My life with the Sullivan boys

I was sitting in my weekly twelve step meeting. I was to speak about the holidays. I read page 420 out loud to the group: "Perhaps the best thing of all for me is to remember that my serenity is inversely proportional to my expectations...." I sighed deeply after my reading was over... I want to be in this place. I want to have this level of acceptance. But I'm tired y'all. It's been ten years of constant life adjustments and grief. The list is long. There's no end in sight. Nor would I want there to be. I experience a sense of loss each and every day and right now the scale is tipped too far one way. I've been collecting people in my mind. People I know now. People I used to know. People I want to know. People who understand. People who left. People who show up. People I left. I remember them all. I need to stop collecting and start accepting. In this ten year journey with my son Dermot I have worked tirelessly at making myself a better ...

I just walked a mile home from our church that just doesn't do it for me anymore. Three priests in a year. The first one was why we went. he was transferred up to north Minneapolis because in the Catholic Church they move the guys around every ten years or so (no tasteless jokes please). We all drove to church. Dermot was really congested, but we were confident that he'd cough it up by the time we got there. No cough. I went in and Joe stayed in the car with Dermot and the suction machine. Waiting for the cough. The boys and I sat thru the first reading, no Joe and Dermot. Second reading, still no Joe and Dermot. I texted (yes, in church!). They were headed home. We'd walk home. Only a mile away, no big deal. I sat thru the homily. I struggled to stay engaged in the wordy "story" that used to be my favorite part of church. Ryan on one side, whining and fidgeting. Owen on the other sitting dutifully. In my head I wondered how it would affect the kids if we ...

July 18th is the date of Dermot's surgery. His spine turns in the shape of an S. 80 degrees. His right side of his internal organs are getting smushed. Lungs, smushed. Ribs, so close they almost touch. Shoulder protrudes outward. Head and neck automatically turns to the left. The hump on his back grows more prominent each day. The brace that he wears doesn't seem to fit him anymore. This didn't happen overnight. it's been a long time coming. every six months the x-rays prove that as Dermot grows, the curve gets worse. The brace doesn't fit him anymore. We struggle with the decision of surgery. Dermot is a fragile human being. Respiratory distress is our first concern. Pain is our second. Length and ease of recovery is uncertain. Dermot's spine isn't getting straighter. Were are in the midst of multiple doctor's visits. Dotting the i's and crossing the t's. Doing everything we can to ensure that the surgery ...

She's going to hate that I wrote about her. She's not going to want to talk about it. The first time I saw her was six years ago at a Kindergarten class party. Hands on her hips, speaking uncomfortably loud to her son "Sumner Mark!". Who's that? I wondered. Her son was friendly and talkative, he knew more about Star Wars than anyone I knew. I would find out later she knew just as much and wasn't afraid to share it. She invited Owen over for his very first sleep over, I was worried, he was only five. She said not to worry and rattled off a detailed itinerary for the evening to sooth my insecurity. She has continued to go out of her way to sooth my insecurities. She was enthusiastic about Dermot. Few other friends took to him like she did. Her comfort around him made me at ease with her immediately. She was a safe person. There's a certain, I don't give a hoot about what people think attitude about her. Yes, she drives the appropriate Edina car, ...

I hung up the phone and cried. Cried for the umpteenth time. I got what I wanted from the phone call, but I'm not happy. She was telling me how it was. She was telling me what to do next. She was asking, yet again if I was using the respiratory vest, when he was well. I'm not an idiot. I know you were shaming me. I know you have guidelines and protocols to follow. As do I. He has mucus, that means antibiotics. Plus extra nebulizer treatments and Predisilone and suctioning and respiratory vest and frequent position changes. I know what to do. Believe me, I know what to do. So my one comfort was taken away this morning. Dermot's pulminologist office has always been my reliable source for antibiotics when he is in respiratory distress. I call, they prescribe, we hopefully get better. But not today, today the young nurse tried to tell me, how it was going to be. She tried to tell me to go two more days before we intervened. She wasn't going to win this fight. Not today....