Editor’s note: Today marks the fifth anniversary of the death of writer/advocate Melissa Moore’s infant son, Greyson. Grey was born with hypoplastic left heart syndrome, a congenital heart defect. After his death, Melissa fought to change Oklahoma hospital regulations to require pulse oximeter screening. She also founded Greyson’s Advocates, a non-profit foundation to aid families with children in medical crisis. In this piece, Melissa talks openly about the ebb and flow of her grief, and offers encouragement to other parents struggling to survive survival.
By Melissa Moore
Melissa Moore and Greyson Moore
When our youngest son, Greyson, went into the hospital, lots of things became unimportant; yardwork, housework, basic maintenance and upkeep on our house and property, yes, but on ourselves as well. And once he died, well, my husband, Austin, and I were lucky to get out of bed every day and do all the other things expected of us.
Then, a few months back, I proudly declared on Facebook that I felt like a fog was lifting. A grief fog that I hadn’t even noticed was there.
Here’s something you may not know about deep grief, unless you’ve lived it: it is a living organism. It constantly changes, evolves. The first few months were unbearable. I think my husband would agree that if we didn’t have our older son to take care of, I’m not sure we would have lived through it. But having something to focus on made us keep trudging along. Eventually the day-to-day banalities of life get easier to bear, and then you find your “new normal” and settle in. Most of the time you appear to be a normal person, people who didn’t know you before may not even know what you’ve been through (and those who were acquaintances may forget).
But don’t get too comfortable, because you can be going along at a good pace and WHAM! A grief trigger. And sometimes those triggers are the strangest, most unrelated-to-your-situation events, or sights, or sounds, or smells… . And when one hits you, all bets are off. The “mini you” who lives inside your head has put on her pajamas, grabbed a bottle of wine from the fridge and crawled into bed with it and a huge box of chocolates. She is crying her eyes out, whether you are crying on the outside or not.
The good news is that these episodes of grief do become fewer and farther between (mostly). That doesn’t mean that I don’t still think of my son all the time, because I do. He lives in the fabric of my being, always present and always shaping my every action.
The most dreaded question for most loss moms when meeting someone new: “How many kids do you have?” Such a mundane, simple question, but let me tell you, it causes an immense amount of anxiety! If you just say a number, the follow up question of “what are their names?” usually comes quickly. I have become better over the years at making the people around me feel more comfortable about my son’s death. Long ago and definitively, I decided that I would never deny him. He fought for every second of his life, and I can live with a little discomfort when the subject comes up. As for other people and the discomfort they feel, I try to minimize awkwardness. So what genius, least-uncomfortable way do I answer? “My oldest is Tucker, who is 8. My middle child, Greyson, would be 5 had he lived, and my baby is Ella, who is 2.” See what I did there? They can choose to leave it alone if they want, or they can ask a follow-up question.
Austin Moore holds sons Tucker and Greyson.
Which brings us back to my arrogant Facebook statement that prompted this post. Within this “new normal,” I had no idea there even was a fog over everything until earlier this year, when it started lifting just a little bit. I finally looked at our backyard and saw it, saw how truly awful we had let it get. I knew it was time to work on it. New fence! Plant the garden! Make big plans to have the city haul off the broken chairs, the windmill and the other miscellaneous items strewn about the yard! I actually got out there and worked, piling the trash and planting that garden. We paid a small fortune to have the fence replaced. And then I made that proud statement about the fog lifting because it had been two or three weeks of this intense clarity, clarity that I haven’t had in the last five years. Shortly after, guess what? The fog came back.
What I’ve learned is this: I am now aware the fog is there. It is slowly lifting. There are many “clear” days but also many “foggy” days. If I can push through those foggy days, I truly believe that soon the clear days will outnumber them. Will they ever disappear completely? I have no idea. My grief will never disappear completely, not even close, that I know. I will always miss my son, always do what I can to make him proud and to make sure people hear about him and don’t forget him. I’m also fairly confident that those ninja, random grief triggers will always find a way to sneak up and gut-punch me. There will always be occasional days when I cry into my pillow at night, or into my shower in the morning. So I suppose the fog will never completely dissipate, but I look forward to – and will take much joy in – each and every one of those “clear” days!
You can follow Greyson’s Advocates on Facebook and Twitter @GreysAdvocates