It is October 30th. A Wednesday. E should be at preschool today. He’s not.
I need him here. Close to me. Where I can protect him.
In the six days since the diagnosis I have cried, prayed, researched endlessly, and cried again. The more I research the more I want to build walls around E. Big, thick walls. Like a castle. Like the castles he builds with his Legos. With a moat. And a drawbridge. A drawbridge so I can keep all the bad stuff away from him.
Except tomorrow I have to lower the drawbridge. I have to let the pediatrician into our castle.
I know we need to meet with him. To go over the diagnosis in painful detail. To hear that our little prince may never be able to slay the dragons of this life, or rescue the princess, or become the king of his own castle.
I don’t want to. I’m not ready to let all of that into our castle. With everything in me I want to turn the clock back. I want the diagnosis to go away. Meeting with the pediatrician will just make the diagnosis more real. More scary. More final.
I am about to brim over with tears – again. Tears of dreams dashed. Hopes held hostage by a diagnosis. I have to stop.
Comfort. We need comfort. We’ll make pancakes. E loves pancakes. They are one of the three foods he will actually eat these days. Pancakes, Cheerios and chicken nuggets. The beige diet.
I’ve had to get creative in how to get nutrition into him. Lately I’ve taken to making him pancakes that consist of pancake mix, vanilla protein powder, milk and eggs. He loves them. Thank God.
“E, let’s make pancakes!” I call from the kitchen. “Do you want to come help Mommy?”
No answer.
He’s on the floor in the family room – about 10 feet away – building an elaborate, castle-like structure with his Legos. The morning sun is shining through the window onto his back, warming him. He probably positioned himself there for that exact reason. He loves to be warm. He doesn’t go anywhere without his soft, light blue blanket that he’s had since birth. “Blue blankie,” we call it.
I walk over and get down on the floor next to him. Gently touching his back, I lean in.
“Buddy, let’s take a break from building. Let’s make pancakes together. Mommy needs your help.”
I hand him the wooden spoon, hoping that if I put something tangible in his hand it will help me break through into the world he is in at this moment. To lower the drawbridge so I can come in.
It works. He squeezes the wooden spoon and smiles. He knows that we use the wooden spoon to mix the pancake batter. I can see the wheels in his mind turning. Lowering the drawbridge.
As we add the ingredients to the batter bowl I describe each step to him out loud. If I keep talking maybe he will stay here with me. Not just physically. Mentally. I want to keep that drawbridge down. At least for a few minutes.
As soon as the stirring of the batter is complete, he runs back to his Legos. I guess I can’t be upset. I had him for a few minutes, and he completed the task that he had the tool for. Stirring. With the wooden spoon. That’s done so he’s gone. Back to building his castle. His castle that needs a moat and a drawbridge.
My mind wanders to tomorrow. The meeting with the pediatrician. I have to get my head right about this.
The pediatrician is there to help. Nothing he says or doesn’t say will change what is. He’s not the enemy. Not the dragon outside the castle. He’s a knight trying to bring another sword to this fight. To help us.
I breathe deeply, the smell of freshly-made pancakes filling the kitchen. “That’s for tomorrow, Susan,” I say to myself. “Take one day at a time.”
Today we conquer getting E to eat something with nutrition. That’s a battle all its own.
Today is comfort. Today we stay in our castle. Safe. Close. Together.
The next battle will have to wait. The dragon will still be there tomorrow.
The drawbridge creaks to a close as I steel myself for the battle ahead.