After Will passed, there were a lot of things that I expected. I expected to experience crippling grief. I expected to tear up or start all out sobbing at random times. I expected to miss him and wish he were here. I expected to have awkward conversations and have to help people who don’t know what to say feel at ease. I expected to be angry at times, to question why God didn’t just heal my son when I know He had the power to. I expected to get looks of pity and be avoided. I expected that I would never be the same because part of me died with Will. There are three things I didn’t expect - the fear, the thoughts and the happiness.
First the fear. Before our babies went to the hospital and we were faced with the reality of loosing them I had never really experienced true fear. I was a pretty fearless child and young adult. As a child I remember walking up the stairs in the dark before my brother in case there was a spider or "boogie man." My mom said I was never scared on rides like The Haunted Mansion or the Dinosaur ride at Disney World and in fact they tried to scare me but couldn't. I would pretty much try anything too. I went horseback riding, wake boarding and snowboarding, snorkeling and whitewater kayaking and running down every trail I could find. I was a diver and have done thousands of flips and twists off a three meter spring board. I drove too fast (and have lots of speeding tickets to prove it) and I was always willing to jump off the cliff or take the road less travelled (literally and figuratively). I never really experienced fear until I had a child. Then I got really cautious really fast. I was scared my baby would stop breathing in his sleep or get sick if I took him to the store or pinch his finger in the high chair tray. I feared that my child would fall on the playground and skin his knee or tumble down the slide. When they were learning to walk I was scared they would fall and hit their head. My oldest daughter has breath-holding spells and the first time she did that I was completely terrified. Sometimes I would read about secondary drowning or a child who unexpectedly was diagnosed with a terminal illness or a tragic accident that could have been avoided if only the child was buckled into their carseat correctly. We all have fears as parents but all those things that I read about, the real fear of losing a child, seemed like something that only happens to other people. I would sometimes put myself in their shoes and I was constantly playing out “what if this happened to my child” in my head but I never actually thought any of those scenarios would happen to my family. It’s just too much to grasp especially when your children are healthy and safe. I’m also not really an extreme worrier, but I am cautious and diligent about looking for ways to prevent accidents. I still cut my five year old’s grapes in half because I’m scared he will choke and I have a bottle of hand sanitizer around every corner but I never really thought one of my children would die, it just was unfathomable.
Now that it’s happened, I have a whole new outlook. The worst fear of any parent, losing a beloved and cherished child, has happened to us. There is literally nothing in this world that could happen to me that would be any worse. I shouldn’t be scared of anything - I have experienced the absolute worst fear I have ever had and ever will have. But I am scared. I am scared it could happen again. It doesn’t seem unfathomable anymore because it happened, I know what it feels like. So now my caution and diligence has been turned up to full anxiety mode. I am thinking not just about how to prevent the accident but about every worst case scenario, determined that we will not lose another one. Eating, swimming, sleeping, driving, bike riding and even simply playing have all become potentially catastrophic events that could lead to death. I promise that I can tell you how any activity could lead to the loss of my child - even if it sounds totally insane it seems like it could really happen in my mind. A virus took the life of my child and not some rare, intense virus, but one that nearly everyone gets in their lifetime. Life is fragile.
The side effect of fear is that it sucks all the joy out of any situation. I have to work hard to find a healthy balance. I have to be able to enjoy taking my children to the pool without letting the anxiety of them drowning take over. My children have to eat and I can’t throw every meal into a blender to prevent them from choking. I watch them, I cut their food into appropriate sized bites and try not to panic when my two year old shovels a whole bowl of food into her mouth. I have a hard time with things that might seem small - letting my child play at a friend’s house, dropping my son off at school, riding bikes in our street and even grocery shopping because everything could turn into a tragedy. I work hard to not let the fear take over because it's not fair to my children and not healthy for me.
Something else I didn’t expect was that I find myself thinking some crazy thoughts, mostly making space for Will in our lives. Thinking to myself where he would be if he were here this very moment. Maybe we are going to the pool and I’ll think to myself what I would do if Will were here, what order I would put his sunscreen on in relation to his siblings and where he would sit while we ate lunch and how I would hold him in the sling when Caroline was in the float and let them take turns. Or I’ll be feeding Caroline and imagine if his high chair were next to her and how I would feed them alternating bites (two spoons, of course). Or sometimes Caroline will be upset because she is tired or needs a diaper change or is hungry and I will plan in my head how I would handle it if Will was also upset. How I would comfort both or feed both or change both or get them both down for a nap. How I would load four children into the car instead of three, how I would bathe four (boys together then girls together perhaps?), how I would take the twins to their doctor’s appointments or where they would sit when we watched their siblings play outside. When I catch myself thinking Iike this I first feel so sad that he isn’t here, even if I’m making room for him in a chaotic moment, I wish so badly he was here to make it even more chaotic - I know that sounds crazy but it’s true. Then I think about how if a psychiatrist knew what was going on in my head they would probably diagnosis me with something because of how insane it is to plan for someone who will never be here. I’m not even sure why I do it. Maybe it’s because I had been thinking about how I would coordinate our days with twins for months before they were born. Maybe it’s because I was so excited to have both babies together, to see their relationship grow as they grew that I just still think of Caroline as a “they” instead of a “she.” Maybe it’s just to take the pain of him not being here away for a tiny moment and imagine our life as it is supposed to be.
The third thing I didn’t expect is to be happy, especially not so soon. I will never be the same, I will never be fully whole because part of me is gone. But I have an amazing family, wonderful children and I have had so many joyful days and happy moments even though Will hasn’t been a part of them. I have been listening to Kenny Chesney’s new album, “Songs for the Saints,” since it came out last week and there is one song that he sings with Jimmy Buffet and I alway think about how it perfectly describes grief. It says, “And now I must confess/ I could use some rest/ I can't run at this pace very long/ Yes, it's quite insane/ I think it hurts my brain/ But it cleans me out and then I can go on.” I can only grieve, grieve hard, for so long. I can’t constantly be sad, crying and weeping for my baby boy. Times where I tear up or get that sad pit in my stomach because I drive by the hospital or wish I could hold him the way I hold Caroline, those little moments happen multiple times a day, but they pass and don't take much out of me. But then there are times where I am just uncontrollably sobbing, wanting with every part of me to have my baby, that’s what I can’t do constantly - I can't run that pace for very long. But if I have those times of extreme sadness then I can move forward, be happy and go on until the next one hits. I know I should probably be finding comfort in something other than a Kenny Chesney song and I know the song isn’t even about grief, but I connected it to the way grief seems to come in and out. It’s always there a little bit, I think it always will be but it’s those times of letting myself fully feel sadness that allow me to go on and experience joy, contentment and happiness. I'm sure there will be more of the unexpected as we move further from Will’s last day on Earth, but for now I am thankful for these things that I didn’t see coming. I am thankful that with increased fear comes increased gratitude. I am thankful that even though Will is not here I can still include him in our days by simply thinking about him. And I am thankful that I can be happy, enjoy my family and experience joy in all the things that God intended to be joyful.
I didn't really expect to experience true happiness, especially not this soon after Will's passing. Part of me even felt guilty the first time I was happy because what kind of mother could be happy when one of her children was gone? However this summer brought a lot of unexpected joy, which, obviously, is good, as I played with my children and watched them create memories together. That's not to say there hasn't been a lot of sadness and a lot of tears and a lot of missing Will, but there has been a lot of happiness, a lot of contentment and a lot of joy as well.
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!