Most of the time I feel like I am parenting all wrong but I don’t really know how to make it “right.” It feels like I am supposed to be handling “terrible twos” and sibling rivalry and discipline and screen time and eating habits in another, better way but I don’t really know exactly what I am supposed to be doing differently. There is no manual that tells you how to be a "good" parent. Yes, there is reading and conversing and advice-seeking involved, but mostly it feels like I am just winging it. You’d think with more children, more experience, I would feel a little more adequate or have at least some insight as to how to approach or respond to a certain stage or behavior or circumstance. Not really. Each child is so different in their personality and development that it oftentimes feels like trial and error and error and error and error. Maybe it’s just me, but the feeling that I could be doing everything better is present every single day and most nights when I lay up thinking about what I could have done differently. Regret over not spending more time playing or listening, guilt over cutting bath time short because it was getting so late, longing for more days of little feet and messy faces and sweet baby heads snuggled into my shoulder. It’s all there, day after day, just wanting to enjoy the moment, do it right and create the most magical childhood possible for each of them separately and together. Magical. It’s a word I think about a lot when I am planning our days, our trips, our time together. I want them to remember being swarmed with bubbles on summer days and building forts and making homemade ice cream. I want their childhood to be filled with laughter and fun and smiles and hugs. I don’t want it to go by so fast, I want their littleness to linger and not let them fall into the trap of growing up.
“What are we going to tell Joshua?” I asked through tears. I was sitting at Will’s bedside with my dad in mid-December. We had just been asked if we would like to stop Will’s support and just hold him while he passed. The prognosis was bleak, the chances of him surviving were small, pretty much non-existent according to the doctors. He had come off ECMO hours before. His heart was going to stop. His lungs were going to collapse. We had just talked with the neurologist. He came in with his white doctor coat and his old-fashioned medical bag. He was so kind, genuine and honest. He was careful with his words and cautiously optimistic because I needed him to be. We were waiting for Will to die, every doctor had said so at least. I held his little hand and gently rubbed his fuzzy head. “I don’t know,” my dad said, trying not to cry. If he cried I cried more, so he tried not to. I didn’t care if he cried, what else were we supposed to do? My babies were dying and at home I had a sensitive, sweet, almost five year old little boy who was expecting to hold his baby brother and baby sister again. He knew they were sick, but sick to him meant you have a runny nose or a tummy ache. It lasts a few days and you get to drink juice and watch movies all day. He was anticipating Santa’s arrival and his main concern in life was making sure enough sprinkles made it onto his sugar cookies. How it should be - a magical childhood.
My job was to make him feel safe, loved, valued, secure and fill his days with joy and fun. But how could I do that now? Now I was going to be the one telling him that his little brother was gone. He would never see Will again. While I had so many dreams of life with my twins, my four children in a perfect, blissful, bubble-filled magical world, he had dreams too. We had talked about teaching his little brother about how to build train tracks and passing down clothes and taking bubble baths together. Now he wasn’t going to get to grow up with his best friend. He wasn’t even five, how could I bring this hurt, this intense pain and suffering into his world? Endure the pain of loosing my baby boy, then inflict that same pain onto my other baby boy. How could I do that? What am I going to tell him?
I thought about it many times in December. I agonized over what that conversation would be like. I played out his possible reactions in my mind. The days went by and I never had this dreaded conversation. Time kept passing and Will got better and soon I stopped thinking about what I was going to tell Joshua. I started thinking that Will was going to be okay, Joshua could have the little brother we dreamed of. I started thinking about the normalcy of brotherhood again, the special bond they would share with each other. Then March came and I knew something was wrong. We all did. One morning I was in Joshua’s room, sitting at the end of his bed and talking to him as he was waking up. I looked at his bed full of stuffed animals and I saw Will’s bear. My mom had gotten it for Will and Joshua was keeping it safe until he came home. I asked Joshua what he would think if Will went to be in heaven with Jesus. He was looking down, messing with one of his stuffed animals, and without really thinking, without even looking up or making eye contact with me he said, “I would be sad that I don’t get to see Will grow up, but I would be happy that he was in heaven with God and that I would get to see him again one day when I go to heaven.” I tried to hide my tears, I didn’t say anything but I just pulled him in and hugged his little head. I didn’t know what I would say to Joshua, but he had just told me what to say. If Will’s life really was coming to an end, if the conversation I had been dreading was about to happen, I now knew exactly what to say.
I didn’t want it to be true. I wanted Will’s decline to be another set back, an infection that he would recover from, a bump in the road. I prayed for a miracle until he took his last breath. One of the moments I had feared since December 6 was over but the other one still loomed in the near future. I held my sweet, perfect baby boy in my arms as he took his last breath and now I had to tell his big brother. I had imagined it but the past few months I was convinced that it wasn’t going to happen, they would be together and the awful scene I played out in my mind was just that - in my mind and there to stay. We woke up the morning after Will’s passing completely numb. We had one task that day. One dreaded task. Joshua was at school, he and his little sister had spent the night at my parent’s house and they took him to school that morning, so we hadn’t seen him. It was the day he stayed for his after school activity, so pick-up was later than usual. All day to think and rehearse and anticipate.
We were sitting on the floor with Caroline playing in her gym next to us. The moment I saw him walk around the corner I started crying. “We have something to tell you buddy,” and then we broke his little heart. We told him, we held him, we all cried together. I was prepared to answer hard questions but he didn’t really have much to say. Since then, the questions have come, watching him process and trying to figure out what he is feeling and thinking is difficult sometimes. On top of all the hard things about parenting that I wish I could do better, I am now trying to navigate how to help a five year old little boy grieve. If there were a parenting manual, this would not even be a part of it because it’s just unnatural. Siblings should grow up together, their childhood should be enchanting, filled with playing and laughing and fighting and running and being silly together. They shouldn’t say goodbye when they are young. When they are old and one passes away, they should have years and years of stories and inside jokes and memories to share. They should reminisce with a smile and think about all the memories they shared that were only theirs - their childhood. They should get to become an uncle or an aunt and raise their children together and have cousin sleep overs and trips and dance parties in the kitchen. It doesn’t seem fair that a child should be robbed of all of those things and have to endure the most unimaginable pain that they aren’t even old enough to really understand or comprehend.
“What are we going to tell Joshua,” is now something that I ask myself frequently. As he grows up and gets older his grief, his questions, his feeling and his emotions will all change. I will constantly be second-guessing myself - how I answered his questions, if I am supporting his emotions adequately and if I am doing enough to help him grieve in the way he needs to. It’s a burden I feel incapable of carrying but God provided the words then and He will continue to provide them as we navigate a whole new, unexpected realm of parenting. I treasure both of my boys and I want them to still have a bond even though it won’t ever be in the way I hoped for or imagined. What I want to tell Joshua is that his little brother is with Jesus and he is no longer sick but completely healed and whole. I want to tell Joshua that his little brother was strong and sweet and cherished. I want to tell Joshua that he should be so proud of his little brother because he has made a bigger impact during his 96 days on Earth than most of us will make in an entire lifetime. I want to tell Joshua that his little brother would have loved him and looked up to him so much. I want to tell Joshua that I am so sad that I don’t get to see Will grow up. I am so sad that I don’t get to see them play catch or open a new race track together on Christmas morning or ride bikes up and down our street. I want to tell Joshua that his feelings and emotions are valued and valid and that he should never try to hide them because he is scared or embarrassed. I want to tell him that it’s okay to be happy, it’s okay to cry, it’s okay to question and wonder and wish. I want to tell him that his daddy and I will always be here for him, we will always miss Will with him and we will always, always try to give him a magical childhood. I want to tell Joshua that we love him, no matter what, and always will.
Will with his big brother, Joshua. They only got to know each other for a few days, but there was a lot of love between them. At the end of the video, Joshua is holding Will and says, "your brother is holding you." I will cherish that forever, knowing that Will knew the love of his brother and as Joshua said, one day they will see each other again in heaven. I can only imagine what a joyful reuniting that will be!
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!