One year ago I woke up after a sleepless night of worry. One year ago I fed my little girl, laid her down for an early morning nap and got in the shower. One year ago I grabbed a purple long sleeve shirt from my drawer. Black leggings. Running shoes. One year ago my husband walked in the door and I whisked past him. I drove fiercely to the hospital and whizzed through the dark parking garage until I found I spot. One year ago I put my car in park and for the last time walked the path into the PICU. I rounded the corner and saw my son at the end of the hallway. For the last time I rushed into his room, hoping to find that he had improved overnight but knowing that he had not. One year ago I looked at Will and I knew that his time on Earth had come to an end. On this day, one year ago, I held my little boy for the very last time and on this night, one year ago, he took his final breath.
On that day and the days and weeks immediately following, it was hard to imagine getting to this day. The day that would mark one year without Will. How would I survive a year without my child? How could I survive a whole year of this pain, this hurt, this grief? A week, a day, even another hour seemed like to much to bear. Over the past year this amazing, unsurprising thing happened - time kept moving on. The minutes kept passing and weeks went by just like they normally do and now we have arrived at this impossible milestone. One year.
I recently listened to Rachel Hollis’ interview with Joe Biden. He was discussing his new book, Promise Me, Dad, about his son, Bo, who passed away from brain cancer. What I didn’t now about Joe Biden is that he also lost his first wife and young daughter in a car accident when he was about my age. Unimaginable loss. But he has gone on to lead a meaningful and purposeful life, professionally and personally, and it was inspiring to hear him talk about how he continued to move on, all these years after his devastating losses. At one point in the interview he says, “There is hope to survive that kind of loss and I believe you survive by finding purpose.” Nothing has been more true in my life this past year. Finding purpose has enabled me to move forward audaciously into a life I never imagined I could live without my son. Purpose as a mother and a wife that I never had before. Purpose in building a way to help other children who don’t have access to the type of care our babies did. Purpose in bringing together and impacting my community. Purpose in sharing the Gospel with every single living and breathing soul I can find. There is just one slight change I would make to Vice President Biden’s remark - I would change “survive” to “thrive.” Finding purpose isn’t just about surviving, it’s about thriving. I don’t want to merely survive until the end of my life, I want to thrive. I want my family and my children and my friends and my community to thrive as well. I believe we will.
When I think about the time passing without Will I often feel torn. One on hand, each day represents one day further from the last time I saw him. One day further from the last day I held him, kissed his sweet little face and wrapped his tiny fingers around mine. But each day is also one day closer. One day closer to when I take my final breath on this Earth and enter into eternity with Christ. One day closer to being face to face with God. And on that day he will be there, waiting for me to hold him in my arms again. It’s hard to imagine the pain ever going away after a tragedy or a loss and honestly, I don’t think it really does go away. I think instead of leaving, it just learns to lay dormant. First, for short periods of time and then a little longer. At first it occupies all the space in your heart and mind and it’s overwhelmingly present all the time. Over time it slowly lets joy enter back in and makes room for laugher and happiness and fun. The pain is still there but it learns to hide. Sometimes predictably and sometimes all the sudden it comes back with full force. It has to be always present because if we didn’t have the pain then we would have to give up all the love along with it.
Since I have young children and toddlers, my only illustration for this is, of course, a children’s movie. My children love the movie Inside Out and recently I noticed how clearly this idea is illustrated as one of the main lessons in the movie. In the beginning, the main character, Joy, is constantly trying to get rid of Sadness. She sees sadness as pointless, always causing trouble and even tries to get her to stay inside a circle - a circle of sadness - so she doesn’t mess anything up. Throughout their journey, Joy and Sadness experience a lot together and they have to work together to get back to headquarters (if you haven’t seen the movie I know this makes absolutely no sense!). At the end of the movie when everything is fixed, we realize that Joy can’t exist without Sadness. It’s even apparent in her physical appearance. All the characters are represented by one single color - Anger is red, Disgust is Green, Fear is purple and Sadness is blue. Not Joy. Joy is mostly yellow but she has blue hair. To me, that describes this past year more than anything. Mostly yellow with blue on top.
Sometimes one year ago seems like a lifetime away and others it seems like yesterday that I was holding Will in my arms. I can still imagine exactly what his little fingers looked like, how he smelled and how the indention above his lip looked like a tiny tear drop. I can easily take myself back to that hospital room, sitting in that red plastic chair with the curtains drawn and lights dim, and feel all the same emotions I felt that day. This milestone is going to come every year for the rest of my life and while I know it will always come with the type of acute pain that milestones bring, I want to use it as a marker to remember Will, all the love I have for him and all the ways that his joy has inspired others. It will always be a sad day, I’m not sure I can ever change that, but I hope that it will also be a day of hope. Hope in the future and hope in Christ.
“When we've been there ten thousand years
Bright shining as the sun;
We've no less days to sing God's praise
Than when we've first begun.”
When I was expecting our twins, I imagined their first birthday party, as I'm sure many pregnant moms do. As the day approached, I realized that I had barely thought about it, which is highly unlike me - I love planning and creating and details especially for my children. I thought maybe we should do something low key, Caroline was turning one after all and I didn't want to overwhelm her with a bunch of people. On the other hand, her life is a miracle and we should celebrate that! After some thought, discussion and encouragement, that's where I landed and planning a huge first birthday bash for our girl commenced. I designed the invitations, made the guest list, choose the cake and made the decorations. I distracted myself with every possible detail until I finally ran out of things to do. I had to face it. I had to face the one detail that I had been avoiding because it was too painful. I had to face how I would include Will in her party.
It was supposed to be some kind of twin theme with pink and blue decorations, something cute and fun. I wasn't supposed to be coming up with ways to remember her brother because he was supposed to be there, crawling around, smashing cake and looking confused as to why so many people were staring and smiling at him. Nothing seems right these days.
We included Will in some really special ways and the day ended up being less painful than I had imagined. I was prepared for the worst. We invited many of the doctors and nurses who took care of our babies and it was really special to see them. I could tell how excited they were to see Caroline, so big and healthy. We had so many friends and family join us, giving me little hugs and sweet glances, saying what didn't need to be said in words. I didn't cry or get emotional when we sang happy birthday. I just focused on my baby girl who had survived a terrifying brush with death in awe of her presence, determination and perseverance. I was reminded, as I am often, how blessed I am to be her mom and how much hope I have for her life. Instead of gifts, we asked all our guests to bring a note written to Caroline for her to open on her sixteenth birthday. I watched the notes pile up in a little wooden basket and imagined that day, when she is a bright-eyed teenager reading those letters for the first time. I have wondered many times when she will realize what a treasure she is, maybe that moment will be the one.
Our girl had a great day, she won't remember it but we have a lot of sweet photos, notes and memories to share with her when she is older. It seems like a huge milestone that we are now past, but at the same time it feels like just the beginning of a lifetime of celebrations, milestones and special days that will always be missing one very important person. Happy birthday, babies, you are loved and cherished.
A few ways we included Will - a photo collage displayed from the twin's birth and an actual height and weight bear made from Will's clothing and blankets. We got three of these handmade from The Pretty Piggy and gave one to each of our children for Will's birthday. I hope they will cherish them forever as much as I do!
The doctor who saved Caroline 's life and one of our favorite nurses who took care of Caroline and Will made the celebration extra special!
Some of the decorations - a yummy cake, monthly photos of Caroline and a special plate for her to have as a keepsake. Whenever I glanced at the plate I seemed to always fixated on the number of days - 365 days - just the beginning of her life. Will only got 96.
We got these sweet cookies made as favors from Bake or Eat Sweets. She had the idea to do a "twin cookie," which I loved! I choose the little hedgehog to represent Will because he had a hedgehog blanket that he used a lot in the hospital.
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!