Tuesday, February 2, 2010
Full glass of water
I'm a full glass of water. Don't tip me, don't bump me, and please don't add anything else to my glass. If you leave me alone I won't spill anything, I won't get anyone wet and I won't go anywhere.
Occasionally when people ask me how I'm doing. My response is "I'm a full glass of water". I walk around my daily life functioning with a full head and a full heart.
My head is full of tasks: grocery shopping, remember to send the order form in Owen's backpack, remember to set the DVR for LOST, call Jenn, Tanja, Dad, Pat, Rebecca and the Toyota service guy about some alarming recall? Get Dermot's prescription refilled, go to the hardware store for a toilet thing-a-ma-jingy, make cookies, fold the laundry, decide what's for dinner, Find a new physical therapist for Dermot, confirm his eye appointment, schedule flight to Arizona. Empty the dishwasher, fill the dishwasher, vacuum the dog hair off the living room couch...
My heart is full of grief and apathy: Wake up, get the meds ready for Dermot-pulimcort, albuterol, prevacid, then get the milk in his cup (rice milk because we think he's lactose intolerant) add the packet of thickener (Dermot aspirates liquids so we need to thicken all his fluids), sit down and hold Dermot like an infant to feed him his milk, burp Dermot like an infant because he's not strong enough to burp without help. Bring Dermot to kitchen, place gently and correctly in his Leckey Mygo chair, secure the chest harness and waist strap. Prepare his breakfast of soy yogurt and banana that has been carefully smashed with a fork, don't forget his waterproof bib and his therapeutic "maroon" spoon. Wait you forgot his other meds: Topamax, Keppra, Carnitine and Depakote...five pills and one syringe. After breakfast, roll Dermot into the living room, put socks on, fit Dermot with his SMO ankle supports, lift him out of his chair, very carefully lower him down into the stander and begin securing him, foot pads, knees straps, hip strap, chest harness. Ready, 1, 2, 3 up! Find a toy of interest for his tray. Sit with him for 30 minutes...done. Release the straps and harness, carefully lift Dermot out of the stander, gently place him on the end of the couch, take off the shoes and SMO's. Undress Dermot, then dress Dermot in his school clothes. Comfortable shirt and sweatpants with sneakers. Don't forget his glasses. Get his jacket on, be sure to start with his left arm because otherwise his arms are too tightened up to stretch out through his sleeves. Go to the garage, open the van door, grab the remote for the mechanical seat, adjust it to the correct position, go back to living room get Dermot, take his glasses off before picking him up, bring to the van, place him in the seat, all buckled in, put his glasses back on, move the seat back into the van, close the door. Drive to school, turn into the parking lot, adjust the disability parking sign on my mirror, park the car. Get out of the van, lift the 53 pound Otto Bock Kimba stroller out of the van, prepare the straps, lower Dermot's seat down and out of the van. Lift him into the stroller, secure the straps and harness, kiss him good bye and watch the teacher roll him into the classroom. Two and a half hours of down time begins now.
So much of my day is filled with tasks, all day long. Tasks I would have never imagined ever doing, I do these tasks everyday and because I do them every day I forget sometimes to feel anything about my day. It is moments like right now, when the house is quiet and I'm up WAY too late that I can let those feelings creep in for a while, "pour out some the water" so to speak so that when I wake up tomorrow and do it all over again, it seems normal to me. I won't think about how un-normal my life with Dermot really is. I think that's why "the guy upstairs" keeps parents like me so busy for the first years of our new journey, so we don't feel all of the pain and all of the anguish too abruptly. I wouldn't be able to function and do all of the things I need to do to be Dermot's mom. I'm grateful for that, I'm also grateful for moments like right now. Quiet house, not so quiet heart.