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. ​

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.

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.

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.

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.

One of Caroline's Physical Therapy sessions at eight months old.

The last video we took of Will, sleeping peacefully, on February 27, 2018.

Will was pretty stable the last few weeks of February.  The doctors were making small tweaks to his medications, dialysis and ventilator but there were no big changes or surprises.  A lot of time was spent talking about Will’s future and how we were going to move forward.  The nephrologist thought that Will’s kidneys were most likely not going to start functioning, which seemed to be the biggest issue.  He was probably going to need a kidney transplant, but he couldn’t be considered until he was about 22 pounds, at least a year.  Maybe he would be in the PICU for that amount of time, waiting until he could be transferred and evaluated for a transplant.  Maybe he would be able to come home and grow here, we didn’t know.  The other concern was his heart.  It was extremely weak in December, then we saw a big improvement as we entered the new year.  After a few weeks his heart function got worse again, but still not as bad as it was at first.  It seemed to be largely related to his fluid balance, but there was still the question of how much it would or could improve and if a heart transplant was potentially in his future as well.  All of this talk about transplants and Will's future was full of so many unknowns not just for us but the doctors too.  They didn’t know if he would even qualify based on many factors, mostly his brain bleed and the poor function off multiple organs.  Plus he was a baby, which seemed to complicate everything even more.  If he did qualify, we didn’t know if one of us would be a match for kidney donation and we didn’t even want to think about the details of him getting a heart.  This path of transplants was one very real but uncertain direction for Will’s future.  It seemed very overwhelming to me, but not unreachable.  I would have done anything and everything to get Will whatever he needed to live.  Most of the time I was just happy that they were talking in terms of the future and saying phrases like "at home nurse" and "in a few years..."

Another, more positive and desirable path, was that Will’s kidneys would start working on their own.  We were told that this was most likely not going to happen, that it would be a miracle.   We had just seen miracle after miracle as Will continued to get better and Caroline came home, we have a big God and believed that He could do another miracle for Will.   It seemed like if his kidneys would function on their own, even if just one could work enough to do it’s job, then the other things might fall into place.  His heart might get stronger if it wasn’t fighting fluid overload and eventually his lungs could develop enough to remove the trach so he could breath on his own.  Sometimes thinking about the best case scenario is the only thing that kept me going.  I am a natural planner, I'm optimistic but realistic as well, and I imagined every possible situation and made it work in my mind.  We prayed, we hoped and we wondered but we never expected an answer.  We knew that Will would take the path God had laid out for him, regardless of how much I fought to find a solution. 

At the end of February I met with all of Will’s doctors, specialists and some nurses in charge of his care.  We were discussing all these possible options and how to help Will keep getting better and grow while we waited to see what was going to happen.  Misty came to the meeting.  I have written about some of Will’s nurses who mean so much to us, but if you have been reading my posts you know that Misty is extremely special.  I don’t know how to express what she means to us because there are no words that describe it.  Misty was wonderful.  She loved Will and she was there for me, she was there for all of us.  She didn’t just listen to my concerns, answer my questions and chat about ordinary things to help distract me from the horrific reality going on around me - she did all those things - but she was really there.  Completely present.  When she was Will’s nurse we knew he was going to be taken care of above and beyond the standard of what was expected from any nurse.  She not only made sure he was clean and comfortable, but she made sure his room felt calm and organized and fun.  She made him CD’s with Disney lullabies and played movies for him.  She dressed him and played with him and talked to him.  Her job description included giving him medicine, monitoring his vitals and taking care of his physical needs .  She did SO much more.  She really cared.  She didn’t have to come to this meeting, she came for Will, and she took notes and shared her concerns.  She knew him better than any doctor.  She spent 12-hour shift after 12-hour shift taking care of Will.  After all the specialist talked and shared their ideas, concerns and plans, Misty interjected and I was relieved.  At this point I was on the verge of a complete meltdown and I couldn’t say anything.  I was just trying to get through the meeting so I could go into the bathroom and cry by myself.  She spoke as a medical professional but she also was my voice, speaking every concern I wanted to bring up but couldn’t.  She knew that Will was not himself.  Over the past few days he had changed.  He was swollen, uncomfortable, inconsolable at times.  It was a different type of agitation.  Not the kind of uncomfortable that was solved by a diaper change or switching positions.  Will was a calm baby by nature, he was very low maintenance in the sense that he tolerated a lot, a lot more than can be expected of any human.  The past few days it seemed like everything made him upset and he just couldn’t get settled down or comfortable.  He hadn’t slept and his alert, kind little eyes seemed to be glazed over.  Misty knew it and made sure everyone else knew too - something is wrong and we need to figure out what it is.  

On March 2, they started the process of exploring every possible reason as to why Will could be declining.  More blood tests, samples taken and tests performed.  Nothing came back that indicated a change.  No positive cultures, no infection, no reason for this sudden decline.  Theories were flying around everywhere but nothing pointed specifically to why he was suddenly deteriorating.  One week ago he was making such good progress.  One week ago I was giving him a few drops of milk from a bottle.  One doctor told us he would never drink from a bottle and he did, eagerly.  He was happy and sweet and we thought he was getting better.  We were planning for his future.  Now all of the sudden he was getting worse, they were adding support - more oxygen, epinephrine and norepinephrine to help his heart and re-starting medications that he hadn’t been needing since December.  

On March 3 I saw a twitch.  No one thought it was a seizure.  Doctors, nurses and the physician’s assistant all saw the twitching and they seemed to be confused by it and said maybe it had to do with electrolyte imbalance but it didn’t look like any typical seizure.  They put an EEG on just to make sure.  Not long after we discovered that it was a seizure, but not just a seizure.  Will’s brain was having multiple seizures, sometimes at the same time, coming from areas all over his brain.  I got the strong sense that it was something none of the doctors had really seen before or at least not frequently.  He got a large dose of anti-seizure medication but that didn’t stop them.  They added a drip of a second anti-seizure medication and were still having a hard time squelching them out.  I remember standing at the EEG screen with the neurologist and he was showing me spikes where Will’s brain was trying to have a seizure.  They were unstoppable and consuming every part of his brain.  He was in a comatose state, sedated by multiple potent anti-seizure medications that weren’t doing their job.  In my mind it felt like his brain’s way of shutting down, like it was misfiring from every location because his body was trying to die and we weren’t “letting” him.

On March 4, the doctors started increasing the dose of epinephrine.  It was referred to as a “rescue medication” because without it Will’s heart was not strong enough to pump blood throughout his body on it’s own.  We changed his code, Do Not Resuscitate.  There was no doubt that he was getting weaker by the hour and there was still no other explanation - all cultures, all tests continued to come back negative.  The seizures were still happening, even with all the anti-seizure medications flooding his little body.  He was sedated so there were no more signs of visual seizures but he was still on the EEG so they knew that he was still having them.  He was just laying there peacefully, the ventilator doing most of his breathing and the epinephrine helping his heart beat.  That night I was at Will’s bedside with the PA.  He was one of the people who I had asked a billion questions to and knew Will very well.  After I asked everything I could think of, I paused and through choked back tears I said, “This is a really hard question to ask, but do you think Will is trying to die and we won’t let him.”  I think the question may have shocked him a little bit, but he kind of shrugged it off, “I don’t know, maybe” and left the room. 

On March 5 they added a third anti-seizure medication which basically put Will into a coma.  I knew what was happening, I think everyone else did too, but no one really wanted to say it this time.  In December it seemed like almost every doctor that discussed Will’s prognosis with us thought the best choice was to remove his support and hold him until he passed.  In December there was so much confidence that he really had no chance but he made it through.  He survived against every odd thrown against him.  Now there was a sense that everyone knew that he was deteriorating quickly but no one really wanted to say it.  I think it’s because no one wanted to admit it was reality.  Everyone had grown so attached to him.  In December he was just a patient, “Baby A.”  Now he was Will.  He had an identity and a personality and every doctor and nurse there had memories and experiences with him.  I could tell in their demeanor and in their voices that they knew there was no coming back from this.  Every organ system was simultaneously shutting down despite our best efforts to help him.  

When I walked into his room on the morning of March 6, it was like he was already gone.  I was hit with overwhelming clarity and looking back I think it was God’s Spirit giving me peace that Will was already with him.  Now it was my turn to fully hand him over.  Almost like I was selfishly holding his one little hand and I needed to let go so that Will could go with Jesus and fully be healed.  I wanted to hold on to him so badly.  He was mine and I wanted him.  I still do.  I didn’t know how this could be happening, he was doing so much better, he was so sweet and just a perfect little boy.  I didn’t want it to be true but for Will’s sake, I had to be willing to let go.  I talked to everyone, waiting for someone to tell me that he could recover.  I sought out every optimistic doctor I knew but never found the hope I was looking for.  God made him and he belonged to God but God gave him to me, he was mine.  Nothing about it seemed fair or right.  How could I just let him continue to sit up here hooked up to all those machines that were making his body work.  How could I let him endure this suffering just because I couldn’t say good bye.  I was determined to just let him ride it out, maybe he could overcome it just like he had a few months before.  Maybe it was just a setback.  I kept waiting for someone to confirm it and give me permission to hold on.  But then I heard something that scared me.  One of Will’s nurses said that we could just keep him up here like this forever.  Forever.  So he just lives here, in a coma, with a machine making him breath and medication making his heart beat and dialysis doing all the work of his kidneys and his brain seizing almost continually.  We made the most difficult decision to stop rescuing Will.  This is not a life.  

“This is not a life.”  These are the words that one of Will’s doctors said to me that afternoon when he came in to say goodbye.  That afternoon we had a stream of people - doctors, nurses, therapists - come in to say goodbye to Will.  There were a lot of tears, many thoughtful and heartfelt words but aside from Will’s nurse, Misty, this doctor gave the most genuine and sincere goodbye of them all.  He came in already in tears.  Just that image of seeing an ICU doctor in tears is something I thought I would never experience.  They all seem so tough and calloused and withdrawn.  They have to be.  He sat down across from me, my precious baby boy dying in my arms, and said how his prayers have changed, how this is not a life for any child.  He kissed my boy, looked me in the eye and squeezed my mom’s hand.  It was heartfelt and genuine, a moment I will remember forever.  Taylor and I spent that day holding our baby for the last time.  Caroline, his twin sister, was with him all day, exactly as she should be.  He passed away in my arms around 9pm.  "It's a Small World" lullaby was softly playing in the background and I felt his body let out it's last breath here on Earth.  I asked them to turn the monitors away and I didn't know if I would know the moment when he took his last breath.  I did and it's a moment that will haunt me forever.  We dressed him, wrapped him in a blanket, laid him in a little woven basket and said an impossible goodbye.  We will never be the same again.

Taylor and Will on March 6.

My last picture of Will, taken on March 6, 2018.

Will's Sisters

Look at that preciousness - she is saying "Love you, Cay Cay."

Some of the few pictures I have of my two boys together.

There are times when I know God is speaking to me.  If you aren’t a believer in Christ, I know the next paragraph, actually probably this entire blog post, will make me sound like a either total nut job or​ one of those judgmental religious people who hold up a sign outside the Jags game that says “You’re going to Hell” and maybe even yelling at you through a bullhorn.  That’s okay, I make a conscious effort to be as non-judgmental and non-religious as I can, but I think being a Christian is supposed to make me look different and that might make others uncomfortable or skeptical.  Just try to stick with me.  Believers, you know that undeniable voice of the Holy Spirit?  I heard it on Sunday.  It might be cliche but I heard it through our Pastor during church, that nudging on my heart telling me that God had something in store, something big, something important, something that would honor and glorify Him.  The passage was Romans 15:8-33 (listen to the entire sermon here).  Paul urging the Jews and Gentiles in Rome to live a life poured out for the Gospel of Christ.  A life well-lived is not measured by status or accumulation of things or worldly achievements.  The only thing we can take with us to heaven is people, not our stuff or status, so we ought to be living on mission every day to share God's message of salvation.  Such perspective.  As I’m hearing this I am overcome with gratitude that God has given us an outlet, a platform, to carry out this mission through Will.  I’ve always known it and recognized it as a gift but it was just crystal clear as I listened to our Pastor unpack this passage.  The Will King Foundation is not an experiment or a side project, it an avenue for us to glorify God by not just helping others receive life-saving medical treatment but most importantly by sharing with them the life saving news of the Gospel that could change their eternal trajectory.  

When Taylor and I were in college we wanted to be missionaries.  Reach the nations, Africa specifically.  We would gather in prayer for unreached people groups and shared our desire to bring the Gospel to people who have never heard it.  I remember reading “Five Who Changed the World” by Daniel L. Akin, a book that shares biographies of five missionaries who changed the world through their obedience to the Great Commission (Matthew 28:19-20 which tells believers to go and make disciples of all nations).  I was audacious enough to think that God could use me to be one of those world changers.  I say audacious because I was immature and self-centered and thought that I had something to offer.  That God would use me because I was smart or well-educated or could quote a bunch of scripture.  My intentions were right, but my heart was in the wrong place.  I was pouring my life into achievements for God, looking like a “good christian” and impressing others with my passion for missions when really I was just like the Pharisees.  Like a white washed tomb (Matthew 23:27), I looked good on the outside but I was too loud, too wrapped up in myself to really listen to the Spirit of God inside me.