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.
One year ago I crumbled underneath it, begging God to heal my children. It was the day after we took Caroline and Will into the emergency room. We had spent the entire day, night and next day either in the ER or PICU. They were one week old and I thought they were both going to die. My mom and husband convinced me to go home, take a shower and gather a few things before heading back to the hospital to sleep on the couch between my babies' rooms. My mom dropped me off and I walked into an empty house. Next to a dark Christmas tree hung six stockings, two with brand new names across the top. Will. Caroline. I sobbed as my knees hit the tiles surrounding our fireplace, clinging to the stockings that I thought I might never get to fill. The scar from where the babies had been removed from my body one week ago burned. I had taken no pain medication with me to the hospital and except for Advil “illegally” given to me by the compassionate ER doctor, I had nothing blocking the physical pain of that wound. Feeling it in all it’s fullness only emphasized the emotional torment happening inside me. I made it to the shower, packed a bag and looked around, disgusted at my own home. Everything was set up just how we left it before leaving to go to our babies’ first well check. Two rock n’ plays. Two blankets. Two swaddles in their crib in our room where they had slept next to each other the night before. Their dirty clothes in the hamper beside the changing table. Bottles they had drank from in the drying rack by the sink. It was a nightmare. I never wanted to step foot in my house again.
A few weeks later I untied the ribbon holding those stockings to the hook on the mantle. I laid them across the top of my bag and carried them to the hospital with me. It was the week before Christmas and there was no hope that my newborn babies would be spending their first Christmas at home, as I had imagined it. They were supposed to be wearing matching gowns with Christmas trees on the front. I had brought them months before. Caroline’s was pink with white polka dots and Will’s was white with green trim. They matched the pajamas that their big brother and sister wore. They were supposed to be sleeping in their rock n’ plays as we opened presents, ate cinnamon rolls and watched as their siblings opened each treasure found in their stockings. Instead, I hung the stockings in their hospital rooms, behind each of their beds. They stayed there until a few days after Christmas, never filled, never opened, but there nonetheless. On Christmas Eve I had a conversation with a doctor who was certain that Will would die any day. She had no hope for his recovery. As she spoke, I glanced at the stocking behind his bed and prayed that the next year, this year, I would be filling that stocking with all the things that little boys love and proving that doctor wrong. She was right and now my heart is broken as I plan to fill the stocking with love notes from Will’s family instead of cars and legos and little blue socks.
This is Will, last year, on his first and only Christmas. According to many, he shouldn't have even made it to Christmas Day. He was so sick but had overcome a lot and we had so much hope that he would still be here with us today.
I have dreaded the day that I had to see his stocking again since the day he took his last breath in March. I have thought about it, agonized over it and even tried to make plans and justifications to avoid it. But I have young children and they need to have a magical, decorated home for Christmas. On Sunday my husband unloaded bin after bin of Christmas decorations into our house. I stared at them, lining the wall in my living room and knowing that the stocking was hidden in one of them. As I began to unpack, I was relieved with every box that was emptied without the stocking. Then, I saw it. It was in a vacuum sealed bag at the bottom of a bin, smushed together with the stockings for the rest of our family, the ones still here on Earth missing Will. I opened the bag and pulled out the stack, tears flooding my eyes and my face feeling hot as I kept moving, scurrying around the house hiding my tears from my son and distracting myself from the pain. This was the moment. I flipped through until I saw those four letters, the ones that together spell the name of my little baby who should have been napping with his twin sister while his mommy and big brother decorated the Christmas tree. Will. I hung it right where he belongs, with our family, between his two sisters, in the same place where it hung last year on the mantle. I wanted it to be different. It still doesn't seem real or right or fair but this is what it is and what it will always be. Life, never the same, always missing someone, on the ordinary days, on the special days, on the days when his absence is emphasized just a little bit more. For the next month I will see his stocking and sometimes I will cry, wishing that he was here to delight in the carefully selected gifts inside it. Sometimes I will smile, remembering his sweet blues eyes and gentle smile. Sometimes I will well up with anger, so mad that he’s not here to spend Christmas with us, to spend his life with us. Mostly I will be thankful, that I had him, held him and knew him. I will be thankful for the privilege of being his mommy and for the hope that we have in Christ, confident that I will see my little boy again one day as I join him in eternity with the One whose birth we celebrate on Christmas.
When people are put in challenging, difficult or unknown situations, they either rise to the occasion or crumble in the face of adversity. I often crumbled and was paralyzed by fear, doubt and heartbreak when our twins were in the PICU, but I am grateful for the times when God morphed me into the person I needed to be in order to handle our tragedy. I am not the person I was when Will was in the hospital, but I am thankful for the ways in which I changed in order to be the very best for Will. Everything I did was out of love for Caroline and Will and I learned that love can show up in many different ways. For me, it often showed up as tenacity, urgency, resourcefulness and protectiveness.
It was March 2, 2018. I took Caroline to a follow-up appointment with the neurologist at 9am. Everything was fine. I took Will’s bother to mother-son bingo at his school that night at 6pm. I could barely focus. Taylor was with our girls at home and my parents went to be with Will. They were texting and telling me his numbers because I kept asking. His blood pressure was low. He was uncomfortable and upset. The doctor didn’t know if he would make it through the night. His cardiac function was getting worse. We saw his foot twitching. Everything was suddenly and extremely uncertain, he was declining and I felt the world crashing down around me. After Caroline came home, I usually didn’t visit Will at night, just during the day. Caroline was only two months old and needed me at night. This night was different. This night I went back. It was late, I was exhausted and drained but I had to see my baby. There was nothing in the entire universe that could have kept me from getting to Will that night. Not just this time, but many times, I was determined and purposeful in a way that nothing could have stopped me. Whether it was insisting on having someone from Will’s family with him almost 24-hours per day when nurses reassured us over and over that he was fine there without us or demanding that doctors come to recheck, retry or reevaluate, I was tireless in my efforts. Being Will’s Mommy gave me a strength of purpose that I have never experienced before. I developed an extreme persistence and determination, a strong sense of tenacity in everything I did.
I have always been energetic and a hard worker. I don’t much like wasted time and I tend to always have a lot of projects going on at once and can get a lot done quickly. I am also a perfectionist and I like things done right. Some people probably get annoyed by it, but I think I was naturally wired to live with a nagging sense of urgency to get things done, complete tasks and move through life creating and doing. At least that’s what I thought. I didn’t know what urgency meant until I had two babies dying in the hospital. I think I became a different person for three months. I only cared about my children and getting to them. I didn’t care about sleeping or eating or exercising. I didn’t care if I cut you off getting onto the highway or breezed past a familiar face without saying hi on my way to the hospital. I didn’t respond to texts, calls and emails or really communicate with anyone because that just took precious time away from my babies. And I didn’t even care. Normally I would be so worried about what other people would think if I didn’t wave hi or respond to their text in a timely manner. Normally I would be embarrassed if someone thought I was rude, unresponsive or uncaring. But it didn’t matter because the only thing that did matter was being with my babies and fighting for them to live. When it was my turn to go to the hospital I was basically running out the door, breaking multiple traffic laws and racing through the parking garage, down the hallway, up the elevator and into Will’s room at maximum speed. His room was in the back corner of the PICU, so I passed a whole hallway of rooms on my way to his, often pushing my way through a group of doctors doing rounds or passing by people without so much as a glance. Even on the days when Will was stable I still got to him as quickly as possible, as if every second not with him was being wasted. I developed an extreme sense of urgency, more than ever before.
I have always been willing to figure things out on my own. I tend to look for the answer myself before asking some else to find it for me. I’m not against asking for help, but I like trying to do things on my own. To be brutally honest and a tad bit arrogant, this is mostly because I think I can do most things better myself than having someone else do it for me. I’m sorry if that hurts anyone’s feelings, but I share that to say that I feel I have always been relatively resourceful. At least that's what I thought. During the first few weeks that Caroline and Will were in the PICU, I didn't know how to be involved in their care. I didn't know what to do or what to ask or what to say, so I would just sit on the couch in their room and cry. Soon I realized that if my babies were going to fight to live then I better be fighting for them too and I figured it out. I knew none of the medical terms, medications or technology used in the PICU but I figured it out. I didn't know much about the human body, how to read blood work or understand test results but I figured it out. I asked questions, so many questions. I made lists everywhere. I called friends who were doctors and nurses and asked them every question I could think of, taking up way too much of their time but figuring out what I needed to know. I googled and researched even though everyone told me not to because of all the scary and false information I might find. One day, while Will was in surgery, I went down to the records office and insisted that they print over 2,000 pages of Will's hospital records. This was on top of the 900 pages I asked to be printed for Caroline. I then proceeded to read them, scouring them for details I had missed and questions I needed answered. I took the report from every echo he ever had and researched every single term, graphed his results and brought them to one of the staffing meetings. I'm sure everyone thought I was insane but in a world that I knew nothing about I learned everything I could as fast as I could because I had to, there was no other option. I learned to be resourceful and use what I had to get what I needed for Will.
During the first few weeks our twins were in the PICU, one of my mom’s nurse friends told her how important it was to spend time with the babies - talk to them, touch them and just create a loving environment as best as we could in the midst of all the chaos to let them know we were there. I really took that to heart. Even before we could hold Will I would sit at his bedside and hold his hand or touch his head and talk to him. I got really protective of his environment. I know it might sounds silly, he was a baby and I know that he didn’t understand what was going on or what people were saying, but it mattered to me. I wanted to keep his space positive and peaceful. No hysterical meltdowns, no negative words, no one telling him that he was going to die or what he couldn’t do. It’s all I could do for him. I couldn’t make his heart function better, I couldn’t make his kidney’s work and I couldn’t fix his body. I couldn’t take care of him. He needed doctors and nurses and therapists to take care of him. All I could do was love him and protect him. Sometimes that meant saying no or making people upset. I didn’t care then and I don’t care now. All I cared about was Will. I learned to protect Will from people who we found to be untrustworthy or irresponsible. On December 13, 2017, Will went on ECMO and came off within 24-hours. He had a brain bleed. He was swollen all over his body because his kidneys had shut down. His heart function was poor. A doctor came to us and said that Will was in a vegetative state. He told us that Will was brain dead and offered us the option to remove all his support so that he could die. He was wrong. Will was not brain dead. Will’s brain stem was completely in tact and while low, he did have brain activity being recorded on the EEG. His brain activity steadily increased until ten weeks later when he had a seizure. A few months later the same doctor told us that Will’s kidney’s would never work again. He said that the nephrologist told him with 100% certainty that Will’s kidneys would never function on their own. Again, he was wrong. The nephrologist said that while highly unlikely, he would never say with certainty that Will’s kidneys would not start working on their own. We still had a small sliver of hope as well as other options to look into. It wasn’t only this doctor, but others too that I developed an extreme resistance to. It wasn’t simply poor bedside manner or an uncaring attitude, it was flippant, irresponsible and disrespectful comments that made him and others untrustworthy. There was the surgeon who described graphically to me how Will would bleed to death on his operating table if he attempted a certain surgery. It was the calloused, persnickety doctor in the hallway laughing when Will urinated and claiming that it wasn’t real. I have always had a strong intuition and although I do tend to see the best in people, I can pretty much call who someone is after only a few interactions, or just one extremely telling one. I usually know who to trust and not trust not because of anything they say or do, just because I know. So when I encountered people like this, I guarded Will from them with a passion. I would literally block the door and make these types of doctors talk to me before entering Will's room because I knew they were going to come in and be negative. I didn’t want Will to hear that. I met a new surgeon and refused to let anyone but him operate on Will. I relied on doctors and nurses I trusted and didn't pay much attention to the others. I was more protective than I have ever been over anyone or anything in my entire life.
Being Will’s Mommy has made me more brave, bold and confident. I am sure of what God has called me to do and I will not take “no” for an answer from this world. I will always and forever wish that Will was still here and that I had never learned any of these lessons and had never grown into this new person I am today. I would willingly and gladly take the less bold, less brave and less confident version of myself if I could have Will back. Since I don’t have that choice, I will choose to make something beautiful out of this tragedy, drawing the strength and courage to do so from the strongest and most courageous person I have ever known - my son, Will.
I am so sorry that I couldn’t save you. I would have done anything to switch places with you and take away all your pain. I’m sorry that you spent your time here on Earth sick. I’m sorry that I didn’t protect you from getting sick, I promise that I tried. I’m sorry that you only got to be in your home for a few hours. We feel your absence everyday. I am sorry that you don’t get to grow up with your brother and sisters. I know that you would have brought so much fun and joy and laughter into their lives. Every time I look at Caroline I think about you, I’m sorry that she doesn’t have you by her side anymore. You are so missed, my sweet boy.
I hope you felt nothing but love from us during your time here on Earth. I treasured every moment we got to spend together and I hope I never forget the way you looked up at me with your big blue eyes or how your little body felt snuggled up into mine when I got to hold you. I’m sorry if you ever felt scared, I did everything I could to protect you and help you feel safe. I sometimes feel like you are missing out, on life here with us, but really I know you are in the most loving and safe place with our Heavenly Father who loves you infinitely more than we ever could. We are the ones missing out on you. I think about you all the time and I wonder what you would be like today. It feels like I lose you again with every new stage of life. I think it will feel like that forever but I want you to know that you are worth it. I would never trade the 96 days we had with you, even if I knew how they would end. Given the choice I would take the pain and the grief and the constant struggle of wanting you back because if I didn’t have those things then I never would have had you. I hope you know what an inspiration you are to so many people and how many lives you have already impacted. I wish you were still here and so many times I think about what if things were different, what if you didn’t come in contact with the virus or what if you were born just one week later, one day earlier. It can be consuming but it really just comes back to the deep desire to have you here. I wanted you, I still want you and I always will. I’m sorry I couldn’t save you.
I love you,
I should be seeing double
I memorize her ever move
While my insides turn to rubble
I should be hearing two
I cherish every single note
All the while missing you
My lips should touch another
I steal as many as I can
While longing for her brother
Holding onto mine
I soak in every ounce of her
While in my heart for you I pine
Bringing light to every space
My heart swells with gratitude
Wishing I could see your face
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!