96 days. It seems a lifetime or just a brief moment depending on the situation and perspective. If someone told us we could not have chocolate, a cup of coffee, take a shower or go outside for 96 days it would seem like forever, too many days, maybe not possible. If someone asked you to build a house, lose 10 pounds, write a book or clean out your aunts’ barn, 96 days would not seem near enough time - we need more time.
96 days with my grandson, Will King, was not enough time. We all wanted more, just more time. Even now I sometimes allow myself to daydream that Courtney is expecting the twins this spring or summer and we will get to have him. And yet 96 days was all Will needed to make a profound impact on us.
“He gives strength to the weary and increases the power of the weak.
Even youths grow tired and weary, and young men stumble and fall
but those who hope in the Lord will renew their strength.
They will soar like wings on eagles;
they will run and not grow weary,
and they will walk and not be faint.”
On a typical day I am awake by 4:30 listening for Emma Grace. We are up by 5 playing in the playroom. We eat breakfast and go outside - she and I love outside - and about 9 am I am walking Emma Grace while she naps. We eat lunch and then I take her home, say hello to Caroline, I don’t ask to hold her, she is too fragile for me. I just look at her and pray, "Thank you, Lord". Courtney is rushing around so when Taylor gets there they can switch as quick as possible so Will is not alone long. I either pick up Joshua from school and play with him or go do errands quickly so I will be at Wolfson Children’s by mid-afternoon. I love these children, I would do anything for them. I love Courtney. I circle around the cold concrete parking garage, a flood of emotions. God help me be strong for Courtney. I go to the 3rd floor, I don’t like elevators. I ring the bell to get thru the doors, if they don’t open I ring again. The sign says to only ring once but sometimes I ring 3 times, I am impatient. I come around the corner and look down the long hall. Will's room is in the back corner and I see Courtney standing on a stool, she is short, she is sweet, so she can look directly at Will. Oh, God take me. I have had a big full life, I am ready to come home, give him to her, I can watch from up there, please God. Some days I have to go back out, go in the restroom, right past the waiting room, turn left at the hall and its on the left. I have to be strong for Courtney, I wash my face with cold water, once again I beg God. Seriously, Lord, I am not afraid of death, just let Will live.
96 days is not a lot but a lot can happen in 96 days.
I felt bi-polar - laughing with Jbob and EG one second, crying for Courtney the next. Joy-anger, happy-sad, grateful-mad, hope-worry, understanding-questioning.
Thankfully, over this time my friends helped me to endure, understand, keep perspective and overall just remember that God is in control. I often joked that if I didn’t return home it would be cause God was just tired of me and to look for a pile of ashes on the floor as I had been so angry. One of my very dearest friends since childhood was especially comforting to me. Connie has shouldered more heartache, faced more trials and experienced more loss than anyone I know. Even so, she has not grown bitter or angry, cynical or mad. Instead she has grown stronger, more gentle, empathetic and compassionate. She loves with a different kind of intensity. Below is our text thread. I decided to share it because I thought it was the best way to explain Will’s impact. Will’s impact is in these words, in my heart and life.
December 1,2017 - Two new babies came tonight, everyone doing well. I have four namesakes now. They are like little elves to me. Will looks just like J-Bob. Here’s to C’s new life, pretty nice.
12/2 - Chris named conversation – Willie, Callie and the round up gang- yeehaw
12/7 -babies in hospital, have infection and little Will having hard time. Please keep in prayers. This is saddest I have ever been, my heart is broken for Courtney.
Connie - clearly his name is appropriate for his will to live and God’s will. Two miracle babies with hearts of lions. Clearly God has a purpose for their lives.
12/11 - Will on ecmo. Chris named conversation Gods Will
12/24 - Courtney has held Caroline quite a bit and doctors seem optimistic that she will make full recovery and may even leave hospital without meds, painful to wean off but she is doing well. Little Will still fighting but his little heart so very weak. I am still praying for complete recovery but will somehow find peace if Gods plan is different
1/7 –I just finished reading Charlottes Web to Will, it is emotionally draining and reading helps, I figure he likes too. Good thing is doctors saying when he goes home instead of may not make thru night. Prayer is powerful and I know Gods hand is on him or he would be gone, Caroline too, they are amazed she went home
1/11 - they are scheduling to put a trach in, idea is over time he will grow new air sacs and new ones would outweigh bad ones. Amazing he is still here fighting
1/19 - it is getting hard. He was doing so well
Connie - Candy it only takes one miracle. This can happen. Don’t lose hope.
1/29 - CT (Christopher, my son, Courtney’s brother) just sent news of baby coming mid august , everyone getting a cousin.
Connie - oh my goodness. What a blessing will be like jos boys and little women out at the farm.
Me - when it rains it pours, will be whole basketball team. Lil wildcats.
1/31 Connie - how is Courtney’s health I keep thinking about how she is still recovering from surgery and taking care of newborn and back and forth to hospital. Really shows what a mother is capable of
Me - Shes amazing, already running when she can, probably overdoing but that’s just a given for most mothers.
2/12 Connie - Candy I wish I was there to help you I know its just one hit after another I don’t understand why you have to go thru these trials but you are so strong and so is Courtney just remember how you climbed out of grand canyon with blood soaked shoes and you made it.
Me - I wish I could just do that as many times as it took to make up for this, not sure how much more I got. You are my greatest role model for not being bitter, remaining compassionate and empathetic so I will keep on but could endure more physically than emotionally. Courtney is sick and now today echo showed multiple clots, I just so wanna have something great to say how are y’all, I hope well. I will not grow weary, I will not lose heart, just read that
“Therefore since we are surrounded by such a great crowd of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us. Let us fix our eyes on Jesus, the author and perfector of your faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the throne of God. Consider him who endured such opposition from sinful men, so that you will not grow weary and lose heart.”
Connie - ….one day we will see the bigger picture and understand
2/13 - I am not physically exhausted but emotionally as low as I can be (or hope) I know you know how it feels. I wish I could walk 10 miles but don’t want anymore bad news
2/17 - This brings me such joy
2/17 - I rocked will last 2 days, so weird cause he looks better but heart is weaker and now doctors don’t think kidneys will kick on, can’t have transplant till 20 pounds and not sure he would be candidate cause of heart/lung situation unless they transplant that too it is like running a race with no finish line Connie, … but new mantra, Hebrews- do not grow weary, do not lose heart. … Of course last night when I left Courtney’s on my bike I bawled like a baby…. I wanted to call you last night but couldn’t get a grip on myself and needed to get home, hadn’t showered for two days and actually grossing myself out…sorry I wrote an essay, I should’ve worked this hard in college.
Connie - the mantra from Hebrews is so perfect
2/18 - I am with Will right now and he is sleeping in new pillow, he likes to sit up. Really starting to show his personality
2/19 - Will had a good week but positive (fluid balance) again, hard to keep neutral
3/1 - Will had a hard week, swollen again. Last week was so good. I cannot take it when he is in pain. it just crushes my spirit I am still begging God to heal but am resigned to fact that more peace might be offered if he took him I know God won’t give more than we can bear but am afraid its getting close. I have enjoyed listening to Billy Graham on radio this week. You know I accepted Christ at crusade in Lexington around 1971. Daddy took me and I walked down by myself and accepted Christ –sermon was on Elijah, we sure are blessed
3/3, 4:28pm - apparently they are seizures. one lasted 20 minutes , seems like his body is just shutting down
8:32pm -seizures are still going on
10:27pm - C asking if seizures went on what would happen, doctor said he could wake in catatonic state. I am starting to feel this is too far and wonder when doctors will say its too much. Its not the same child as last week, I feel like we are destroying something God gave us cause as humans we cant let go. What have you learned and taught in your death and dying class about this emotion. I don’t know maybe the devil is swaying me to have these thoughts. This is hard, I worry and think I could go crazy.
Connie - I don’t think it’s the devil making you have those thoughts, I think it comes from place of love. Love and wanting to share your love with this baby in this world and not wanting him to suffer. Honestly we both know its in Gods hands. People and babies die when no one expects it and will lived when no one expected it. Maybe you just needed this time with him to be at peace if he does go home to heaven. This blessed time to hold him and just be with him its all so precious the book I use says doctors are very reluctant to give up on children, they will let older people go but the younger they are the harder they work to save them, I think that it comes from place of love. It is so hard to be conflicted but in the end you will find peace
3/4 - after sleeping on all my conflict and questioning I am convinced risks are outweighing benefits and would be at peace to let natural process occur, I know my conscious is heavy with guilt of all we are putting will thru cause we want him here, it is not about quality/quantity of life it is about mercy and having peace with letting go of something we love so much, you are right harder with baby but I do believe when you truly love you sometimes have to do something more painful. I think about woman in bible that made decision to let other woman have her baby when king was saying to tear in half and give each half, I need to go reread but you know story. Anyway I want you to know how much help you have been and I am sorry if I have not been as sensitive to your hardships as I now understand more fully, I have always prayed for you and family but now can pray in a much more intense way and I will
Connie - I think it is okay to let nature take its course I think that was your mothers philosophy and I respect that so much, we also let my dad die naturally, the day of Elizabeths funeral I asked myself if I would bring her back if her body was extremely compromised and my answer was a definite no, I would never choose to let her suffer like that. Her death was the hardest thing I have ever dealt with but I know there are things worse than death Shelby is happy and not in pain, he often tells me he is happy. It is not the life I would have chosen for him but it is part of Gods plan so I am at peace with it and we make it work. Also you have always been loving and kind and understanding with all my trials but if your perspective was limited because you had been spared this suffering then all I can say is I wish your perspective was still limited, I wish you did not have to go thru this but if there is value in suffering it is empathy, love and kindness. A nun spoke of the –lucky dark - suffering is so dark but it is lucky cause it gives us the opportunity to grow in wisdom and spiritually. Dark underwater mud is like suffering but it nourishes the beautiful lotus flower, without the dark the lotus can never bloom.
3/5 - he is so sweet, easy to comfort, loves to be touched, very endearing child. I think a lot of people up here are very attached to him. I will have total peace if they decide no more rescues, to let him go in peace, C said they could keep him like this forever- which I find kinda scary
3/6 3:05pm - Courtney rocking him. He is peaceful. She is just too young to know this pain. I would do anything to of kept it from her, just anything.
6:47pm -he is still peaceful in Courtneys arms. He is free now with little angel wings on ready to go but I think holding onto his sweet mother. Not sure when God will take this sweet cherub but he has blessed us all just knowing and caring for him. Connie it is just so painful- I or no one can know unless you do it. I am so glad you have never gotten bitter and have always showed such empathy and kindness- it is something to be admired and emulated with genuine sincerity -thank you for that and your commitment to Christ
Connie - I had no idea that much pain existed in the world. I wish I could take this from all of you, especially sweet Courtney.
3/7 12:09 am – Will is with God now. He looked beautiful and was very peaceful- I agree I didn’t know so much pain could exist. I do find great peace knowing he is perfect and no pain but watching Courtney was just heart wrenching. Thanks for so much support. I guess I knew Friday night when I was there and doctor came in to see him. I heard her talking to nurse and telling her to call her if anything changed and that she didn’t think he would make it thru weekend. That’s when she asked me if I thought Courtney would be able to talk about DNR (Do Not Resuscitate) code I knew I had to help Courtney process different scenarios His little heart just got hurt too bad I guess. I took picture of Courtney holding him earlier tonight
“Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what Gods will is-his good, pleasing and perfect will.”
Connie - my heart aches for you dear friend. all the love in the world and all Gods love cannot take the pain away but the love will cradle you until you find your way out and find beauty again.
Me - We will find more beauty, more appreciation and have more empathy because of Will-even tho we only had him for 96 days his impact is enormous and we are blessed
Connie – yes you are blessed to have had this little angel with the lions heart in your life , love gives meaning to our lives because you have unbounded love for your baby the pain will be unbounded too.
3/8 - Connie my heart re-aches for you I hope I haven’t caused you too much pain but you were the only one who could know how we really felt but if someone said they could take this pain away I would say no cause that would mean we wouldn’t of had Will and he is such a blessing
Connie –I feel so privileged to share my thoughts and feelings with you and to have you share with me it never causes me more pain cause the pain is always there sharing that pain with others who had the same loss is a bond that no one else understands but I did not want you to share that bond with me but as you said taking that bond would mean taking away his amazing life. once when I was in college a nun talked about her work in the neonatal icu and she talked about the drug addicted baby who only lives one day. Another nurse said the babies life had been a waste. the first nun said the babies life had not been a waste cause he was loved she had loved that baby and love brings meaning to our lives will , will be loved for decades and decades , especially by Caroline, they were womb mates and I am sure she will never forget her brother as you said in one of your texts you will use this suffering and Gods grace to be more caring and loving and empathetic because of Will.
3/9 - I had 3 dreams of Will running around as little boy in the clouds. I didn’t tell Courtney till other day they were always in the clouds. Courtney is channeling her energy working with Wills heart doctor to donate to his patrons of the heart mission. that was the doctor she trusted most and was always optimistic , she had to wait till Tuesday morning to talk to him before she could make decision. her other favorite doctor came and reassured that it was right and will was in good place now. The heart doctor does 10 or so heart procedures a year for children from all over the world, they raise money to get them here to do surgery, I think he has even adopted one we are hoping to start a foundation that would help support his mission. I know these will be most impactful days of my life and I want to honor his life however we can, he was so sweet, you would of just loved him.
Connie - this is going to be an amazing foundation and do so much
“Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.”
I think about Will and your family often. There are so many times when I look at my sweet baby boy and think how God has blessed me with this tiny human life. I think about how thankful I am to spend my days with him especially knowing that your family only had a short 96 days with Will and most of those days were spent in the hospital. Not only were you blessed to have Will, but he was blessed to have you as parents. Will’s life and legacy have had such a significant impact because of the faith that you both have had in Christ in every second and season of his life and death, trusting that God has bigger plans than the ones we have for ourselves. This life is fleeting and short, but life with Christ is long and fulfilling. I am thankful that Will is already getting to experience that in Heaven.
When Will and Caroline were born and subsequently re-admitted to the hospital, it brought back many of the emotions I felt after my daughter was born and she spent some time in the NICU. During his short 96 days on earth, Will showed such strength, perseverance, ability to overcome the odds against him. He was such a fighter. His life has such meaning! What a great legacy.
Most notably for me, watching the way Courtney and Taylor handled experience taught me a lot. They have shown grace and the Love of Christ in such a unique way. I’ve always know Courtney to keep a journal near by and frequently seen her writing but never been privy to those thoughts. Her courage in sharing her thoughts and the depth of her emotions has been so inspirational to me. For now, I’ll hug my babies a little tighter and look forward to the day I can meet Will in Heaven!
Brittany Trumbull, P.E.
This has been a difficult season for my family in many ways. In the first six months of the year I almost lost my husband to cancer, my mom died suddenly of a stroke as she was shopping for a dress to wear to my daughter Madison’s wedding and Madison was married and is expecting our first grandchild in February. So much despair and so much joy all at once. That is what I think about when I think about Will and this season of life. Despair and Joy and finding that joy and having gratitude in the darkest days, knowing we are never alone.
Courtney’s writing is BEAUTIFUL. The most beautiful part about it to me is how her consistent faith in God’s WILL shines through every word. God’s baby Will and God’s will for Courtney’s family and so many touched by their story. I know she has many hard days but her faith has not wavered from the time before her babies were born until now. My mom works at SMEDS. The Hughes and the Corrs live within a couple of blocks of my parents. One of my best friend’s mother’s is best friends with Candy. Courtney is the top seller on my Beautycounter team which is spread out throughout the South. Through so many different vantage points, I saw the hope and faith of whole communities grow as miracle after miracle occurred and people clung to her perspective and confidence in God’s Will.
I lost our first baby boy on October 28th. He was born early in the morning and never took a breath on this Earth. Will’s story, and your strength, Courtney, have carried me through some of my darkest days. Sharing his story is one of the most selfless gifts you could ever give another woman who finds herself here with us. Will is perfect in every way. I like to think that as much as we wanted our precious babies here with us, God needed our sweet boys with Him more. They’re our guardian angels, waiting for us on the other side. Love to you, Courtney.
My story begins with Will’s older brother Joshua. Sweet Joshua was in my class while Courtney was pregnant and gave birth to Will and Caroline. We were excited and celebrated with Joshua each day as their birth date approached. The twins were born and Joshua was beaming with pride! (It’s always so special to watch students gain family members and come back to school and tell us all about their new brothers and sisters.) After the twins became sick and were in the hospital we prayed at every circle time with Joshua and the class. He would give us updates in his four year old way and we would continue to to pray for them. In March during circle time we were praying for all those who are sick or sad like we usually did and Joshua spoke up to correct us that Will wasn’t sick anymore. We asked him again, and he said so angelically, “Will is not sick anymore, he is not in pain, he is with God in heaven” our eyes teared up as we now understood but I couldn’t help but push back my tears and the sadness because I was in total awe of sweet, loving Joshua. I didn’t cry, I smiled and asked Joshua if I could give him a big hug. He came over so sweetly and I just felt his childlike innocence touch me so deeply. An incredible moment in my life, and it was created by a now five year old’s wisdom. Joshua’s parents’ unwavering faith had traveled through him to me. Will Hughes and his amazing family have inspired me in so many ways, but mostly in how they have taken such tragedy and turned it into charity and how they have raised such beautiful children that spread the Lord’s word with their childlike faith. Matthew 18:3 says “Truly I tell you, unless you change and become like little children, you will never enter the kingdom of heaven.” After that day with Joshua telling us about Will I am forever changed and encouraged to stop trying to ask God why but to trust his plan with childlike faith.
What Will taught me, was to pray. REALLY pray, REALLY hard. I'm so thankful that i decided to buy Beautycounter from Courtney because I prayed so hard every morning because I was reminded of you and your sweet babies, fighting for their lives. Will also taught me that social media is such a powerful tool to mobilize an army of prayer warriors. It has its downsides, but I prayed for the specific things you asked with each update and knew that I was doing something important in joining the fight. The last thing Will taught me was that God redeems pain. Which is different than making it go away - I know you will experience deep pain for the rest of your lives because of Will's passing, but the ways you are allowed God to use your pain will have more impact that you will ever know.
Will King will forever be remembered by me and my family. Although we have never met, and I never got to meet Will, we lived next door to you for 2 weeks. We were in the PICU with our then-two month old (Betsy) in what I have now learned was Caroline’s room. We were next door to you on March 6, 2018.
The PICU was a universe that I, like you, never really knew about. On arrival, I was scared and felt completely optionless. On one of our first days I remember passing you in the hall. (I am fairly certain you were coming back from that little room with a breast pump and I was on my way there.) And you smiled. I hadn’t even made eye contact with another parent. But in the midst of your fighting - which I knew nothing about - you smiled. This obviously impacted me and I wanted to thank you for that.
I know that March 6, 2018 was filled with unimaginable sadness for you and your family, and I am sure every moment is sealed in your memory. However, I wanted to offer my very small observations from the room next door (with our hospital-mandated open door during a particularly quiet period of our hospital stay): I remember there was a lot of activity in Will's room in the days leading up to the 6th. I didn’t know anything about his story or his diagnosis, but I was worried about the uptick. On the 6th, I saw people coming and going all day. Honestly, it seemed like every doctor at the hospital stopped by. Some people greeted each other with hugs and handshakes. At one point, I heard your husband's voice telling a story (not the specifics of the story, I could tell from his cadence that it was a “family story” type tale), and I heard cheer coming from the room. I heard a baby’s cry and then the room immediately erupt with laughter. From a complete outsider’s perspective, there was joy in the room that day. Again, I am in no way underestimating that day for you (and my observations were, of course, very limited), I guess I wanted to share this to underline my admiration of you, Will and the rest of your family. In reading your posts, I am also in awe of everything that you and your family internalized and took such great care to analyze while the twins were in the hospital. Will is lucky to have you as a mom, as are your other children. You provided Will with joy and comfort until his last moment here.
While we were in the PICU, we had a priest, who is a family friend, come to baptize Betsy. After he blessed her and said a few prayers, he talked to us for a little bit. He told us that we did what we needed to do as her parents, and that we were so blessed to have a facility like Wolfson’s in our community. Then, with a smile, he exclaimed that is incredible to KNOW that whatever happens in the coming days is already done. It is God’s will. He indicated that we should take comfort in knowing that Betsy’s life will unfold in accordance with God’s perfect plan.
I got (quietly) furious. How dare he suggest that my child in this state was AT ALL part of His will. The rest of the day I stewed over his words. Eventually I calmed and accepted it (to a degree). And it led me to my constant mantra for the remainder of my time at Wolfson’s: be still. I needed to be still and know - that we are blessed to have this facility, this trained medical staff and the insurance to afford it. Ultimately, I needed to be still and know that God’s will will be done. Later in the day, I saw Will’s name tag taped on the window to his room. And I immediately read it as “God’s Will.” I know this sounds a little reaching. However, the rest of our stay whenever I passed by his room, I thought of him as that - God’s Will.
In a very self-centered way, Will has impacted my life by reminding me of just that. While we were in the PICU, I had one simply prayer screaming through my body. Months later, it is very easy to get caught up in the small and the seemingly annoying, and to get bogged down in the unimportant. But I am reminded to be still and know. Will’s life one earth was 96 days long, but filled with such a fight and such a purpose. He lived and he fought every single day in a way I cannot comprehend. He showed you what a miracle — breathing when science suggested that he shouldn't. When God’s plan revealed itself, Will went where he was called. I am inspired by God’s Will, and I am honored to have lived next door to him.
Sweet Will, I want you to know that you matter and that your story has not only impacted my life, but also the lives of the children and families with whom I work. I’m a child psychologist, and one of the hardest parts of my job is telling parents that their kids have a learning or neurodevelopmental disability that will likely impact the trajectory of their lives. I spend a lot of time working with families to devise plans to support their kids. While I think about how I approach these situations with families often, your story has made me think about this part of my job much more deeply. Your mom has been incredibly brave and has shared many personal details about your story. Even though you and I never met, Will, and even though much of your story takes place in a hospital with doctors and nurses and not in an office with a psychologist, it has made me more self-aware and conscious of the way the families with whom I work are experiencing and interpreting our time together. Because of your family’s story, Will, I always think twice about the language that I use and the message that I convey with my words and my body. I try extra hard to be a professional who is compassionate, empathetic, and available for my clients, and thinking about you often helps me to achieve those things. You will always be remembered and loved, sweet Will.