My life with the Sullivan boys

 I just googled "trauma and loss". then "Grief and loss", then "loss over and over". No answers for me there. I recently talked about Dermot to some hockey moms who asked me questions about him. How old is he now? Do you have someone stay with him when you go out of town? What does he have? What is his prognosis. I appreciate these questions. I welcome the opportunity to shine a light on our experience, but I also underestimate the power of saying the answers out loud. more than once in a day. its real, it always is, but when you say it out loud, other people hear it. Other people ponder the possibility. that is scary.  I spend the majority of my time "running " from these feelings of reality. running from the constant loss that permeates my life.  I have "be still" tattooed on my body as a reminder to stop running, but it's the hardest thing for me to stop. I run in various ways. I actually run, 3-7 miles every few days. I run by k...

We are five minutes out of St. Cloud on Highway 15, at a stop light I contort my torso to reach back to put the oximeter probe on Dermot's tiny index finger. He sounds like an old fashioned coffee percolator...O2 78, yikes. "Dermot, you have to cough for me buddy!" no response. I'm on the highway, looking for the next turn off. One more mile, no coughs, the oximeter is beeping double time now. Finally, I turn off the highway and into the Walmart parking lot in Sartell. I keep the car running because of the heat, get out and enter through the sliding van door to the back. I move around Cookie who is laying dutifully on her bed and reach for the deep suction catheter in his supply bag. Got it. Still panic beeping. I carefully thread the long, thin plastic tubing down Dermot's mouth and turn the suction machine on. Sucking, sucking, a moment of breath holding and up comes a giant glob of mucus all over his bib. That's what he needed. O2 level? 89. Really? S...

Covid 19 racism is alive and well no school stay at home save money gaining weight my son has no friends my other son has to stay home for the rest of the year i am constantly trying to find my purpose I miss my mom I miss my friends I miss places I grieve for my former life I am not alone, but knowing that doesn't make it better Society is in upheaval people are dying my oldest son is never home I'm afraid most days I just started online shopping again I just stopped weighing myself everyday I need a fucking haircut its really hot outside today I'm trying to plan my tasks for the day and i never know where to begin my youngest is always on his screens he screams at me when I tell him to do his chores around the house he is really unhappy a little bit of laundry, then i jump to the dishes I should really walk the dogs I should really make Ryan walk the dogs maybe I should take them to the dog park is it too hot for the dog park? sorry the doo...

Lipstick might be the cure right now. My mother always says: "let me put some lipstick on so I don't look dead." I remember visiting my grandma in the hospital when she was actually dying and she always had lipstick on. So acting as if might be the solution right now. I've been angry since I drove home from Dermot's last doctor's appointment seven days ago. His nurse was convinced there was something wrong with him, I was not. At the time I thought I was just being selfish because the thought of going back to the same building where we had been last week and the week prior for and eleven day stay made my skin crawl. AND, I told myself that I would trust the nurses perspective more, so we were off to the doctor for a mysterious rash/swelling foot thingy. Appointment was at 10 am, which meant I'd miss both opportunities to workout at my new favorite gym. Please let me explain that moving my body a lot everyday  is essential to my mental health. We were...

The nurse is downstairs with Dermot. I'm upstairs at my computer. I'm gearing up for my second trip to Target today. The prescription was sent to the wrong pharmacy and I'm chasing it down. Only took four phone calls and about seven minutes on hold. My quiet panic that lives beneath my sense of well being is slowly creeping to a low hum. My heart is beating a little faster and my insomnia is getting in the way of a good night's sleep. Oh and also the fact that every other night I get up in the middle of the night with Dermot to remedy his lack of oxygen. Turn it up? Nebulizer treatment? Or the ever popular deep suction. Last night it took all of those. This is typical these days and as my husband and I trade off every other night the lack of sleep over a twelve year period is taking a toll on both of us. Is this his new baseline? My short term memory is shot. I stutter occasionally, lack of desire to participate in activities and a general feeling of isolation. Bein...

I haven't eaten a full meal since last Thursday. each day since it's gotten worse. Stomach cramps, like there's a guy inside with a torch, walking around my intestines lighting it up. The only thing that helps is to stop eating and lay still. Six days later, six pounds lost, I'm surviving on applesauce and Sprite. Today is a big day, I'm going to try to eat a banana, if that goes well I'll move on to some plain mashed potatoes. Ugh. Doctor was puzzled, not the stomach flu or gallstones, prescribed some Zantac yesterday. Its helping a bit. Then prescribed the diet of rice, applesauce, mashed potatoes and toast. Awesome. the words stomach ulcer are in play now. WebMD confirms almost all symptoms, call into the doctor too. I'm a week away from my 48th birthday and I probably have a stress induced stomach ulcer. it probably doesn't help that my diet is comprised of three cups of coffee a day, an afternoon diet coke, numerous handfuls of M&M's, da...

They help the body pass waste. They also help filter blood before sending it back to the heart.  So there's two tubes coming out of Dermot's back. Those tubes are connected directly into his kidneys to relieve excess fluid and preserve kidney function. Dermot has a peanut sized stone in his right kidney (unshelled) and an almond size one in his left. They are actually many stones that have fused together. Through many tests, CT scans and ultrasounds we discovered the stones after a mysterious illness that included vomiting, high fever and heart rate and aspiration pneumonia. Last week we brought him to Mayo Clinic and St. Mary's Hospital for the nephrostomy tube placement. Because of hospital permission issues and doctor schedules, Dermot has to wait an entire month for his removal surgery. March 7th is the date.  We hope to have all the stones out on that date, otherwise, the tubes stay and another procedure is scheduled. Dermot now has a G/J feeding tube, two adju...