I have so many specific memories during the time of his short life on earth. Conversations with your mom; play dates with Joshua; the Christmas pageant at school; Breakfast with Santa at the club; and the day I stood up from my desk, walked across my office, closed my office door, and sobbed all alone when I learned that he had been called Home. I remember so many things, but most especially, I remember watching you and knowing that the only way you were putting one foot in front of the other was by the strength of a God who you unwaveringly have followed and depended upon.
I don't know if you know that my father died very suddenly and unexpectedly when I was pregnant with Jackson. To be clear, when I think about losing a father in my adulthood versus losing a child, so young and tragically...there is no comparison, and I say that truly from a mother's heart. I cannot fathom the depth of that loss, other than to simply know the depth of love that went alongside it. I mention my father here only because I remember very intensely feeling a nearness to God in those days, and seeing a real opportunity to recommit and reawaken a connection to faith. People talk about losing their faith in experiences like that, and mine was very much the opposite. I am not a highly devout person, and I tend to be pretty private about my faith, but for whatever reason, there was a presence for me in those days. There was not a questioning or a pushing away from God, but really the opposite. It was a reminder that God would be with me through what I knew I couldn't handle on my own.
If I had to distill it down, to really say how Will has impacted me, it reminds me of those days when God is simply present and deeply felt. I am incredibly blessed to live a very comfortable and generally fairly easy life. All of my material needs and virtually all of my wants are provided for easily, as are the needs of many of my family and friends. And I think it could be easy for me to live in a space of complacency because of that. It is easy to walk through life thinking that I've got things under control all on my own, because the path is smooth and straight. Having obstacles that can only be described as insurmountable, has shone a real light for me on faith and the power of conviction. Your faithfulness has been such a source of inspiration to me. And to see your faith, through these experiences, has reignited that desire to draw closer to God in my own daily walk. So for me, that is my answer: Will has brought me nearer to God.
I had the privilege of interacting frequently with Will during his 96 day journey. He was a courageous child with a strong desire to live and recover from his illness. His strength was an inspiration. His biggest gift to me was introducing me to his parents. Taylor and Courtney are the kindest and most generous people I have ever met. I loved stopping by to see Will and get cross examined by Courtney! She would ask the same question in every possible way to make sure she received a consistent answer! Taylor and Courtney are brave, loving and unbelievably strong. Thank you Will for the introduction. I am a better person after meeting you and your parents.
Dr. Jose Ettedgui
96 days. Just 96 days. If I went to heaven today I would have had close to 17,000 days on earth. Will was on earth .005 of my days here and yet he has had more influence on the people around him. He has drawn more people to Christ, brought more people together in prayer, and helped more people than I have managed to in my 17,000 days. But I will do better. I will make my days count. I will continue to be inspired by your 96 days.
Will has reminded me that this life is temporary, and our eternal home is with Christ in heaven. Our earthly home is wonderful, but it’s nothing compared to what God has in store for us in paradise with Him. I haven’t experienced much death in my life, but I recently lost my Grandmother. After the initial sadness that came with finding out she had passed away, I thought about how much joy it must bring her to see my Papa, her friends and her son who she lost to cancer as a young child. Sweet thoughts of this reunion filled my mind and brought me so much peace. It got me thinking that one day I hope to meet Will in heaven and tell him how his life has made such a big impact on me and so many others. I’ll never forget sweet Will. I look forward to the day when I can tell my own son about his friend, Will King Hughes, and about the eternal life that is found in Jesus.
Elizabeth Anne Watterson
Will, precious child of God, you are blessing to those who mourn your short, but powerful life here in this world. You remind us, that while our paths are a mystery to our human understanding, there is the love of God steering them perfectly ahead. We grieve that we are not able to know you as we hoped, but are thankful for the good works and hope given to others in your memory. Will, your love still shines bright through the love of your family who are an example of God's faithfulness to all. Thank you for teaching us to love and shine even more brightly though our trials.
"I will not doubt, though all my prayers return
Unanswered from the still, white realm above,
I will believe it is an all-wise love
That has refused these things for which I yearn;
And though at times I cannot keep from grieving
Yet the pure passion of my fixed believing
Undimmed will burn."
I was in your son’s life for multiple brief moments while he was in the PICU. I was one of the many different echo techs who spent time praying and worrying over his heart and his life. I know all the uncertainties about his heart function must have been so frustrating, it was that way to us too. We wanted so badly for the function to be better every time we put our probe on his little chest. We asked for updates on him all the time, even on sweet Caroline. I did one of her last echos before she left the hospital to go home. She is beautiful, like a perfect babydoll. When I left her room after her echo I told your husband something along the lines of “I’m so glad she’s so much better! I hope Will will be too”. When our cardiologists informed us that Will had passed, my heart sunk. I didn’t want to believe that he wouldn’t get to go home and grow up with Caroline. When I was in the PICU the next day and I saw them cleaning Will’s empty room I couldn’t help but cry. He had sat in that room looking down the hallway just like you said before! It was his room. It will always be Will’s room. We have lost many babies/kids/teenagers but precious Will stays in my heart constantly. We only got to spend a little time with your incredible Will but he truly touched all of the cardiology team’s hearts. It is so amazing to see Caroline doing so well! And how Will continues to bless people’s lives by helping our patients from Patrons of the Heart is a joy to see! Those kiddos touch my life too and seldom do we get updates about how they are doing when they go back home, so thank you for sharing that with us! You are incredible for sharing your journey in your blogs. You and Will both have impacted my life. I see God all the time in the lives of the patients I meet but to see His hands so clearly illustrated in Will’s story is what is indescribable. He knew every breath Will would get to take. He knew the strength you would need to be there for your family and to be able to share Will’s story with the world.
First of all, your mommy is a rock star! She fought for you and loved you as long as you were here on earth with her. And she is fighting for you and loving you until she is reunited with you again. Your mommy is telling everyone about you. She wants us all to remember you.(And we will.) She wants to give hope and peace to those of us who are seeking hope and peace. (And she has.) Your life touched me Will. It restored my faith in humanity. In doctors. And in nurses. Your life showed me that we can point others to Jesus even in the hardest of times. Thank you Will for fighting so hard. I want to live in your neighborhood in heaven.
Much Love From Your Mommy's Camp Lurecrest friend,
#96days96 ways #day9
Following Wills story and especially your journey and thoughts since his death have impacted my sense of peace and how I choose to respond to my children when they are trying. I know it sounds cliche but watching you I have truly been reminded to focus on cultivating love and building intentional relationships and not to rush through any phase of their development because it is momentarily frustrating or difficult. I want to view every moment of their lives as a blessing, one that I understand not everyone gets to experience. Childhood is beautiful. Getting to be a mother to shape and cultivate their growth but also see the love of Christ through a fresh perspective in is one of the greatest joys of my life.
I want you to know that I prayed for Will and Caroline from the moment we heard you had gone back to the hospital. My heart ached for you. I prayed for your family, for your strength to get through each day, knowing that you still had children at home wanting your attention and the weight of two in the hospital. The exhaustion of having infants and that being compounded by worry and that heartache when you cannot do anything to help your child. I prayed. I would ask Joshua at school how the babies were, and we celebrated when he told me that Caroline had come home. I will never forget when he came into my classroom that morning and told me that “Will is doing so much better, he has gone to heaven, and he is better now.” I felt the world spinning under my feet. I had to sit, I could not teach. What amazing parents you are. I have followed your story and I am awe of you and your strength.
What has really changed me through your story and Wills life is watching you constantly point to our Father. As you have endured what I would imagine to be the hardest of trials, you have never stopped praising God and giving him glory. What a remarkable way that you have been able to use this very sad situation to teach others about the love of Christ, Including me. Thank you for sharing your story so boldly. You will be able to give so much to so many through your strength and testimony. I admire you. Thank you for opening up your heart to us.
I have been thinking about the ways in which Will's little live has changed me recently. After becoming a mom, the gravity of losing a child has been so much more real to me. One of the things Will has taught me is to be grateful for every day (every hour, every second) I have with my baby and to be present with her when I am with her. Will's strength and determination and his fight for life have inspired me. Not only that, but I have been so encouraged by the way that you and Taylor have responded to this tragedy in your life. You have pointed me to Jesus in the way that you have continued to trust and obey him, when it would have been so easy to turn away and live in anger and bitterness. Your lives are a beautiful testament to your faith in the promises of God and His love and faithfulness to your family during this heartbreaking time. So, not only has Will changed me but YOU have as well. I am so thankful for you and for all that you are doing for all of these sweet other babies. I love you!