Choosing To Be Thankful

What happens when God doesn't answer the prayers of your heart the way you thought he should, the way everyone thought he would? When apparently his glory will not come through this beautiful babys life, but only in her death. What do you do when the lights go down and you don't have your baby to hold up and give thanks for?

I have been asking and answering that question since July 25, 2012. Its a hard question to ask and an even harder one to give an answer for. It is pain and grief and struggle. It is lonely and ugly and truth poured out when you don't want it and didn't ask for it and have a hard time swallowing it. What happens when you literally have to live your faith out in the hardest most desolate place possible for you?

Here is an account of what happens

Days are hard, days hurt. Things that a year ago wouldn't bother you now break your heart. Pregnant bellies and sweet baby girls in pink, moms and daughters, oh moms and daughters point out the fact that now, you have neither. You look back at a year ago when you were pregnant with a daughter and your heart was pregnant with hope for her and the situation and you had your mom to talk to and now its all gone, all of it. Where do you go from this place? Up or down or sideways? I have found that you just go, you just keep going, you breathe and you hurt and you feel and you once again plead with God to help you, to redeem this situation, to give you faith when yours is weak or not there at all.

For all of you reading this, July seems far gone, but for me, it is yesterday, it is an hour ago, it is fresh and it burns and it hurts. Some days I look at the calendar and wonder how it could almost be Christmas, how my girl would have been almost 8 months old and my mom would have turned 55 in September and I think how could this be? How is time still passing at break neck speed and it all feels so fresh and painful. Some days time is my friend and I look and take in a deep breath and let it out with thanks to God for bringing me this far from those two days when I lost so much. Other days I want to scream out in anger and pain that those days are still so near and hurtful and dark and where is my justice and my reward and the redemption? On days when it seems everyone has forgotten and you feel alone and like your pain and thier suffering was all for naught. What do you do on the hard and ugly days when nothing comes easy? When nothing feels easy or good?

We all have two choices, with every single God given breath, we have two choices. To be thankful or to be angry. Yes there are feelings and ways of being in between these two I suppose but really in each moment of your life, you are either thankful or your not, right? On the days when traffic is lite and the kids behave and you make it to work on time you are thankful for your good fortune. On days when traffic is a beast and the kids don't listen to a word you say and your forty five minutes late and disgruntled and stressed, in that moment you probably don't feel so thankful for your good fortune. Here is the thing, the Bible, Gods word to us, his instructions tell us to be thankful in all things. IN ALL THINGS. "Rejoice always; pray without ceasing; in everything give thanks; for this is God's will for you in Christ Jesus." (1 Thessalonians 5:16-18)

 What!!! How can I be thankful that my sweet baby girl struggled and suffered and fought and died anyway? How can I be thankful that one sunny Sunday afternoon my mom got on the back of a Harley and never went home that night but instead to a body bag in a morgue? Was I feeling thankful in the moment when they woke my girl from sedation to try and make her sats go up and she cried the tiniest of cries and her eyes looked hollow, and I think I knew it was the beginning of the end in that very moment, the shadow of death was there in her eyes. Was I  thankful when I came home after walking out of that hospital without my girl and finally taking off my black jacket to reveal Koralyns blood staining my sky blue shirt, puddles of her blood where I held her close knowing I would never hold her alive again, the blood that came from all the wounds of them trying to fix her. According to my faith I am supposed to thank our Lord for all these moments that play in my head as I try to process my grief and come to a place of acceptance and gratitude.

Here is the thing, this isn't easy. Its not easy to hear and read about other families who have a prayer answered in the way they thought it would be. To hear about families that have a time in a deep dark place and then God brings them out of it and everyone cheers, and life is good and "they all live happily ever after." Some days jealousy and bitterness overtake my soul and I have to choose to come out of it. I have to literally decide whether to let the bitterness and questions and unbelief overtake me or whether I take up my cross and follow him. "Then he said to them all: "whoever wants to be my disciple must deny themselves and take up their cross daily and follow me." (Luke 9:23) Some days it feels like it would be easier to throw down the cross he has given me and run the other way, embracing my anger and my questions and the worlds way of thinking that I have been unfairly treated in this game of life. Because looking around this cross seems a hell of a lot bigger and heavier then some of the others I see people carrying. I suppose that is why in his infinite wisdom he told us not to look around and be jealous of others, for we really don't know the weight of their crosses either. So this is where true Faith has to come in, this is where the rubber meets the road, where things get real so to speak. Because when things are good and your prayers are answered to your standards and your cross is lite and there isn't much self denial having to take place faith is easy. But, when nothing seems right and you wonder what God could possibly be thinking and your cross and denying yourself includes losing your mom and your baby within a few months time, thats when faith either stands or crumbles.


So my choice is to keep trying, I will still stumble, I will still have sad and lonely and bitter moments but I choose to believe God knows best, and what he says is true and Koralyn was a gift and my moms death was not in vain. I am a work in progress friends, but I am making this choice every chance I get, and I seem to be getting a chance every single morning.  He is refining me and showing me things I never saw before all of this. On the days when I don't want to pick up my cross and deny myself I take a deep breath and slowly look around and thank God for all I have, all I am learning, all I am becoming, or better yet all he is becoming to me and in me.  I choose to believe in Gods promise that he works all things for the good of those who love and trust in him. Even though it hurts now and seems so confusing and dark some days I have to focus on his light, his purpose and it is then that I can thank him, yes for all of it. The good and the pain and the memories of awful things that will never leave me now. Because I believe that one day it will all be set right, it will all be made clear. One day I will see and embrace my Jesus and my sweet Koralyn and my mom. They will say see, it was worth it, wasn't it Kenda. I choose Joy now, maybe not happiness all the time but Joy in knowing it will all be worth it and I want to keep fighting the good fight and I don't want to waste these minutes I have left. I still have SO MUCH to be thankful for, even on my worst days God still loves me.

I see the gift of Christmas more clearly now then I did a year ago. The fact that God sent his ONLY son to DIE a horrible death for us, hits closer to home and becomes more real to me now that I have had to hand my daughter back to him. The death of Jesus seems less abstract then it did before. To be Mary or to be God and watch your child endure such a wicked death of shame had to be excruciating; not only to watch but choose willingly to allow it to happen. Astonishing.

"Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness, I say to myself, "The Lord is my portion; therefore I will wait for him." The Lord is good to those whose hope is in him, to the one who seeks him; it is good to wait quietly for the salvation of the Lord."  Lamentations 3:22-26

6 months

If you would have told me six months ago that today I would be sitting in a Starbucks between a business man and a student, blogging about Koralyns half birthday and how she is not here to celebrate with us, and that in the midst of it, I would also lose my grandma and my mom I would probably tell you there is no way I will be able to make it through. No way. But, here I am, sitting here with my pumpkin spice latte worrying about how many carbs and calories it will add to my diet since I am still trying to lose the last ten pounds of baby weight from carrying that precious life that was so brief.

I think about what I would be doing today, taking her to get her 6 month photos taken. That is if she were doing well enough to make a trip like that.  What would she look like, who would she be, what would she be doing today. Rolling over, babbling, playing with rattles and sweet little baby toys? How proud I would be to have her on my arm, how much fun I would have dressing her in pretty pink clothes!

Yet she is not here, and it sucks and it hurts and there is a hole. Yet I am surviving, we as a family, we are surviving. Our pain is deeper then ever before and we find that our joy is deeper too. I feel like I have walked through and experienced so much hell in the past year and I have survived, we are still surviving. Thats amazing to me, I am so thankful that not only am I surviving but I can still experience joy and peace in the midst of this great turmoil. I feel like I know a secret some people never get to know in their lifetime. My faith has allowed me to keep breathing and even have hope that its all going to be okay. Even though I have lost 3 generations of my family in a six month period I still have hope, I am still walking and breathing and living, some days barely, and somedays my Joy overflows. I look at my boys and my husband and all that I have, and my hope to one day see my grandma and my mom and Koralyn again; and I think how can I be burdened and despondent for too long? No, I know these women and sweet Koralyn want me to get up and keep living while there is life left to be had! I feel even more so then before that God has me here for a purpose and that I need to keep trying even on the really hard days when I don't want to. I refuse to just curl up and succumb to my grief!

I think back to the Monday morning of Koralyns last and fatal crisis. I was in the shower in the PICU thinking about how wonderful everything was going, how maybe now it would be an easier road for Koralyn and maybe, just maybe we would be out of the PICU by Friday and home within a week or two! I was happy, really happy for the first time probably since Koralyn was born. Then I walked back into our corner and Koralyn's monitors were beeping and showing poor numbers and the nurses seemed concerned. I sat my stuff down from my shower and went to the end of her bed and sat out of the way in one of the tall rolling chairs. There I would sit for the next 3 hours. There I would watch two nurses and one doctor, then four nurses and two doctors, then three docs and countless others try to figure out why Koralyns sats were dropping so low. I would sit calmly and quietly with nurses ever so slightly looking my way every once in awhile to see if I was surviving and not going to pass out or freak out. I would text my sweet husband and tell him there was yet another crisis, when we thought we were past them finally. Then I would sit as my girl completely stopped breathing and her monitors beeped and raged and I calmly text Amos to come now she is not breathing at all. During this three hour period I got up every once in awhile when I saw an opening and I would touch Koralyn and kiss her hand and tell her to hold on that we loved her that we were all praying for her. I sat in that tall black chair and silently begged God to save her, breath life into her, make her thrive and grow and live! Over and over I just simply asked him to help, help us Lord, help her, help me, help these doctors. HELP. At one point on Monday night I got down on my knees in the PICU bathroom and asked God that if it was his will, please work a miracle and let her live.

When Amos walked in and they had Koralyn somewhat stable one of the doctors came over and said here is Kenda she has been sitting here watching all the turmoil unfold, battling with us. They still didn't know what was wrong, they had tried to wake her with a concotion of drugs thinking maybe the problem was just that she was too sedated. They had moved and tilted her thinking her airway was closed or maybe a lung had collapsed, they suctioned her mouth and nose over and over in hopes that maybe she was just clogged up like all kids get sometimes. Nothing was working. They called in respiratory and sono and anyone who would be able to help.

Eventually we had to leave while they worked on  her and doctor came out into the waiting room and told us maybe she did just have a little cold and this was all a silly mess and by tomorrow her sats and everything would be back up and we could say we survived another crisis. Our first of many dashed hopes to come...

The next morning things weren't improving so our girl needed to be taken back to the cath lab to see what exactly was going on. Bad news came then, Koralyn had two clots one massive clot in her little heart that shouldn't even be there considering that part of the heart hadn't been worked on. It was going to take a miracle for these clots to break apart and dissolve but hey we had an army of people praying for her and some of the best doctors around fighting for her, we had hope we could walk away from all of this with our girl talking for years to come about what a miracle she was! It was not to be.

Things progressed and nothing that was tried worked. Her surgeon was held up in his 2nd 12 hour procedure on the same little girl who was taken out of surgery and then had to be rushed back in. Our job now was to wait, more waiting, the thing we had been doing since December 2011 when Koralyn was first diagnosed before she was ever born. At one point the blood specialist came in and said the meds they were giving her to try and break up the clots usually worked very well on adults. Of course the clots were much smaller then Koralyns. I said to him; so basically your saying its usually used to swim across a pool and we are hoping it will take us across an ocean. He sadly said yes thats about right. I just remember thinking if Koralyn lives, this will be one hell of a story to tell, one hell of a miracle!

Our friends were there now, Stacie and Meredith and of course Pastor Daniel on his birthday no less. I remember standing on one side of her bed and looking down to her catheter ba and knowing it wasn't a good sign that she wasn't eliminating any waste, I knew the toxins were building in her bloodstream. I looked at the sweet nurse and asked if in fact this was a bad sign, with tears in her eyes she said yes. I then asked how long before we knew there would be no hope for Koralyns survival, she said that wasn't for her to say, it depended on a lot of things. It was a that moment that a song a hymn to be exact popped into my head. I am not sure why, I hadn't heard the song in quite sometime, it was never one of my favorites. Looking down at my dying baby the lines kept playing in my head and comforting my wounded mama heart.

 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 I knew, I feel like I knew the whole time since her initial diagnosis in the womb that God was giving us Koralyn for only a short sweet time in our lives. I can see now he was preparing me. To me this song suddenly coming into my head and my heart was God telling me even though he was taking Koralyn, I could indeed go on and face another day. To me this simple song replaying in my mind over and over for the next several hours was a gift from God. The Holy Spirit working in my life, helping me to survive these horrific moments of literally watching my baby die.

I see so many gifts in the midst of the hell that is losing a child in a tragic way. Our pastor who held vigil with us in that tiny room waking in the wee hours of the morning to every footstep that passed that door. waiting to hear if the surgeons attempts to remove the clots were working. Sitting and bearing with us the news that there was no more they could do for our sweet baby. My girlfriends who literally held me up and walked me out of that now sacred place. Keri and Stacie and all those precious women who took just a chunk of my pain and weeped with me. I could see the agony on thier faces and will never forget what that meant to me in those first awful moments of grief. My sister and my aunt who hopped on the first flight and helped me get out of my blood stained shirt to take a shower. My Aunt Ann knowing full well the pain of burying not only a baby but a cancer stricken husband. The women who cleaned and filled my home with food. Such precious souls I will be forever greatful to.

At Koralyns memorial, I requested two hymns to be sung for her;  It is Well and of course, Because He Lives. Jeff did a wonderful job singing those most precious songs for us. Sitting here without my six month old baby girl I can say with honesty and hope, and of course pain too; that it is indeed well with my soul, because He lives.

 

In no way am I saying I understand it all. I have angry days and sad days and days when I ask God why he didn't answer my prayer the way I wanted him to. Why he couldn't have healed Koralyn and glorified himself through her life instead of her death. This is when faith comes in and you say, okay God, even though you didn't give me, and everyone else what we were praying for, we will still trust you, we will still hope in you. We know you have a plan and it is for our good in the end.

 

"Though the fig tree does not bud and there are no grapes on the vines, though the olive crop fails and the fields produce no food, though there are no sheep in the pen and no cattle in the stalls, yet I will rejoice in the Lord, I will be joyful in God my Savior. The sovereign Lord is my strength; He makes my feet like the feet of a deer, he enables me to go on the heights." Habakkuk 3:17-19

 

 

Rewind

I keep replaying certain days and moments in my head lately, part of the grieving process I am sure. I have so been missing my sweet Koralyn and my mom as well these last few days. I would like to get some of my replayed memories out, so here it goes.

I remember it like it was yesterday, it was not long ago. A Sunday the 20th to be exact, two days before my 30th birthday, a milestone birthday. Anyone who really knows me, knows birthdays are important to me, I love them, my own and everyone elses too! I love to celebrate and decorate and have a blast. I had opened a gift from my mom the night before that of course said, "do not open until your birthday." I didn't follow my moms directions and opened my gift early. It was a book, a daily devotional to be exact "Jesus Calling." Oh how very glad I am that I opened my gift early!

We had just finished dinner at the Ronald Mcdonald House, Italian, cooked by my wonderful friends, Cyndi, Stephanie, Doug, and Jennifer. We had stayed a little longer than planned, talking and eating and feeling blessed to have such a wonderful church family. We finally pulled ourselves away and gathered the boys things to go back home with Amos for the week. Walking along the sidewalk outside the old clinic building, I picked up my phone and realized I had missed several calls from my family members. I said to Amos who was walking ahead of me with Asher on his shoulders and Asa at his side carrying all their things "uh oh, something must be wrong everyone is calling me." The first person that popped into my head was my grandmother, Gran as we call her. I thought maybe she was sick, or hurt, or worse. I called my sister and immediatly heard her wailing, my heart leaped in my chest and I then assumed it was one of my nephews, Jack or Tyler. I thought oh no, one of them has been seriously hurt or maybe even killed. My sister through her sobs was telling me she and Jeff and Larae were at the hospital and something terrible had happened. I kept asking her what and she just kept telling me its bad Kenda, its so bad. Finally, on shaky knees I yelled at her and demanded she tell me what was going on. She cried more and said it was mom, Kenda, its mom. She blurted out that mom was in an accident and she was dead, dead Kenda, mom is dead. I laughed one hard laugh from my gut and said no! At first I literally thought it was a joke, that my sister and my mom were playing a joke on me. By this time Amos who was standing at the end of the sidewalk waiting to cross the street, figured out something bad was happening, I had stopped and was pacing back and forth by some stairs leading into the old clinic building. I will forever remember that sidewalk, where we were standing, what was said, what was felt in those first moments of getting life altering, life shattering news.

I didn't know where to go, what to say, I remembering saying no, over and over again, my sister saying yes over and over again and sobbing lots of sobbing. I remember asking my sister what they were doing, if she was sure, if she had actually seen my mom, what were her plans. Then I was so confused at first I started walking towards the hospital but realized I wasn't going to be able to walk into that building at this moment, so I told Amos we needed to go back to the RMH. As I was walking up the walkway to the front door of RMH I fell into the arms of my friend Stephanie. It was by God's grace that as we were walking back in, all my friends who were there that night were walking out. I truly believe God placed them there to help get us through those first moments when you can't breath or move or think. Stephanie immediately thought something had happened to Koralyn and asked "what happened to the baby." I said its not Koralyn, its my mom, my mom is dead, she was in an accident. I was trembling clutching Stephanie for dear life as Amos stood behind us. Eventually the group lead me inside to sit in the foyer of RMH as I sobbed, at this point Asa was scared and saying his tummy hurt and Amos was confused. I remember Cyndi getting on her knees in front of me and talking me through those first moments. Telling me I could do this, I had to for my husband and my boys, that this would be the hardest thing I ever had to do (that is other then give my child back to the one who gave her a short 2 months later) but that I could, I would do it. I would get through it, it would be hard and awful and ugly but with God and my family I could do it. Again Gods grace, he placed those 4 precious souls there that night to help me, Cyndi having experienced the untimely death of her own mother a few years earlier. I look back and think how amazing it is, the way God works, even in the midst of our worst nightmares, he is there carrying us.

The next few hours are a blur, I know I called my dad and Clint I talked calmly to Jeff about getting things started for my moms funeral and me getting out to New Mexico within the next couple of days. I tried again to talk to my sister, but I could not understand her words through her pain soaked sobs. Amos decided to stay at RMH in our room with the boys and I eventually headed back over to the hospital to see my sweet Koralyn, to hold her and love her and break the news to her nurse, so that she could then break the news to everyone else. While walking back over alone I called my friends, Stacie and Amanda, I needed them to grieve with me, to know my big awful secret. They two thougt at first that something had happened to Koralyn. I guess we all think our mothers will always be around, that we won't have to bury them until they, and we are old and gray. Some days it still seems unreal that my mom, the one who raised me, who was my security and comfort for so long, is gone. No longer here to talk, or hear my worries or complaints or funny stories about my boys. No longer here to call and ask me what I had for dinner, like only a mother would.

I went to Koralyns room in the corner of the NICU and told the nurse standing at the end of Koralyns crib that my mother had just been killed in a motorcycle accident. I remember loving on Koralyn and then going to the chapel down the hall, with the big stain glass of Noahs Ark. Sitting in the back pew by the window and calling my moms phone, willing her to pick up, tell me this was all a bad joke or a dream, telling me everything was going to be okay. I remember crying into her voicemail that I was sorry and I loved her and I wanted her to pick up, just pick up the phone mom. She didn't of course.

Sweet Amber came to sit with me late that night, in Koralyns room, she loved me and talked to me about her husbands big plans to honor God and his mom, who had recently passed away due to cancer. Somehow, I eventually made it back to our room on the second floor of RMH, where my sweet boys slept peacefully, and my husband met me at the door with worried eyes. I laid next to him and cried and eventually fell asleep. waking the next morning confused and then quickly struck with the realization that my mom, my 55 year old mom was no longer going to call me on my cell at 8:00am to ask me how our sweet Koralyn was doing.

The next morning I remember once again walking into Koralyns room and seeing sweet nurse Debbie standing there with Koralyn. She looked at me with kind and knowing eyes and gave me a hug. She told me she was proud of me and that I would be all right. You see, She was the most perfect person to take this 12 hour shift with us. She had lost her sweet 17 year old son in an auto accident and then her husband to cancer a year later. She knew my grief and it was such a blessing and a comfort to have her there with us. I will be forever greatful to her and to God for placing her there. Amazing woman for sure!

On the plane ride to New Mexico I sat down in one of the last rows with a window seat, realizing I would need to pump during the flight to keep my milk supply going. Two nice women sat down next to me. The older one nearest to me was so sweet and kind and helped me get my cover up over my head and everything situated, she talked about her daughters having to do the same thing for their children. Never asking questions about where my baby or rest of my family were. She and her daughter sitting next to me told me about how they were on a girls trip and were headed to meet the other sister/daughter in Seattle for a special week, just mother and daughters. I sat there thinking how ironic it all was.I wanted to blurt out that I was leaving my sick baby in the nicu to go bury my dead mom in the ground but didn't want to crush their happy spirit or ruin their trip with my sad story, so I smiled and said how nice it was. I left the flight feeling happy I hadn't ruined their fun and realizing I wasn't in Albuquerque to visit my mom but to plan her funeral and carry it out. I walked through the big revolving doors to where everyone stands to wait and at first I didn't see my sister but a women standing with her back to me, short red hair done just right and I thought to myself, oh,theres mom,
then my sister came into view and cold hard reality punched me in the gut.

Looking back at these first dark and awful days after my mom died, I see the hurt and pain and ugliness of it all, but I can also see Gods amazing mercy and grace in the people that walked alongside me, sometimes carrying me. I can say with certainty that God is still good, he is still my God and he is ever gracious and ever loving and he shows us, we just have to be open to seeing him in it.

"It is hard to have patience with people who say "death doesn't matter." There is death. And whatever IS matters. And whatever happens has consequences, and it, and they are irrevocable and irreversible. You might as well say that birth doesn't matter." C.S. Lewis

We can experience joy in adverse circumstances by holding God's benefits in such esteem that the recognition of them and meditation upon them shall overcome all sorrow." John Calvin

On Grief

Grief is a nasty thing. Its sneaky, like a thief in the night, it catches you off guard and knocks the wind out of you, dashes your hopes, makes you fear. Grief.

Since being home I am struck by the fact that things are much like before I left for the 15 weeks I was missing from my home, being a wife and a mom to my boys, living in my house, sleeping in my bed. The lost summer, as I like to call it. Of course there are differences, my kids got a little taller, a little older, maybe a little less innocent. My belly is no longer swollen with life as it was before, my mom no longer calls in the mornings before breakfast and in the evenings before dinner. From the outside looking in, you would never know we just went through hell and back again. The tunnel I wanted so badly to get out of, spit me harshly back into the glaring, hot, unforgiving sun and I am blinded now by that light I wanted to see, stumbling around, trying to regain my sight, get my bearings, figure out this new strange and yet eerily simliar land to the one I was in before I entered the tunnel.

Many people have compared the battle I just went through to the one of a soldier, and now here I am. I survived and have been brought back to my homeland. Yet I am forever changed, forever scared by what I have seen, and tasted and been through. When a soldier comes home, people expect them to be so happy and thankful and just get back into their lives and yet if we look at statistics that is rarely ever the case. So many times the soldier has trouble finding his balance, just getting back to "normal" life. Because of what he has witnessed, he will never be the same again, and he tries hard to reconcile his "new" old life with the one he had before he left and the one he lived while fighting his battle. Its hard and ugly and lonely. Grief is the loneliest road you will ever walk, no matter how many people you have around you, at some point you are left alone with  your grief and you have to find a way through it or drown in the waves that seem to overtake you every time your head reaches above water. Along with the grief comes massive guilt. You see, he wants to just get back to normal living but when he tries and succeeds, the guilt knocks and says, "how dare you have a happy thought, a smile, a moment of excitement anything good." The thoughts of what has been lost, the people that are no longer able to enjoy life overwhelms him and here comes another wave.

I am experiencing a lot of that guilt, I have moments of happiness, where I think to myself, wow, things are just like before and here I am at home again. Like I have finally come out of slumber and realized that it was all a bad dream. Having littles its hard to not go on and have to get back in the game, they need, and want and expect. So much feels the same and yet on the inside I am screaming, NO, NO, NO, Koralyn was here, she was real, she was worthy, I have the scars, both physical and emotional to show for her life. We all do, the boys ask a lot of questions that we try to answer to the best of our ability. There is a constant ache in my heart, everywhere I go I see and think about Koralyn. Every store with little girls clothes, every pregnant mama, her belly full of promise and life. Every baby stroller and highchair, the baby section in the grocery store, the Ronald Mcdonald House donation flyers at the mattress store and in the drive thru at Mcdonalds. Grief stalks you, it becomes your invisible partner, shadowing you wherever you turn. You look out and see all these people and you wonder do they know? Can they tell? You want them to know, you want them to know you loved this precious life and now she is gone and it hurts and it sucks and life is hard. You want them to say she mattered, she was and is loved, her life was  not wasted. You want to tell them about her smile and the way she kicked and got excited when you talked to her.  The way she felt in your arms, what a fighter she was, what a blessing she was. How something is missing and your heart will never be the same.

Along with the grief of Koralyn comes the grief of losing my mom. So evident when the phone no longer rings in the mornings and evenings. So evident when I am sick or the kids are sick and she doesn't call several times to check on us. Many times I have caught myself thinking about when she will call, or that I need to call her, then it hits me in the gut that she won't be calling. A hole, a constant hole. Even though my mom and I have lived so far apart for the last almost 8 years she was a bigger part of my life then I realized. When a daughter loses a mother she loses a piece of her identity. So much of what happened in my life, I told my mom about, related it to her, experienced it through telling her about it. Even when you are grown, you want your mom to be proud of you, love you and know you are doing your best. So many times lately I have thought about how things are a little less sweet or fun or colorful because I can't tell her about it anymore. Part of me just wants my mom, you never lose the need for your mom, I know that now. The morning of Koralyn's funeral my Mom was surely missed, the realization that she was no longer here was cold and real.When I realized she would have been taking care of us, making sure my kids were dressed and fed even through her grief she still woudl have been taking care of me in mine, and while my Aunt and Sister were there, nothing can replace your mom. This is both heartbreaking and so wonderful to know as a mom myself, if you do your job right you will be loved and missed, and as mothers, don't we all want to know we are needed and appreciated. My moms missed presence is a testament to the kind of mom she was, she did well, she did her job.

In this day and age we aren't allowed to grieve for long, we are supposed to get back up and pretend that things are okay and be tough and go on. I always thought it was so funny in Gone With The Wind when Scarlett is so tired of wearing her grief clothes over the death or her husband. I only wish we still followed these practices so that people knew to be kind and patient and loving towards you, you just went through a battle and lost someone near and dear to you. I wonder, who decided to do away with all these rituals that helped you and the community around you to heal and acknowledge and grieve? It is so helpful and good, when people acknowledge your grief, your loss, your hurt. I believe God made us to meet each other in our grief, after all Jesus was called a man of sorrows, he knew grief didn't he. He met Mary and Martha in their grief and wept with them.  I want to say to all who have met us in our grief, thank you, you have made a difference in our lives. We love you and know you love us and we are so thankful for you. To all who know someone grieving, meet them in their grief and help carry them, if only for a day or an hour, you won't regret it and they will be forever greatful.

This post might seem crazy, it was written over several 10 minute periods at the Mcdonalds play area, while my boys played. I am posting it now, because I want to and have more to say in other posts that are still in my head waiting to come out. Hope it makes sense!

Time

We are still here at Cook Childrens Medical Center in Ft. Worth. I am currently sitting on my couch in our little corner of the PICU. The noise around me is ever present and numbing. I hear oxygen blenders bubbling, like pots of boiling water. IV pumps beeping, babies in pain crying, the little girl across from us moaning and speaking in spanish to her dad. I don't think I have ever lost so much sleep or heard so much noise both, outwardly and inwardly in all my 30 years here on this earth. Most days I am more then a bit dazed and confused. When friends or family come to visit I often have to be reminded what I was just talking about. I get stories and details mixed up and probably more then once tell the same story to the same person several times over. This life our family is living is chaotic and confusing and riddled with being apart and seeing things no mom ever wants to see and hearing things no mom ever wants to hear. But its the moments of grace and glimpses of good and the rare times I can think clearly that keep me going.

As my mom always used to say, life isn't fair. As a little girl I would ask why of course, as an adult I say Amen to that!  After growing up and living this unfair life, I want to know why we are ever born with the thought that life should be fair. After all God tells us we will have many trials here on earth. Some of us stupidly think that somewhere, someone is living a perfect happy life with no trials or sadness or tight jeans and low self esteem and bullies etc. etc. I think this might be an American way of thinking, or at least a 1st world way of thinking. We have enough time to sit around and think about how the grass is greener on the other side of the fence. This is a miserable way to exist of course and if this is the attitude we carry around we seem to be a drain on everyone we meet. I have had my days and moments when I feel sorry for myself, for our family. I get mad and sad and ask God why me, why us, why our sweet baby? Its in these moments that I must think no one has it harder then we do, no one knows what this feels like, this is so unfair!! Like a child who wants candy in the checkout lane at the grocery store but doesn't get it and suddenly nothing in the world is right and nothing good has ever happened to them. (Despite the fact that they live in America, have a parent who loves them and transportation to the air conditioned store to buy an abundance of food and other goods a lot of people in the world can only dream of having) How is that for the grass being greener?

 These moments of sourness leave me bitter and cold and unthankful for what I do have. I usually realize that these feelings of why me are getting me nowhere and snap out of it. Sometimes, most times actually, it takes God lifting up my eyes and making me realize how silly I am. For pete's sake, I am at a Childrens hospital, where there is enough unfairness to go around. The kids with cancer that basically live here for a year undergoing treatments that kill everything but their will to live. The babies that die in the nicu, because they are too small or too sick to survive. The kids that come in changed forever because of an accident, or an almost fatal drowning, or shaken baby syndrome, which is sadly a common thing here. I see it in so many of these faces walking these halls, they are screaming in their own minds, this is so unfair, why me, why my baby? But I also see miracles happen and families with enough love and determination to survive this hell. People ask, why do bad things happen to good people? Its an age old question and an understandable one at that. I think this experience is helping me answer that question at least for myself.  Bad things happen to good people so that they can rise above, so that God's grace and glory can shine through. So that we can be reminded to do good, to press on, to keep loving and believing and having faith. So that the people around them, their family and friends and church family can shine the light for them in their dark tunnel, carry them. Be the hands and feet of Jesus, as many in the christian faith would say.

The moments of pity for myself and my situation are often followed by a realization that even in this loud and maddening place our family finds ourselves in, there is still good, there is still hope, there is enough love and kindness to carry us. For example, loving friends and family have now stepped forward for the past 3.5 months to watch my boys, to love them and care for them, to make their days as fun and lighthearted as possible. They help clean my house, they feed my kids and my husband, they give up their days and their hearts to help carry us. Just when I haven't gotten any sleep two kind friends step forward and treat us to a lovely hotel room with a comfy king size bed and black out curtains to aid in sleep! Just when we have paid the last bill we can possibly pay, a bunch of coal miners we have never  met and some we have, give their own hard earned money so that we can eat or get fuel or a hotel room close to the hospital to sleep. The list goes on, its as simple as another mom asking me how I am doing, giving me a hug, sharing a meal or a story with me. People driving across town to see us and share their experiences. Church family coming together to pray for our Koralyn and our family! So much to be thankful for even in this darkest scariest time in our lives.

Never before in my life have I seen Gods grace and love more then I do now. Never before have I needed it more.

Note: I wrote this last Sunday night the night before Koralyn had her crisis and stopped breathing. The night when everything was still going very well and it looked like one day soon we would get to bring our baby girl home. I will not go back and edit it as I just don't have the heart right now , I will  leave it the way it is because I still believe in what I wrote the night before it all came crashing down. My God is still the same God he was and is and ever will be. He is good and I am thankful. I want all of our friends family and church family to know how very thankful we are.  I think the last line is very appropriate and so very true, I left it this way because I thought I would add to it come Monday when I had slept some, turns out Monday and the days that followed were a bit crazy... The picture above is the last one I took of her before she had her crisis.

Mom

I have this little journal that I have been keeping while at the hospital. It is divided into sections. One for Thank yous I need to write, one for my pumping schedule, one for my to do list while here, and one for bible verses that are helping me and just nice thoughts. Awhile after being here, I started to use the last section to write notes about the nurses and doctors taking care of Koralyn.

 You see while here in the nicu for as long as we have been, you really get to know some of the people who take care of you. We spend 12 hour shifts with each nurse before getting a new one and they often come back several days in a row. You sit with them and talk as they take care of your child and a lot of them have opened up during our conversations. Show interest in someone and ask about their lives and their children and the floodgates usually open. Its heartwarming and an amazing experience to be honored with these peoples lives and stories.

  A common theme for a lot of these amazing people has been their own stories of hardship and heartbreak. I think God created special people to work in this special environment and to really have compassion and empathy a lot of these nurses and doctors have walked hard roads of their own. It makes them better at what they do, more caring, more patient, more kind to the frazzled parents of these sick and fragile children. I have always believed God gives us our trials to make us better people, we have to choose to become better instead of angry and bitter, but if we do we can bless other peoples lives and boy have I been blessed by these amazing people.

There is nurse Jaime whose son died in a car accident at age 18. Along with Nurse Debbie's son who also passed in the very same accident and then a year later she lost her husband to skin cancer. Then there is young nurse Stephanie, who while working here at Cook in the nicu has a 4 year old daughter at home and a 30 year old husband next door at Harris fighting cancer that is ravaging his body. There was also a sweet nurse in picu that has not one but two special needs children, one missing a limb and one with a rare lymphnode disorder that might cause him to lose his leg and maybe more. Nurse Vicki had a 26 year old son who died of complications from Muscular Dystrophy. One of the cardiac charge nurses whose husband died of Lou Gehrigs disease and has two small girls to raise at home now as a single mom. One of our main cardiac doctors lost one of his 9 month old twin sons to a rare brain disorder.

All of these stories were told to me from deep within these peoples hearts. While listening to them I could see the pain in their eyes and feel it from their souls. This is just within the nicu here at Cook Childrens, this doesn't include the sad stories that we have encountered over the the Ronald Mcdonald house or even on other floors of this hospital. Listening to these stories and seeing how these people could rise out of the ashes of their pain or live through it in the very moment was inspiring. I thought after hearing each one how easy we had it, how blessed I was to have my family, my baby, here getting help. I would look at the sentences in my little journal and be thankful and pray for those that were hurting. I admit that I was thankful too to not have quite such a tragic story. You know perspective, its all about perspective.

  I wrote down their stories for several reasons, one so that when they came around to take care of my sweet Koralyn I could remember and relate. Another reason was so I could keep things in perspective and be thankful that while we were in the nicu struggling things could always be worse; a count your blessings sort of thing. And third because one day I was going to get on this blog and write some inspiring post about all these amazing people and talk about how I had counted my blessings and learned so much from them. Then me and my family became one of the tragic stories in the sentences in my journal. Me, my mom died in a motorcycle accident on a sunny Sunday afternoon. My mom, a wife, a grandma, a young 55 year old woman. My mom, she died, suddenly, tragically. MY MOM, MY LIFE, ME, US, MY SISTER, OUR KIDS, HER FRIENDS.

It has been a blur and I want to tell the story but don't have the heart right now. I will say this, my mom was dearly loved and loved so many people herself. It showed, there are things I took for granted and things I didn't know about her. I am hurting, all who lost my mom are.

These are easily the worst days of my life; exhausting, confusing, sad, lonely. But I can still see God's grace and mercy in all of this. I see it in Koralyn's face, in the compassionate eyes of the doctors and nurses, in the tears of my friends, in my sister and family's love. I see it, I think my mom would want me to see it, and I know she would be looking for it. I am so greatful and humbled by all the love, prayers and support we have been given. Everyone my mom worked with and loved. My friends who were here the night I got the call from my sister. My pastor, who I will be forever greatful to for flying out to NM to perform my moms service. My best friend Annora who became my surrogate husband while Amos stayed in Ft. Worth with Koralyn. My sister. Too many to name.

These are dark days I am in the deepest darkest part of this tunnel, I can't see the light, but I know its there. Its always there.

 

"For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all." 2 Corinthians 4:17

"Since we consider and look not to the things which are seen, but to the things that are unseen; for the things that are seen are temporal ( brief and fleeting), but the things that are unseen are deathless and everlasting." 2 Corinthians 4:18 AMP

This Wild Ride.

There used to be a ride at Disneyland called Mr. Toads Wild Ride, it was based on the books and then the Disney movie that came after. As rides go, it was one of my least favorite as a child. It was bumpy and took many sharp turns, which threw you around the little car you were in, especially if you were on the smaller side. Around many of these turns things would pop up or jump out and make noise to make you jump and your blood pump extra hard in your chest. I would always feel my heart beating hard after that ride and never wanted to get on it again, of course everytime we went to Disneyland I somehow forgot or thought it would be better or maybe I was braver then before, so I would board the little car and take the ride again. This ride we have been on for the last almost three weeks feels a lot like Mr. Toads Wild Ride. My heart is beating hard and fast, my blood is pumping and there are sharp hard turns and scary things jumping out at us and yet this ride doesn't have an end for quite some time if ever. I am buckled in and white knuckling my way through, knowing after this morning we are in for the long haul.

Our sweet daughter Koralyn was born just like our two older sons. Delivered by an uncomplicated routine c-section. On April 9th 2012 at 11:44am. She weighed 6 pounds 11 ounces and was 18.5 inches long. She came out blue and crying much like our boys. And I was excited and thankful when I heard her cry and got to see her sweet face. Of course after she was out and cleaned things were nothing like they were with Asa and Asher. Daddy got to hold her for a few minutes as did I (as much as you can hold a baby when they are sewing you back together with a big paper sheet across your front). The the "team" told us it was time for them to take her, they put her in a little plastic box and wheeled her out of the room as Daddy followed close behind. I of course fell asleep as they continued to work on me and woke up in the recovery room, without my precious baby, knowing she was across the bridge being looked at and worked over by many doctors and nurses who had also been waiting for her arrival for months now. The next few days are a blur of being in my hospital room at the end of the hall at Harris and being wheeled through the tunnel to Cook Childrens to see my sweet daughter in her plastic box. We were told on Monday evening that she would have her first open heart surgery on Wednesday instead of Thursday.So on Tuesday the boys, my mom, and Amos's parents came to see Koralyn and wish her well on her journey. It was a surreal feeling wacthing my two strong boys look at their little sister through thick plastic. Asher seemed scared while Asa seemed unphased by it all and just excited to be here in this new place seeing his long awaited baby. Getting back to my room I welcomed my pain meds and hoped they would bring sleep, so I could escape the reality and gravity of what was coming in the morning.

Early Wednesday morning I was once again wheeled from my room over to Cook Childrens so we could say our goodbyes and prayers and watch our daughter being wheeled into the OR praying she would be wheeled out again alive and well. Dr. Tam her surgeon came out to talk to us and again explain what was going to take place and what the risks might be, while the nurses and techs were doing her two hour prep work getting her sedated and on bypass. Dr. Tam, being a kind man, but still a brillant heart surgeon at one point told us no matter how well he explains it we really have no idea what is actually taking place, we just wouldn't be able to wrap our minds around it unless we were in there watching, which of course is out of the question and would not be a welcome invitation even if given. We were told to go back to my room and wait for hourly calls and then our call to come back over to see her and hear the news of her surgery before she would be wheeled into picu. Luckily our gracious pastor Daniel Sweet and Cyndi King came to help us pass the hours talking about things outside of the hospital walls, even life as far away as India and Africa. It was a welcome and good distraction but every once in awhile I would think to myself how strange it was we were just sitting in my hospital room talking of such simple things while my baby was on bypass being cut open and worked on and stiched back together. Every time the phone rang, my heart jumped in fear of answering but with hope that the update would be a good one. Each time thankfully the update was indeed good, until hours later the call came to head back on over she would be wheeled out shortly after Dr. Tam came to speak with us about what had occured. Amos and I along with Daniel and Cyndi sat in the small cardiac waiting room awaiting the doctor. This was the same waiting room we had sat in twice before while I was still pregnant awaiting her fetal echos. Every person that passed by the window made my heart jump until finally Dr. Tam opened the door with a smile on his face and informed us the surgery had gone quite well and took less time then planned and our little girl was doing very good! I have never heard such sweeter words in all my life and we now happily waiting for Koralyn to be wheeled by. When she was It was a happy time and I was able to kiss her sweet swollen face and tell her how proud of her we were. The team transporting her to the picu all proudly mentioned how well she did and was doing and how she was in the top 1% that did awesome! All wonderful words so welcomed by two scared parents. We knew God had answered our prayers and been so gracious to make this first step a successful one.

The next 24 hours went very well, again we heard she was doing excellent and the doctors and nurses were so happy with her progress and just how stable she was staying. I thought myself, maybe we would be the parents of the miracle Hypoplast baby that did insanely well and had no issues or problems! Then Thursday evening sitting alone in my hospital bed while Amos was down getting some dinner my cell phone rang and I recognized the number as Cook Childrens. My heart went into my throat as I answered and heard the nurse say my baby had just had a pulmonary crisis, at the end of explaining I asked just how bad the situation was and the nurse answered that if it had lasted any longer she would be calling us over to say our goodbyes. I hung up and made my way out of my bed and into the bathroom to ready myself for my ride across the bridge as soon as Amos got back. He walked in carrying his pizza and cookie to me sobbing by the door trying to put my slippers on and telling him their was a problem. I have never had such a quick wheelchair ride in all my life!! We got to her bedside along with the many nurses and doctors with concerned looks upon their faces and gentle words of explanation. I didn't completely lose it until I saw our Pastor standing by the picu door, then once again I just started bawling! At this point we weren't sure if she was going to make it much longer and I was just dumbfounded and at a loss for how to breath or cope or live in this moment. I told Daniel and Amos and anyone else standing near that I didn't know how to do this, how am I supposed to do this, I knew in that moment that God has a plan and knew about this, giving us our sweet Koralyn for a reason but said I didn't feel up to the burden or the challenge of this new road we were on. How was I supposed to love this baby that might very well be dying at this very moment. After Daniel told me my only job was to love her, just love her, the nurses told me sweetly that I should go back to my room to get some rest and take care of myself and take my meds. In other words crazy lady, you look like hell go lay down!! That night Amos stayed in the picu with our sweet baby and gave me frequent updates as I laid in my bed pleading with God to help us, help us, that is the simple prayer I repeated all night long, everytime I woke up and cried and was scared I just asked for help, for all of us in our little family, that is all I could muster. Koralyn had a few more smaller episodes but by morning seemed more stable.

The next 10 days were spent in the picu with a few more highs and lows. After celebrating her vent being taken out, she went into SVT minutes later and stayed that way pretty much throughout that day, resisting strong meds and even pacing wires until finally she leveled out that evening after they brought the big guns of SVT meds out! We were so thankful after that day, that she became more stable and had several good days and nights in a row with just very minor issues. We happily "graduated" to the nicu on Monday night April 23rd, the same day Amos had his first day back at work! We were sent off down the hall by all the sweet picu nurses and doctors with congrats, and good lucks, and she has done so well despite her setbacks!! Since moving to the nicu she has continued to drop her oxygen saturation levels and has had to go back on oxygen. I was finally told this morning by Dr. Levy that they think this is due to a narrowing in the bottom of her shunt that was created during her first surgery.This is good and bad news, of course we would rather have no complications, but thankfully this is one they have seen before so it makes it "common." Also thankfully it can be repaired if need be, but not so great is the news that this repair can only be done by opening her back up since its on the bottom instead of the top of her shunt. Of course this would be a huge setback and that is the last thing we want for her. For now the plan is to watch and wait, if she can adjust to this and keep her sats up better on her own that will be great. Our goals are to slowly wean her off the oxygen she is on and eventually start feeding her from a bottle instead of the tube that is in her nose.If all of this happens we will see where we are at in three weeks and go from there. If she continues to drop her sats or gets worse or goes into crisis we will be doing a heart cath and probably be headed back to to OR opening her back up again. BUT, we will pray against this and hope and expect her situation to get better without more surgery at least until it is time for her 2nd. Unfortunately this means we are here for the long haul, which could mean weeks in the least and months or even until her 2nd surgery.

This ride is wild for sure, I have many emotions throughout each day. I am thankful for so many things, sad about several things, hopeful for many things. I miss my boys, my life, my house, my husband, but at the same time I am so thankful to be here with her, thankful for all the love, help, support, and prayers we have and continue to receive. I am most of all thankful in the knowledge that God made Koralyn and me and Amos and all the people who love us for this very time in our lives, he has a plan, he has a purpose he is good. On the hardest days this is what I hold onto, what I stand firm in, what gives me hope. I pray for many years with my sweet baby girl, that we will one day walk out of here back into the world not having to ever come back for more surgeries. That day is far off many years maybe, but I keep reminding myself this is a season in our lives, we can do it, we can do it. Just keep breathing and praying and hoping, we can do this. "So do not fear, for I am with you, do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous hand." Isaiah 41:10

If you could know.

How Many times have you been asked the question, if you could know the day you are going to die, would you choose to know? What would your answer be? I think most people, like me, would say heck no, of course I don't want to know. How differently would you live your life today, or tomorrow or next week, if you did know? How would you prepare? I think our lives, if we are doing it right, are just a series of little deaths to ourselves. Call it death or just change, but it is constantly occurring. When we grow up and move out, we give up the child within and become an adult, in a sense dying to our old self and becoming new. When we choose to get married, we give up or die to our singleness and become a couple. As Christians when we choose Jesus we die to our old self and are raised anew to walk with him, this scenario goes on and on in each of our lives.

I have been thinking about this scenario more and more as each day passes and we get closer to April 9th 2012. I stand by my answer of not wanting to know the day I will die even more then I did before. You see, in a way I feel like the birth of our daughter is going to be the death of me, of our life as we know it, of so much that we are used to. In a way this is a good thing, and in a way this is terrifying and sad.

If you think about it, every time a child is born into a family a little bit of the parent dies and as said, this is a good thing. If you didn't die to yourself there is no way you would get up during all hours of the night to feed this screaming sometimes stinky (but always precious) baby. You have to die to your utter selfishness to be a parent, for some this is easier then for others. Some of us go kicking and screaming all the way. As Christians, we are called daily to die to ourselves and take up the cross to follow our Jesus. I can attest that with each child, I have had to die a little more to myself to lovingly and patiently take care of my children. Mothering, real mothering is hard, gut wrenching at times. Until you are a mother you don't realize how incredibly self centered you are. There is nothing like a child to hold up a mirror and help you see yourself for who you really are, with all your inner blemishes and faults. As the saying goes, I was a good mother until I had children!! This might sound horrible to childless people, (which sometimes it is) but it can be beautiful, it can move you to be more, to be better, to try harder, to seek grace and goodness.

So as a christian, when I think about the upcoming death of my life as I know it, I think about what God is going to do, what he is going to show us, how he is going to change us for the better. When I think of these things, I am willing to die; but, then there is that ever human, ever self seeking part of me that is scared and angry and fighting against this change. As each day passes the panic wells up a little more, the fight rages on, the worries come.

I have read that the "interstage" period of Koralyns process is the hardest, scariest time for the families if HLHS kids. This is the time between the first and second surgeries, once we go home we will need to be extremely careful about germs and sickness. One infection, especially anything respiratory could kill our sweet Koralyn. This means drastically changing the way we live our lives now. No more church nursery, no more play dates or lunches out with friends, no more trips to target or Chuck E Cheese or the park or the mall play area. In other words no more distractions for Mommy or her kids. We love to get out of the house and spend time with our friends, it helps make the long days of toddlers a little more bearable, a little less dragging. We love adventures, traveling, exploring new things and new places. Once we bring Koralyn home, that will all have to stop for several months.

This time is going to be very hard on our entire family. Asa wakes up every morning and one of his first questions is where we are going and what we are doing and who we are going to see. He loves to get out and meet friends and have adventures. I fear these months will be the longest of my mothering life. Any mom knows after just a few days stuck in the house with preschoolers and toddlers, everyone starts going insane, most of all mommy! I fear the loneliness, pain, drudgery, isolation. I am having to tell myself that my strength will come, even if the days are long and hard and lonely, my strength will come, I am not alone. And when we all come out on the other side, we will all be stronger and closer and more aware of our blessings (and maybe not so dependent on outside entertainment and our car)! I wonder already what I will learn about myself, about my husband, about my kids. How much closer will I become to my savior. Without all of the fun outside distractions this world offers me and my children each day, I realize my strength, my patience, and my love will need to come from him; because as it is, even today with all the distractions in place, I can always use more patience and love.

So here we are just weeks away from what is going to be the most stretching time in our lives thus far. Here I am going to Wal-Mart buying massive amounts of toilet paper, baby wipes, and frozen corn dogs trying to prepare my home and cabinets for people other then me being here to love and take care of my boys. This is my control freakish ways coming out full force. Every time I go to Wal-Mart I fill a cart and empty a wallet and get some pretty strange looks along the way. People must think I am just nesting, but I feel like I am trying to prepare for baby Y2K. I realize that no matter how many frozen corn dogs and waffles I have, I really can't prepare for what is coming, can we ever? Isn't that the point, we aren't supposed to rely only on ourselves and our local Wal-Mart for comfort and preparation. (Its not working only making us poor, and last night some old lady ran over my ankles and my cart was so full that several bags fell out on the way to the car) Here I am weighing what is to come, challenged, scared, sometimes doubting always hoping trying always to trust and lean on what I know to be true.

"Be anxious for nothing, but in everything, by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus." Phillipians 4:6-7

The Plans We Make.

I am a planner, I thrive on schedules and plans and lists. I have a daily cleaning list, shopping lists, to do lists. I love organization and calm (which is funny since I have boys who are anything but calm). I haven't ignored the fact that it is a blessing to me to know there is a problem with Koralyn before she is born, so the doctors and our family can make plans. I have read accounts of families with children with heart defects or Down Syndrome that didn't know until they were born and I can't imagine the shock and pain and all the frantic planning that has to take place. I am thankful for this blessing of being able to plan (as much as possible) for what is to come.

At the same time, I admit that lately this planning is making me a nervous wreck. I have found myself jealous of all these HLHS families where the baby is their first or only child. I think how much easier this would all be if Koralyn was our first not our third child. See most of the planning I am doing is for and because of the boys. I want them to be as comfortable and content as possible, to feel normal and stay on schedule and not feel worried or scared. The type A anal retentive part of me worries about their eating and sleeping and TV watching schedule. Like most moms I think no one can do this better then me, no one knows them better then me, their wants, needs, quirks, capacity to sit in front of the TV all day long and eat only oreos if someone lets them. I find myself thinking about how those one baby families have it so much easier then us and our boys. Oh to only have to focus on your sick child and not worry about others who need you at home. To be able to say, nothing is more important then my time here in this hospital with this sick baby. I even got a bit angry while watching the Duggars and what they went through with their 19th child, because they have all those built in helpers and could go to the hospital without guilt knowing all their littles were being taken care of. I know this is a bad attitude to have and is in no way helping me or my family, but honesty is the best policy right?

I thought I was doing pretty well until a few days ago, when the stress of whats coming just really started to become more real. Even with a "normal" baby and delivery you plan and nest and stock up on things; so now I feel like I need to do all that to an even bigger and more crazy extent. I find myself thinking about first aid kits and light bulbs and pedialyte, like I am preparing for some kind of baby Apocalypse where whoever is taking care of the boys will need these things, and suddenly no stores will be open and I will be deemed an unfit mother for not having a fully stocked first aid kit or a light bulb for that burned out night light. Because in my twisted Type A mind, every good and faithful mother is always prepared and has these things for her children. Like suddenly Martha Stewart or Mary Poppins is going to come into my home and nix nix my flaws of planning and organization. We all have our quirks right? So humor me. I realize when the time comes, the light bulbs and Tylenol will be the least of my worries. I realize that God knows what we need and will send people to help and love the boys while we are away.

I also realize that while being Type A can often times be a wonderful life skill, I can take it way too far and lose sight of what is really important.God is teaching me so much about myself and my insane need for control and it is frightening and humbling realizing that no amount of planning and doing is going to really prepare us for the roller coaster we are about to board. Again I am faced with the fact that my control is just an illusion in the first place and can be such a weight if I let it. If motherhood has taught me anything thus far, its that the flexible mother who can change her schedule and plans at a moments notice is a happier mother and her children are a lot happier too! Remember Mommy Dearest? (If you don't, you should YouTube the wire hanger scene, yikes)!! It is funny that Koralyn seems determined to remind me to be flexible even before she is born, oh we might be in for trouble with this one!

The truth is I rely so much on myself, my ability to be a good mom, a good wife, an organized and clean individual, all skills that are very lacking on a day to day basis of course. I think as christians who profess to rely on God we all have to come to a point, or maybe several, where God makes us realize we are flawed and failing and we need to rely on him fully and completely. Because I am such a stubborn girl, God is having to teach me this many times in my life. Any young mother will tell you, you often need to do this several times a day when trying to raise toddlers. It is a hard, and often thankless job that really brings all your flaws to the surface and can ruin your best made plans and intentions. As with anything hard though, the peaks are beautiful and momentous and well worth the climb.

What we will go through with Koralyn might be our Mt. Everest. We have many more weeks of waiting and wondering and planning and I think God made it this way to bless us and also to stretch us. In the meantime, I will try and focus on the sweetness of what is, not on the fear of what is to come. Smiles from the boys, bedtimes with stories and sweet smelling just washed babies. Waking up in our home having freedom to play and plan the day as we wish. Making dinner and sitting down as a family to enjoy it. Even the messes and chores and responsibilities seem sweeter knowing there is coming a time when I won't be able to take part in them. I am repeating these verses often lately to remind me whats important and to know we are taken care of.

"Many are the plans in a mans heart, but it is the Lord's purpose that prevails." Proverbs 19:21

"Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important then clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable then they? Who of you by worrying can add a single hour to his life?" Matthew 6:25-27

"But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:33-34

My Necklace

Back in December 2010, we were robbed during the day while I had the boys out running errands and meeting with a friend for lunch. Most of my jewelry was stolen, except for a few items that were not in my jewelry box at the time, or that the thief carelessly tossed around the closet in his scramble to make it out quickly. While he got away with my grandmother's wedding band, I later found her engagement ring in a shoe, and I am so thankful to still have this treasured ring my grandmother literally wore thin even 20 years after my grandpa passed away until recently when her fingers became too thin to hold the rings. But I am already getting sidetracked, this post is about my necklace.

For my 24th birthday, while I was pregnant with Asa, Amos gave me a sweet little heart shaped necklace. We were vacationing in San Francisco and on the morning of my birthday, he left the necklace on the bathroom sink for me to find while I was getting ready for the day. I have always loved heart shaped jewelry and this necklace was special because it had a little diamond and my birthstone, an emerald placed side by side on the left side of the heart.

A few months into this pregnancy, I looked down one day and realized I had been wearing this necklace since the time I learned I was pregnant and it was in that moment I realized that it had my birthstone and the baby's birthstone on it as well. I thought this was really neat and pointed it out to Amos. When I learned later that our sweet baby was a girl, I thought me wearing the necklace was even neater, like a little sign, considering this would be my first girl and we were already connected in this sweet simple way. I vowed to not take the necklace off for the remainder of my pregnancy.

It wasn't until a few days ago, that while looking down at the necklace I realized the bittersweet connection of it all. I took the heart between my fingers and slowly traced over it, thinking about the heart and the two birthstones side by side and our connection.

I was born with a broken heart, an atrial septal defect that wasn't discovered until I was three, at which time I weighed 23 pounds. Our sweet Koralyn will also be born with a broken heart, and what seems so ironic in this whole connection thing we have going on, is the fact that the defect that made me so small and sick is essentially what is keeping Koralyn alive right now and will be made to stay open after her birth until her first surgical procedure. In March we will go back in for another echo on Koralyn's heart, and if the hole is closing prematurely, which can sometimes happen in babies with HLHS; there is chance we might have to fly to Boston to have a fetal surgery done to keep the hole open. We are told right now this is a small chance and we are of course praying that our first trip to Boston as a couple will not be under these circumstances. The necklace rests gently right at the top of my scar from the ASD closure. I find myself constantly tracing the heart with my fingers, looking down at the little green and white stones when I am thinking about, or praying for our sweet daughter with her badly broken heart. It brings me comfort knowing we are so connected in so many ways. I feel this necklace is a sweet and comforting reminder of our connection and the hope I hold in my heart for her. No matter what happens, we will always be connected. The two of us side by side like the birthstones on the heart on my necklace, that sits gently on the scar that mended my broken heart, the same scar Koralyn will have. Who knows, one day Koralyn might wear this necklace while away at college or on her wedding day, or while pregnant with her own child. Maybe she will gently grasp the heart, tracing it with her fingers and know how much I have loved her since the very beginning.

"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." Psalm 139:13-14

Thoughts

As the dust settles from the latest news I find myself trying to collect my thoughts and emotions enough to write something that makes sense. On Tuesday we were given the news that our sweet Koralyn actually has Hypoplastic Left Heart Syndrome, a much more severe defect then the original AV Canal diagnosis.

I went in on Tuesday Morning nervous yet excited that the day had finally come to see a more experienced doctor. I had hopes deep down that she would waltz in look at the baby and say something like, oh that first doc was mistaken, the problem is small and can be fixed in a jiffy yay for you! Now go home and enjoy your pregnancy! It was a shocking blow to find out that the news was in fact worse not better. The fetal echo took a long time that morning and the tech pressed down on my belly so much, for so long and sometimes hard that it is still sore today. I watched the screen and the baby and also the techs face for clues. Several times she seemed to sigh and grimace and I got worried. She like all the others, was having an extra hard time getting the images she wanted. She finally finished and told us the doctor would review the images and be in to talk with us.

About ten minutes went by and Dr. Roten came in, I had looked at her picture on the Internet so I knew what she would look like and had also heard from another CHD (congenital heart defect) mom that she was very kind. She was indeed very kind. She started out by asking about our previous diagnosis and then told us that the baby in fact had HLHS. The first question out of my mouth was, okay is that worse or better? She sighed and said, well it depends on who you ask. Some parents think it is better because the risk that she has a chromosomal defect is almost non existent but the defect itself is much more rare and more severe. I blurted out that I would take the old defect and a "special" baby over this! She then went on to explain the logistics of it and what we could expect after Koralyns birth. Let me tell you, the picture is not a pretty one, very murky and dark with many unknowns waiting for us.

After the appointment I felt as I did a month ago, shocked and not sure how to feel. I knew this was not what we were wanting to hear, not what we had been praying for, but again I KNOW God knows and made our sweet Koralyn. The pain seemed to come on much quicker this time and I woke up on Wednesday morning sick and overwhelmed. I can honestly tell you that the last two days have been some of the hardest in my life. The fears are raging at my door and the peace and calm have gone for now, I am sure part of this is due to the fact that I am sick physically, which always complicates even the best day not to mention some of the worst!

I am thankful for a husband who reminded me on the way to the car on Tuesday that we need to remember all hope is not lost, God has a plan and he will get us through whatever is coming. I love this man, and know he is right, but you see I am a worrier, always have been. So right now the only prayer I can muster is one of fear, telling God how scared and overwhelmed I am, asking him what is to come, how have our lives changed what will happen to us, our boys, our finances. I know he hears me, I know he knows me, I know he doesn't mind giving me this time to fear and grieve and be irrational. I also know the haze has to pass and I have to find my trust and peace in him if I am going to make it through all these unknowns; months of waiting and wondering, months (hopefully) of juggling hospital and home and kids. I say hopefully because there is a chance our sweet Koralyn won't make it, this is utterly terrifying to me, and I will be so greatful in the midst of the chaos to juggle instead of plan a funeral with a tiny casket and little pink flowers.

Is any of this making sense? Probably not, thats okay my mind is jumbled and I needed to be honest and tell you all the ugly truth of it. Some random thoughts that have gone through my mind:

Seeing other pregnant moms is hard for just a moment the pain hits me in the gut and I wonder about their sweet babies. Seeing people that don't know, like the lady in the elevator yesterday who smiled and said, "two boys and another on the way" and I smiled and said, "yes and it is a girl" like everything is normal and fine, knowing it is not. Vacations, now this may sound funny and a bit insane under the circumstances but I am being real here folks. You see I love to travel, our family vacations are a highlight in my year, I love to plan them and I love even more so to take them. I have had many thoughts in the past two days about our freedom to go anywhere and do anything and eventually take our boys on a mission trip. Our long car rides across America, our stays in tiny hole in the wall towns, the mountains, the hikes, the adventures. I feel this is being taken from me, from us. There will still be vacations of course and we can still do missions just on American soil, but I feel our "freedom" has been limited and it hurts and it sucks. Our finances and the mounting cost of what is and what is to come. Life while we are in the hospital, our boys, our home, our responsibilities. What happens if one of the boys gets sick, or breaks something. What happens if our cars break down and we need to be at the hospital or our roof leaks or there is a storm or our pool equipment breaks or our fridge stops working or someone doesn't know that I am an insane neat freak and puts the boys clothes away wrong!! Silly I know, but what can I say, I told you I worried a lot. So again when these things come to mind I ask and tell God and take comfort in the fact he knows and cares. And you see he is already teaching me and reminding me that all my "control" is just an illusion and if I am going to rest it will have to be in him.

"We are afflicted in every way, but not crushed, perplexed but not despairing; persecuted, but not forsaken; struck down, but not destroyed."
2 Corinthians 4: 8-9

A Scar And A Picture

I have a scar going down the center of my chest and two smaller scars underneath. When I was little, it was called my zipper and my buttons. I was proud to show it off whenever given the chance! I always knew that my "zipper" was from the heart surgeon cutting my chest open to get to my heart, but never really knew why my "buttons" were there. The other day while reading a blog post about a little guy with a badly broken heart, and looking at pictures of him shortly after his surgery, I realized why my "buttons" were there. It was eye opening to come to this conclusion and now I see my "buttons" in a whole new light.
The little boy, barely a toddler had tubes and wires all over his tiny bloated body. There were two large drainage tubes coming out right underneath the center of his chest to drain his body of excess fluid after the surgery. Looking at these pictures and thinking about what my parents went through was hard. Even still looking at these pictures and catching a glimpse of what our future, what Koralyn's future might hold, was even harder. Thinking about watching your sweet baby girl go through something like this is heart wrenching.
I have always wished my parents kept some kind of journal or memory book of my open heart surgery experience, but it was a different time and place when I had my procedure done. I wish now more then ever I could get a glimpse of what it was like for them, for my sister, and for me as a three year old little girl to go through that whole process. I have virtually no memories of the suffering and physical pain of the ordeal. Only scant memories of the hospital, walking down the hallways during my recovery, the helicopters landing outside a window as my mom and I watched. Now whether these memories are real or something created in my mind after the accounts I have heard, who knows! The mind is a mysterious thing isn't it. I remember years after going to see Dr. Fripp my surgeon in the big building in downtown Albuquerque and always being excited. How cold the stickers on the monitors were for the echos, how as I got older, having my shirt off became more embarrassing, and how I was always given a good diagnosis after those appointments.
I take much comfort in the fact that sweet Koralyn won't have memories of this time. I take comfort in knowing that at one time, I was the bloated toddler in the hospital bed with tubes and wires keeping me monitored and alive; and now here I am, no worse for the wear. I have such a blessed life, and so many wonderful memories, none of which include those tubes and wires. Only the sometimes itchy battle scars remain to remind me of what we all went through when I was three years old. I wear these scars proudly just like I did then (of course I don't show them off proudly anymore) I am sure our sweet Koralyn will do the same, all the while knowing it is those scars many prayers and Gods grace and mercy that saved her precious life.

"Have I not commanded you, be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go." Joshua 1:9

The Details So Far.

On November 21st we went for our 19 week ultrasound to see the baby for the second time and learn if it was a boy or a girl. We learned that the baby was indeed a girl, which was unexpected and very exciting news! We were also told she had Choroid Plexus Cysts and were told she was too active to get a good picture of her heart. Everything else looked good. Our doctor told us we would take another look at her in 4 weeks to get a better image of the heart and see if the cysts were dissolving. At this point we were so excited about the baby being a girl, and had been through the cysts with Asa that we were not worried. It was very evident she was very active during the ultrasound so not getting good images of her heart made sense. We sent out a prayer request about the issues.

On December 19th we went back for our follow up ultrasound. The baby was still very active and to our joy the cysts were completely gone! The tech kept trying to get good images of the heart but still could not. At the very end of the ultrasound she zoomed in on it and I thought to myself it didn't look quite right. She told us the doctor would talk more about what would happen next. Our doctor told us he didn't have much info other then that they were unable to see the four chambers of her heart but it was hopefully just the equipment. He was sending us to a maternal fetal specialist asap to have them take a better look and probably clear any doubts up. I was more afraid then Amos but still not too frightened or concerned. We sent out another prayer request.

December 21st we went to our maternal fetal specialist. I didn't get much sleep the night before and was very nervous the morning of the appointment. Amos tried to calm my fears and didn't seem worried at all. We went into the dark room with the ultrasound equipment and were surprised to learn that the actual specialist would be performing the ultrasound. With Asa's it was a tech and the specialist came in afterwards to discuss the findings. The doctor was a very sweet lady (pretty much the opposite of the cold man we got with Asa) She started the ultrasound and told us everything she was looking at, things were looking good. When she got to the heart she zoomed in and did the blood flow pictures several times, she then said she would come back to the heart at the end, of course red flags went up. She went on and told us her stomach was normal, her brain and spine looked good, etc. Then she went back to the heart, did the zoom thing again and the blood flow thing again and took a long time. She sighed looked at us and said okay, well your baby does indeed have a heart defect. My first thoughts were okay, well I had a heart defect and look at me! But then she just kept talking and this is where things get fuzzy. A lot of talk about this defect being a big one and quite serious and also a big marker for Down Syndrome. The first question I had was, is it fatal or fixable, she told me it could be either. This defect encompasses several parts of the heart and many defects rolled into one big name. We talked and asked questions, none of which I remember.I had to call the next day to ask her again the name of the defect due to the overwhelming shock of everything, we actually left the office with all these details buzzing around in our heads and when asked what the specific name was I couldn't tell anyone! She left the room for a few minutes and I begin to cry. Amos seemed shocked and was just very quiet he just said he wasn't expecting this at all. She came back in and told us she wanted us to see a pediatric cardiologist because they would be able to tell us a lot more. She then asked if we wanted an amnio to confirm a chromosomal defect with 100% accuracy or if we would be interested in terminating the pregnancy. (She was not cold or unkind, I am pretty sure they have to ask these questions by law) We of course turned both down and walked out with a promise that an appointment would be set with the pediatric cardiologist asap. Of course with the Holidays coming up it might take longer then normal!

Leaving I know we were both in shock and I just remember thinking, how am I not breaking down. I just remember thinking while standing in front of the mirror in the lobby bathroom that no matter what, it was going to be okay because God has a plan and he knows this baby, he made this baby. Amos and I went to eat a quick lunch and talked a lot about how this was going to change our whole lives whatever the outcome, no going back now. Then Amos had to go back to work and I went to pick up the boys from a friends house. The shock wore off for Amos that night but didn't hit me until around 4 the next morning when I woke up couldn't go back to sleep, woke up Amos and had a good deep cry (the kind that leaves you breathless and exhausted)

Now we wait for January the 17th, when we will see the pediatric cardiologist at Cook Childrens in Ft. Worth who is supposed to be one of the best and is currently out of town until the 16th! Waiting is hard, but at the same time I feel it may be God's grace of still being able to feel pretty normal and go on with our lives. I know for me, I feel the prayers of so many and am able to feel peace and joy. I believe this has already made me more aware of what a blessing the boys are and it also makes me want to protect them and be a better mom for them. I have had a few moments of fear, but for the most part just really feel God's grace and peace the joy is different too, more deep and appreciated. I will admit that I am hopeful and also fearful for the appointment on the 17th. Amos and I talk about the baby a lot at night after the boys go to bed, I am so thankful for my husband who can also find strength and peace in our savior.

So now we wait and live out our faith and hope until the 17th when we learn more and then there will be more waiting and hoping and living.
"I waited patiently for the Lord; he turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God." Psalm 40: 1-3