When I am apart from my children I often find myself wondering, “What are they doing at this very moment? Are they happy? Are they having fun? Do they feel safe? Do they miss me?” I think it’s typical for parents to worry or at least wonder about what their children are doing when they are apart from them. It’s irrational, but I often wonder what Will is doing. I know he is safe and loved and secure in heaven with Christ, but what is he DOING? As far as I know, the Bible doesn’t give too many specific details about heaven and personally I think it’s because if God revealed too much about heaven then none of use could be happy here on Earth. If we really knew what was coming, if we really had the urgency and expectancy we should, then how could we be satisfied or happy with this world? I have spent some time trying to find everything the Bible says about heaven, just trying to get an idea of what Will might be doing. I just want to know. I want to be able to imagine him doing something that actually happens in heaven. I am no Bible scholar (far, far from it) and definitely not a theologian of any kind, but here is what I have learned about heaven and what Will might be doing there.
1. He is with Jesus. When Jesus was dying on the cross He was crucified between two criminals. In Luke 23 one of the criminals asks Jesus if He will remember him when he gets to heaven. Jesus replies, ““Truly, I say to you, today you will be with me in paradise” (Luke 23:43). Paul also talks of death ushering Christians into the presence of Jesus (2 Corinthians 5:6-9 and Philippians 1:23-24). There are many cases where the word “sleep” is used to describe death in the Bible, which I believe refers to the way the body looks and acts, but no to the state of the body. I know that Christians disagree about when you go to heaven, whether it’s immediately after you die or during the second coming with all the saints. Ultimately, I think it’s a second hand issue but in either scenario, whether we go into a sleep until Christ returns or if we go straight to be with him the moment we stop breathing here on Earth, we are with Jesus no matter what. I believe that just like that criminal on the cross next to Christ, we will be with Jesus immediately after we die. For even more clarity, here’s what John Piper says about this subject:
So, my conclusion is that Christians have a double encouragement for those who are dying or have died. For the believer who trusts in Jesus Christ, Christ’s blood and righteousness have removed the condemnation for every believer and secured for us both final resurrection of the body in a new heaven and a new earth, and now, after death, an intimate, sweet experience of being in Christ’s presence between death and resurrection. It is a blessed hope in both ways. We are safe. We are safe in him now, we will be safe in his presence at the moment of death, and we will be supremely happy in a new and healthy body forever and ever in the new heavens and the new earth.
2. He is living in a perfect body. Philippians 3:21 says that in heaven Jesus “will transform our lowly body to be like his glorious body.” When Will was here on Earth his body was sick and broken. He had a weak heart. His kidneys did not work. His liver, spleen and other organs didn’t function properly as they should. His lungs needed help to breath. Not in heaven. In heaven his body is healed. He is no longer sick. There is nowhere in the Bible that I know of that gives us a description of what we will look like in heaven, but I think the transfiguration gives us a hint. In Luke 9:28-36 Jesus takes Peter, James and John to the top of a mountain to pray. Luke 9:29 says, “And as he was praying, the appearance of his face was altered, and his clothing became dazzling white.” Moses and Elijah were also there, also transformed into something glorious. I think this means two things - one, our bodies will be perfect and two, we will be recognizable. Although different, Peter, James and John still recognized Moses and Elijah. I know some people believe that we will not recognize people from Earth once we are in heaven but based on this text, I believe we will. I believe that when I get to heaven I will immediately know my little boy even though he might not look like he did on Earth, I will see him in his perfect, eternal, glorious body.
3. He is singing. There are multiple places in the Bible that refers to all of heaven and Earth singing praises to God. Will is praising God, singing to Him, with the community of saints in heaven. This truth is really special to me because it’s something that we can take part in here on Earth. When I am singing in church or worshiping God with any type of song, I often picture myself singing alongside Will. I imagine him singing and it feels like something I can do “with him” here on Earth and also one day when we are together in heaven.
4. He is happy and free of pain. Revelation 21:4 says, “He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” Seeing Will sick and in the hospital was devastating. He would sometimes cry when he was uncomfortable or something was hurting him. It broke my heart to see him upset and most of the time I could do nothing to help him. I couldn’t pick him up or rock him or nurse him, he was just sad and inconsolable at times. Not in heaven. He will never be sad again and I also take that to mean he is filled with joy always.
5. He is inspiring those of us still on Earth. This one is kind of complicated and I’m still not sure I fully understand it theologically, so bear with me. Hebrews 12:1-2 says, “Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God.” The Hebrew word used here is martureo which refers to giving a testimony. I think it’s saying that those who have gone before us, those in the “hall of faith” listed out in Hebrews 11 as well as those we have known on Earth, are witnessing to us through their lives. I am a runner so this whole analogy in Hebrews 12 about running the race set before us really works for me. I ran high school track and cross country at a competitive school with a lot of fast girls. I picture it as if I went back and cheered for the girls running now, the ones in the middle of their high school careers. I would be witnessing to them that I finished strong and so can they, cheering them on to keep going and encouraging them to reach the finish line just as I did. I picture “the great cloud of witnesses” like this, just on an infinitely larger scale. Will’s life is a testimony to all of us here on Earth that by faith in Christ we can finish too. His life encourages mine to hope in eternity, where there is no sin, no sadness and no pain. His life inspires mine to make a difference while I am still here on Earth because what we do here has an eternal impact.
6. He is free. John 8:36 says, “So if the Son sets you free, you will be free indeed.” In Heaven we will do everything we want to do and all those things will lead to greater joy. We will worship God together with all of the the saints, completely free of all worry, pain and sickness. I often feel like I lost Will because he is not here with me, but when I think of all that he has gained, that is where I can find peace and comfort and hope. He is not missing out on anything here on Earth, instead he is fully enjoying the presence and perfect love of Christ in a way that I cannot even begin imagine. He is free indeed.
In just a few days a new decade begins. Ten years ago Taylor and I were in college, newly engaged and getting ready to being our new lives together. In the past decade we have gotten married, started jobs, quit jobs, moved to new houses, new cities, had four children, lost Will and started a non-profit. I want to tell you a story about our past decade. It's a bit long but it really puts a lot of what God is doing through the Will King Foundation into perspective. It’s a story about patience and God’s sovereignty. It’s a story that starts ten years ago and demonstrates just another way the Will’s life has affected ours in greater ways than we could have ever imagined.
Ten years ago Taylor and I were at a New Year's conference in Washington DC celebrating the beginning of 2010 with hundreds of other college students. We became friends our freshman year and had met through a college ministry called Campus Outreach. I think there can sometimes be some misconceptions about campus ministries and while Campus Outreach wasn’t perfect, being involved with a group of young Christians had an overall positive impact on both Taylor and I. We learned how to study the Bible and share our faith. We also learned that there were a lot of people all over the world who had never heard the Gospel. I knew about missionaries as a child, I heard of people going on mission trips through our church or delivering Christmas shoeboxes through Samaritan’s Purse, but I never connected that people were going to places all over the world to share the Gospel with people who may have never heard the name of Jesus or read the Bible. Even non-Christians who I grew up with knew who Jesus was and had access to a Bible, it seemed like such common knowledge. It was hard to imagine a world where people would look at you blankly with any mention of Jesus or the Gospel and I was just very naive to what missions was really all about.
Taylor and I started dating in October 2009 and after almost a year were got engaged during our senior year of college. During that time we learned more about these “unreached people groups,” communities of people who had never heard the Gospel. We learned that there was a place in the world called the 10/40 window, which spans much of Northern Africa, the Middle East and Asia and is home to some of the largest unreached people groups in the world. We started a prayer group and met together with a group of friends each week to pray for one of the unreached groups in the 10/40 window. We had maps and copies of Operation World spread across the table as we shared facts about the least evangelized parts of the world. It’s okay if it sounds obsessive and overdone, if you know me then you know that obsessive and overdone are my normal. Just to prove my point, when we moved this summer I found the “Pray for Africa” scrapbook I made for Taylor (yes, I’m serious). I had forgot I made this and I can’t remember when I even gave it to him, but it’s a spiral bound notebook with black pages filled with sticker letters, gold gel pen and full Princess Poppy style enthusiasm. On each page I put the name of an African country in sticker letters and then wrote specific ways to pray for the people in that country. I am not joking even a little bit. I am shocked that he didn’t run far far away after receiving this. And the hours I must have spent. If this doesn’t convince you just believe me when I say we were committed (consumed?) with taking the Gospel to those who have never heard it before. Jesus tells us to go and make disciples of all nations and we, for whatever reason, felt like we should be the ones to do just that.
After we got engaged there was a lot of discussion about where we would live and what we would do after graduation. We felt a lot of pressure to go on staff with Campus Outreach in their new region of Washington DC. We even spent some time in DC meeting with the staff director, visiting the church we would attend and seriously considering the possibility of continuing to spend our time in dorm rooms, college cafeterias and intramural fields. I wasn’t into it but pretended to be. I was excited about living in DC but not what we would be doing there. Staying on the college campus after graduation didn’t appeal to me. Besides, I loved children. I was student teaching in a first grade classroom and being around those children every day lit my heart on fire. We didn’t do many wise things as college students, but one very wise thing we did was reach out to our pastor. We had been attending a local church near Elon for a few years and thought we should go outside of the Campus Outreach bubble to get some advice from our pastor about this decision. We explained that we wanted to somehow have an impact on the nations and that we were trying to decide whether we should spend a few years on staff or not. I remember the look on his face as we explained our dilemma, our hopes, our love for children - confusion, patience and a little smirk as to say, “these two are so naive.” Looking back I realize how illogical and immature we must have sounded. After our rambling he looked at us in the eye and in his deep, wise voice he said, “if you want to impact the nations, you need to get jobs and get involved in your local church.” It seemed too simple of an answer but I think it’s what we were both feeling and didn’t have the words or courage to admit.
We got married one month after our college graduation and moved to Charlotte, NC. We did exactly what our pastor said and found an amazing local church in Rock Hill, SC. We made some of our very best, life-long friends there. We learned how to live together, pay bills and work hard. We grew up together. In 2013 we had our first son and when Joshua was 10 months old we moved back to my hometown of Jacksonville, FL. We became covenant members at a local church, got involved and continued to work and raise our family. There was no more talk of moving overseas but our desire never went away. During our first few years back in Jacksonville my perspective on missions began to change. I read and listened and learned. I started to realize that true change happens through community.
After Will passed away, we asked our family and friend to help us sponsor Avery, a little girl from Grenada who needed heart treatment that wasn’t available where she lived. The response was overwhelming and we were able to continue sponsoring children just like Avery through Patrons of the Hearts. As generosity continued to flow in, we started to realize that we really needed to decide what we would do with it. Who would we help? How could we make the most meaningful impact? Patrons of the Hearts serves international pediatric heart patients and we decided to support those children and families for a few reasons. One is because they don’t have access to the medical resources we do. When our babies got sick, we drove ten minutes to a children’s hospital with all the specialized care they needed. I am certain that if we lived in a developing country when our babies got sick neither of them would have survived. So, we made it our mission to support international children receiving heart treatment in Jacksonville. We get to sponsor children through Patrons of the Hearts, support them and their families while they are here with King Kits, our connection with The Care Team at our local church and through prayer teams. We will get to fund trips to developing countries where doctors will set up a clinic and be ale to identify children who need to travel to our city for life-saving heart treatment. The Will King Foundation has the opportunity to impact the nations much more than Taylor and I do on our own. While these children are here with their families we get to connect with them and support them during a very difficult time in their lives. We get to love them and care for them and even give them a children’s Bible, but I think what is most world changing is that these children will return home with knowledge of the Gospel. Whether they knew about Jesus or not before they came here, they will go home knowing that Jesus loves them and God can use them to reach their communities much more effectively than we ever could have. That’s not to say we will never travel overseas or participate in international missions, it’s just to say that God can use us to impact the world from anywhere, even our own hometown. He can take the biggest mess and turn it into an even bigger message and that’s exactly what He’s doing with Will’s life. He planted little seeds all over mine and Taylor’s hearts over the past ten years and after the most devastating and tragic event of our lives those seeds have begun to grow.
I didn’t write a lot this summer. We moved, travelled and got a puppy but if you can believe it those aren’t even the reasons why. For about a year after Will passed away it seemed that everything poured out of me. In a kind of twisted, desperate way I wanted to remember every detail of what happened during Will’s 96 days on Earth. I hated so many of those days and some of them I will always hold in a little handful of the worst days of my life but each one had Will in it and I want to remember all the moments, even the most devastating ones. I want to remember the emotions, the timeline, the schedule, the medical words, the people, the setbacks and the victories Mostly I want to remember Will. I know that one day it will be hard to me to close my eyes and see his little face, his half smirky smile and his fuzzy peach head. I know I might forgot what his hand felt like wrapped around my finger or how he sat up in his little bouncer seat watching everything going on down the hallway. It is painful to think that I might forget what it felt like to see both of my babies outside of my body for the first time. It’s hard to imagine now, when it’s still so vivid, but I might not remember what it was like to hold Will on his first day or his last. Even though a lot of Will’s life was tragic and heartbreaking, it was his life and I don’t want to forget any of it. I’m glad I wrote everything and I know one day I will read it again, feel it again. But for now, for this summer, it was a season of settling in.
I first started thinking about this theme of settling when we moved into our new home. After everything is unpacked there’s the organizing and the decorating and the filling in all the little gaps of where we need a new bookshelf or whose closet requires more hangers (always the little girls). When the furniture is in place and the boxes are recycled, that’s when the real settling begins. Things get moved around, picture frames lean against the walls and the drapes dance from room to room as we decide what window they will cover. We are getting familiar with the house, it’s corners and spaces and oddly shaped kitchen shelves. There is this period of familiarization where everyone learns how to be in the new space we now live in. The same type of settling happened with the new puppy. Her name is Winnie. She is friendly and sweet and happy and her teeth are sharper than ten billion thumb tacks. There’s a lot of settling when it comes to a new puppy. A lot. We have to learn her habits and preferences and try to understand why she seems more like a vacuum than an animal. We settled into a new schedule with her meals and walks and letting her outside at least 10,000 times every day to run around like a wild beast, eat rocks and dig in the dirt. It takes a period to adjust, to settle, and then it’s the new normal. The old house, the family that didn’t have a dog, it’s now part of the past and while we will never forget those times, we are used to the new now.
It was a summer of settling emotionally too. For me, I feel that settling into a life without Will here on Earth is just beginning in many ways. It’s odd learning how to be a grieving mother. I’ve had to learn what it means to enjoy Will’s siblings without feeling guilty. What it means to raise three children instead of four. I’ve had to learn what it actually means to grieve for a lifetime and while I’m sure I have a lot more to learn, I got a very clear vision of what it’s going to be like while out on a hot, humid summer run. I was running and a tiny rock got stuck in my sock, right in the back at the top of my heel. It wasn’t painful enough that I felt I needed to stop running to remove it (it takes a lot to get me to stop running before the run is over) but it was just big enough that I knew it was there. When it would turn a certain way or I was thinking about it, the rock became extremely painful at times. For some reason I equated that rock to grief and compared it to loosing a child. Running in the Florida heat in July can make you a bit delirious, but I think the metaphor works. The pain is always present. Sometimes I barely feel it, I carry on throughout my day and I’m happy. I think about Will every day and sometimes even get to talk about him, but the grief doesn’t cause me to constantly breakdown. Other times, just like when that rock that would stab into the back of my heel, it’s really painful. Although it’s always there, sometimes it effects me deeper, stabs harder and feels more unbearable. I’ve been settling into that reality. The sorrow is never going away. There will be days that the pain is unbearable, days where I barely feel it even though I know it’s still there, days that I want more than anything to remove it and throw it away and days that I just walk around with it, a discomfort that has become almost comfortable because I know it so well. I knew it but it’s finally setting in, this is my reality forever. I will always be a mother who has lost a child. I will always know that pain.
School started this week. Will would have been 20 months right now, so not close to school age but for some reason I found myself thinking about him and Caroline going to Kindergarten. I had never thought about it before, at least not that I can remember, even while I was pregnant. The thought popped into my mind on Monday morning. It was Will’s older brother’s first day of first grade. He ate breakfast and got dressed, he was excited and nervous and all the things a six year old little boy feels on the first day at a new school. I asked him to put his backpack on and staying with our tradition we took a first day of school picture by our front door. That’s when I realized that Caroline would be standing there alone. I made the thought leave and didn’t let it come back until our first grader was happy and safe in his new classroom. Later that day I shared the front door photo on Instagram and scrolled through, looking at all of the other first day of school smiles and backpacks and front doors. There is often this theme among first day of school pictures, the children are excited and parents have mixed emotions, often feeling sad to see their child growing up. I get it. I have put plenty of tear wall emojis next to captions about how fast my children are growing up. But as I thought about Caroline, as a Kindergartner standing in front of our door on her first day of school, I realized that the pain of watching her grow up is nothing in comparison to not getting to see Will grow up.
I love the stage we are in. I love newborn babies and learning to walk toddlers and I even love terrible two year olds. I know the next stage, the “big kid” stage, will be so much fun. I know it will involve lots of adventures and traveling and going to movies and not worrying about nap time or potty training or keeping track of pacis. But I like where we are. Honestly, a big part of me doesn’t want the next stage to come, I just want everyone to stay little and sweet and innocent. I want onesies and playing with baby dolls and snuggling and dress up. At the same time, I know that it’s such a gift. Growing up is not a guarantee, my child didn’t get to do it. The thought of Caroline standing by that front door alone paralyzes me and makes me cry all of the biggest, ugliest tears. Watching her grow up is hard and I want her to stay this sweet little baby forever. But watching her grow up without Will, that’s the part that really deserves a million tear wall emojis. This is what’s real and this is what I’m settling into. I’m settling into the hard, painful facts about what comes with losing a child. There is no finish line and no happy ending. It’s going to take a lot of endurance to keep on living joyfully with that tiny rock so constantly and painfully making it’s presence known. It’s going to be hard but I can do hard things. This is the race that was set before me, the one that I have to run with that tiny rock as my companion the entire way. I will run it with perseverance. I will run it with confidence. I will run it with joy. I will run it with gratitude. I will run it with purpose. That is where I’ve settled in, a place of joy and gratitude and purpose. A place where Will is never forgotten and where his life always brings happiness to others. I may not be taking his picture in front of our door on his first day of Kindergarten but there are a lot of other ways I can be Will’s Mommy here on Earth. It’s not the rock I would have asked for, wished for or ever imagined, but it’s there, settled in forever and I believe that if I choose to embrace it then it might even compel me to run my best race yet.
Maliya came to Jacksonville in August 2018. She was the third baby we sponsored for heart treatment through Patrons of the Hearts and her life has made a bigger impact on me and everyone around her than any of us could have expected.
Taylor and I got to meet Maliya’s parents, Tonya and Malon, shortly after she arrived in Jacksonville. We had communicated briefly over text before meeting them, but didn’t know the full details of Maliya’s story or condition until we got the chance to spend time with them. We sat at dinner with them in complete awe at their faithfulness, God’s goodness and Maliya’s strength when we heard what they had been through over the past months. Maliya’s heart condition was serious, her oxygen levels were so low for such a long period of time that it is an absolute miracle that she even made it to Jacksonville. All those numbers and stats, the range for normal vital signs and distress signals were all still so fresh in my mind. Will had only passed away five months before Maliya arrived and I could still invasion his monitor with all the numbers indicating how his body was functioning. When I heard Maliya’s numbers I was terrified and amazed all at the same time. What amazed me even more was her parents. They were so calm, confident and joyful - three words I am certain no one would have used to describe me when my babies were sick. Malon, Maliya’s dad, is a Pastor of several churches in Grenada. His faith and trust in Christ was astounding and so encouraging to me. As he spoke I kept thinking about the hymn “My Hope is Built on Nothing Less” and the lyrics that say “on Christ this solid rock I stand.” He confidently and boldly stood upon the solid rock of Jesus and it was apparent and inspiring. I felt an instant connection with Tonya, Maliya’s mom. She was so sweet, genuine and I quickly realized she was brilliant as well. Her love for Christ and love for her daughter poured out in every word she spoke. We went home from dinner so thankful to have met them, so impressed by their knowledge, their faith, their persistence.
Over the next few months, Maliya remained in the hospital, undergoing heart treatment, including an open heart surgery, experiencing the highs and lows that every high risk patient seems to go through. I got to spend more time with Tonya and the more I was around her the more I recognized her strength and perseverance. Through every high she praised Jesus and in every low she clung to Him, proclaiming His sovereignty and trusting in Him. We went out to dinner, on a trip to Walmart and she even spent Halloween with us. Every time we were together she smiled, she laughed, she genuinely asked about my children and cared about how we were doing all the while her daughter was in the ICU, sometimes stable and doing well and sometimes unstable or in distress. Regardless of her circumstances, Tonya always exuded joy that can only be found in Christ.
In December, Maliya went home. Although I had spent time with Tonya over the past five months, I had never met Maliya. I couldn’t go back. I couldn’t go back to the place where I had held Will for the last time. I couldn’t go back to the place where I had watched him breath his last breath. I didn’t have enough strength to enter into that space again. The day before they left for Grenada, I finally met Maliya for the first and only time. My brother and I went to the Ronald McDonald House to say goodbye and record Maliya’s story. Her dad walked out of their room and down the hallway with her. She was tiny but had a huge presence. She had sweet dark eyes and fabulous curly hair and was loved so very much by her parents. We said goodbye and stayed in touch as the Peters family settled into their new normal life at home for the first time since their daughter had been born.
On January 20, 2019, I got a text from Tonya. She was letting me know that Maliya was in the ICU and they were waiting to hear what was wrong. On the morning of January 21 I missed a call from Tonya and expected to hear that Maliya was doing better. When I reached her later that morning, I fell back onto our couch, unable to believe what I was hearing. She told me that Maliya wasn’t going to make it, her heart was too weak. I had been on Tonya’s side of the story for almost a year, sharing with people that my son was sick, telling friends that the doctor’s didn’t think he would make it through the night and eventually sharing that he had passed away. At that moment speaking to Tonya, I understood how everyone else must feel when they talk to me. Helpless. Wordless. Overwhelmed. I was unable to form a thought, let alone a sentence. Disbelief and anger shot through my body. “No,” I thought to myself while trying to offer something comforting to Tonya, “not Maliya. Not after everything she has been through.” I was heartbroken over Maliya’s death, knowing the pain that her parents were feeling and being deeply familiar with the grief journey they had just entered into. When Will passed away I kept having this feeling that he was somehow missing out. I was mad that he didn’t get to grow up. I was mad that he didn’t get to experience all the things that this world had to offer that we so often take for granted. I felt the same way about Maliya. Then I remember that while we might be missing their lives here on Earth and desperately wanting them to be here, Will and Maliya and all the children gone too soon, they aren’t missing out on anything. What they have gained far outweighs anything this world has to offer.
“Give me Jesus, you can have all the world,just give me Jesus” - Jermey Camp
I sat at my desk on a cold sunny day at the end of January with my computer propped open. My girls were napping and my son was at school. Our home was quite and peaceful as I turned on the live stream of Maliya’s funeral service. I watched as the camera zoomed in to show her laying in her tiny casket wearing a beautiful white gown, looking perfect and whole. I listened to the stories of how Maliya’s short life had touched so many already and then tears streamed down my face as I listened to Maliya’s mom speak about her daughter. We didn’t have a funeral for Will. I still can’t bear to imagine what that would have been like and I'm not sure I would have survived it. Amidst all the sadness and pain and grief, Tonya stood there, in front of a crowd of people and spoke about her daughter and about Jesus with so much grace and confidence that I was left completely astounded and in awe. Watch the video below and you will be too.
I have copied the letter that I wrote and read for Maliya below. It’s hard to put words together that adequately express the impact that Maliya has had on my life. She is special and she will continue to bring glory to God until we are all reunited again. I am so thankful to know this family and so grateful for the life of sweet Maliya, she will forever hold a very special place in our hearts and lives.
You are a very special little girl. I remember getting a call from Dr. Ettedgui in the summer asking if we'd like to sponsor you to come to Jacksonville for heart treatment. Without hesitation I said yes. You arrived and I got word of how sick you were, we prayed. I was never brave enough to come to the hospital to meet you. My little boy, Will, passed away there a few months before you arrived and I couldn't bring myself to go back. I did get to meet your parents though. They love you so much. The first time we met we sat at dinner, listening to your story in awe of all God had already done in your short life. You, my dear, are a miracle. I felt an instant connection with your mom, she was so brave, so confident yet sweet and thoughtful. She handed me a thank you card, a touching hand written note expressing her gratitude to us for sponsoring you through Patrons of the Hearts. I felt like I was the one who should be thanking her for showing me such genuine, courageous strength.
You went through your first surgery and you were doing so well. In October I was at Disney World with my children. I was strolling my youngest daughter, Caroline, while she was napping when I got a text from your mom. You had declined and the doctors were scared your heart was getting weaker. All the feelings I experienced when my son was sick came flooding back and I ached for your mom and dad. I prayed for you and asked God to heal you. He did. You got better and got to stay with us longer to undergo your second procedure. Your daddy had to go home, he needed to work and get your house ready for your return. You mom stayed here. She spent every single day with you, taking care of you and learning all she could. She is so smart. I loved getting to spend some time with her. We went to dinner and we even got to go shopping for you. She was so excited to pick out all the things you needed as you got ready to go home. While you were here everyone fell in love with you. All your nurses and therapists still talk about you with such fondness. You truly made an impact on us.
After four long months, you were discharged from the hospital and came back to the Ronald McDonald House with your mom and dad. Finally, I got to meet you. I was sitting in the hallway, talking to your mom when you dad walked out with you. You were so tiny, buried in his arms and at first I could barely see you. When I got a closer look I saw that you were the mighty little girl that I had heard about for all those weeks. I remember when we first met your parents your mom told me that you had never been home. You went straight from the hospital in Grenada to Wolfson Children's Hospital. Looking at you, I imagined the joy that your parents would feel walking through the door of your house with you for the first time the next day. Your mom was thrilled, beaming with excitement.
I don't know why some lives are short and others are long. I want my Will to be here with me every day and I know your parents want you back too. I don't know that we will ever fully understand why you, and Will, were only here on Earth for a short time but I am confident that you made a bigger impact in your short life than most of us will make with a long one. Your life has and will continue to glorify God, who created you. Your parents will never stop telling your story and you will continue to inspire people from all over the world. You have already impacted a community miles and miles away from your home. During our first dinner with your parents, your dad said that he wanted to write a book one day. I hope he does. Your life is precious and I look forward to seeing you again one day. Until then, know that we love your parents and they have a whole community who loves them too. They will be sad and miss you every single day they continue to live on this Earth. But thank God that we have hope in Christ. We rebuild our lives on that hope. You showed us how, Maliya. You showed us how to be resilient, tenacious and unwavering. I pray my daughters have your fighting spirit. 2 Timothy 1:7 says,"for God gave us a spirit not of fear but of power and love and self-control." That's you, Maliya. Afraid of nothing but full of love.
All my love,
Courtney, Will's Mommy"
One year ago I woke up after a sleepless night of worry. One year ago I fed my little girl, laid her down for an early morning nap and got in the shower. One year ago I grabbed a purple long sleeve shirt from my drawer. Black leggings. Running shoes. One year ago my husband walked in the door and I whisked past him. I drove fiercely to the hospital and whizzed through the dark parking garage until I found I spot. One year ago I put my car in park and for the last time walked the path into the PICU. I rounded the corner and saw my son at the end of the hallway. For the last time I rushed into his room, hoping to find that he had improved overnight but knowing that he had not. One year ago I looked at Will and I knew that his time on Earth had come to an end. On this day, one year ago, I held my little boy for the very last time and on this night, one year ago, he took his final breath.
On that day and the days and weeks immediately following, it was hard to imagine getting to this day. The day that would mark one year without Will. How would I survive a year without my child? How could I survive a whole year of this pain, this hurt, this grief? A week, a day, even another hour seemed like to much to bear. Over the past year this amazing, unsurprising thing happened - time kept moving on. The minutes kept passing and weeks went by just like they normally do and now we have arrived at this impossible milestone. One year.
I recently listened to Rachel Hollis’ interview with Joe Biden. He was discussing his new book, Promise Me, Dad, about his son, Bo, who passed away from brain cancer. What I didn’t now about Joe Biden is that he also lost his first wife and young daughter in a car accident when he was about my age. Unimaginable loss. But he has gone on to lead a meaningful and purposeful life, professionally and personally, and it was inspiring to hear him talk about how he continued to move on, all these years after his devastating losses. At one point in the interview he says, “There is hope to survive that kind of loss and I believe you survive by finding purpose.” Nothing has been more true in my life this past year. Finding purpose has enabled me to move forward audaciously into a life I never imagined I could live without my son. Purpose as a mother and a wife that I never had before. Purpose in building a way to help other children who don’t have access to the type of care our babies did. Purpose in bringing together and impacting my community. Purpose in sharing the Gospel with every single living and breathing soul I can find. There is just one slight change I would make to Vice President Biden’s remark - I would change “survive” to “thrive.” Finding purpose isn’t just about surviving, it’s about thriving. I don’t want to merely survive until the end of my life, I want to thrive. I want my family and my children and my friends and my community to thrive as well. I believe we will.
When I think about the time passing without Will I often feel torn. One on hand, each day represents one day further from the last time I saw him. One day further from the last day I held him, kissed his sweet little face and wrapped his tiny fingers around mine. But each day is also one day closer. One day closer to when I take my final breath on this Earth and enter into eternity with Christ. One day closer to being face to face with God. And on that day he will be there, waiting for me to hold him in my arms again. It’s hard to imagine the pain ever going away after a tragedy or a loss and honestly, I don’t think it really does go away. I think instead of leaving, it just learns to lay dormant. First, for short periods of time and then a little longer. At first it occupies all the space in your heart and mind and it’s overwhelmingly present all the time. Over time it slowly lets joy enter back in and makes room for laugher and happiness and fun. The pain is still there but it learns to hide. Sometimes predictably and sometimes all the sudden it comes back with full force. It has to be always present because if we didn’t have the pain then we would have to give up all the love along with it.
Since I have young children and toddlers, my only illustration for this is, of course, a children’s movie. My children love the movie Inside Out and recently I noticed how clearly this idea is illustrated as one of the main lessons in the movie. In the beginning, the main character, Joy, is constantly trying to get rid of Sadness. She sees sadness as pointless, always causing trouble and even tries to get her to stay inside a circle - a circle of sadness - so she doesn’t mess anything up. Throughout their journey, Joy and Sadness experience a lot together and they have to work together to get back to headquarters (if you haven’t seen the movie I know this makes absolutely no sense!). At the end of the movie when everything is fixed, we realize that Joy can’t exist without Sadness. It’s even apparent in her physical appearance. All the characters are represented by one single color - Anger is red, Disgust is Green, Fear is purple and Sadness is blue. Not Joy. Joy is mostly yellow but she has blue hair. To me, that describes this past year more than anything. Mostly yellow with blue on top.
Sometimes one year ago seems like a lifetime away and others it seems like yesterday that I was holding Will in my arms. I can still imagine exactly what his little fingers looked like, how he smelled and how the indention above his lip looked like a tiny tear drop. I can easily take myself back to that hospital room, sitting in that red plastic chair with the curtains drawn and lights dim, and feel all the same emotions I felt that day. This milestone is going to come every year for the rest of my life and while I know it will always come with the type of acute pain that milestones bring, I want to use it as a marker to remember Will, all the love I have for him and all the ways that his joy has inspired others. It will always be a sad day, I’m not sure I can ever change that, but I hope that it will also be a day of hope. Hope in the future and hope in Christ.
“When we've been there ten thousand years
Bright shining as the sun;
We've no less days to sing God's praise
Than when we've first begun.”
When I was expecting our twins, I imagined their first birthday party, as I'm sure many pregnant moms do. As the day approached, I realized that I had barely thought about it, which is highly unlike me - I love planning and creating and details especially for my children. I thought maybe we should do something low key, Caroline was turning one after all and I didn't want to overwhelm her with a bunch of people. On the other hand, her life is a miracle and we should celebrate that! After some thought, discussion and encouragement, that's where I landed and planning a huge first birthday bash for our girl commenced. I designed the invitations, made the guest list, choose the cake and made the decorations. I distracted myself with every possible detail until I finally ran out of things to do. I had to face it. I had to face the one detail that I had been avoiding because it was too painful. I had to face how I would include Will in her party.
It was supposed to be some kind of twin theme with pink and blue decorations, something cute and fun. I wasn't supposed to be coming up with ways to remember her brother because he was supposed to be there, crawling around, smashing cake and looking confused as to why so many people were staring and smiling at him. Nothing seems right these days.
We included Will in some really special ways and the day ended up being less painful than I had imagined. I was prepared for the worst. We invited many of the doctors and nurses who took care of our babies and it was really special to see them. I could tell how excited they were to see Caroline, so big and healthy. We had so many friends and family join us, giving me little hugs and sweet glances, saying what didn't need to be said in words. I didn't cry or get emotional when we sang happy birthday. I just focused on my baby girl who had survived a terrifying brush with death in awe of her presence, determination and perseverance. I was reminded, as I am often, how blessed I am to be her mom and how much hope I have for her life. Instead of gifts, we asked all our guests to bring a note written to Caroline for her to open on her sixteenth birthday. I watched the notes pile up in a little wooden basket and imagined that day, when she is a bright-eyed teenager reading those letters for the first time. I have wondered many times when she will realize what a treasure she is, maybe that moment will be the one.
Our girl had a great day, she won't remember it but we have a lot of sweet photos, notes and memories to share with her when she is older. It seems like a huge milestone that we are now past, but at the same time it feels like just the beginning of a lifetime of celebrations, milestones and special days that will always be missing one very important person. Happy birthday, babies, you are loved and cherished.
A few ways we included Will - a photo collage displayed from the twin's birth and an actual height and weight bear made from Will's clothing and blankets. We got three of these handmade from The Pretty Piggy and gave one to each of our children for Will's birthday. I hope they will cherish them forever as much as I do!
The doctor who saved Caroline 's life and one of our favorite nurses who took care of Caroline and Will made the celebration extra special!
Some of the decorations - a yummy cake, monthly photos of Caroline and a special plate for her to have as a keepsake. Whenever I glanced at the plate I seemed to always fixated on the number of days - 365 days - just the beginning of her life. Will only got 96.
We got these sweet cookies made as favors from Bake or Eat Sweets. She had the idea to do a "twin cookie," which I loved! I choose the little hedgehog to represent Will because he had a hedgehog blanket that he used a lot in the hospital.
I just finished listened to Learning to Walk in the Dark by Barbara Brown Taylor. It was an interesting read in which Taylor explores our discomfort with the dark. She studied the dark in many different ways, from exploring a cave to participating in a simulation of what it is like to be blind, and shared what she learned about herself, about God and about the world in the dark. In this exploration of the dark she inevitably encounters light but in new and different ways than we may be accustomed to. At the end of the book she writes, “Do I want the kind of light that shines on things or shines from them.” I haven’t been able to get that out of my head. On or from. A simple preposition but it makes all the difference. I don’t know if this is what she intended, but my first thought was in regards to people, specifically Will. Light shone from him. There was an undeniable quality about him that I can’t quite name but something about him could only be described as light. Good, pure, innocent and bright. I started thinking about people who shine light from within and when I really got to thinking about who I know that possesses that unspecific quality of inner brightness I could only identify a few. Then I started thinking about what those few have in common, what it is that makes them shine light from within. Maybe it’s joy. Maybe the people who have the most joy somehow spill it over to all of us and that joy hits us like headlights on a dark night. Or perhaps it’s strength. The ones who are strong and incorruptible might beam their light upon us by showing their might. It could be the generous ones. The ones who are always giving, thinking of others above themselves and letting the generosity that lights their hearts on fire pour over into the lives of those around them. I think it might be these people, they might be the ones who shine a light from within - the joyful, strong and generous. But I think the brightest ones, the ones who exude the shiniest light with the most consistence, are the grateful ones.
We sing a song at church sometimes called “So Will I.” It’s a beautiful song and for some reason it makes me think about Will every time we sing it. I imagine him in Heaven with this magnificent God described in the song. One of the first lines in the song is “You spoke to the dark and fleshed out the wonder of light.” God made light out of darkness when He created the universe and I believe he is creating light out of darkness again right here before our eyes. Having sick children, holding Will in my arms as he took his last breath and every day after that has been dark. But God. But God has made it into light. Will’s light shines into the hearts of every child we have the opportunity to impact. God is using what could steal our joy and destroy our gratitude for something that honors and glorifies Himself. More people will know about Jesus because they know about Will. That’s my hope anyways. The end of the song goes like this:
And as You speak
A hundred billion failures disappear
Where You lost Your life so I could find it here
If You left the grave behind You so will I
I can see Your heart in everything You’ve done
Every part designed in a work of art called love
If You gladly chose surrender so will I
I can see Your heart
Eight billion different ways
Every precious one
A child You died to save
If You gave Your life to love them so will I
Like You would again a hundred billion times
But what measure could amount to Your desire
You’re the One who never leaves the one behind
I don’t think there is anything I could write to describe how I feel about Will and what God is doing through his life better than those lyrics. I can see His heart in everything He has done. Every part a work of art called love. If He surrendered His life for mine, I will surrender mine for His glory. It might not look the way I hoped for or desired. I would gladly hand everything back if I could just have Will with me. But this is where we are, a path intended for evil that God is using it for good and I will be grateful. It comes with pain and heartache and loss over and over again. Every single day. When I look at my children, His children, the ones who He died to save from an eternity apart from Him then I can see clearly, knowing what is good and pure and light. “Go therefore and make disciples of all nations” (Matthew 28:19). ALL. If God has given us a light that shines from within us then we are called to shine that light on all people. With joy and strength and generosity and gratitude we move forward, one day at a time, missing Will but striving to remember the light he had within and letting it energize us to do all that God has called us to.
My city smells like burnt coffee. This city has been my home since I was ten years old. As a teenager I used to run before the sun came up and inhale the familiar smell wafting over from across the river. At 5am, a group of avid cross country runners from my high school team would meet on the side walk in front of a red brick church in my neighborhood. We would run the same course, same distance, every single Tuesday morning. Through the quint and quiet neighborhoods, down to the river walk and past the restaurant where my friends surprised me for my sixteenth birthday. We rounded the giant fountain, weaving our way through the parking lots of downtown and up to the children’s hospital. We stopped there at the corner to regroup. The fast runners stretched and jogged in place while the rest caught up. Once we were together again we ran as a pack to cool down all the way back to the church. As a teenager I knew it as the place where I took a break, a marker of where to stop and wait. While I stretched, above me there were hundreds sick children. I had no idea. Later, as a mother, that same spot also served as a marker but in an intensely different way. That hospital now marks the place where the greatest tragedy of my entire lifetime occurred. It marks the place that saw me at my very worst, broken and devastated. It marks the place that changed my life forever.
All those times that I stood there at the corner, I remember the lights glowing from inside curtained cover rooms, seeing nurses arrive to their twelve hour shifts and watching doctors who had worked all night walk to their cars where they could finally sit down for the first time in hours. I saw it from the outside but had no idea what happened on the inside. I honestly never even thought about it. I didn’t know about all of the pain, the suffering and the unbearable realities of sickness and death that lived inside that building. I also didn’t know about the miracles that were happening behind the walls I placed my hand on for balance as I stood on one leg, stretching the other. I didn’t know that it was a place full of hope, full of love and full of people who offer deep compassion and extraordinary care for sick children. I didn’t know that the doctors and nurses that I saw walking to and from the parking garage, either arriving or leaving their long and exhausting shifts, had spent the last twelve, fifteen or twenty four hours witnessing unimaginable grief as well as precious miracles. Some of them may have delivered a terminal diagnosis to a child just hours before. Some may have witnessed a miracle over night and watched a baby live who was supposed to die. Some may have watched a mother hold her child as he or she took their last breath. Some may have taken care of a baby who had been abused or sat with a child who had spent more of their life inside those walls than outside.
I didn’t know that one day, inside that very building, I would experience life and hope and miracles. I didn’t know that I would spend many nights on the couches inside it and shed gallons of tears in the parking garages, elevators, hallways and rooms behind those sliding glass doors. I didn’t know that the same year that I was waiting outside that hospital, a very special doctor was establishing an organization that would help hundreds of children from all over the world receive life-saving heart treatment. I didn’t know that one day I would be deeply connected to that doctor, that organization and the mission being developed and created inside those offices. I didn’t know that in that building I would hold one of my own babies as he entered into eternity. Even in my worst nightmares, I would have never imagined that my life would someday include the heartbreak and pain and sorrow marked by that place. How could I know? In 2005 it was just a stopping point, a place where I waited until I could keep running. In 2018 it was also a stopping point. A place where my son’s life stopped here on Earth. In 2018 it was also a place where I waited. I waited for test results and diagnostic reports. I waited to see if my babies would live to the next day. Thirteen years ago, I stood outside the building, barely noticing the place that would one day become intertwined with my life in the most intimate ways possible. That place that glowed in the muggy night air as I ran past, breathing in the smell of burnt coffee.
We travelled home the Saturday after Thanksgiving and unloaded mountains of stuff from our week in North Carolina. It’s a known fact that the smaller the person, the more items they require while traveling. Pack n’ plays, portable high chairs, diapers, an endless supply of wipes, a personal mattress for said pack n’ play, snacks, bibs, spoons and of course, clothes. Traveling to North Carolina in the fall requires every type of clothing imaginable because the weather is sporadic and always inconsistent with the weather app that I thoughtfully used as a guide while packing. Bags filed with short sleeves, pants, jackets, shorts, dresses, pajamas, vests, hats, mittens and multiple types of footwear piled on our living room floor as we unpacked the car. We came home to a refrigerator that had nothing in it except a Brita water filter and some butter. The pantry didn’t look much better. The next morning I scrounged through our pantry to feed our children breakfast and after the apple sauce pouches and dry Cheerios, I headed off to the grocery with my girls.
This grocery trip was the type where I had to get basically everything in the store. It was like the first time we moved into an apartment after we got married and I loaded my very first adult grocery cart with what seemed like a few hundred items to stock our kitchen. Usually I am a very organized grocery shopper. I make a weekly menu, find all the necessary recipes and list out my ingredients. I then write the food items together in groups based on where they will be in the store and what order I will shop for them. All the produce is listed first, followed by food found in the isles, then refrigerated and last frozen. This is my system. Call it type A or obsessive or drill sargent-y but my goal is to go to the grocery once per week for the full haul and a second time to restock on produce. Intentionality and productivity are the name of the game when it comes to the grocery list system. I’m also not a huge proponent of unnecessary lolly dottlying, dilly daddling or any such nonsense. Anyways, on this day, I had quickly jotted down the list during the apple sauce and Cheerios situation, which included lots of whining because there were no waffles and complaining over cups of water instead of milk. My list was unorganized and incomplete and I found myself running around the store, forgetting items, back tracking down isles several times and trying to do it all at warp speed so that my two little girls wouldn’t start melting down because of prolonged restraint in the shopping cart. For those of you who personally know Emma Grace, my darling middle child, the following will not surprise you. In the middle of this shopping extravaganza I turned around to see that she had grabbed a box of kleenex off the shelf and proceeded to rip it open and make small pieces of “snow, Mommy,” as she ever so cutely described, from the tissues inside. Poor Florida children, creating their own snow from anything they can get their hands on. This kind of stuff doesn’t usually fluster me, maybe because it happens rather frequently and I’m used to it or maybe because I know so deeply how quickly they could be gone and therefore don’t sweat the small stuff. So I just smiled and told her how silly she was and continued to let her make a complete mess in the bottom of the shopping cart. Don’t worry, I cleaned it up and paid for the tissue box as we left.
During this entire scenario with the rushing and forgetting and the tissue snow, I overheard a conversation at the end of the isle. It was between an employee and a shopper. It was obviously a frequent shopper because the employee knew him by name and stopped to chat. “How was your Thanksgiving?” she asked, as he was placing a few items into his basket. “Oh, I don’t celebrate it,” he muttered in a deep voice. I imagine this employee was regretting that she engaged in this conversation, however it would have been rude to stop there, so she was now fully invested. I was intrigued and will admit to acting interested in the ingredients in canned soup so that I could hear the rest of this conversation. “You don’t?” the employee asked hesitantly beginning to walk down the isle next to the man, “why not?” The man was tall, he had on a plain white V-neck and green cargo shorts, he looked to be in his late 50’s or early 60’s. “Nothing to be thankful for,” he said, matter of factly. I’m not really a crier, in fact my family makes fun of the fact that I never shed a tear in any movie, except for Homeward Bound because, well, how can you not? But I stood right there in the middle of Target, staring at the calorie count in chicken noodle soup surrounded by tiny pieces of fake snow, crying. It wasn’t like a total meltdown, just some tears that I quickly got under control, but still, I cried in Target. How horrible must this man’s life be that he has nothing to be thankful for? Nothing? How tragic to go through life with nothing or no one to be grateful for. I couldn’t help but feel so sorry for him. Maybe he did have things in his life to be thankful for, just a terrible outlook, but either way, it made me so sad to think that someone out there feels so discouraged, so traumatized, so beaten down that they can’t even celebrate Thanksgiving.
A lot of times I think that losing Will makes me some kind of expert in heartbreak. Somehow my loss is the greatest of all losses and my grief is the more than anyone else’s. The truth is that everyone has a burden, a loss, a heartache that they carry. Comparing those pains does nothing productive, it only divides and we need each other, especially in mourning. It causes the one who thinks that they carry the greatest burden to feel bitter and the one who is perceived to carry the lesser burden to feel inferior or maybe even weak for not being able to deal with their “smaller” burden as well as the other person handles their “bigger” one. Gratitude combats bitterness. Practicing thankfulness, I believe, is vital.
Ever since we started going to the Church of Eleven 22 in Jacksonville five years ago, we have been encouraged by our Pastor to make a list of things we are thankful for. One for every year we have been alive. There have been multiple times that he has read us his own list during a sermon. So here is my list, 30 things I am thankful for and I could keep going with ease. I pray one day the man I overheard in Target can have a list like this too and maybe then he can experience the joy in celebrating Thanksgiving.
We found out we were having twins in April 2017. We were so excited. I could tell by other people’s reactions when I told them that I was pregnant with twins that a lot of people would have different feelings about that news if it were happening to them. We didn’t feel scared or overwhelmed or disappointed. I was more anxious about the twin pregnancy than actually having two babies. A few months later we found out that there was a boy and a girl. It was perfection. The pregnancy was not much different from my previous two pregnancies until the very end. I was bigger and more uncomfortable but there were no major complications. Every ultrasound and check-up went well and the babies were healthy. I had a c-section scheduled for December 18, which would have been 38 weeks and 1 day. One of the major risks of twin pregnancies is pre-term labor, but since I had never gone into labor on my own during my other two pregnancies I wasn’t overly concerned about it. On the last day of November we were putting together our huge, four seat stroller. Our two older children were testing it out and I remember having to sit down because I had a little bit of pain. It didn’t even cross my mind that it was a contraction. It was not that painful and I was almost 36 weeks pregnant, so little aches and pains were not abnormal. That night I woke up around 2am with more pain, it wasn’t consistent or regular so I thought it was just round ligament pain or braxton hicks contractions. Once my OBGYN opened the next morning, December 1, I called to make an appointment just to get checked and make sure everything was okay.
We took our oldest son to pre-school and my mom came to get my daughter so Taylor could take me to the doctor’s appointment. I was in enough pain that I didn’t think I could drive but I still didn’t think it was labor - smart, huh? So I didn’t think at all that we would be having our babies that day, I thought the most extreme thing that might happen is I would have to go on bed rest - another common occurrence during twin pregnancies. We got to the OBGYN and after a few questions from the doctor he said, “You are in labor, I’m going to get a nurse to take you over to the hospital so we can try to stop it.” I was 35 weeks and 5 days pregnant, so while the babies were not extremely premature, it would still be beneficial for them to grow inside me a few more weeks. As I got wheeled over to labor and delivery the pain started to increase and I realized that I really was having contractions. I got signed in and hooked up to everything and then we waited to see if the medications I was given would stop the labor. I remember being fearful of what would happen if we had the babies that day. They would be considered “late-term preemies,” but I didn’t really know what that meant. How underdeveloped would they really be? Would they have trouble breathing? How small would they be? I kept asking people, the doctor and nurses, and they said that no one would really know until they were delivered but that I was far enough along that they would most likely be okay.
So here’s the thing about labor - it’s really painful. Obviously, right? It’s called “labor” for a reason, but like I said before, I didn’t go through labor with my other two pregnancies so I didn’t know. My first was breech, so I had a scheduled c-section. I tried to have a VBAC with my second, but at 41 weeks with no signs of labor and an almost 9lb. baby inside me the doctor thought that another c-section was the safest way to deliver. So while labor was really painful, usually you have the hope of delivering a baby at the end of it and then it’s all worth it. I had no hope of delivering any babies, I knew if they didn’t stop the labor I would be having surgery. So every hour that went by the contractions got stronger and closer together until finally it felt like one long painful contraction. Needless to say, nothing they did stopped my labor. So finally around 4pm (about 7 hours after we arrived at the hospital) the doctor thought there was no way we were going to get the contractions to stop and he was ready to move forward with a c-section. I was worried about my babies, but after going through hours of what felt like frivolous labor I was ready to meet them. We got moved into a delivery room and prepped for surgery. It was my third time having a c-section in a five year period, so I was very familiar with the procedure. The worst part is getting the spinal, it’s painful but I was exhausted and ready for some relief. The medication always makes me nauseous, so I remember feeling very out of it, sick, worried about my babies and tired. At 5:05pm, “Baby A,” was born. Will was 6lbs., 3oz. and came out crying and healthy. Caroline, “Baby B,” was born one minute later at 5:06pm, 5lbs., 13oz. and just as healthy as her brother. I got a quick look at each of them before they headed to get cleaned up and checked out with the nurse and Taylor. I was relieved and so happy. We had a perfect baby boy and perfect baby girl.
I was exhausted and medicated, so I don’t really remember much between the babies being born and getting to the recovery room. I remember holding both babies, putting their little heads next to each other and just being in awe that they were both living inside me just hours before. That night was like any with a newborn, trying to help them learn to eat every few hours, waking them up, doing all the tricks to help them latch and being so happy when they did. The next day we introduced Caroline and Will to their siblings. Their older brother was so sweet and excited to meet them. He held Caroline first and Will second. Will looked just like him. That day the babies were declared healthy by every doctor and nurse that saw them. I loved holding both of my babies together. I loved holding one while my husband held the other at the same time. I loved laying them next to each other and just taking in how beautiful and perfect they were.
It’s hard to think back on those days in the hospital and know that at some point someone brought a virus into our room that ended up taking Will’s life and almost taking Caroline’s. It's most painful to think that it could have been one of us, one of my kids or even me who was carrying the virus. It really doesn’t matter how they got exposed or who gave them the virus, it is totally out of our control, but it still makes me feel sick to think about something invisible but deadly passing into their little bodies that day. Those first few days with them were some of the best days of my life when they were happening, but looking back they are clouded with guilt and regret and anger. What if they were born just one day earlier or one week later. What if they had waited until my scheduled c-section. I could, and believe me I have, wrestled with “what ifs” but the fact is that God knew exactly what was going to happen. He knew before the beginning of time what day our babies would be born, who would be there and what would happen. He gave us a beautiful, perfect and healthy baby boy and instead of thinking back on everything that went wrong, that was right. So today when I think back to my babies’ birth day, I try to think about what was right and good. I try to remember the feeling I had holding my babies together and how tiny and perfect their little hands and feet were. I try to remember the joy on Joshua’s face when he held them for the first time and how he talked to them and laughed and smiled. I try to remember all that was whole about that day, all that was perfect and good and right and pure. I try to remember Will.
Our mission is to glorify God by supporting children undergoing life-saving heart treatment and creating a caring community for their families in honor of our son, Will.
My name is Courtney Hughes and I am Will's mommy. I am happy that you are here to read Will's story and make a difference with us!