can strike me down and declare me useless.  He is waiting for me to surrender and come to Him in my failures knowing He will carry me, ESPECIALLY in my weakness. He is my Father after all. Like any good Father He wants what is best for me and I believe He knows better then I do exactly what that looks like.

  I need to remember in my moments of fear and doubt that there is a bigger picture here then what I can see. I am trying, but I am human too. I was reading an article yesterday about a young couple who had lost both of their sons in a horrible car accident. Tiny, precious boys with their lives stretched before them, taken in an instant. They told the reporter that they don't want this tragedy to be wasted or in vain. They believe God has a bigger purpose in this awful situation. They believe that they remain here without their sons for His reasons and they don't want to waste their pain by shutting down and becoming bitter. They want God to use this for His glory. I think this sums it up for any true believer who goes through tragedy. They come to a point where they realize they have a choice, to become bitter or to become better. Amos and I have tried since day one with Koralyn to become better. Don't get me wrong, I have my bitter days. I can throw one mean pity party for myself on occasion. Overall though, even in the midst of our pain we have tried hard to take our tragedy and allow God to use it. We pray He turns our ashes into beauty and our mourning into dancing. We want to be used and have purpose out of our pain, that has been our prayer since losing our sweet Koralyn, much like the beautiful couple in the article. Purpose in the pain, because either you let God give it purpose or you let the pain overtake your life. Better or bitter. We try each day to choose better, and the only reason we can do that is because of our hope in Christ.


  So it will be in this also. I will choose to believe that if Karis does indeed have a congenital heart defect like myself, and Koralyn, that God has a purpose for it. It isn't just cruel fate or bad luck as some would say. It is part of a divine plan. I know there are critics and non-believers who will scoff and say, how could you believe such a thing? That the same God who supposedly loves you has brought on a cruel and painful defect in your daughter's heart? Not once but twice now. To them I would say that I wrestle with these questions as much as anyone. My faith doesn't immediately give me all the answers I want. What it does give me is rest in knowing that I am just one humble being.  That I don't need all the answers. I rest in the sovereignty of God others seem to fight against. It gives me hope that I am not in charge and that what I think is the best plan for my life may not actually be the best plan. It gives me comfort as well, to think of God giving up his Son for me. The pain in that. Knowing that He knows exactly what this pain feels like is comforting to me. Since Koralyn died, I often think of Jesus on the cross in the moment when he cries out "My God, My God why have you forsaken me!" (Matthew 27:46) As hurting humans we often feel forsaken in our darkest moments. To think that Jesus actually took that on himself is so humbling and comforting to me. There is nothing that I can feel, not even in my worst moments that He hasn't already felt and experienced. Far worse indeed then anything I can experience.  He knows. He knows and my heart finds rest in that.

 Now one of my biggest struggles is feeling like I have to explain myself. Not to God of course, or those that love and support me, but to the critics. The people who wonder why Amos and I would choose to get pregnant again after Koralyn. Why after the birth of our precious healthy Abram would we keep going? How could we possibly be so foolish and greedy to want another?  How could we chance putting our children through more trauma again? Why couldn't we just be satisfied with what we have?  I know, I know, I shouldn't listen or care about any of the critics, yet it is human nature to want to defend yourself. To want to prove and justify yourself. I am not sure we are born knowing there are critics, I think we learn about the critics along the way. You learn that people are judging you. Looking at you and judging your choices, your words and actions. Then one day you wake up and you realize you care so much about those critics. You aren't sure why, but you want and need their approval it seems. It is impossible to get really, because no matter how many people are on your team and judge you approved there will always, always be a critic. You can choose to focus on your teammates or on the critics. Choosing the critics is never a good idea and only leads to defeat. Yet I am human, and tend to focus on the one negative, despite however many positives there are. I am that little girl still fighting for approval from the critics and a lot of the critics are just me, myself, and I.

  So here I am feeling like I need a good defense and explanation for all the critics. Feeling judged and defective myself. I sat in the specialist's office and immediately told her I felt stupid. Stupid for wanting just one more baby, stupid for trying again, when I have a heart defect and now have had one daughter die of her's. She gently reminded me that we sought advice from the experts, we didn't jump blindly into this. All those experts told us our odds were pretty good to have another healthy baby. About 95% good, according to all the data and the numbers. They also reminded us that we already beat the 5% odds of having a baby with a congenital heart defect three times with our boys. So we weighed the odds among other things, mainly our faith. We prayed and thought, talked and decided that we did indeed feel like we were not done growing our family and we wanted to try for just one more baby. So that is what we did. As Christians we believe that God is the Author and Giver of life and that if He did not plan for us to have another child we wouldn't. We believe, as it says in the Bible, that "children are a gift of the Lord." (Psalm 127:3) It does not say, only perfect, healthy, and whole children, it only says children. We have first hand experience that what the world tells us to discard as imperfect and a burden to our family, God calls precious and beautiful. He uses the weak and broken things for His glory and to bring us closer to Him. I know without a doubt that sweet Karis is a gift, just like Koralyn was a gift to our family.

  Next Tuesday, when we visit the pediatric cardiologist,  we have no idea what we will be told. We don't know if we will be given the all clear, or another CHD diagnosis. Of course we are praying and hoping for good news and release from the specialists. We know it can go either way at this point, and Karis being our fifth child, we know what both ways feel like. One is a mountain top moment, and one is a deep, deep valley. We rest in the fact that God has already met us in both places and we know He will be right there again, wherever it is we end up.

Who She'd Be Today.

There is a song,  the title is Who You'd Be Today, Kenny Chesney sings it well. This song keeps running through my mind. It seems to perfectly sum up where I am at in my grief. Koralyn's 3rd birthday has come and gone and we are fast approaching the anniversary of her death on July 25. While we try to celebrate her birthday and give back on that special and very bittersweet day, her death day is more for just us. It's often a quiet day full of grief and remembrance. We go to her grave and we cling tight to one another. We talk and remember and we let the pain flow freely on that day.

In many ways, I still can't believe it has been 3 years. It is so strange that she would be 3 years old and that we also mourn her death 3 years ago. Birth and death in the same year, cruel bedfellows to say the least. I look back now at that first year of shock and grief and I am so glad I am not there any longer. Yet in ways, I feel desperate to have people remember her. Some days all of that turmoil seems light years and decades away. Other days the pain is so raw and real it seems only an hour ago I laid my precious daughter down in her coffin for the last time. She wore a purple dress her Grandma Kay had bought for her just months earlier. Her head adorned with a little black bow that matched her little black shoes. She looked as though she was only napping.

Most days are so good now. Filled with 3 boys who keep me a tad insane and very busy. We are always doing something and planning the next thing we need to do. Life continues to move forward. I have breakfasts, lunches, and dinners to make. We have an endless pile of laundry that needs doing and a yard that seems to always need mowing. Life and tasks both mundane and fun take up our hours and our days. Yet our sweet Koralyn, as well as my mom and dad are always there. Koralyn smirks at me through her picture sitting on the window above the kitchen sink. My mom's picture sits near the fireplace, and my dad's picture, the one where he is being bucked off of a wild bull is ever present in the guest room. Our loved ones, our missed ones are all around us, frozen in time. Each one so young when they breathed their last breath and left this earth. We talk about them as much as the boys want to. Amos and I talk of our Koralyn when the pain is raw and we need each other to know. Asa prays about both of his sisters now. 

I thought in my mind, that Koralyn would forever remain the sweet precious baby she was when she died. Frozen in time like her picture, my forever baby, as some call infants who pass before their first birthdays. I wear her little gold baby shoes around my neck each day. Yet lately, especially now that I am expecting our 5th child, another sweet daughter, I seem to wonder more and more who she would be today. Who my sweet Koralyn would be at 3 years old. 

Last weekend we had the privilege of going back to Cook Children's to visit a mom and her sweet boy. They have taken up residence on the 3rd floor, the heart floor as it called. Her son, sweet Matthew will be 3 in early July. He has HLHS just like Koralyn and has had some complications since his 3rd surgery the Fontan. He had the surgery in late April and has been back at the hospital since very early May. With only a brief trip home in between. He and his mom are living on the 3rd floor. Patiently waiting for the day they can hopefully go home for good. We met back in 2012 when they were staying at the Ronald Mcdonald House awaiting Matthews arrival. Then we became neighbors in the nicu and then the picu. Matthew is such a sweet little guy. He was so happy during our visit, you would never know of his heart condition if it wasn't for his oxygen tubes and other obvious equipment he currently needs. Without all those tubes Matthew just looks like a normal little man. That seems to be part of the cruelty of CHD's. Our kids look so normal to the outside world.  

The last time I saw Matthew before this past weekend, was when he was still a tiny baby at home in Amarillo. Getting to sit and visit with his sweet mama and watch him play with my boys, really made me stop to think about where Koralyn would be today. She more then likely would be through with her 3rd surgery as Matthew is. She would probably be a tiny wisp of a girl, as congenital heart defects usually stunt growth. (I always like to think had I not had an ASD I would be taller then the 5'6 that I am today, maybe that is just wishful thinking on my part) I sat and wondered if we would be struggling and still in the hospital after her Fontan. Sweet girl struggled so much after all of her procedures, I wouldn't doubt it may have been a bumpy road for us had she lived. I wondered if she would be as lively as little Matthew. Smiling and laughing and running the halls in her little sock feet. For a moment I sat and wondered why we didn't get this privilege of walking her through like Matthew's mama gets to do for him. I often question if God knew I wasn't strong enough, wasn't capable enough to handle the road ahead. I often struggle with feelings of not being good enough to deserve my sweet girl here on this earth. I know better, and yet I struggle. Don't all parents feel inadequate for the huge job that is parenting and raising up a child? 

I feel in many ways this road I have been on is tougher then the one I would be walking had Koralyn lived. No parent wants to stand by her child's grave on the important days. No parent wants to wonder about her child's voice or hair color, or what the weight of their little body would feel like in her arms. I was so scared for what our future held when Koralyn was alive. Mostly for my boys and how their lives would be affected. Just a few weeks ago as our family enjoyed a road trip up the Blue Ridge Parkway I thought of Koralyn and how the trip would have been so different with her. Would she have needed oxygen to make the drive up in elevation? Would we all be holding our breath in worry for her? Would we have even decided against the location due to complications. She comes to my mind every single time one of my boys gets sick. I think about how scary all the illness would have been with her. Now what I wouldn't give for a chance to see how we would have rallied and succeeded in the face of sickness and difficulty. As I often say to Amos, we would have done it no matter what. We would have loved her and fought for her and adjusted  our lives. He always says back to me, Kenda we were already doing it. We were already doing all of those things. It is then that I struggle with the whys. Then why is it we couldn't keep her? We were loving her and doing our very best and she still slipped away. Why is it that we didn't deserve to keep loving her and fighting for her? It is in those moments when I must rest on God's sovereignty and also His goodness. 

Jeremiah 29:11

11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

I must decide now that this is His narrative for my life as well as Koralyn's. I must keep on loving her and in several ways continue to fight for her. I still struggle with the fact that I want to do big things to honor her. I do realize though, that each day I continue to love and care for my boys and do little things in Koralyn's honor, I am succeeding. I am not letting death win. I am not letting bitterness take over my heart and my mind. Don't get me wrong, I have some days, especially it seems some early mornings where I want to succumb to the pain and the bitterness and let it eat me. I want to yell out how unfair this all has been and cry until my head throbs. 

Most days I am okay with carrying these memories. I feel so much redemption over me as I expect another sweet daughter. The questions from strangers feel less cruel now, and give me an opportunity to tell my Koralyn's story, and better still, the story of how God has carried me these past 3 years. When asked now about my growing belly and if I am finally getting my girl, I can proudly say yes! It is a girl, oh but she is not my finally. There was another precious girl before her, Koralyn Marie was her name. And while she doesn't hold space here on earth any longer, she does hold space in our family and in our hearts every single day. Her pictures hang on the wall and her memories in our hearts and minds eye. 

So here I am in this new stage of grief and joy. Filled with so much hope for the upcoming birth of another daughter. Filled with gratitude for the amazing rambunctious sons I already have. Gratitude for Koralyn as well,  and also filled with questions about who she would be today. I can picture her here in the house in her room filled with toys and bows and dresses. Running and giggling after her brothers. Being feisty at all of her heart check ups and many doctors visits. Continuing to steal all of our hearts as she did during her short time here on earth.  Like the song says,"the only thing that gives me hope, is I know I'll see you again someday."  

John 14:2

2 My Father’s house has many rooms; if that were not so, would I have told you that I am going there to prepare a place for you?

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.