There Are Days

There are days like this one. Getting out of bed is difficult. You know what’s ahead. Changing a wet diaper of a 7-year-old. Mixing the medications for the morning nebulizer treatment while preparing the correct amount of Pediasure with water for the daily nutrition. Was today the day he gets the steroid? I wonder if he had a BM yesterday? Better add the Miralax.

I check the blog and read the news before I push his “life cart” into what used to be our living room and now called the “therapy room.” I then lift the sleepy 40-pound body into my arms. Gotta be careful. The last time Joan rushed this maneuver she really messed up her back.

The two syringes of meds are pushed into the feeding tube. Since the nebulizer is almost done I hook up the inhaler for the two puffs of Flovent. I attach the feeding pump and check the dosage: 120 milliliters of food per hour. If all goes well he’ll finish around 6 or 7:00pm.

As I get ready to take my shower I hear him coughing up a bunch of phlegm. I go back downstairs and turn on the suction machine. Man, he is really junky today.

The morning chores go by quickly. I watch Jessie through my office window. She’s playing with a friend on the neighbor’s swing set. Later we’ll pack her up so she can visit the friend’s pool and be ready to spend the night with her: typical summertime activities for a child. I go back to check on Ben. His arms are reaching toward the dining room table.

“I know, Ben. I know you want to paint. I can’t set you up right now and sit with you so you can paint. I have get ready for the show this weekend.” A touch of sadness and guilt creeps into my conscience. He can’t get up on his own. In fact he can barely sit up on his own so I can’t even leave him alone in his wheelchair for him to play with his toys. So he will lie there on the floor for a couple of hours until I can make time to do some leg exercises.

Before I head into the studio I give him his afternoon nebulizer treatment and then surround him with a few of his favorite things. I pick up the monitor out of the bedroom so I can listen to him fuss at me for an hour or so because he is alone.

All is quiet now. I can hear the spinning thing on the feeding pump that administers a little bit of formula every few seconds. I walk downstairs and find him asleep. No doubt he was bored. I place my hand on his forehead. Good. No fever. I start to leave the room and then it happens.

A creak in the floor, a car horn outside, a bird singing in the tree outside. Whatever startled him awake has made it begin. He begins to shake uncontrollably. Eyes filled with fear roll back toward the top of his head. He’s struggling to breathe. Nothing I can do will make it stop. He doesn’t even know I’m in the room with him.

I pick him up though and hold him close to me. I whisper encouraging words. “Ben, you’re okay. Calm down now. Just relax.” I say these words to comfort me because he can't hear them. I watch the clock. 30 seconds seems like an hour but his body is beginning to relax. I smile at him but he shows no emotion. For the next 10 minutes I can feel tremors pulse throughout his limbs. Finally he looks at me and smiles. It is over.

I sit him up in my lap and we talk. He instinctively grabs my free hand with both of his and hangs on tightly. This is his effort to make me stay. I unhook the pump and carry him up the stairs and into the studio. I’m now behind schedule but I need for him to be near me. He will be a distraction but a kind and smiling one. The feeding will have to wait until later.

I place him in the beanbag chair so he can watch me. Once more the arms reach out toward my easel. “Yes, Ben. I know you want to paint but Daddy has to get ready for a show this weekend. We will paint again soon.”

And there it is again, right there at the edge of my conscience. That familiar emotion that never goes away. It is an unwelcome guest that took residence the day we watched the first troubling ultrasound. The Guest always demands things that can't be done. It asks questions that can't be answered. The Guest taunts me and reminds me I can never do enough.

The arms just can't reach far enough...