I remember a friend telling me that finding out there is something wrong with your child is like being trapped in a dark room with a monster. You can hear him, but you can’t see him. Getting the diagnosis--it is like flipping on the light and seeing the monster face to face.
Living with a child who has been given a terminal diagnosis is like being trapped in that room with that monster all day every day. You are terrified at first. You cry and tremble. You try the door over and over. Surely, there must be a way out of this room. But there is no way out. You realize you have to find a way to get comfortable in that room, with that monster. You spruce up the place but you sure don’t feel comfortable. Finally, you decide to tame the monster. You spend all day and night reading articles like, “How to Keep Monsters from Eating You.” And “How to Make Monsters Stop Growling.” And “What Monsters are Thinking.”
Finally, it seems you may have the monster under control, but you know he’s still a monster. You know you cannot take your eyes off of him.
Every day, you wake up thinking about the monster. Every night, you jump up when you hear him move. Monsters do crazy things in the middle of the night.
When that monster gets nasty, you pound on the door for help. Someone comes to give you advice. “Do this!” They say. “Try more of that.” And the monster calms down for awhile.
Some friends stop by to slip notes under the door. “You can do this!” They say. “How are you?” Some get tired because you never say “I’m great!” They are tired of hearing about that monster. It’s just too hard on them. “There’s more to you than just a monster!” they say. But they haven’t been locked in a room with a monster.
Sometimes it gets really lonely in that room. You feel like maybe you are the only one who is fighting a monster.
Then there are the people who come with permission slips and such. “Why haven’t you signed this yet? You’re late. We are waiting on you.” “Oh, I’m sorry. Just slip that under the door. I’ll sign it as soon as this monster settles down, OK?”
And then there are a few people who keep coming and just sitting. “Hey there. I’m sitting outside your door. I just wanted you to know I’m here. How's that monster?” Yeah, those people are special.
As much as you hate that monster, you know you have to keep fighting because life without your child would be far worse than a day fighting the monster. So you keep up your fight. You find out there are other people with the same kind of monster in their room. You write each other letters and you draw strength from them. Not everyone cares about monsters, but some people do.
Then one day you realize, you were made for this. You can do this. You were made to fight monsters. You are a monster warrior. Not everyone is a monster warrior. But mama, you are! And you see that monster differently. He doesn’t control you. He’s just a jerk, a nuisance. You put him in a choke hold with one hand. You knock him to the ground with a throat punch. Now he’s scared of you.
But you still always have him on your mind. You check the door every now and then. Still locked. But it’s OK. You’re a monster warrior.