I didn’t write a lot this summer. We moved, travelled and got a puppy but if you can believe it those aren’t even the reasons why. For about a year after Will passed away it seemed that everything poured out of me. In a kind of twisted, desperate way I wanted to remember every detail of what happened during Will’s 96 days on Earth. I hated so many of those days and some of them I will always hold in a little handful of the worst days of my life but each one had Will in it and I want to remember all the moments, even the most devastating ones. I want to remember the emotions, the timeline, the schedule, the medical words, the people, the setbacks and the victories Mostly I want to remember Will. I know that one day it will be hard to me to close my eyes and see his little face, his half smirky smile and his fuzzy peach head. I know I might forgot what his hand felt like wrapped around my finger or how he sat up in his little bouncer seat watching everything going on down the hallway. It is painful to think that I might forget what it felt like to see both of my babies outside of my body for the first time. It’s hard to imagine now, when it’s still so vivid, but I might not remember what it was like to hold Will on his first day or his last. Even though a lot of Will’s life was tragic and heartbreaking, it was his life and I don’t want to forget any of it. I’m glad I wrote everything and I know one day I will read it again, feel it again. But for now, for this summer, it was a season of settling in.
I first started thinking about this theme of settling when we moved into our new home. After everything is unpacked there’s the organizing and the decorating and the filling in all the little gaps of where we need a new bookshelf or whose closet requires more hangers (always the little girls). When the furniture is in place and the boxes are recycled, that’s when the real settling begins. Things get moved around, picture frames lean against the walls and the drapes dance from room to room as we decide what window they will cover. We are getting familiar with the house, it’s corners and spaces and oddly shaped kitchen shelves. There is this period of familiarization where everyone learns how to be in the new space we now live in. The same type of settling happened with the new puppy. Her name is Winnie. She is friendly and sweet and happy and her teeth are sharper than ten billion thumb tacks. There’s a lot of settling when it comes to a new puppy. A lot. We have to learn her habits and preferences and try to understand why she seems more like a vacuum than an animal. We settled into a new schedule with her meals and walks and letting her outside at least 10,000 times every day to run around like a wild beast, eat rocks and dig in the dirt. It takes a period to adjust, to settle, and then it’s the new normal. The old house, the family that didn’t have a dog, it’s now part of the past and while we will never forget those times, we are used to the new now.
It was a summer of settling emotionally too. For me, I feel that settling into a life without Will here on Earth is just beginning in many ways. It’s odd learning how to be a grieving mother. I’ve had to learn what it means to enjoy Will’s siblings without feeling guilty. What it means to raise three children instead of four. I’ve had to learn what it actually means to grieve for a lifetime and while I’m sure I have a lot more to learn, I got a very clear vision of what it’s going to be like while out on a hot, humid summer run. I was running and a tiny rock got stuck in my sock, right in the back at the top of my heel. It wasn’t painful enough that I felt I needed to stop running to remove it (it takes a lot to get me to stop running before the run is over) but it was just big enough that I knew it was there. When it would turn a certain way or I was thinking about it, the rock became extremely painful at times. For some reason I equated that rock to grief and compared it to loosing a child. Running in the Florida heat in July can make you a bit delirious, but I think the metaphor works. The pain is always present. Sometimes I barely feel it, I carry on throughout my day and I’m happy. I think about Will every day and sometimes even get to talk about him, but the grief doesn’t cause me to constantly breakdown. Other times, just like when that rock that would stab into the back of my heel, it’s really painful. Although it’s always there, sometimes it effects me deeper, stabs harder and feels more unbearable. I’ve been settling into that reality. The sorrow is never going away. There will be days that the pain is unbearable, days where I barely feel it even though I know it’s still there, days that I want more than anything to remove it and throw it away and days that I just walk around with it, a discomfort that has become almost comfortable because I know it so well. I knew it but it’s finally setting in, this is my reality forever. I will always be a mother who has lost a child. I will always know that pain.
School started this week. Will would have been 20 months right now, so not close to school age but for some reason I found myself thinking about him and Caroline going to Kindergarten. I had never thought about it before, at least not that I can remember, even while I was pregnant. The thought popped into my mind on Monday morning. It was Will’s older brother’s first day of first grade. He ate breakfast and got dressed, he was excited and nervous and all the things a six year old little boy feels on the first day at a new school. I asked him to put his backpack on and staying with our tradition we took a first day of school picture by our front door. That’s when I realized that Caroline would be standing there alone. I made the thought leave and didn’t let it come back until our first grader was happy and safe in his new classroom. Later that day I shared the front door photo on Instagram and scrolled through, looking at all of the other first day of school smiles and backpacks and front doors. There is often this theme among first day of school pictures, the children are excited and parents have mixed emotions, often feeling sad to see their child growing up. I get it. I have put plenty of tear wall emojis next to captions about how fast my children are growing up. But as I thought about Caroline, as a Kindergartner standing in front of our door on her first day of school, I realized that the pain of watching her grow up is nothing in comparison to not getting to see Will grow up.
I love the stage we are in. I love newborn babies and learning to walk toddlers and I even love terrible two year olds. I know the next stage, the “big kid” stage, will be so much fun. I know it will involve lots of adventures and traveling and going to movies and not worrying about nap time or potty training or keeping track of pacis. But I like where we are. Honestly, a big part of me doesn’t want the next stage to come, I just want everyone to stay little and sweet and innocent. I want onesies and playing with baby dolls and snuggling and dress up. At the same time, I know that it’s such a gift. Growing up is not a guarantee, my child didn’t get to do it. The thought of Caroline standing by that front door alone paralyzes me and makes me cry all of the biggest, ugliest tears. Watching her grow up is hard and I want her to stay this sweet little baby forever. But watching her grow up without Will, that’s the part that really deserves a million tear wall emojis. This is what’s real and this is what I’m settling into. I’m settling into the hard, painful facts about what comes with losing a child. There is no finish line and no happy ending. It’s going to take a lot of endurance to keep on living joyfully with that tiny rock so constantly and painfully making it’s presence known. It’s going to be hard but I can do hard things. This is the race that was set before me, the one that I have to run with that tiny rock as my companion the entire way. I will run it with perseverance. I will run it with confidence. I will run it with joy. I will run it with gratitude. I will run it with purpose. That is where I’ve settled in, a place of joy and gratitude and purpose. A place where Will is never forgotten and where his life always brings happiness to others. I may not be taking his picture in front of our door on his first day of Kindergarten but there are a lot of other ways I can be Will’s Mommy here on Earth. It’s not the rock I would have asked for, wished for or ever imagined, but it’s there, settled in forever and I believe that if I choose to embrace it then it might even compel me to run my best race yet.
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!