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