The world is in the middle of a crisis. As I’m writing this we are in the middle of the coronavirus pandemic that is sweeping not just our nation, but our world. People are being asked to stay at home to slow the spread of this highly contagious, sometimes deadly virus. Schools are closed. Restaurants and small businesses are offering take out and curb side service only. People who can are working from home. People are panic buying all the nonperishable foods and toilet paper in every grocery store across the city. Hand sanitizer, disinfecting spray, Clorox wipes, excessive hand washing and staying at least six feet away from other people at all times are massively popular right now. I went to the grocery store over the weekend and there are sanitizing wipes at the entry and employees walking around with the sole job of wiping down handles and shopping carts. People are walking around wearing hospital masks and gloves pushing overflowed grocery carts and skirting to the edge of the isles to keep their distance from other shoppers. It’s an uncertain time, everything is different and sometimes even a little scary. We know that coronavirus can be deadly for older people and those with certain underlying health conditions but it can even have a severe effect on young, healthy people. It’s new, we don’t know a lot about it and we are desperate to protect ourselves and our families from coming in contact with it. An invisible enemy. Many of us have never experienced anything like this before - the social isolation, the extreme precautions, the anxiety. We have. Two years ago we experience it all. Let me tell you about it.
When Caroline and Will were in the PICU we lived in the same type of reality that the world is living in today. The rest of the world didn’t join us and the media wasn’t constantly adding to our anxiety, but there’s an eerie similarity to how we are living now and how we lived then. Our babies contracted a virus at birth, enterovirus. It was likened to the common cold, something that may have a mild or no affect on a healthy child or adult who contracts it. In fact, we were told that we have probably all had it at least once in our lifetimes. However since their immune systems were new and weak the virus attacked every organ in their bodies, causing multi system organ failure, meaning one organ after the other stopped working or almost stopped working. They were in the PICU with multiple interventions - medications, ventilators, EMCO (a lung and heart bypass machine) and dialysis. If they had contracted another virus or illness during their recovery they would have had very little chance of getting better. We were hyper aware of what could happen if they came in contact with another virus or bacterial infection, we knew they would probably die. So we did all the things the world is doing right now. We washed our hands until they were raw, hundreds of times a day in hot water. We showered and changed clothes before going to the hospital and right when we came home. No shoes in the house. Limited trips to the store. Lots of grocery deliveries that were immediately sanitized before going in the pantry. We rarely saw anyone, not because we didn’t want to but because we weren’t willing to expose ourselves to potential germs that could be passed to our babies. If we did see neighbors or friends we kept our distance and stayed outside. People would ask to come give us a hug or go on a walk and we mostly had to decline because we knew what might happen if someone unknowingly passed a virus to us. We knew that sometimes people can be carrying a virus with little or no symptoms. Nothing really felt safe. We didn’t have a term for it but we were social distancing in an attempt to protect ourselves and our vulnerable babies. When we finally got to hold the babies we put on disposable hospital gowns and sometimes we even wore masks and gloves. They were “on contact” for the first few weeks in the PICU, meaning before anyone went into their room they had to wash their hands and put on a clean gown, masks and gloves. The day would end with a giant trash can full of pale yellow paper gowns and purplish blue gloves overflowing from doctors, nurses, respiratory therapists and us going in and out.
When Caroline came home on January 1, 2018 nothing changed, in fact I probably got even more diligent with cleaning and keeping her safe. I sanitized our entire house, washed every sheet, towel and anything else that could possibly be washed in hot water before she came home. She barely went anywhere for months and if she did she was in an ergo attached to me. I didn’t let people hold her, touch her or breath too close to her. I am not typically a very confrontational person but there were plenty of times that I had to say no when people wanted to hold her or got too close to her. And when people put her health in danger by not following these requests, I let them know how their irresponsibility could cost us her life. We kept this up for about a year and honestly it has never truly worn off. I have always been germ-conscious, especially when it came to babies. With our first two children I made the very limited visitors we allowed to come in those first few months wear hospital gowns if they wanted to hold our baby. Everyone was asked to wash their hands and wear hospital masks if they were unvaccinated. When someone sick came to visit our first son when he was only a few months old I was distraught. I didn’t understand how anyone could be so irresponsible and made it a habit to routinely ask if a person was sick before they came over. It probably seemed overkill to many, but we were the ones with someone to loose.
That’s how I feel about the coronavirus, maybe we are overreacting, maybe it’s too much to close everything and socially isolate. I am not a fearful person and I don’t think we should be responding in panic, but if you are someone or love someone who is at risk, I can guarantee that nothing seems too outlandish if it will keep those you love safe. I have a high risk child, not Caroline, but her sister has asthma and so do I. I promise it’s worth protecting her, even if it’s incredibly inconvenient. The world desperately needs her here and if you know her you know there is no truer statement. She is a magical child with endless enthusiasm and energy. We can’t loose another one. The children we support through The Will King Foundation who have CHD, they are all at high risk and so are many others. If you fall into this category or if your child or someone you love does, I understand. I know the fear and the anxiety of passing a virus on to someone with a weakened immune system. In fact, I am pretty confident that someone in my family gave enterovirus to our twins. I don’t know who because none of us felt sick but it’s a virus, like the coronavirus, that someone can carry with no symptoms. It only makes sense that someone who was in close contact with them is the person who gave it to them, it likely could have been me. I promise it’s a hard reality to live with. If you are at home with healthy children I know it might be overwhelming. School at home, disrupted schedules, parents trying to work from home, missing our friends, deep cleaning and cooking one million times a day. I know it’s hard, I’m doing it too, but let’s remember to be so extremely grateful that we get to spend some extra time with our children at home. Let’s be thankful that our children are healthy and safe. Let’s make the best of the time while also taking time for ourselves, because I think periodically social distancing from our immediately family is just as real as social distancing from the rest of society right now. What I know for sure is that we cannot let fear and insecurity become an excuse to be unkind. Instead, we can view it as an opportunity to learn, grow and be thankful because anytime we experience something hard it always changes us. Our time with two babies in the PICU left us much more aware, more protective and incredibly grateful. For some of us, the coronavirus will cause true trauma, but thankfully for most of us it will be a mere inconvenience. Either way, I hope when this is all over it will have transformed our communities in a positive way. God can make broken things so incredibly beautiful. He created The Will King Foundation out of our devastation. I can't wait to see what He will create from this. He is good, no matter what and He can be trusted.
Returning to normal life after losing Will was challenging in ways I didn’t expect. I knew it would be difficult to move forward as a family, raising our children without their brother and missing his presence in our home daily. I knew it would be especially challenging to balance celebrating Caroline’s milestones while at the same time grieving the fact that Will would not be reaching them with her. What I didn’t expect was the myriad of emotions I would experience while learning to interact with the rest of the world again, especially my friends and the people I saw every day. I found that death, especially death of a child, shifts your entire worldview in a second. At first, it was awkward seeing people for the first time after Will died. In some twisted way in my mind, I felt guilty for making someone feel awkward about confronting me or even being in the same room as me. No one knew what to say or even if they should say something. I could tell when someone wanted to give me a hug or say something about Will but hesitated, probably not knowing if it would upset me or if it was the right time or place. I felt bad when other people avoided me or felt weird around me. I took on all this responsibility for everyone else’s feelings on top of my own complicated emotions that I still wasn’t sure how to express or navigate. It was irrational, but very real to me. I was suddenly a walking reminder of every parents’ worst fear and I felt so awful for making anyone even confront the idea of losing their child. Even though it was completely out of my control I was now associated with that horrific thought and I didn't know how to handle that other than feel guilty.
As those first time encounters got fewer and fewer and conversations started returning to normal, I found myself disengaged and sometimes even angry at what people were talking about. Everything felt so incredibly trivial to me. I felt like everyone’s problems and complaints and issues were so small and insignificant in comparison to what I had experienced. Sometimes I’d be listening to someone describe a hard decision they were trying to make or an argument they had with their spouse and my inner voice wanted to explode out of me and scream, “my baby just died in my arms, this doesn’t matter!” Of course I suppressed that inner voice, but sometimes I had to remove myself from particular conversations or distance myself from certain relationships for a time period until I no longer felt so angry about all the “small” problems of the world. I simply couldn’t take in anything else, the “hard things” space in my heart was overflowing with my own hard thing. I’ve heard people say that everyone is carrying something and if everyone put their burdens in a pile you would most likely want your own burden back. I didn’t want mine back. I thought that I would take literally any other burden in the pile than mine. It was too heavy. I’ve also heard people say that God never gives you more than you can handle. That definitely isn’t true.
It’s been almost two years since Will passed away. I am no longer worried about making people feel awkward and I can now listen to other people's problems without worry of an impending volcanic eruption. I hope I have been open enough about Will and his story that people aren’t afraid to ask me about him if they want to. I also hope that people know that I never expect them to ask about Will. I literally have no expectations about how other people will or should relate to me. I love talking about him and am willing to do so with anyone who asks, but I also don’t feel hurt or offended if someone doesn’t ask me about him. I am also able to listen to other’s burdens again without feeling like they are wildly insignificant compared to mine. Everyone is dealing with something hard and I am confident that I am in no position to judge whose problem is the worst nor do I want to be in that position. I’ve said before and I still firmly believe that it will never benefit anyone to compare or rank grief. If something is hard for someone I am now able to listen empathetically without the inner voice screaming how silly or small their problem is. If my friend is going through something, even if it might seem insignificant in the grand scheme of things, it’s a big deal to them and therefore a big deal to me. One of my best friends got me a book called, “The Rabbit Listened” after Will passed away (there's a video of it below). It’s a children’s book about a child who experiences a hardship and all these animals come up one by one and are sure they have the answers to “fix it.” Then the rabbit comes and is just there to listen. Immediately after losing Will I didn’t have the ability or capacity to listen to anyone else’s problems. I needed someone to listen and acknowledge my grief and heartache. That changes with time. Now I don’t need to be listened to and sometimes, depending on the person or situation, I don’t want to be listened to. I am again able and content to be the listener. At least I hope so. I think losing Will has made me much more empathetic to others. I used to be a little more rough around the edges, leaning on the side of “toughen up” and “just get over it.” Now I understand that things are hard for people. Even if it seems small to me, it might be really big for someone else and even if I can’t fully understand it, I can appreciate the emotion someone else is feeling because life is just hard sometimes. Even though I haven’t experienced many of the hard things us humans endure - divorce, loss of a parent or sibling, loss of a job, an eating disorder, a terminal diagnosis, abuse or so many other things - I can and do understand grief. I understand loss and trauma and heartbreak. I can walk into a room without feeling scared or guilty or unsure. I can listen to the problems going on in the world and in the lives of the people around me and not feel like everything is insignificant and silly. I know things are hard. I can recognize grief in someone else, even if we are not grieving the same thing. I can truly and deeply feel empathetic to even the most trivial situation because if it’s something my friend is struggling with then it’s worth my time, energy and compassion, even if I don’t fully understand it.
If you know someone who is going through something serious or a has experienced a significant loss, my best advice is to just hold on. Give them time and listen. Don't try to fix it. They will return to being the friend you want and need them to be, actually they will probably return a better friend than they were before. But when you are experiencing trauma you cannot take in anymore trauma, even if it’s small and even if it’s someone else’s, so don't expect them to. If you know someone in the middle of a hurricane, be the rabbit. Listen. You will have the space to talk about your struggles again one day but not now. If you are the one in the hurricane, it’s okay to feel all the feelings that come with it, nothing is bad or wrong. It’s okay to feel like nothing else matters. It’s okay to feel like nothing else is as big as your burden because nothing else is. It’s okay to feel angry and indifferent and annoyed. Give yourself time and space. Keep your distance from the people you need to keep your distance from. Don't feel guilty for making other people feel things solely based on your existence. There's a line in "The Rabbit Listened" that says, "And when the time was right, the rabbit listened to Taylor's plan to build again." There will come a time when you are ready to build again. Even though life will never be the same, it will be fun and exciting and full again. I have learned that I won't always be happy but I will always have joy. God makes beautiful things out of tragedy. God can turn anything that the enemy intends for evil into something good. And if you don't believe that, if you can't believe that, that's okay too. Just hold on.
If you are experiencing trauma, heartbreak or tragedy, just hold on. You will be able to have a normal conversation again one day, you will have great relationships with friends, old and new, and it won’t always be so weird.
If your friend is experiencing trauma, heartbreak or tragedy, just hold on. You will get your friend back one day, they will return and be able to talk and listen and laugh again. It might take a while, it might not, but they will come back.
Grief is weird. It changes a lot. It's different every single day and it's sometimes even different multiple times in the same day. It's triggered by all the things your expect and even some (many) things you don't expect. It's not bad and not something to feel guilty about. It might get worse but it will get better. Just hold on.
“Working hard for something we don't care about is called stress. Working hard for something we love is called passion.”
― Simon Sinek
What would you do if you knew you wouldn't fail? It’s been almost two years since we started The Will King Foundation. It feels like forever and yesterday all at the same time. I didn't have the tools, experience or education to start a non-profit, but my "why" was big enough to keep us going. I took advice from Emily P. Freeman (and apparently Princess Ana) and just did the next right thing. I have run into some roadblocks along the way, but the thing about blocks is that they can be knocked down. Sometimes the blocks were wobbly and easy to push over. Other times they were strong and seemed impossible to move. I’m sharing a few of the lessons I’ve learned over these past two years in hopes of encouraging someone else out there who has a dream in their heart and needs to find the courage to start or a gentle push (or shove) to keep going.
PS - don't miss the free download at the end of the post!
1. You will feel insecure and incompetent. I have had to learn everything. Everything. How to create a website, how to craft a mission statement, the difference between a mission and vision, how to use social media to share our mission, how to fundraise, how to have meaningful relationships with donors, how to set up an email list, how to find sponsors for an event, how to find the right people to plan said event, how to communicate our why, the list literally goes on. Most of the time I have felt so stupid, really really frustrated and like the eyes of the world was watching me to see if I had the ability to learn the next right thing or if I would fail. I have walked into many meetings where I was the one with the least experience, least knowledge and least understanding of what was going on. I have asked a lot of questions. Many of those questions have made me feel incompetent and asking them makes me so insecure. For all my fellow Enneagram lovers, come down this rabbit trail with me for just a minute. I am a three on the Enneagram, also know as the performer or achiever. Threes are driven by feeling successful and admired. They are highly productive, highly motivated people with lots of energy but their pit fall is vanity. Us threes are the people pleasers of all people pleasers and we care a whole lot about what other people think of us. Feeling incompetent or unsuccessful is a three’s worst nightmare. See where I’m going with this? If you are starting something new and unknown you have to be okay with being dumb. That doesn’t mean you have to stay dumb, in fact you defiantly shouldn’t, but you have to get comfortable with the feeling of incompetence because if you are continuing to grow and learn, I’m guessing it will be with you for a long long time. I have resolved that this feeling of insecurity is sticking around and I have shifted my mindset to view it as assurance that I am growing and getting better.
2. You will succeed if you are willing to be the one who refuses to stop. How many times have you started a diet or a workout plan, a devotional book or anything that requires consistency and just stop when it gets a little bit hard. How easily do you give up when there’s the tiniest bit of tension, a little setback or even a massive, catastrophic mistake? If you care about something enough, you have to refuse to give up, regardless of the setbacks, disappointments and difficulties. I would bet money that if you ask any successful person how they got to where they are, they would tell you that they simply refused to give up. Make persistence your number one quality.
3. You need to surround yourself with people who are smarter, better and more experienced than you. The moment you find that you are the most experienced or the most knowledgable in the room, find a new room! When I don’t know how to do something, which is most of the time, I find someone who does. One of my very best friends is an expert in non-profits and she has a passion for helping new non-profits establish their mission, define their goals and make a plan to reach them. I ask her literally everything. There has not been one big decision, idea or major change that hasn’t gone by her first. When it was time to get a team together to plan our first fundraising event I thought about which of my friends had the skills that I didn’t. I found someone who knew everything about non-profit marketing and fundraising. Someone with experience chairing fundraising events similar to the one we were hosting. Someone who was creative with an eye for design and event planning. If you are starting something new never ever be the smartest one in the room. Surround yourself with people who know way more than you and humbly seek their guidance and advice.
4. No one cares as much as you do. NO ONE. I am blessed. I have an amazing community who truly, deeply cares about The Will King Foundation. I have friends who are passionate and have devoted hours upon hours and continue to support me and us and the foundation with everything in them. They don’t care about it as much as I do. And guess what I learned the hard way - I cannot expect them to. The Will King Foundation will never be as personal to anyone as it is to me. Not to my family, not to my closest friends. I am Will’s mom, this is the path my little boy set us on, I chose to walk down it, not stopping. I care the most and I always will. And that is OKAY! If you are beginning anything for the first time and it’s something you are deeply passionate about then don’t expect anyone to bring as much energy and enthusiasm to it as you do. No matter how deeply anyone is invested they are not you. Get those people around you but don’t ever put pressure on them to give themselves to your new venture like you have. Don’t put expectations on others to care as much as you do and everyone will own your new mission in their own way, at their own level, with their own heart.
5. It’s okay to go slow. UGH! I hate this one because enneagram three (see #1). Threes are goal getters. When I have a goal I want to see it reached, crushed actually. I can see the whole vision for the Will King Foundation, one that involves international reach and thousands of children being impacted and lives being changed all over the world. I can see it so clearly, every detail of how it will happen and what it will be like but it doesn’t have to happen today. Or even tomorrow. I want to make big goals and reach them fast and if you do that then that’s great (and I’m honestly jealous) but it’s okay to build slowly, maybe even better. It took over a year for us to have a mission statement that I feel happy about. We are planning a big goal right now that we have put a three year timeline on. THREE YEARS, ugh, might as well tell me it’s never going to happen. I’m learning that it’s okay to take your time. It takes time to think through things, come up with a solid, effective plan and get others on board with your vision. Relentless forward progress. I would rather take a little more time getting people invested in our mission than accomplishing everything at lightening speed. What really matters is the people who are connected and impacted through what you are doing. You can be a goal smashing machine but doing it without making any connections with other humans, doing it without thoughtfulness and care about how it will impact others will probably leave you feeling like your smashed goals were pretty meaningless. Yes, we have big goals for The Will King Foundation. We have audacious ideas about how to reach children from all over the world and how to impact our local community but reaching those goals quickly just for the sake of reaching them quickly is not at all what I want to be about. Slowing down, thinking it through and making meaningful connections along the way is a goal that won’t be crushed overnight and I’m okay with that.
I created something for YOU. It’s for anyone who wants to start something new. It’s for anyone who has started something new but you feel stuck. Maybe you’ve run into one or more of the roadblocks I have experienced. Maybe you need some tools and encouragement to help you move forward and figure out the next right thing. I hope this Simply Start Workbook will help you. You can download it for free below!
*This link if for NEW subscribers only, if you are already subscribed to The Will King Foundation then your free workbook should already be in your inbox!
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.
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!