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
Community has been on my heart and in my mind lately. Being part of a thoughtful community is something I experienced while we were at the hospital with our babies as well as after like no other time in my life. I am so thankful for the way our friends gathered around us during that time and I would like to use The Will King Foundation to continue creating and cultivating that type of community. There is a clear distinction I want to make here between just being part of a community and being a part of a community that is characterized by thoughtfulness, empathy and compassion. A community is a group of people who simply live in the same area or has a common characteristic. A neighborhood, a church, an office or a group of people who all like the same cookbook are examples. A thoughtful community is a step beyond, linking arms with the tribes, squads and families of the world. It’s a group of people who encourages all it’s members, inspires personal and collective growth and often anticipates needs before they are voiced. They genuinely want to see others thrive as opposed to using others to make themselves look or feel better, therefore being a part of the community brings out the best in every individual involved as well as those around them. They are willing to make sacrifices, always offer to help and are happy to put the needs of others above their own. They make everyone around them feel valued, work together towards a common goal, big or small, and accomplish positive change together They create something that is unbreakable, resilient and strong. When they see someone in crisis or an emergency they don’t just think or say, “I’d really like to help” or “let me know what I can do” because they know that the thinkers and sayers aren’t the ones who create community. It’s the thoughtful doers who know how to show up and make a real difference. They are not a community because they live close to each other or have a similar interest. They are a community because they choose to be, living and working together willingly, joyfully and harmoniously.
Let me give you some examples of how our friends showed up for us while our babies were sick. I had a friend who made me lunch. Literally she went so Zoe’s Kitchen and got chicken salad, dropped it off with some crackers and every day for that whole week I would pack it in a lunch box and take it to the hospital with me. It sounds simple but this was so incredibly thoughtful and appreciated. One, the least of my concerns was eating, but it’s something that was really important not just for my own health but also because I was trying to pump milk for two babies. Two, I didn’t want to take the time to go get lunch because that meant being away from my babies. This same friend helped my children enjoy Christmas activities, met my mom for playdates with our kids and kept Will’s older sister for me. Another friend sent us food, for us and our children. Easy breakfasts, Christmas treats and she even included lots of items made with oats because she knew it would help my milk supply. She also organized playdates, offered to pickup anything we needed whenever she went to Target and had Will’s big brother over for the afternoon multiple times to play with her kids. People sent us care packages directly to the hospital, dropped off frozen dinners and a group of my friends all got together and contributed gift cards to restaurants so we could get quick and easy dinners. A group of women that I work with sent us an Uber Eats gift card. This is particularly thoughtful to me because I work mostly with woman who I have never even met but they still found a way to help. On the morning that Caroline had a pulmonary hemorrhage I was planning to go to a Santa breakfast with my two older children before going to the hospital that day. My husband called me as we were getting ready, explained what was happening and my mom took me immediately to the hospital. I thought Caroline would be dead when I got there. As I left, my four year old son was crying, hugging me and saying that he wanted me to come, that I was supposed to go to the Santa breakfast with him. I didn’t know what to do, I had to go to the hospital but I didn’t want to leave him, he needed to have fun and me leaving was crushing his spirit. My dad still took them and on the way to the hospital my mom called a family friend, woke him up and asked him to go to the breakfast to help my dad with the two children. He was there. A table was all set up for them and he, along with many others, made sure they had so much fun. I am so thankful that we have a community of thoughtful individuals who were there for us during some of the most difficult days of our lives.
The support has not stopped just because we are no longer in crisis. Since establishing The Will King Foundation we have had so much support from our community, near and far. We have been able to say yes to every sponsorship because of the generosity of people who have donated and supported us. Recently we have had people in the community, some who we personally know and others who we don’t, reach out asking if they can contribute. They have an idea, a way to use their business to give back or an idea of how to raise awareness and share Will’s story. Their idea sparks an action. That action is the support we need to continue to carry out our mission, caring for families and providing medical treatment for children. I see the mission we have established as more of the end goal but the way we get there is truly special because we do it by uniting together to make a difference. There is nothing that creates community like having a common mission, something you are all working for together and aspiring to achieve. This vision inspires me. It's working together along with our family, friends and neighbors to support the medical needs of children while also sharing our inspiration, Will. It's teaching our children about giving back and showing them tangible ways of how we can do that alongside others. Whether it’s a fundraising effort, a platform to share Will’s story or an intimate conversation, I think it all brings people together because we are working towards something bigger, something important, something meaningful and powerful that we all care deeply about. This is the spirit of community that I would like to capture, replicate, encourage in my children and cultivate as a defining characteristic of our foundation and our family.
I’ll be the first to admit that I am not a fan of unwanted advice, but I feel that I need to give some here. If you know someone in a crisis, difficult situation or that needs support, I would encourage you to take action. When someone is in a crisis, they simply cannot do anything except focus on that crisis. So if you generously say “please let me know what I can do for you” or “I would love to help in any way” they probably are not going to be able to say anything. I have done this so many times, thinking it opens an invitation for the person to reach out if they need anything and it does, which sometimes is really all you can do. However, now I know that it is probably just asking them to think about one more thing that they do not have the capacity to think about. If you really want to help then you have to do just that - help. Without being asked or told what to do. Imagine yourself in that person's situation, even if you have never experienced it before, and ask yourself “what would I need if this was happening to me?” and then do that. Don't wait for someone to tell you exactly what to do or reach out with a specific request. If they do, great! Go above and beyond to fulfill their request. However, in a real crisis, this seldom happens so don’t wait for the person in need to tell you how you can meet their need. If you really don’t know how to be helpful but want to, think of a few ideas and ask which one would be best. Multiple choice is better than fill in the blank. My brain could literally not process or think of one more thing but if someone said I can do A, B or C I could have picked and said yes, do that. Who can you help today? It doesn’t have to be someone in a crisis like ours. Do you have a neighbor that could use a home cooked dinner? Don’t ask, just take it to them, say, “hey, I’m going to bring dinner by tonight, will you be home around 6pm?”. Do you know a family who has just experienced a tragedy, loss or difficult circumstances? Think of what would help you most if you were experiencing the same situation. Last year when Hurricane Irma ripped through our city thoughtful community came out everywhere. People were raising money, volunteering to clean up and opening up there homes for people still without power. They didn't ask, "Is is okay if I organize a fundraiser to help cover some of the cost of damages to your home?" No, instead, they just did it, collected the funds and gave it to the family in need. It comes down to this - be intentional, be emphatic and take action. We had so many people do this for us and I don’t think I can ever truly express our gratitude to them. Now it’s our turn. With your help I believe we truly are making a difference and in my mind we are just getting started. To me, that’s thoughtful community.
I’ve been presented with this idea lately that we shouldn’t let our trauma define us. At first I thought it sounded good, the side effects of trauma shouldn’t be a dark cloud looming over every part of our life. It shouldn’t be what our identity is rooted in or even what we are known for. That was my initial reaction to the idea at least. However, I have been thinking about it more lately and unless someone can present an extremely compelling reason why these are words to live by, I’m going to boldly say that I disagree. I disagree because I think traumatic pasts, situations or events will define us, despite our best efforts to push it down or hide it or dress it up to mascaraed as something else. Until the day that we took our twins to the hospital and the 96 days following I never experienced real trauma. There were challenges, situations that were devastating and long periods of time where I really struggled. But trauma? No. Trauma is an event or experience that is deeply distressing or life threatening. Trauma causes an exuberant amount of stress and pain that we have no ability to cope with. Trauma causes deep physiological, physical, mental, emotional and spiritual pain. It can trigger anxiety, depression, guilt and a whole spectrum of emotional damage. Trauma is different from a hard time or a difficult experience or a sad event. It is dark, all encompassing and deeply hurtful. It comes to us and never leaves, unlike that challenging situation that is now resolved, that hard time that you pulled yourself out of or that struggle that you came out on the other side of. It’s life altering and inserts itself into every single area of your life, weaving itself through ever fiber of your being regardless of how hard you fight to keep it out. It creates a new identity for us, it births a new human that is a dim reflection of the life that existed before it was sabotaged by trauma. This is why I believe that saying “trauma shouldn’t define us” is a lie, I don't think we have a choice.
I do however think we choose how it defines us. I know this might be an unpopular opinion because if you google “letting trauma define you” you will find tons of guides, steps, articles and resources about how to not let trauma define you. So let me just say this, I am not a therapist, counselor or physiologist of any kind. I don’t know about other traumatic situations. I have never been to war or witnessed a school shooting or been the subject of abuse in any way. My thoughts could be totally wrong and unhelpful to others working through their own trauma. My idea of what the word “define” entails may be completely different from what it means to you. Please feel free to not consider my viewpoint and go find a qualified professional to talk to. All I can offer is personal experience and specifically the only spaces I can talk out of are those of almost losing a child and losing a child. I’m not into the game of comparing hardship, but I think mostly anyone will agree that child loss is among the most devastating of all human experiences. Having a sick child and enduring an extended stay in the hospital with that child has to be up there as well. I will never be the same person I was before I gave birth to our twins. It’s not possible. The trauma of the whole situation and the single event of holding Will as he took his last breath will define me forever. Whether it should or shouldn’t, whether other people like it or not or think it’s healthy or unhealthy, I will never exist without that person being a part of me. Letting it define my life or not is honestly out of my control, it’s going to no matter what I do or don’t do. What is in my control is how I let it define me. That is a choice. I can choose to let the trauma produce something positive, honest and helpful or I can choose to let it create a negative, self-centered and sad existence. Honestly, I think the latter would be easier. I could easy decide to wallow in my sorrow, make excuses and let others continually take pity on me to get what I wanted. I could take pity on myself and decide to just stop trying because really what is the point anymore? I could spend my days hiding alone in my house, not connecting with anyone or making any effort to be a productive member of my family or community. Honestly, that sounds appealing sometimes and definitely takes way less effort than the other option. However I have never been one to choose the easier option because I believe more often than not easy is not necessarily best.
I’m a perfectionist, so I like to strive for the best all the time. For me, the best option is to let the trauma I have experienced drive me to be productive and intentional with my time, energy and resources. This plays out first and most importantly in my family. What if I just decided that I was going to be sad and withdrawn all the time and give up on life? How would that affect my husband? My children? My friends? My community? I cannot fathom a situation where that behavior produces anything positive or good. In fact, all I can imagine is how much more harm it would inflict on everyone around me as well as myself. What a difficult life my children would have if their mother was constantly disconnected, unresponsive and angry. What an unfulfilling relationship I would have with my husband if I choose to be disengaged and uncommunicative all the time. Instead, I think the trauma should be used as fuel to drive me not just to be good or great but exceptional. Exceptional marriage, exceptional mother, exceptional friend. This also affects my relationship to the world around me. The reason why I share Will's story and strive to make this foundation a success is because I have chosen to use the experience to help others. Again, it is not the easy choice for me. I am not entirely comfortable with sharing such personal details of Will's life and death with the world. It is hard for me to visit sick children, in fact I have not been to the hospital to visit any of the children we have sponsored because I cannot step foot in the place where Will last was. But I will continue to make good come out of our tragedy, even if it is the more difficult option, because I refuse to let Will's legacy be filled with anything else.
Because of what we have experienced I have a very real and deep understand of how fleeting life is. You always hear the notion that “it could all be over in a second” and I’m here to tell you that it really could. One second we were taking our babies to a well check appointment and the next second we were on our way to the ER. One second we thought Caroline was getting better and the next second she was throwing up blood, barely breathing and in a life-threatening situation. One second we held Will in our arms and the next second there was a flat line on his monitor. One second. Why would I waste any of those precious seconds doing anything else beside creating something positive, helpful and exceptional with my time here on Earth? Some of us get 96 days, some of use get 96 years, either way we all have the choice to make an impact with what we are given.
I challenge those of you who have experienced real, true, life altering trauma to let it define you but don't let it control you. Let it define you in the best possible way, allowing it to drive you to do something that inspires you, blesses others and brings joy to you, your family and your community. Let it propel you to gratitude, not bitterness or entitlement. I will never claim that this will be easy and I will always admit to failing at it continually. I may be a perfectionist but I am no where close to perfect. I will be sad, heartbroken and withdrawn at times. I will snap at my husband and get frustrated with my children. I will have moments of struggle, negativity and complaining. I will want to give up, I will lose my motivation and fail to focus. I will let the trauma I have experienced take over and I will have pity on myself and wish others would do the same. But I will always choose to try again. I will always choose to let Will inspire me to be exceptional because I think he deserves to have the best mommy who represents his life and legacy well. I will choose to let this trauma shape me because that means Will helps define who I am today and I want the person who cared for, fought for, sacrificed and loves that sweet baby boy to always be a part of me. He will always be the best in me and I will always strive to do my best for him.
Sweet Will in mid-January. Helplessly watching this baby and his sister get sick, staying in the PICU for three months and holding Will in my arms as he took his last breath will always define me. But I refuse to let it reduce me into a negative, self-centered, hateful person. Instead I will strive to make Will the best of me, letting his courage, strength, perseverance and joy define me as long as I live.
Taylor and I brought Caroline home around 1am on the morning of March 7 after Will had taken his final breath a few hours before. We each had a car at the hospital, so we drove home separately. It was dark and there were not many cars on the roads, everything was still and quite. Caroline was sleeping in the back seat of my car and I remember looking in my rear view mirror and seeing Will’s seat. How could he not be in there? I was too exhausted and overwhelmed and sad to process it. We walked into our house together for the first time in three months. I would have given almost anything for Taylor to be back at the hospital with Will. Being at home alone every night was challenging and lonely at times, but it was far superior than being home without Will. I don’t remember much of the next few days. I know we cried a lot. We had to tell Joshua that his little brother was in heaven and we took a painful trip to the funeral home. March 6 was the most painful day I have ever experienced, but on that day, I had Will. He was in my arms all day and I kissed him and hugged him and held his little hand. March 7 was our first day without him and we didn’t know what to do. Then the days started to pass and I felt paralyzed, we needed to take just one step and didn’t know how. Then Taylor had this idea, that we should take a family trip. I actually had the same idea too but I was a little scared to suggest it. Was that allowed? It felt wrong to just go somewhere and have fun. All I wanted to do was hide and cry and be sad. But our children had been through a lot the past three months and they are too young to really understand why we were so sad all the time. We hadn't all spent the night under one roof for 90 days. We needed to do something fun together. We needed to force ourselves to take that one step into our new life without Will. We needed to love our children and enjoy them.
So we went to Disney. There, I said it. I’m still a little hesitant to share that we took this trip and I don’t know if it's because I’m embarrassed or scared of being judged or fearful of being told what we should have done instead, but honestly it's probably a combination of all of those. At the time I barely told anyone because I didn’t know if it was appropriate to do. We ran away to the happiest place on Earth during the worst days of our lives. Maybe some people think we should have sat in our grief longer or it was too soon to go enjoy a place like Disney World and I kind of felt like that too. But then I read "I Will Carry You" by Angie Smith and found out that they too went to Disney World after getting a terminal diagnosis for their baby in utero. It kind of felt okay after I read her perspective. Now I know that grief will always be here and that it’s okay that we decided to enjoy life with our children. I can sit back into grief and pain and sadness whenever I have to or need to or want to. But I have three little lives who depend on me. It doesn’t mean I have to be happy all the time but losing Will made me want to enjoy them all the more and be more intentional with our time together. So many things were hard about that trip. Obviously, Will was supposed to be there and I had thought many times about what the twin's first trip to Disney would be like. Now it was completely different and unexpected and everything seemed to make me think about him. When we rode Small World I was brought back to the moment a few days before when he took his last breath in my arms and It's a Small World lullaby was playing in the background. I saw twins, it seemed like I saw them everywhere, like it was "Twin Weekend" at Disney and I couldn't help but be heartbroken for my twinless twin. It was hard but we had to take a first step somewhere and Disney seemed like a pretty good start. So we rode the rides and ate the food and carried around the expensive balloons. We smiled. We were together and around tons of people who didn’t know who we were or what had just happened to us. We came back and it felt like we were beginning a whole new life. We stepped into the same house we have lived in for four years but it seemed brand new. Before it was a house that we lived in as a family of six. The babies had a crib in our room and there were two rock-n-plays in the family room. Our table has six chairs and I knew the one where Will would have sat one day. What I didn’t realize when we walked back into our house that day was that we didn’t just lose an infant, but we lost a toddler and a kindergartener and a child and a teenager and an adult. We lost our baby at every stage and this house that we were coming home to held not only the memories but also all the future moments that we would never experience with Will. It will now hold completely new memories that I never thought I would make, because all the things I imagined happening in this home included him.
One week after Will’s passing we were sitting on the floor of our living room with my parents. We had returned from Disney, we had taken that one step but now what? What about all the other steps, how are we supposed to do those? That’s when the idea for The Will King Foundation was born. We were discussing how to best honor Will, should we memorialize him somewhere with a statue or a special donation. We had decided not to hold a funeral service but there were so many people who were still asking how they could support us. How were we supposed to answer? I quietly listened, unable to hold back tears as we discussed how to honor the life of my baby who was supposed to be in my arms, not a little clay jar. He was never supposed to get sick or go to the hospital or die. We weren’t supposed to be making decisions about how to honor his life. He was supposed to be making those decisions with his siblings about us years from now. Here is how my Dad recounts that night:
“A couple of nights after Will’s passing, Candy (my wife) and I were visiting with Courtney and Taylor in their home after the children were asleep. Exhausted and numb, we sat on the floor and talked about the experience, our blessings and about getting life back to normal. Overall, we talked about God’s Will and asked some questions: “What was God’s purpose for Will? Why did God put Will here for just 96 days and then take him? What is our responsibility to fulfill that purpose?”
The next morning Courtney sent me a message. In short, her heart was telling her that there are other newborns that have medical needs requiring specialty care like Will and Caroline had received but they never get it because their families don’t have the resources. I said to Courtney: “That’s the purpose. That’s God’s will. We are supposed to use Will’s experience to make a difference.”
Within minutes Courtney was on the phone to Dr. Ettedgui, the pediatric cardiologist that took care of both Will and Caroline. Courtney and Taylor had developed great respect for Dr. Ettedgui and knew that he had a deep passion for caring for children. Courtney told Dr. Ettedgui about Will’s purpose and he told her that he had identified a child in need of heart surgery. He could do the surgery, together with the charitable support of Wolfson and UF Health, if the money could be raised to fly the baby and her mother to Jacksonville and provide a place to live while they were here. With that, the purpose was clarified, The Will King Foundation was established, the $’s raised and the successful surgery is now complete.”
That baby was Avery. Now, six months later, we have been able to sponsor three children who have all received successful medical treatment. We have spent time with their families and prayed for them. They always say how grateful they are and how much we have done for them. It is humbling and a blessing, but they are wrong. We have gained much more than we have given. Getting to be a small part of these families’ journey is a true gift. They are helping us. They are helping us have a purpose to keep on living despite wanting to just give up. They are helping us honor our precious son and keep his legacy alive. They are helping us shape our children into people who love and care for others. They are helping us bring the Gospel to the nations. They are helping us grieve in a productive way by giving back to others instead of turing into ourselves. They are helping us by being our friend, by telling us how sorry they are that we lost Will while they themselves are enduring one of the greatest trials any parents can ever walk through. It never feels quite right to say how much I enjoy meeting these families and working to share The Will King Foundation. It wouldn't exist, after all, if Will was still here. But I am learning that you can grieve and enjoy life at the same time. You can suffer loss and experience unimaginable heartache but still go to Disney World and smile with your children. It’s okay to be sad but also driven to making a difference. It’s okay to use heartbreak to make something good. It’s okay to let sorrow and joy intermingle. There is no right or wrong way to grieve or experience loss or hardship or trauma. There is no too soon or too long or too fast or too slow. There is no getting over it or moving on or forgetting it ever happened. There is just trying. Trying to enjoy, trying to bring love and light to this world that so often brings us pain and sorrow. I’m learning that there is no rulebook or guide or specific way to do this. It’s all okay.
Multiple times a day I think about what a miracle Caroline is. I believe that all babies are miracles, but I personally witnessed a baby, my baby, live when, according to science, she really shouldn’t have. Her numbers from her blood work were always worse than Will’s, she had a pulmonary hemorrhage that could have very easily taken her life and she had the same exact diagnosis as Will. She contracted the same virus that took him from us. My daughter, Caroline, is a miracle.
Coming home from the hospital was a challenge and very scary for me. I have described before how fearful I was to bring her home by myself (click here to read more). During her first nine weeks at home, Will was still at the hospital and Taylor and I were barely at home together during the day and never at night. She was tiny and fragile and the next few months were filled with doctor’s appointments and visits to specialists. I didn’t realize that after you leave the PICU you don’t actually just get a free pass home. You spend months, maybe even years, following up. I don’t want that to sound negative because I am so thankful that we have an amazing pediatrician who is cautious and would rather send us all over the city getting check ups rather than wait for a problem to arise. An ounce of prevention is worth a pound of cure. I just wasn’t expecting it. Here is a little bit of what Caroline has been up to for the past eight months, celebrating all the progress she has made and a look into her future.
Caroline in the PICU, only a few weeks old, and Caroline now, nine months old.
In the months immediately following her release from the hospital, Caroline had follow-up appointments with every specialist that she had seen during her PICU stay. She had to either be “cleared” by each specialist or continue to have follow-up appointments until they felt she no longer needed to see them. The first appointment was with Cardiology. Our favorite, very patient doctor, was pleased with Caroline’s echo and said her heart was getting stronger and should make a full recovery. She came home with no heart medications and will go back when she is one to follow-up. Our next appointment was with neurology, where she received an exam and I got a mini-crash course on the human brain. We went over her CAT scans, MRI’s and head ultrasounds and I came in with a long list of questions and concerns that the neurologist diligently went over with me one by one. He concluded the check-up by saying that the only reason Caroline will suffer from any neurological issues would be because of me, if I treated her differently because of what she had been through - I guess I’m not good at hiding my paranoia. He was joking of course, but he did clear her and doesn’t have any reason to think she will need to follow up in the future. She has had two hearing test with an ENT. One side effect of one of the medications she was on in the hospital is hearing loss. She passed both tests and will have another one when she is two years old. Her next follow-up appointment will be with an Ophthalmologist, who will check her eyes.
Caroline had frequent visits to the Pediatrician’s office for extra check ups and weight checks. She started off not even on the growth chart. By the time she was two months old she was ten pounds, almost double her birth weight. At four months old she was 12 pounds and in the ninth percentile, she had made it onto the chart! At six months she moved up to the seventeenth percentile and at her most recent nine month check she was in the nineteenth percentile, weighing in at sixteen pounds. She might be tiny but she is a strong and determined little girl, gaining weight and growing just like she is supposed to.
I sometimes forget that Caroline is a little bit behind because she is so active, alert and responsive. Cognitively, she seems to be like any normally developing baby and I forget that her traumatic start to life has put her a bit behind physically. Just for reference, here are some photos of her brother and sister, both at nine months old. My son, who has always been in a lower percentile, was seventeen pounds at nine months. He was crawling well and pulling himself up to stand. Caroline's older sister is usually right in the middle of the growth chart, usually the 40-60%. At nine months she was eighteen pounds and standing, crawling and easily pulling herself up and going back and forth from sitting to crawling. Caroline sitting up well and can stand with help. She is working to reach her other milestones in therapy.
At six months, Caroline got evaluated for physical (PT) and occupational therapy (OT). She was not only premature, but having spent the first month of her life in the PICU set her back a little bit. PT and OT will help her reach developmental milestones so that her physical ability can catch up to her cognitive ability. She started PT around seven months old, not sitting up or rolling from her tummy to back. After two months she is doing well sitting up on her own and is working on twisting from side to side and eventually getting into a crawling position from sitting. Her OT goals focus on grasping, crossing the midline and sensory processing. She seems to be overly sensitive to loud noises and certain textures. Will’s OT in the hospital explained to me that babies who have been through a traumatic experience during or after birth often develop an aversion to touch or sound. Every touch she experienced in the hospital was aggressive - a needle poking her, something going in her nose or being put into an uncomfortable position for a scan or a test - and she is experiencing residual effects from that. She will continue with PT and OT for as long as it takes for her to catch up and she will also have a feeding evaluation with a speech therapist at the end of the month.
One of Caroline's Physical Therapy sessions at eight months old.
As a nine month old, she has experienced more trauma than I ever imagined. Despite the obstacles she has faced, she continually proves to be a sweet and charming little girl. I always say that Caroline sees the world in black and white, there is no gray in her mind She will either be the happiest, smiliest baby you have ever seen or scream louder than you thought possible for someone her size. Her smile literally lights up a room and we are admittedly obsessed with everything she does. I have had so many strangers stop me and tell me what a beautiful and happy baby she is and most of the time I think, “If you only knew what this little girl has overcome.” She has the best laugh, loves being carried around on my hip and will grab anything you put within her reach. There are multiple times each day that I am overcome with gratitude that she is mine, that I got to keep her and see her beautiful smile every day. I am so thankful that I am not missing Caroline’s life and at the same time I feel the equal amount of heartache that I am missing Will's. She reminds me of him every day and even though she will never know her brother, I truly believe that she will always carry his joy and strength and courage with her.
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!