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. 

Things I would say.

I am very stressed over the upcoming Thanksgiving Holiday. I feel the need to prepare and make everything good and hopefully smooth. In the meantime, I seem to be making myself sick and miserable with worry. Forgetting what the holiday is supposed to be about and focusing on what I will look like and all I need accomplish. Walking through the stores this week buying different Thanksgiving Day meal ingredients, I can't seem to believe that its my turn, that I am old enough to be hosting and cooking the meal. Oh how I miss the days of driving to my mom's and sleeping late. Not understanding why she was so crabby and stressed out. She worked hard to make sure things were just right and up to someones standards. Then there I was relaxing and smelling the food cooking in the kitchen and the anticipation of it all coming to a rolling boil in the living room! I miss those days, can't believe they are gone really. I wonder if my mom were still alive, what our Thanksgivings would look like. Certainly not like this upcoming one I believe.

I get it now, why my mom was so stressed that is. She built up this standard in her mind that she needed to live up to. I assume her mom helped her concoct this unattainable standard, and probably her mom's mom before that. I think most women have it, ingrained somewhere deep down, whether it goes many generations back or just one. So instead of basking in the meaning of Thanksgiving, she was wallowing in the muck of expectations, her own or someone elses. Now as her daughter, looking back on all those holidays when she worked so hard and seemed so endlessly stressed, I appreciate more her effort. I also wish I could go back, I bet she does too, now having the perspective she does. I can hear her tell me to calm down. None of these things I am worrying so much about are even going to matter, and heck if I burn the turkey, we can all load up and go to the best chinese buffet in the metroplex. She would probably tell me, if she could do it over, that she wouldn't care so much about creating the perfect image, she would care more about actually living in, and enjoying the sweet moment given. Trying harder to grasp the real meaning and moment instead of some image someone told her she had to accomplish. I think she would be less stressed about someones expectations and more concerned with  what matters. What really matters on Thanksgiving, isn't the perfect food, or the decorations or the dust on my blinds and baseboards or lack therof. What matters are the people and the blessings and the THANKFULNESS. Don't get me wrong, I also think my Mom worked so hard on all those Thanksgiving and Christmases past because she wanted us to love and enjoy them. She wanted us to have happy and joyus memories of those times to carry with us, and oh do I ever. I have so many sweet memories of her efforts, but I also remember her being so worn and stressed and yes sometimes just a tad bit crabby because of it! Of course what mom doesn't have her crabby moments, am I right!?

A few weeks ago I sat at the kitchen table with Abram. Just him and me, eating a quiet lunch together while the older boys were at school. I sat enjoying his sweet company and the rare quiet in my home. I looked around at the table and chairs and suddenly it struck me. There were four empty chairs at the table in that moment. Four. I sat there thinking who would fill those chairs. Thinking of the four people that have died over the last 2 1/2 years. Thinking what I would say to them if they were sitting around that table right at that very moment. I looked at the chair closest to me and thought first of my sweet Koralyn. I thought of her as a small child, around the age she would be, 2. Thought about what she would want for lunch, what juice would be her favorite, what meds I would be giving her with each meal. I also thought of her as a grown woman. What would I say, if given the chance. I would start by telling her how much I love and miss her. How I am so sorry for feeling overwhelmed by her many medical issues. I am sorry for my fear and my doubt. Sorry for the days in the NICU I could have held her, but was too afraid to mess up all her wires and tubes, or too afraid to bother the doctors and nurses with my requests. Sorry for all the early mornings she was awake and talking it up with all the nurses and I was over at RMH sleeping. I would ask her about her favorite things. I would tell her thank you for the amazing gift that she was and tell her about my very favorite times with her. My pregnancy and growing belly, the moment in the medical building after the first world spinning diagnosis. When I clutched my swollen belly and told her how much I loved her and how it was going to be okay. The moment we learned she was a girl! The precious rainy day we spent in room A18 snuggling in the purple chair. Feeling a bit normal, just getting to hold and love on my newborn daughter as she slept and snuggled next to my chest. I would hug her, hold her. Feel her precious hand in mine and her sweet breath on my neck as she hugged me. Feel her beating heart in her chest up next to mine.

I moved on to the chair next to Koralyn's and thought of my Mother. Oh what I wouldn't give to be able to say a proper goodbye. I would ask her if she was scared in her last moments. I would tell her I am so sorry for that pain. I would tell her I loved her and that I am so sorry for all the times as a teenager that I was awful and ungrateful and took her for granted. The times I thought it was all her fault that my parents divorced, not seeing her effort in the 18 years they were married. Not remembering her struggle and her tears. I would thank her for sitting by my hospital bed all those years ago as my little body endured open heart surgery. Keeping vigil with me all those weeks, fighting for me, being scared and worried. I would tell her as a mom to a precious baby girl with a heart defect I understand better what she went through. Her pain, her exhaustion. I would tell her I remember and am so thankful for the many sweet moments she gave me over my lifetime. The Christmas mornings full of stockings and bikes and toys, even though we lived in a double wide trailer and I know they struggled to pay the bills and often used lay away to give us those gifts. The thoughts and effort she put into our days. I would thank her for the moments she taught me to be kind and think of others and give back. Like all the Christmases we picked angels from the angel tree at the mall. How much fun we had buying those gifts and thinking of the joy of those kids. I would remind her about the times in middle school when we would cry together every night, because I was being bullied and I dreaded walking those mean halls every day. I didn't know at the time how that must have been so gut wrenching for her as much as it was for me. I would Thank her for that Valentines day in the 6th grade when she bought me one of the biggest bouquets of chocolate roses and sent them to my homeroom as a secret admirer. She knew all the other girls would be getting something, it was a thing the student council did every year and for a dork, in stirrup pants and oversized glasses the chance of being gifted a chocolate rose or a pink carnation was slim. She knew I would be teased and dissapointed when my name never got called to get my Valentine surprise. She was thinking of me. She thought of me more then I knew really. That Valentines Day stands as one of the best in my memory, because no one knew the secret admirer was actually my mom, one of the only fun and exciting days I had in my horrid middle school career.  Her heart broke with mine, I know that now, as a mom myself. I would tell her she did a good job, she loved me the best she could and tried so hard to make things good for me. Oh how I miss her.

Next as I sat thinking, my Grandma came to mind. I wondered what she would say to me. She died March 2012, when I was nine months pregnant with Koralyn and couldn't fly out to attend her funeral. She was the first of the deaths that would occur. She was 94 when she died. She went quickly and died just 7 weeks before her 55 year old daughter would be killed. She had already buried one daughter years earlier, so we were grateful she was already gone when my mom got killed. Mom's grave is just below Grandma and Grandpa's. I sat for a moment still, thinking of my words to her. I would tell her that I am thankful for all the times she encouraged me and let me know she was so proud of me. I would apologize again, for my atrocious behavior as a teenage girl. the times when I was so self centered and became angry and impatient when she would ask for a ride to the post office or the store. I would tell her now, if I could go back and do that over, it would be different of course, I would be different. A bit less awful and selfish, a bit more gracious and thankful. For often it was her that would give me rides to and from school after my parents divorced and my Grandma became like a mom to me really. We would talk about the memories we share, the lunches at Furrs and the ice cream cones at Mcdonalds. The long drives to my middle school I was transferred to, to try and escape the ridicule and threats that became constant. The nights when I was smaller and we would cuddle in my mom's old room as the clock radio played Nat King Cole and Frank Sinatra. I would lay there with her and look at the old paintings of New York, or at least I imagined thats what those water colors depicted. I would dream of visiting that city and fall asleep safe and cozy in that little house on Mockingbird Lane. Always waking to the smell of eggs cooking or bacon frying the next morning. I would thank her for her help in shaping my childhood and giving me so many good memories along the way.

Last but not least, my Dad. Who in recent months had sat at this very table, celebrating Christmas and birthdays, as well as everyday life. My words to him would be much the same. I would tell him I am so glad my sister and I got to help usher him home when his time came. Thank him for his love, let him talk and tell me his thoughts now.

By the time I sat at my table and made it around to the last chair, the chair my dad would be sitting in, I was emotionally exhausted. I sat there and also wondered what the conversation would sound like between all of them. What would they say to one another? What would my mom say to sweet Koralyn, or to her mom. What would they all say to my dad. I think those conversations would be tempered now, with regrets but also a lot of laughter and a heaping of grace towards one another.

I remember right before Koralyn was born, my mom called one night as I was driving to Walgreens for shampoo for the boys. Stocking up for my time away I knew was about to happen. My mom was so broken. She cried and told me about the night before Grandma died. How she had gone to the nursing home and realized Grandma had signed some paper, refusing to go to physical therapy and not realizing that it would void her payments and her status at the home. My mom was a worrier like me, and a big ball of stress most times. She told me about how she got so frustrated and angry with Grandma and how she had yelled at her in the dining room in front of her friends. Eventually she helped her to her room and into her bed, telling her she would take care of the problem. She told me Grandma seemed stressed and sad after the incident and didn't say much as Mom left. Then the next morning Mom got the call that Grandma seemed to have had a stroke at the breakfast table and she needed to come right away. By the time Mom made it to her side Grandma was being loaded into an ambulance. I can still hear the pain and anguish in my Mom's voice as she told me she got up close to my Grandma and told her she loved her. Said it three times loud, making sure to look grandma in the eyes, for some sign she knew, she knew of the love and desperation in my Mom's voice. Mom said she slightly nodded, but couldn't talk at that point. She died the next day, with my sister holding her hand in that hospital room in Albuquerque. Mom cried and just talked about the great guilt she felt, wondered if the stress of her yelling at Grandma had sent her into this medical crisis and death. Wishing she could change it. Go back, give grace, do it differently. Little did I know not two months later I would be standing over Mom's casket as they lowered it into the ground next to Grandma's grave.

I sat at my dining room table thinking all these heavy thoughts. Feeling regret and sadness, but also being grateful for all these people, all these lives I had a part in. All this love and these lessons. I believe now that all four of these great people would have words of love and wisdom for me. They would have a different perspective. I believe they would tell me to do my best, work hard and be thankful. Slow down and live. Forget about all these silly requirements and expectations we put on ourselves. Be kind, for all that matters and is sacred, be kind, and show love every single chance you get. If you screw up, don't live with that regret, say sorry, make amends and try to do better with every forward step you make.But also remember to give grace to yourself because we have a Father who has given us amazing grace and mercy and we don't do him any service when we can't remember we are forgiven.  They would tell me not to be afraid, there is more to come and its bigger and brighter and better then anything we can imagine here on earth. I believe they would tell me to keep running my race and to finish well. Love is what matters. Not romantic love the world thinks of, but Agape love, like the love God gives us.

So this Thanksgiving, as I sit around this very table with the loved ones I do have left; I will try hard to remember these lessons I am still learning, from those that have passed on. I will love them in these moments, I will be thankful for them and these breathes we get to take. I will try not to worry so much about the dust and the noise and whether or not everyone thinks I am a good cook or a stellar decorator. I will think about what I would say to those who are gone. Yet, instead of feeling regret for those things I can't change and those words I will never get to say, I will pour all that love into those that remain and I will do my very best to cherish them all and not waste one minute the good Lord has given us as we journey here on this earth.

If you are still blessed to have all of your family members with you, say those things you need to say. Tell them sorry, tell them thank you, tell them you love them so much. Don't wait, because tomorrow may never come, for either you, or those you love. You don't want to be sitting around an empty table thinking of all the things you should have said. Say them now. Be thankful and say them now.

"And I heard a voice from heaven saying, “Write this: Blessed are the dead who die in the Lord from now on.” “Blessed indeed,” says the Spirit, “that they may rest from their labors, for their deeds follow them!”  Revelation 14:13

Because He Lives

I know many of you know part of this story I am about to tell, but I feel very lead to tell it again, in full, as best I can.

I came to faith at a very young age, so I feel like there is very little of my life without knowing Jesus. I have strayed, as most do at some point, but even in my straying I have always known and felt God has been with me. Some claim to hear God speak often. While I do feel the Holy Spirit and his leading in my life, I haven't had many occasions where I have heard God speak to me. I think if we were honest most of us don't, at least not in the way some think and like to portray or us crazy Christians. So anyway, here is my story of hearing God speak to me.

The night before our sweet Koralyn died I was standing by her bed talking to God. Not out loud of course, which sometimes I do when alone, but  talking to him none the less. My pleas went something like this. God you cannot take my baby from me, you have already taken my grandma and my mom and if you take my only daughter I will not make it. There is no way I can walk out of this hospital and go on living if you take my daughter God. Please just not that Lord. Don't ask me to do this, I have already had to bury too many, not her Lord, not this. Please God, Please. Later in the PICU bathroom, I got down on my face and prayed that the Lord would please send us a miracle, I knew he could do it if he wanted to. So please let us, let Koralyn be a miracle. As I finished my prayer on my hands and knees in that bathroom I told God I wanted this miracle more then anything I have ever wanted but that ultimately it was His will not mine. If he decided against a miracle please give us the strength to go on somehow. Your will, God not mine oh but please can our wills be the same this time.

Earlier, as I was pleading with God and standing by my daughter's hospital bed holding her hand, I heard God speaking to me. Not audibly of course, like some big booming voice in the movies, but I knew it was him. You see as I was telling God I wouldn't be able to live if he took my daughter, a song suddenly started playing in my head. This song wasn't one I grew up hearing all that often. It wasn't a family favorite or one I had even heard more then a few times. Yet suddenly, this songs chorus kept replaying in my mind. "Because He lives, I can face tomorrow. Because He lives, all fear is gone. Because I know, He holds the future, and life is worth the living just because He lives." I think standing there in that moment, I knew my daughter was going to die. God was telling me, "I am going to take her Kenda, but you can go on living, because I live and that will be enough. Sometimes it may not feel like, these days ahead will be your darkest yet, but rest assured dear one, you can indeed go on living, because I live."

Fast forward a day or two and we are at the cemetery to pick our daughter's plot. The care taker took us to the baby section first. The cemetery where Koralyn is buried is considered historic and was started sometime in the late 1800s. The baby section is located in a newer, less used part. I immediately hated it. Unlike the rest of the place, this section had no trees and in July, standing there for just a few minutes I was burning up. It felt so bright and blistering hot. I stood there and thought about my baby in that ground next to the other babies and I hated it. I didn't want her to be hot and in the constant unforgiving Texas sun. I of course know its not her, only her body but it just didn't seem right. So the nice man, in his boat shoes and his Carnival cruise shirt, told us he had some spots open in the more historic part of the cemetery. I told him yes, please take us there because I hate this place.

We stopped in front of two very large trees near the back of the graveyard. He told us which plots were available. I liked this spot much better, I could see myself coming to visit her here. Sitting with her and bringing her flowers and such. As we were standing there, my Aunt pointed out the cross directly in front of the spot we had decided on. It had the name Sheila on it. Sheila was my Aunt that passed away from a brain tumor years earlier. She was an awesome fun lady, and I have many happy memories that include her. I walked over to look at the front of the cross and noticed a bench. On the pink marble bench were engraved the words, Because He Lives, I Can Face Tomorrow. I knew in that moment that this was the spot I wanted my daughter to be buried in. As I have visited her grave often in the past two years, I have noticed how many other babies and children are near her grave. Some living a month, others a few years. Some buried the same times as their mothers. Some lived and died all in one day. As I stand over these graves I often wonder if my Koralyn has met these precious souls. I picture her up in heaven knowing of me, knowing these other children who were probably as loved and as missed as she has been. I take comfort in that, and one day I picture meeting all these beloved souls myself. I often go to the bench and marvel at how God can speak to us even today, if we are willing to listen. I don't believe that bench just happens to be there because of coincidence or fate. I believe its because of God and his care for the brokenhearted.

Then on the 2nd anniversary of Koralyn's death, we found ourselves far from her grave and asked friends to take her flowers and balloons so her grave would not be bare. I had a hard time being away from her grave on that day, but took comfort in the fact that my sweet friends were taking her special things. Again not that I believe Koralyn is there, I know she is not. Her grave is all I have left on this earth to take care of for her. As a mother I want so badly to take care of her, and visiting her grave and keeping it nice and decorated is a way I can tangibly do that here on earth.

 We had decided to take a quick family vacation to Arkansas. Our original vacation to Boston was canceled, when just a few days before, it was determined the time had come for my dad to be put on hospice. While in Arkansas, I decided we were so close to Branson that we should detour and take our boys to Silver Dollar City. This theme park is based on an 1880s mining town and celebrates American craftsmen and the good ol days. I have some very good memories of going to Silver Dollar City with my dad, my cousins, and my grandparents. So we thought this heavy day, would be a perfect day to go have fun and make happy memories with our boys. It was a very bittersweet day. As I walked the park and remembered the happy memories my Dad tried to make for me, during a very scary time in my life, as my parents divorced and I moved around. It was made even more bittersweet by the fact that my sister had told me,that morning, that Dad's condition was starting to deteriorate rapidly. He seemed confused and a lot of his talking was jibberish. He didn't really want to eat or drink much either and was sleeping a lot. I remember standing on a bridge waiting for the boys to ride the Log Ride with their daddy, and thinking about the weight of all this death and grief. I wondered what it would be like to take our Koralyn to a theme park, would she enjoy riding in her stroller and people watching. I remembered my grandfather Pop, and my dad, trying hard to give me good memories here and how strange it was that Pop had been gone for awhile, and now it wouldn't be long until his second son, my dad would join him. I thought back to those days with my young dad, thought about what I would do differently, what I would do again. I also thanked God that I had these moments and memories and that I could make new ones with my boys. Part of that description of being joyful and yet having grief as a constant companion.

It so happens that there is a little chapel at Silver Dollar City. In this chapel they actually hold weddings and church services and hymn sing alongs, just like in those good ol days. Well I wanted to go into the chapel as we passed it that morning. The boys protested of course, so Amos offered to stay with them outside while I went in and sat awhile in this quaint place. As I walked up to the door that morning, July 25, 2014. 2 years to the day our Koralyn died, I realized people were inside singing. Normally that would be enough to make me turn around, but as I got closer and opened the door, it hit me what song they were singing. Because He lives, I can face tomorrow, because He lives, all fear is gone... I sat down in a back pew in utter amazement and disbelief. I sat and sang and listened to the song, the song that in many ways has carried me over the last two years. I sat in awe at the wonder and care of God for my broken heart. You see, I don't believe that they were singing that song, on that day, in that little chapel by coincidence. I believe that our big God cares enough about the little things in our lives, and he knew just what I needed to keep me going on that sad day, and in the weeks to come, as I would sit with my dying dad. For me, hearing that song again in that moment, was reassurance that Jesus does indeed live. He sees me and my broken heart, He knows me and what I need. He cares for all of us who mourn and are brokenhearted. He lives and He is in every detail of our lives. That moment for me breathed life into the dark and dead places and was a sweet reminder of his care of me and for me. Indeed, as I have learned over the last two years, I can keep going, because He lives.  

Consolation Prize

I have been having many hard days lately. I will go through a week and have a few good days and a few bad days. This doesn't seem strange to me 2 years out and yet it does. I told my counselor weeks ago, during a few really bad days, that I feel so stuck in my grief. She reminded me that I have fresh grief with the death of my dad and I am not stuck but just cycling through once again. That was a revelation to me. I guess I feel in many ways, that I should be further along in my grief and more productive in it for sure. I have this standard in my head that I am not living up to in my grieving process. People have always told me I am too hard on myself,  maybe that is true, but I don't know how to be any other way. I have a real problem with being still, which as a Christian I am told to do. I am what the experts call Type A (anal rententive with OCD to a fault) I constantly feel the need to be productive, to be accomplishing something, working hard, doing a god job, feeling in control of the situation. Funny that God would choose to give me a daughter with Hypoplastic Left Heart Syndrome and 3 crazy boys! None of these things fit into a nice tidy, quiet, box or to do list.

When Koralyn was born I had to give up all control of both of my lives. The one at home with my boys and my husband, and the one at the children's hospital with my medically fragile daughter. I couldn't be in control of either situation, one where family and friends stepped in to take care of my home and boys, the other where I had to stand by as doctors and nurses made decisions for my daughter.  I look and think back to the weeks before Koralyn was born and nothing I did could have prepared me for the Tsunami that was about to hit my nice tidy shore I had made for myself. I am still picking up the pieces. I still sit on that shore and look around, I see some things coming back together and being made new and yet the destruction from the massive storms and the aftershocks remain. Just losing my daughter was enough to devastate and confuse me. Losing my mom in the midst of our turmoil, and then a year later being told my dad has stage 3 lung cancer has rocked me to my core. I still struggle daily with grief, exhaustion, fear, and anxiety. I am still working through all my grief stages. Some days I feel good. Most days the outside world, my friends, or my kids can't see the struggle I am having internally. I am living my life and trying to live it well, honoring the many gifts God has given me, loving my family and still finding joy in each day. Yet grief and confusion seem to be companions I can't outrun. Just when I think I have some clarity, BAM another confusing thing happens and I am brought to my knees.

That is not to say that I don't have much Joy and much to be thankful for, but some days I yearn to shake off these sackcloth and ashes and dance. In some ways I know I have and will continue to do so. It is also a harsh reality that I will miss my daughter and feel a void in my heart for the rest of my life on this earth. I will never again be the same person I was before that day in the picu when the machine keeping my daughter breathing was unhooked and she took her last breath.  I thought, I hoped, I would be further along by now, but I am still sifting through the rubble it seems. My foundation is not gone, but the walls have come down and in order to rebuild I have to clear away this debris and figure out a different set of plans, start from the foundation up. I still pray that God will turn my mourning into dancing and make beauty from my ashes. I have all these pictures in my mind of what they beauty should look like, I keep struggling with my picture and Gods picture, I am afraid.

All this ache is so deep, my wounds are gaping and seeping. My tender heart is still shattered into a thousand pieces. I stand here with it, broken in my hands holding it up to my God asking him to take it and make it  beautiful, not for me but for him. Broken is what I was, and what I am. It started that day in December when we heard the words, "I am sorry there is a problem with your baby." I was shattered a little more the day I got the phone call from my sister when she wailed, "its bad Kenda, its really bad, its Mom Kenda, Mom is dead." The last shards were broken, sitting on the edge of my dad's hospital bed, in my sister's house. Using the weight of my body to hold up my Dad as he sat dying, unable to talk, unable to sit under his own weight. All these moments now ingrained in the pieces of my heart and mind. Many of these moments so humbling, beautiful, and devastating all at once. These moments take you to the edge of life and back again. These moments replay in your mind and bring you to your knees.

I am sure many onlookers would speculate that I must feel angry. Angry at life and at this Jesus I believe in. I do have moments of anger, towards these circumstances I find myself in, but mostly the theme of my grief seems to be confusion. I am no Biblical scholar but I think Job was confused in all his affliction too. I think there were moments on his journey where he felt so utterly confused and he cried out to God. He didn't hide his bitter tears or his confusion. I can't hide mine either, at least not from the God who knows me.

When you are grieving, people try to be helpful in their loving advice to you, and like Job's friends, sometimes those words can cut deep to the core of your wound and confuse you even more. In reading through Job again, I read that his friends speculate that he or his children must have done something to deserve all this calamity on their lives. How hurtful those words must have been to Job's hurting heart in those moments. Oh some days I feel like Job, I feel like I carry a sign that says pity me, and rejoice that you are not afflicted as I am afflicted. I feel like the outcast, the forgotten, the leper.  I tend to overthink everything and add to my confusion, its a lose, lose situation it seems.

My picture of grief looks something like this: I call it the American Dream, grief version. My baby has died of a pretty rare birth defect, heart defect, congenital heart defect, to be exact. HLHS is its official name.  During the almost 4 months of her life, my mom was killed in a tragic motorcycle accident. After a year of grieving, we were told in September of 2013 that our dad had a mass in his lung, later to be told it is aggresive and he has months to live even with treatment. When this news comes, there is pain yet to work through in my relationship with my dad. He comes to Texas to live between my house and his brother's. I have a pregnancy and then a brand new baby boy when he comes a few weeks into December. I am floundering, I am struggling with this role I have been thrust into,  of loving, supportive, (confused as heck) daughter to my dad dying of cancer. Mom of 4, 3 to the world outside and any well meaning onlookers at the grocery store, or the restaurant, or the cancer patient waiting room.

 Come August of 2014 and my dad has died. We have tried in these past two and a half years to honor all this pain. To honor our Koralyn and my mom and now my dad. It all feels so small to me though. This grieving girl, with so much death in her life, wants something more tangible for all this grief. Something more measurable, more obvious, more BIG. So I sit and struggle with my confusion and my American dream of grief. The one the blogs and facebook and The Today Show tell you about.  Why am I still stuck in this small place with my big grief and my ashes and my sackcloth? Where is my mountain peak? When will I leave this valley, this valley of the shadow of death I am stuck in. Where is my book of triumphs? Where is my foundation to benefit those who suffer? Where is my beauty for ashes? This is what I keep asking, what I keep struggling with. So many parents are handed a death certificate and they feel the weight of that thin sheet of paper and they go out and take that pain and make it usable. Make it big. Most days I still feel so small, so stuck, so confused. What is all this death and grief supposed to add up to, is what I keep asking God. In my mundane days of mothering, keeping a home and a family and being a wife, I struggle with all this small and want to exchange it for something big. Like a consolation prize for my grief. This is who I am though. I want everything to fit in a list or in a box. I want everthing to make sense and have a reason and an outcome. I want recognition for all my hard work. I want to yell how unfair it all is.

I have been considering the painful fact that maybe God doesn't want  to make big beauty out of my ashes. Maybe he isn't asking me to start a foundation, or adopt an orphan, or write a best selling book about my journey (which, being who I am, I would like any number of those things to fill these gaps that have been left in all this grief. To help make it make more sense in my hurting heart and my confused head) Maybe my beauty for ashes is in all these seemingly small things I do to honor my God, my daughter,  my mom and dad. It is in this gift of motherhood and mundane. In Ashers antics and Asa's jokes and Abrams laugh. In the small kindness we show to those who are hurting, and in the kindness that continues to be shown to us.

 Last night God used a sweet little red headed girl to show me that the small things can be big, if only to one person. I have been hurting the last couple of days, missing my mom and my sweet Koralyn. Missing the life I would have had being Koralyn's mom, fighting for her and loving her. Being a part of a team of people to make sure she thrives and gets the best care. Missing being a part of the group of parents with children with chds. A group no one wants membership to, but hindsight being 20/20, a group that feels more welcoming and purposeful then this group called Parents of Dead Children.
Last night I didn't want to go through the motions and go be out with people. I wanted to retreat in my grief and have a quiet and introspective moment (which with 3 small boys is impossible unless they leave or I do) Being the person that I am, and a mom to three living children I don't want to disappoint, I trudged through, put on my best I am strong and happy face, and made my way to dinner and then church.

Last week on Wednesday night, I had brought some of the cute Koralyn jars to the classroom I work in every week. The girls all wondered out loud what they were for and talked about how cute they were. So I told them I was collecting tabs from cans for The Ronald Mcdonald House. One girl got very excited and talked about how she already saves the tabs at her house for her Uncle. She told me, very excitedly that she would start saving half for me and bring me some! By this Wednesday, I had forgotten the conversation. When I walked into the classroom last night, this sweet girl, who I had previously taught when she was in first grade, very sweetly and excitedly came up to me with a small ziploc bag holding several red tabs. My heart melted at her kindness. To think she remembered and made the effort to save them and then bring them to me. I hugged her and let her know how grateful I was that she remembered. I don't think she will ever know though, what that small ziploc bag of tabs did for me in my grief. It just meant so much to have one sweet little girl remember my cause and make an effort for it.  I felt like God was saying, see Kenda, small things, small kindnesses do matter. They matter to you, they matter to me, they matter to all the hurting and broken people in the world. What seems small to some, may be life giving to the one person who needs it.

 I have learned in this grief journey over the past two and a half years that grieving hearts want so badly to be remembered. Those that grieve want to know their grief matters, they want to know it means something and has purpose. Grievers, want to know they aren't alone, that there grief is not wasted. They don't want to be told the time limit is up and they should be over it by now. They want to be met on the lonely road of grief. They want someone, maybe several someones, to take their hand and tell them; its okay to hurt and its okay to be scared and to not have all the answers or have completed all the steps. Because the truth is, we never get over it, we will not, cannot, be the same people we were before. We have to become new and different, but no less meaningful and beautiful people. Don't cringe and turn away from our wounds and our scars. We know you are curious, we would love to tell you how these wounds and scars, while painful have made our souls more beautiful. So next time you have an opportunity to meet someone on the lonely road of grief, even if briefly, take that opportunity. What seems small or insignificant to you or someone else may mean the world to a hurting, grieving person. To a hurting, grieving, world.

My God tells me that those who mourn are blessed. He tells me to take heart and not become discouraged. He tells me to count my suffering Joy. He shows me that he takes what is lowly and nothing to the world and he lifts it up and makes it beautiful. I trust and hope in him. This Jesus who loved the lost, the outcasts, the whores, the lepers and tax collectors. The sick and dying of this world. He got down and dirty with the grief stricken. He met them on the lonely dusty road of grief. The road after his death, where those that followed him thought it was all for naught, they thought their grief and strife was for nothing, that they were forsaken. He came down and walked with them, he listened to their hurts as they told him the story, they didn't know it was him, not for awhile, not on that dusty road anyway.  He told them they mattered, their pain mattered that all this grief and ugly mattered. He wept with the hurting next to the grave of their loved one. I have hope that he hears me too, and walks beside me in my grief, and in all my ugliness as well. He listens as I cry out in my pain and wonder in confusion at this path, this plan of his, this story. He calls us to keep going and to bind up one anothers wounds, whenever we encounter the hurting along our path. He calls us to compassion and service. For some, that may look big, for others, it may be small things. A wise woman, a fellow Christ follower once said, "Not all of us can do great things. But we can do small things with great love." Mother Teresa

 I want to continue on this dusty, broken, grief stricken path, to do as many small things with great love as I can muster. For it is all this great love that has been shown to me in the last two and a half years that has kept me going. Never underestimate the power of your small deeds my friends. Because we all matter and in the eyes of God, none of us are small, we are all magnificent. Its His stage after all, and I have been told that Earth has no sorrow that Heaven can't heal.