There was a long night while my son was in a coma in the PICU at Children’s Hospital when I couldn’t stop crying. I paced the halls, I stared out the window. I cried. I needed to talk to someone who knew how I felt. I had the phone number of a mom whose son had died from DIPG the year before. I didn’t know her beyond email. She said if I ever needed to talk she’d be there for me. So I called her.
She knew immediately how to talk to me. She said I could ask her anything. My first and only question was why didn’t you kill yourself after your son died? She paused. Said it was a very important question, one she’d given a great deal of thought. She gave me such a simple, personal and honest answer that I’ve replayed it in my mind a thousand times since.
She said DIPG took so much from her family. She reached a point where she wasn’t going to let it take one more thing. Not One More Thing.
I’m thinking about this now because I’m a few days away from the anniversary of my son’s diagnosis. There are a handful of days that are tied for the worst day of my life — my son’s death and burial, but also the day he slipped into a coma and the day he was diagnosed. Diagnosis Day was the day that changed everything. Our life got divided into Before and After. Problems got divided between before and after, the after ones being problems we never thought we’d have to deal with. For us, Christmas is Diagnosis Day, which is particularly horrible for my husband. He used to love Christmas.
The list of things that were taken from our family after my son’s death is unmeasurable. But it has to end somewhere. It ends with Not One More Thing.
It was announced that Ted Nugent is headlining my local county fair this summer. He’s an aging 70s rock star who spouts hatred, misogyny, prejudice and alternative facts. I wrote a letter to the fair committee and said that after a decade of enjoying the event I won’t be bringing my kids this year. I’m disgusted that my community is hosting this a-hole. I’m pissed off. I’m…playing right into Ted Nugent’s hands.
Ted Nugent issued a statement in response to the controversy that said, “Only liars and America hating scumbags have a problem with me.” WTF? This pissed me off more. Then I get pissed about letting Ted Nugent piss me off. Then I think about how our culture is addicted to outrage, and how the media feeds our outrage, and I get even more pissed off at the whole circle of outrage…F-you, Ted Nugent, for setting me off.
The whole thing makes me feel like I should do more yoga and meditation. Then I feel guilty for not doing enough yoga and meditation. It’s exhausting. And I’m tired of feeling exhausted all the time. And this pisses me off all over again. Is this ironic? Or merely Alanis Morissette-ironic?
But then there’s the flip side. Let me switch gears for a moment. I’m also hopeful about certain things. Like my kids. They calm me and ground me. They are my hope and joy. I’m excited to watch them navigate toward their goals despite the inevitable obstacles and frustrations they will face. I’m excited when my son talks about politics – he’s twelve and he’s into politics! He wants to make the world a better place. (He also wants to play Fortnite all the time, but oh well.)
The smile on my daughter’s face is brilliant. It fills my heart. I love watching her think. It’s like magic. The greatest thing about being a mom is the love. There’s nothing like it. The worst part is the worry. It never ends.
Which brings me to my fears. Loss is my biggest anguish. Although loss is a normal part of life — we lose our keys, hair, money, friends, jobs, our way — some of us lose our children and that’s irreparable. The loss of my oldest son keeps me up at night and it’s why I live in two worlds at once. But I would still do everything the same even if I knew having him would end with loss — I would still suffer the enormous heartbreak if I could be his mom again. And I would move time and space to make it happen.
Yesterday you held my hand, now you hold your phone.
You drew me pictures, now you send emojis. You never left my side, now you rarely leave your room. You wore clothes with characters, now you wear labels. You played make-believe, now you play Fortnite. You checked for loose teeth, now you check Snapchat. You hid from thunder, now you barely shudder.
Yesterday I was your world, now the world is yours.
Sometimes I can’t remember my dreams. I can go for weeks thinking I don’t dream at all. Then there are times when I have a flurry of dreams and remember multiple ones from the same night.
Lately, it’s been one of those times.
I’m having a bunch of anxiety dreams that are all thematically connected. As you will see, my subconscious is, apparently, cousins with Captain Obvious. Or she knows how dumb I am and decided to smack me in the face with symbolism.
Of course, these being dreams, they plod along in that ridiculous and bizarre way dreams do that make absolutely no sense. Until they do. And then they don’t again.
Basically, the gist is I don’t know where I’m going, I’m unprepared and overwhelmed. (Duh, who isn’t?) If anyone’s a dream analyst or has some insight, here you go…
- I’m at a huge resort with rooms and doors and hallways and stairways everywhere. I’m dragging my luggage behind me. The numbers on the doors don’t make sense. There’s a big atrium and I can see where I’m supposed to go but there’s no reasonable way to get there. I keep banging into people and can’t understand the language. Suddenly all the people are gone and a group of old women pick up the beach towels that are left everywhere.
- I’m at my high-school reunion but there are also people there from now. I’m playing volleyball in the lobby of the hotel/convention center with people from my childhood whom I don’t actually know, I only know their names. We aren’t supposed to hit the volleyball with our hands. We all have a pair of drumsticks and we are supposed to hit the ball with those. The volleyball turns into a giant inflatable yoga ball and we get better at the game. There’s a huge circus in the banquet room across the hall that other people from my high-school perform in.
- I’m at an unfamiliar airport and I’m dragging my luggage around and I can’t find my gate. I get stopped at security and panic that I’m going to miss my flight. They let me go through a secret door but once I’m on the plane it has stadium seating, like an auditorium. The plane flies too close to the ground and I’m afraid we are going to hit the telephone wires or crash. I want to leave but I’m told this is where my seat is. We make an emergency landing behind a drive-in movie theater. I see a bunch of other planes fly the right way.
- I’m performing as a Vikette again. The routine is about to start but I don’t know any of the dance moves and I can’t find my pom pons. I didn’t warm up so my kicks are bad. Everyone is mad at me, especially the girl whose pom pons I took. I pretend I know what I’m doing but ruin everything. I don’t understand why I had to go through with it, why couldn’t I just sit this performance out?
- I’m at a sprawling underground cafeteria that serves practically everything. I waste a lot of time looking at all the food presented on plates and figuring out what I’m going to eat. Some of the food moves along a conveyer belt. Some of the food is behind velvet ropes. It goes on and on. The food is nicely lit and looks good but I can’t find anything I want to pay for. The cafeteria is under the dorm where I live, where I share a room with three other girls who are much younger than me, whom I hate. They are mean and I never spend time in my room. They threaten to throw away my furniture. I find other places to sleep.
- I’m away at college and I’m exploring the quad and town. I walk blocks in the wrong direction, then turn around and walk back but I don’t end up where I started, which confuses and scares me. I retrace my steps but I wind up someplace where I know I don’t belong. I try to blend in. I look around for cues. The stores and restaurants are unfamiliar. I’m late for class and don’t know where it is. I haven’t done the assignments and fear I will flunk and never graduate. I finally find my advisor’s office, but he’s not there. I tell anyone who will listen that the problem is I just don’t understand math.
So these are just a recent few. I’ve always had stress dreams (being chased, running on all fours, etc.) But sometimes I also have fantastic flying dreams that I love.
I’d love to hear what you dream…