Up Next Week: 3rd IUT and a Big Appointment

I had my 36th ultrasound yesterday to check on baby one last time before the IUT on Monday and to check his weight. The weight estimate is very important because the doctors use it to decide how much sedative/paralytic to give the baby before the procedure, and how much donor blood to give him during the transfusion. As usual, he’s measuring ahead (which we love!) and weighed 4lbs 10 oz at 31 weeks 6 days. I think that is about the average weight of a 34 week baby. The bigger he is, the easier the transfusion is for Dr. Trevett and the better off baby will be when he is delivered early. There were no signs of hydrops or distress during the ultrasound but baby was definitely the stillest he’s ever been and his MoMs ranged from 1.5-1.72 so that made me anxious. They drew my blood for the normal pre-IUT blood work and then I was on my way home to Alabama, just barely missing Atlanta rush hour traffic. About and hour later I got a call from the hospital. They told me I needed to turn around and come back because they had just received my blood results and there was a problem. It looked like I had developed another antibody, possibly the Le(a) antibody, which I know absolutely nothing about. They needed to draw more blood and do more tests to clarify what was going on. So, I turned back around, drove back to the hospital and had my blood drawn again. I won’t know more about this until Monday but I’m hoping that I didn’t really develop another antibody. The reason they do blood work before every IUT is because they have to check to make sure I haven’t developed any new antibodies. They have to carefully match the donor blood to my blood before every IUT because if they accidentally gave the baby blood that doesn’t match my antibodies, my body could destroy the baby’s blood right after they give it to him. Anyway, it was a long day and I’m thankful to be home with a day to relax with my family. Well, you know, do dishes, cook meals, do four loads of laundry, pack for Atlanta, clean the house, diffuse one thousand toddler melt downs and all of the other things a “relaxing” day with three young children entails. Tomorrow, my mom, Nora and I will drive back to Atlanta and stay through Tuesday for the IUT. Please pray that the baby is safe until then and that the procedure goes well. It’s stressful to feel his kicks slow down as he gets more anemic every day leading up to the IUT. Here’s our sweet boy during yesterday’s ultrasound-

img_2710

I also would love for you to pray for a very important appointment I have coming up next week. The appointment actually doesn’t involve my current pregnancy. It is about Lucy. I’ve been wanting to make this appointment for about four years now and I finally worked up the courage a few weeks ago to schedule it. The date has crept up on me and now it’s just a few days away, August 30th. Even though I’ve been wanting and needing to have this appointment since Lucy died, I’ve also been dreading it.

The appointment is at UAB Hospital (in Birmingham) with the head of the MFM department to discuss everything that happened with Lucy. We will also go over all of the test results that I never saw like her autopsy, my placenta analysis, amnio results, etc. I have a lot of questions that I’ve never been able to ask since I never had this appointment after Lucy died. Usually, after a baby is stillborn the doctors set up a “preconception appointment” for several weeks later to discuss what happened with the baby and to go over any test results and questions the parents might have. They also discuss future pregnancies and what the treatment or monitoring would look like if the parents did want to try for another baby (thankfully we won’t be discussing that.) I had scheduled my preconception appointment at UAB after Lucy died, but one of the main MFMs called me about a month after we lost her and told me I could cancel the appointment. He said he had seen my placenta analysis report and decided that I had had a fetal maternal hemorrhage which caused Lucy’s death (other doctors disagree.) He thought we could go on to have another baby naturally so he decided there was no need to have my preconception appointment. I was so overjoyed by this news that I cancelled my preconception appointment, which I now know was a really bad decision. I never got to ask the MFMs about the treatment and lack of monitoring I received during my pregnancy with Lucy (that contributed to her death.) I never saw her autopsy results, or any of the test results or anything. As far as I know, no one was held accountable for what happened or was even notified that a baby had slipped through the cracks left gaping by their hospital’s outdated protocols. I never got to ask them why they “don’t change protocol just because of one baby.” I am curious to know how many babies need to die before they decide that their protocols might need to be updated. Now I just sound bitter, which is not what I want. I hope to get some answers, to better understand the decisions the doctors made, to forgive the mistakes that were made and to make sure that this doesn’t happen to any other babies in Alabama.

Preparing for this appointment and writing down my questions has been emotionally difficult to say the least, but I feel like I have to have this appointment to get a little bit of closure regarding my experience at UAB. I am dreading the thought of going over her autopsy, thinking about my precious baby being cut open. How can a mother bear those thoughts? But the weight and responsibility of protecting other babies whose mothers go to UAB for treatment weighs heavily on me. Nora and this baby boy on the way are my daily reminders of how Lucy’s story could have played out if only she had received the right treatment and monitoring. Please pray that God gives me the strength to get through this appointment and find some peace afterwards. Also pray that the MFM department is humble enough to learn from Lucy and that they change their protocols regarding management of isoimmunized pregnancies.

Advertisements

Blood Results and Gender Reveal

Yesterday I got the call from Dr. Trevett that I had​ been anxiously waiting for. I knew right away from the tone of his voice that the results were not good. Unfortunately, our baby is kell positive. Josh’s genes win again. The odds are supposedly 50/50 but Asher, Lucy, Nora and now this baby are all kell positive. We still don’t know whether Liam is or not (I didn’t develop the antibodies until after Asher was born so the boys weren’t in danger.) I was not surprised that the baby was kell positive but I was very disappointed and disheartened. I’ll write some more about what the baby’s kell antigen status means in a minute.

I know you are probably also wanting to know what the baby’s gender is. Since we knew the baby was kell positive we just did a small, family gender reveal with our kids and a few of their cousins at my mom and dad’s house. I made little volcanoes for the boys with baking soda and food coloring and they poured vinegar in to find out whether they’re getting a brother or a sister. Here is the video:

We are having a baby boy! We love our son so much already.

When I first heard the news that I would be having a boy I was completely shocked and to be honest, kind of sad. I really wanted Nora to have a sister on earth and this is definitely our last baby (unless we decide to do foster care one day way down the line.) I wept and grieved deeply for the loss of seeing my daughter with her sister. It reopened my Lucy wound, which is only partially healed to begin with. Obviously, Lucy can never be replaced and I always ache for her; for Liam and Asher’s first baby sister and for Nora’s big sister. But I was hoping that the pain of Nora growing up without a sister would be healed and redeemed here on earth. Now I know that will not happen. I will have to wait until heaven for God to redeem that loss and Nora will grow up with only brothers (which is not a bad thing, it’s just difficult for me because her sister is missing.) I was also worried when I found out I was having a boy because sometimes, boys tend to be more affected by the antibodies than girls. So this boy might have to fight harder to survive than Lucy and Nora, which is scary to think about. I gave myself time to grieve these losses and to get used to the idea of having another boy. Gender disappointment is real and it’s important to grieve and “say goodbye” to the idea of the baby you were expecting/hoping for. That being said, we are not disappointed at all in this baby. We are thrilled to be having another boy and we are desperate to bring him home alive. I remember soon after I found out I was pregnant and I was going through the scenarios in my head, “Kell negative boy? Kell negative girl? Kell positive boy? Or kell positive girl?” and the strong feeling came over me that I really didn’t care in the end. I just loved my baby, whoever he/she was, whatever the blood type, I loved my newest baby completely. That’s the bottom line. I love my son for who he is, testosterone and energy and kell positive blood and whatever else comes with him, I love him for who he is and I’m thankful for this incredible gift from God. I’ve known the baby’s gender for about a month now and at this point, I can’t imagine having a baby girl. I truly am looking forward to having another boy.

Yet again, I am reminded that God is writing this story, not me. He thinks the best thing for us is this little boy which makes me so excited about him. If it were me writing this story I definitely would make this baby kell negative, but God thinks this is best and I trust Him. He has a reason for His decisions. My mom reminded me how many great blessings came out of Nora being kell positive. We learned so much about anti-kell antibodies and the proper treatment and monitoring practices. I’ve been able to help many women and babies with their pregnancies because of everything I went through with Lucy and Nora. We got to live in Houston for five months and meet so many amazing, courageous families who we now call friends. I got to fall in love with some sweet children who are now with Lucy in heaven and I never would have been able to get to know them while they were on earth if Nora had not been kell positive. These people have blessed my life in so many ways. And of course, we got to see a miracle take place right before our very eyes as Nora beat the odds week after week and pulled through again and again. Now she is here, full of life (and full of toddler sass) filling up our world with hope and light.

There are so many good things that came with Nora’s kell positive diagnosis and I look forward to seeing what God is going to do through our little boy.

So, medically speaking, what does it mean now that we know this baby is kell positive? It means my antibodies are definitely attacking him and will continue to attack him until he’s out of the womb. My anti-kell antibodies are specifically designed to destroy my own baby’s kell positive red blood cells. When that happens, the baby will become anemic and will need a blood transfusion in the womb. It is difficult and dangerous to do a blood transfusion on a tiny baby in utero, as you can imagine. The bigger the baby is, the easier it is for the doctors to do the transfusion. The further along baby is, the safer the procedure is because if something goes wrong the doctors can just deliver. If baby boy had to have a blood transfusion right now it would be extremely dangerous since he only weighs a few ounces and isn’t even close to being viable outside of the womb. Lucy had a blood transfusion at 18 weeks and died at 19 weeks because she was losing the battle against my antibodies and she was too young to deliver. If I had been a few weeks further along they would have delivered her and she would have had a chance at life. Thankfully, because of the plasmapheresis and IVIG treatments that I had during my pregnancy with Nora, she did not need her first intrauterine blood transfusion until 24 weeks. We are hoping our boy can make it as far as Nora did before needing a transfusion.

As of right now I am driving to Atlanta (about 3-4 hours one way) every week to do an MCA scan on the baby to check for anemia. If he starts getting close to being anemic we will do scans twice a week and if the scan shows that he is anemic we will go to Houston the next day to be treated by Dr. Moise. Dr. Moise is more experienced treating babies at early gestations for fetal anemia. If the baby gets anemic later on in the pregnancy we will probably stay with Dr. Trevett and let him continue treatment. I am having weekly IVIG infusions in my home with my home care nurse (having one right now as I type, actually.) I will continue these until baby becomes anemic and needs a blood transfusion. The IVIG has side effects that make me feel terrible most of the time on top of pregnancy symptoms so that has been very difficult. With all of my pregnancies I’ve had around the clock morning sickness from about 6 weeks to 20 weeks. I started getting sick at only 4 weeks pregnant with this little guy. The side effects that I struggle with most from the IVIG are nausea, vomiting, migraines, muscle weakness, fatigue and muscle aches (very similar to flu side effects.) I feel extremely weak and fatigued most days and a lot of my mental energy is spent trying not to throw up. I often don’t have the energy to stand up long enough to cook a meal for my family (I try to bring a chair into the kitchen or we end up getting take out, which is normally very rare for us.) Going grocery shopping feels like an impossible feat most weeks, and by the time I’m standing in line to check out I really have to fight not to pass out or throw up while I wait. There is a lot of physical suffering ahead for me and for baby boy and a lot of emotional and financial stress for our whole family. Please pray that our boy survives. All of this is completely worth it for us. He is worth it. None of this is a surprise to us, by the way. We knew before we got pregnant that this would probably be the scenario and we knew what we were signing up for. Our family was on board and our doctors were on board before we even decided to try to get pregnant so that makes us feel incredibly blessed to have such a great support system.

The best news is that baby boy looks healthy so far. Our last appointment was on Monday and baby’s MCA scan showed no anemia so far. There were no signs of hydrops and baby’s heart looked good. He was active as usual and so adorable.

img_1078

My next scan is on Tuesday, May 9th. They will probably do an in depth ultrasound for the first time to measure baby and check all of the structures of the organs. They will also be doing another MCA scan to check for anemia. Please pray that our son looks healthy and shows no signs of anemia. My little brother is also getting married next week and I REALLY don’t want to miss his wedding. If baby looks anemic on Tuesday I will have to go to Houston and miss my brother’s wedding so pray that baby still looks good. Thanks for supporting us through this tough time and for praying for our baby. Is there any greater gift than knowing other people are praying for my child?

I want to end this post with the verses God gave me for this pregnancy and this child the night after I found out I was pregnant. I struggled throughout the night with anxiety and panicky emotions. Like I mentioned in an earlier post, God brought a verse to my mind and when I heard it and repeated it, all of the voices of fear that had kept me awake for hours were immediately silenced. Right when I heard Dr. Trevett say the words, “kell positive”, God brought these verses to mind again:

Psalm 18:28-36  For it is you who light my lamp; the Lord my God lightens my darkness. For by you I can run against a troop, and by my God I can leap over a wall. This God- His way is perfect; the word of the Lord proves true; He is a shield for all those who take refuge in Him. For who is God, but the Lord? And who is a rock, except our God? -the God who equipped me with strength and made my way blameless. He made my feet like the feet of a deer and set me secure on the heights. He trains my hands for war, so that my arms can bend a bow of bronze. You have given me the shield of my salvation, and your right hand supported me, and your gentleness made me great. You gave a wide place for my steps under me, and my feet did not slip.

Oh Lord, fill my boy with strength. Support him and be his shield. Keep him safe and use him to do great things for you. Let him be a light and a beacon of hope to others. We entrust our son to you.

Four Years In Heaven

Oh my baby, how I miss you. Every day, every minute for these past four years I have ached for you. That chamber of my heart that is only Lucy shaped remains empty. I know how your biggest brother Liam feels in my arms, how your big brother Asher feels in my arms and how your baby sister Nora feels in my arms, but I don’t know how you feel and my arms ache for you. A mama’s arms belong around her babies. I wish you could be here to play with your little sister Nora, you would love her so much. Your absence in our family is felt every single day. I see the space where you should be that nobody else sees. I miss you.

I miss you.

It has been four years since Lucy’s heart stopped and mine was irreparably broken. It is a feat, surviving four whole years without your child. I feel like I should be awarded a medal just for still being here, four years later, without her. The beautiful thing about living this life with my God is that He has more for us on this earth than just surviving. The past four years have been the saddest and most difficult of my entire life, but they have also been the most beautiful, the most redemptive, and the most productive years of my life.

As most of you know, when Lucy died I was told I could not have any more babies. It felt like an extra cruel blow because of who God had created me to be. He made me very maternal from infancy. I have always been obsessed with babies. They were the best thing in the world to me. My undergraduate degree is in Early Childhood Education. I was told that a degree in Elementary Education would be more useful so I eventually agreed to go one more semester to also get my Elementary Ed degree, but all I really cared about was getting that Early Childhood degree because I just wanted to teach the babies. My whole life I waited and dreamed about having a baby of my own. I wanted to fast forward time until I held my baby in my arms for the first time. My greatest wish for my life was to have a big family; LOTS of babies. For God to allow my baby to die and then to leave me with a pregnancy condition that would repeat itself and make my pregnancies “fatal” seemed so cruel. It felt like a custom made attack, designed to destroy the most beloved part of who I was.

I couldn’t even look at babies after Lucy died, they physically nauseated me. During my counseling sessions I had therapy for PTSD and had to work through the most terrifying scenarios like, “You’re at the grocery store and suddenly a woman comes around the corner carrying a baby, what do you do?” I remember being on a flight only a couple months after losing Lucy and there was a baby next to me on the airplane. I felt like I was going to have a panic attack. Every sound she made caused a physical pain in my chest. I could not believe how agonizing this adorable baby next to me was. My pain originated from my deep love for babies, especially my love for my baby girl who had been killed by my own body, and the love I had for my future babies who would never exist because of anti-kell antibodies. Every baby I saw reminded me of my dead dreams for my family and my dead daughter. And if I’m truly honest, they represented the lie that for some reason God loved those other parents more than He loved me because their babies were alive. The parents of the baby next to me on the airplane seemed to sense my discomfort. They probably thought I was just one of those adults who gets irritated with loud babies on planes. If only they knew the truth.

If only I knew the truth, that God was not using my tragedies as a custom made weapon to destroy me. God was going to take my little Lucy’s life and my tragedies and He was going to fashion them into a custom made ministry just for me. And guess who God has me ministering to now? Women and their BABIES. Beautiful babies who are possibly in danger like Lucy was. Babies in Pakistan, babies in Canada, babies in Australia and Egypt, babies in the UK and the US, babies in Germany and Israel, Cambodia, Switzerland, Russia, France and even babies right here in Alabama. I get to help babies every single day and it is some of the most rewarding work I have ever done. I get to encourage and empower women who have babies in the womb, women who have babies in heaven, women with babies waiting in their future, women with newborns and women with broken hearts. I love these women, and I desperately love their babies. God uses every single one of these parents who reaches out to me and He uses every single baby to restore a small piece of my broken heart and to restore my hope in Him.

Here I am four years later, and now I am able to look at a baby and see redemption, hope and the greatness of God. Oh the redemption that God has brought through these babies and their moms!

And so, without any more delay, here are some of the beautiful babies that have been helped through Lucy’s story and my blog. Thank you Jesus, for each one of these lives that has been touched by my Lucy’s.

COOPER cooper

CLAIREclaire

EVAeva

JESSA JADEjessa-jade

TYLERtyler

JACOBjacob

KRISTIAN (in heaven with Lucy) and MIKAHkristian-and-mikah

JULIA JOYjulia-joy

SAGE (in heaven with Lucy)sage

KETHRYNkethryn

ROSE with big brother and sister Logan and Havenrose-with-big-brother-and-sister-logan-and-haven

SHUA, ARI and MOSELLEshua-ari-and-moselle

LIAMliam

ELLIEellie

MILAmila

MATILDAmatilda

LUCY ANNElucy-anne

GABRIELLA GRACEgabriella-grace

OSCARoscar

WESLEY JAMESwesley-james

SKYLAR ROSEskylar-rose

AVAava

BRIANA ANNEbriana-anne

LANGSTONlangston

OWEN BLAKE (being born right now, on Lucy’s birthday!)owen-blake

HADRIANhadrian

BABY BOY ROBILLIARDrobilliard

ASAIAHasaiah

NYAHnyah

And of course, NORA JULIET who would not be here if it weren’t for Lucy

And this is baby Hudson, whose mom did not come across my blog until a few days after her son was stillborn this past December. This is why I push so hard to get Lucy’s story out into the world, because Hudson would be here today if only the doctors had provided the right monitoring and treatment. Lucy would probably be here today if she had been given the correct monitoring and treatment too. I will keep telling our story and fighting for the Hudsons and the Lucys who deserve to be here with us.

“I wish I had read your blog whilst pregnant because I would have had the knowledge I have now and possibly could have saved my baby Hudson who was born sleeping on 29th December 2016 due to Anti-K antibodies and having no close monitoring – I was totally unaware of what most of it all meant until I read your blog.”

HUDSONhudson

The love I feel for these babies is unreal. The very tragedy I thought would push babies out of my life has brought so many babies into my life that I have a deep affection for. They are my “yes” from God.

For anyone who feels like God has turned His back on you, for anyone who has suffered unimaginable loss and for those whose lives have not turned out the way they planned, just decide to trust God anyway. Because I am convinced that when there is great loss combined with great trust in God, miraculous things happen. Yes, even a one pound baby girl who never took a breath outside of the womb can leave a legacy that reaches throughout the world.

Happy fourth birthday in heaven, Lucy Dair. I am proud to be your mama. You were worth it all. Four years closer to having you forever. Despite all the pain and agony of waiting to have you, I absolutely love being your mama.

img_1191-2

 

 

Treasuring Up All These Things

Luke 2:19 But Mary treasured up all these things and pondered them in her heart.

This verse in Luke is one of my favorite verses in the Bible. Mary had just given birth to her first child and a little while later a group of shepherds came running in, telling her about angels that had just visited them in the fields. The angels were praising Jesus, the same Jesus Mary had just given birth to. What must have been going through her head at that moment?

As 2016 draws to a close I realize that this year has been a year of treasuring up and pondering; like Mary did in her heart when the shepherds came rushing in after Jesus was born. I can only imagine how overwhelmed Mary was after going through labor and delivery, then facing these visitors and their message from God. Sometimes the weight of a moment is too much to take in right then. Sometimes God reveals things to us that we can’t possibly fathom. Sometimes the beauty and wonder of the moment deserves more than the time it’s given. Life is so fleeting. I often wish I could pause time to fully take in the wonder before me, chubby arms and legs, toddler sized proportions in nothing but a diaper, the sweet five year old love ballads to Mommy, the gentle kiss from biggest brother to tiniest sister. Since I can’t stop time I treasure up the moment and soak it in, ponder it in my heart, store it up to take out later and admire. My year has been full of these moments that I want to keep forever. Moments that point back to God and His goodness.

The moment when Mary stopped to treasure up all the things that were happening around her, to ponder the message God was sending her about her child, often reminds me of a day when I did the same but in very different circumstances. February 8th, 2013, the worst day of my life, when my daughter’s heart stopped and my body became a tomb, God made His radical promise to me, “I WILL REDEEM THIS.” I had no energy or clarity of mind to even attempt to grasp what the words meant, so I stored it up for later. Like Mary, who probably could not believe what was happening to her or how the path of her life had suddenly gone a completely different direction than expected, I struggled to take it all in. I was in shock. But God spoke over and over again, an audible voice in my head, “I WILL REDEEM IT.” And each time He spoke I took His promise like a treasure and stored it away to ponder later. Since that day, almost four years ago, I have contemplated the promise many times, turning it over in my mind. God promised to redeem my daughter Lucy’s death and all the loss and pain that came with it. But did He realize how much was lost on that day and all the days since then? That promise of redemption feels too large. It feels impossible. The first year or two after Lucy’s death I reached in and took that promise out in anger, wielding it like a weapon towards God, “You promised me! But you let more tragedy strike instead! Why would you make a promise you could never fulfill?” How could He possibly repay me for my daughter’s death? Over the years God has patiently and carefully crafted my story, moment by moment, using all the loss for good, mending broken places and making the barren wasteland fruitful. And yes, even redeeming parts of my Lucy loss that I thought would never be redeemed on earth.

This year especially I have seen the redemption He promised emerge more than ever. There have been countless moments of glory, beauty and joy that I never thought I would experience again on earth, too many to list here. Many of these moments involved my miracle baby Nora and many of these moments involved other women with high risk pregnancies who were looking for support. I treasure all these things up and praise God for them (especially my baby Nora!)

nora-face

There have been other moments this past year that felt surreal, heavy and empty at the same time because Lucy wasn’t in them:

The play date where all the babies have their preschool siblings along too but three year old Lucy is missing. I’m supposed to choke down my chicken nuggets and smile like everything is normal. I’m the only one who sees the empty space where she should be.

Folding up and putting away her empty stocking on Christmas Eve after the other three have been filled with toys and chocolate.

Telling her brothers that I am sorry, I don’t know what she would look like today and watching their hot tears stream down.

Suddenly realizing in the middle of an English lesson that the little girl I’m teaching is the exact age that Lucy would be today. Her big brown eyes staring up at me, her little laugh. Would Lucy look like that? I don’t even know what her laugh sounds like. I weep for my baby girl the entire drive home.

Over the course of this year God has been teaching me to pause right then and ponder the painful moment, gather it up and give it to God to be redeemed later. I’m learning to trust that He WILL redeem even that terrible moment. Every tear shed, every time the weight of grief feels too heavy to bear, every single thing I miss with Lucy will be redeemed, repaid and restored. God can redeem the deepest loss, even your loss. He can bring beauty from ashes, He can even heal parts of your heart that you thought were broken forever. Some things can never be mended until we get to heaven, but these things that He does redeem on earth are our foreshadowing of the glory and restoration to come.

If you are reading this I have prayed for you. I’ve prayed for your 2017, that God would bring about the most beautiful redemption in your life. I’ve prayed for your healing and for your joy, that God would give you the desires of your heart and would grant you the request of your lips. Be bold and ask Him for the thing you so desperately want. Gather up all of your hurts and hand them over to Him to be redeemed. Those who sow with tears will reap with songs of joy.

Psalm 126  When the Lord restored the fortunes of Zion, we were like those who dreamed. Our mouths were filled with laughter, our tongues with songs of joy. Then it was said among the nations, “The Lord has done great things for them.” The Lord has done great things for us, and we are filled with joy. Restore our fortunes, Lord, like streams in the Negev. Those who sow with tears will reap with songs of joy. Those who go out weeping, carrying seed to sow, will return with songs of joy, carrying sheaves with them.

Lately

I have been so bad at regularly updating the blog these past few months! I have several posts written in my head that I really want to type out but I just cannot find the time to do it. Part of me feels guilty about this since I used to be so consistent with my blogging, but part of me also feels relieved that there have been no big tragedies in my life lately to blog about. I am busy with life, regular life with my three earth babies, and it is wonderful. I still feel like I’m trying to reintegrate back into “normal” life, except that it is a new normal. I still struggle with the fact that I will never be the person I was before anti-kell antibodies and before my daughter died. This adjustment to my new life feels very similar to when I move to a new country. It’s disorienting at first trying to understand a new culture, learn a new language, figure out a new transportation system, make new friends, find your way around a new city, etc. I’ve realized that it takes me at least a whole year in a new country to start feeling like I’m not just a visitor anymore, like I belong. I still feel like I don’t quite belong here even though she died three and a half years ago.

For the rest of my time here on earth my life will be divided into two parts…no, not even two parts, two completely different lives. There was my life before Lucy and there is my life after Lucy. It feels like I am just now figuring out how to make this new life work. I am feeling more confident finding my way around this new country. The culture shock is not as terrible now, but it still jolts me some days. Often, the cloud of sadness settles on me and overtakes everything. I can’t believe I’m missing her whole life. I can’t believe I have to actually go through the rest of my life not knowing my daughter, not interacting with her on a daily basis. Most of the time, though, I just feel thankful. I’m thankful for all that God has done for me. I’m thankful for the many ways He continually fulfills His promise to me that He made on the day Lucy died. He said He would redeem her death and my pain, and He is slowly doing that, day by day (this is one of the blog posts I need to write!)

I started working part time again teaching English to German families and I love it. It is so rewarding and fulfilling for me and the extra income is desperately needed. We finished paying off all of Nora’s medical bills, but we still have our credit card bill to pay off. Normally we don’t use our credit card at all unless there is an emergency but after we lost all of our savings on the “adoption” and I moved to Houston last year we had to use it on a regular basis. Hopefully we can now pay it off over the next year.

Lately I’ve been struggling with the fact that if I didn’t have anti-kell antibodies, we would have already been trying again for our next baby. We would have to get pregnant this month or next month if we wanted Nora to have a sibling two years younger than her. It hurts me to see Liam and Asher play and wrestle while Nora sits all alone on the sidelines, smiling sweetly at her brothers. She should have a three year old sister. I wish I could be pregnant right now with her little brother or sister. I don’t want her to be all alone without a sibling friend close in age. It is another loss that hurts me every day. We are not trying to conceive, by the way. Here is Nora playing with her stuffed animal friends on her little couch that she got for her birthday.

img_3625

Nora is now 14 months old and is still such a content, joyful baby. I love having a little girl in the house. She is so different from her brothers. She loves shoes, clothes and jewelry and tries to dress herself already. She is very maternal like I was when I was little. Her baby dolls and stuffed animals have all been rocked to sleep, bottle fed, kissed, patted, dressed, undressed, dressed again and even sung to. Nora loves talking and singing. Her favorite sentences are “I love you.” and “I like this.” I ask her, “Nora, who is your hero?” and she says, “Doc Mo” which is her version of Dr. Moise. Last night she was playing with her Daddy before bed and she pointed to her belly and said, “Tickle this.” She is finally walking all over the place and trying to keep up with her brothers. They are still obsessed with her. They think she’s hilarious and adorable and they can’t believe how soft her skin is. I often hear one of them say something like, “Mommy, Nora is so cute she’s making my eyes cry.” They are gentle around her and very protective of her. If one of them accidentally knocks her down or hurts her somehow, I always end up comforting the big brother more than I have to comfort Nora. She might cry for a minute but her brother will cry for half an hour and then feel guilty all day about how he knocked her over and hurt her. In these moments I feel extra thankful that she didn’t die in my womb. Her brothers would have been absolutely devastated. I’m so glad they didn’t have to go through that heartache again. Liam asks often about Scarlet and Lucy and he says on a regular basis, “What if we had been able to keep Lucy, Scarlet AND Nora? I would have loved that.” He just said it again this morning. Our lives are interwoven with grief and joy and “what might have beens” but they are anchored in the steadiness of God’s love and goodness. Our joy and our stability are found in Him and we are so thankful that He is unchanging. Here are a few pictures of Nora lately and a video from her first birthday that I forgot to post earlier.

 

img_4153

Nora and five year old Asher

When big brother “helps” Nora get a sip and almost drowns her instead. Ha!

img_4387

That time Nora loved the little chick so much she almost squeezed it to death.

Mommy and Nora

Nora feeds a baby goat at the barnyard.

img_4396-1

Feeding ducks with Liam.

That tiny ponytail!

img_4562

This morning she tried out the sandbox for the very first time and scooped shovels of sand onto her head.

 

Where Is Your Sting?

This is a heavy post. My grandfather is dying right now. He is 93 years old and he’s in a hospital bed in my old bedroom in my parents’ house down the street. We have been keeping vigil by his bedside for the past four or five days, never leaving him alone for more than a few minutes at a time. Days ago we thought that he surely wouldn’t last another day, another hour, but the body that has worked well for almost a century is not willing to give up so easily. It is heartbreaking to watch, emotionally draining and depressing. We know that he is going to heaven and that he has wanted to go to heaven ever since my grandmother died five years ago, but it is still painful to watch the transition. I keep thinking about Lucy and my three babies on earth. Liam, Asher and Nora will all die one day and I probably won’t be here to make sure their transition to heaven will be as comfortable as possible. This is a distressing thought. Will my babies be well loved in their last hours? Will they be scared? Will they be in pain? My Daddy-D, he is somebody’s baby boy, and that’s how we are treating him…the way we want our children to be treated when they die.

Nora and Daddy-D have had a special bond, especially these last few days. She loves sitting on his bed next to him, patting him and babbling at him, even saying his name. His face would light up when he saw her in the last few days that he was aware and still in control of his body.

img_3982

Daddy-D being silly with Nora


img_3994

Playing peekaboo with Daddy-D


img_3975

Nora gives love pats while my sister moistens and cleans Daddy-D’s mouth.

She played peekaboo with him, touched his nose, laid her head on him, and all I could think of was Lucy doing the same things with him soon, in heaven. How long until he goes from playing with my daughter Nora, to playing with my other daughter Lucy? Days? Hours? Minutes? And he will get to know her before I do, my own daughter. How do I process this?

As he has slowly deteriorated and faded, we have been speaking more about the people who are waiting for him in heaven. My mom encourages him, “Mama is waiting for you, Daddy! She can’t wait to see you!” He seems at peace most of the time. I have to mention Lucy…”And you will get to see Lucy soon, Daddy-D! Tell her…” What do I say? What kind of words can I send with him that can adequately convey my love to her, my ache for her, my inability to live without her here? There are no words in the English language powerful enough to express how I feel about her. “Tell her that Mommy loves her and misses her so much. Tell her about her sister and her brothers. Tell her how fun it was playing with her baby sister. I’m jealous that you get to go meet her.” The words are limp. Not enough. He can’t really move but his eyes fill with tears and the tears spill out the sides, running down his face. He tries to speak but we can’t understand what he wants to say.


As I watch my Daddy-D get closer and closer to his last breath I think of the verse-

1 Corinthians 15:55  Where, O death, is your victory? Where, O death, is your sting?

I know that Jesus conquered death, but these words don’t feel true because death seems so much bigger at the moment. Looming, mysterious, inescapable. None of us are getting out alive. I feel weighted down as he struggles to breathe. THIS is the best case scenario? One day, we will all be dead.

I ask God for His perspective, for His light to brighten our darkness. And He gives me thoughts that comfort: Death is inescapable, but for those who love God and believe in Him, it is only a tiny slice of time; a moment. It doesn’t define us, it isn’t the end, it is just a transition we all have to go through. For those of us who are left behind, death is a separation from the people we love, and that is why I hate it. For those who are dying or have already gone ahead, death is a link to the people we love, and that is why I appreciate it. Yes, death is real and it affects us all, but there is also SO MUCH LIFE. Daddy-D experienced so much life. He lived for 93 years! When my mom was a tiny girl he promised her that he would tell her he loved her every single day, and he did. He kissed her and doted on her and told her she was beautiful and she believed him. He loved his wife and his kids and his grandchildren well. He loved God and was faithful to Him. Daddy-D was a leader, a WWII veteran, a successful engineer and he LOVED giving advice. When we were younger he would say, “Look at my old, wrinkly face. Would you swap faces with me? No? What if I gave you ten dollars, would you trade faces with me then? No? What if I gave you a million dollars, would you trade faces with me then? No? Then you are a millionaire right now, at this very moment.” And I felt like a millionaire. He often reminded us, “Deciding to follow God is the most important decision of your life. Deciding who to marry is the second most important decision you will ever make.” I could write so much about his life, but the point is that he LIVED. And after his last breath, when his life here on earth comes to an end, there is more life. Everlasting life stretches out ahead of him. Thank you, Jesus for this gift. What if we could see death for what it really was? Just a thing we all have to get through, like puberty, or winter (or summer if you live here in Alabama.) It does not loom, it does not define us. THERE IS SO MUCH LIVING TO BE DONE, before death and after. Having this assurance brings the most amazing peace, even here in the valley of the shadow of death.

If Daddy-D could tell you one thing right now as his time on earth dwindles, I know he would ask, “Have you made the most important decision of your life?” Because that decision is what defines your eternity, and when you accept the free gift of life that Jesus offers, you rob death of it’s power.

Romans 10:9  If you confess with your mouth that Jesus is Lord, and believe in your heart that God raised Him from the dead, you will be saved.

I love you Daddy-D. Give Lucy so many kisses for me.

img_4051

Ripples

“Mommy, do you want to die in an explosion so you can go to heaven and see Lucy?” Five year old Asher caught me completely off guard with his question. I wasn’t sure if I wanted to laugh or cry but his face was earnest and he really wanted to know. I told him I didn’t want to die in an explosion but I was excited about being with Lucy one day when I do eventually get to heaven.

Lucy’s death had such an immediate, violent impact on my life but the rippling effects are really hitting the boys now. Liam and Asher are suddenly old enough to comprehend that their little sister is dead and it is heartbreaking to watch them work it out in their minds. The boys are so obsessed with Nora and they love having their baby sister with them. I think they are just now understanding all of the beauty and wonder and love that they are missing without Lucy here. I found this drawing at the bottom of Liam’s backpack the other day.

IMG_1844

I asked him about it and he said it was a bad guy freezing the whole world and all the people died but Lucy (who is the tiny dot in the upper left hand corner) survived. Lucy survived. Our ultimate fantasy scenario. Liam also told me yesterday, “Mommy, I’m sad about a daydream I had where all the babies are trying to be alive, like all the babies in their mom’s bellies, and the ones who don’t win die but only the winner gets to be alive.” The boys have asked us about having another baby and we told them that if I had another baby in my belly we don’t know if that baby would live like Nora or die and go to heaven like Lucy. Asher asked me today how old Lucy is and I told him she is about 2, almost 3 years old. I hesitated, though, because I honestly don’t know how aging works in heaven. Would Lucy grow up, year by year like she would here? Or is she still a newborn waiting for me to get there so I can watch her grow up? Or is she an adult? If she were here on earth she would be turning 3 years old this summer. She would be exactly two years older than Nora, just like Liam is two years older than Asher. The boys always have a combination birthday party in February/March and I know Lucy and Nora would have had a combination birthday party every July. I hate that Nora doesn’t have her big sister here with her. Such a huge loss. The boys are so sad that Lucy isn’t here with them. Asher asked what she looks like now and I had to tell him I wasn’t sure. He looked so sad and asked if she looked just like Nora but had a different name and I told him I didn’t know. He said he wanted to be in an explosion so that he could go see what Lucy looks like. I know some of these thoughts seem morbid, but they are just a peek into five year old and seven year old minds trying to understand death. I hate that death is such a big part of our family and part of the boys’ childhoods.

Asher always includes Lucy in our family. He was very wounded this past Christmas when I didn’t hang a stocking up for Lucy. I promised him that next year we will hang a stocking up for both of his sisters. This is his latest family drawing:

IMG_1776

He is holding Nora and up in the sky is Lucy in her mansion in heaven. She is looking out of the window at us. He insisted that I hang the picture up on the wall above Nora’s crib because he drew it for her. Oh how my heart hurts when I think about telling Nora one day that she has a sister that she will never get to meet until she gets to heaven. Watching the boys deal with Lucy’s death now, three years later, is a reminder that this terrible tragedy that happened to us in 2013 isn’t just over, even though we are continuing to heal. The harsh reality is that the tragedy continues and the ripples continue to bruise us, to cut into our hearts, to reopen old wounds. There are facets of our loss, our life without Lucy, that have yet to impact us. One day when Nora gets older she will wish she had someone to play My Little Ponies with; a sister to tell secrets to and do each others hair and share clothes with.

It is hard to go through life without such a vital part of our family. It is hard for siblings to comprehend their sister being dead. Their sister will never be a part of our family here in the flesh. But goodness, she makes heaven so much sweeter and more tangible. When Asher builds things with Legos he often constructs a scenario here on earth and then one in heaven too. “Mommy, these guys are in their house having a meeting and this guy is in heaven.” Thanks to Lucy, heaven is a very real place to us. She has gifted us with an eternal perspective on life and a joyful anticipation of heaven. I used to dread the end of my life on earth. I feared death. It made me feel anxious and panicky. Now, I look forward to it; not in a suicidal way, but in a very sweet, excited way. I feel peace about dying and I can’t wait to get to heaven. The boys are excited about heaven too and they look forward to meeting their little sister and seeing the mansion that she lives in.

The rippling effect of our loss and heartache will continue to hit us throughout our lives. I know one day when all the 2013 babies start kindergarten I will have an intense ache in my heart…and when they graduate and when I know she should be in college and when I see a beautiful bride her age walk down the aisle and when I meet my grandchildren but none of them are Lucy’s…I will continue to be wounded again and again and so will her Daddy. As her brothers grow and understand more and more about this great gaping hole in our family, they will continue to be bruised as well. BUT these destructive ripples are confined to this earth. They will not follow us to heaven. They are harmless in light of eternity, and that is why I look forward to heaven so much. I just can’t wait to see my first girl and to see all of my children under one roof.