My life with the Sullivan boys

I parked the jeep and began to walk to the park building when I immediately saw the blue minivan sprawled across all three disability parking spots near the front of the building. I immediately walked to the van, as I have done many other times before, it was occupied by a mother perhaps a few years younger than myself and most likely her mother in the passenger seat. I knocked on the driver’s side window, the driver startled and rolled down the window. “This is a handicapped spot; do you have a permit to park her?” I asked. “What?” the woman asked.  “This parking is reserved for people with disabilities, do you have a permit?” I repeated, more forcefully this time. “We’re just waiting for my kids.” She stated. “You need to move, you don’t have a permit and you aren’t allowed to park here” I demanded. “Why are you making such a big deal about this?” “Because you don’t have a right to park here” I explained, again. Silence “Why do you care? “...

Anxiety attacks present themselves in different ways. Mine appear to come out of nowhere. Seemingly I'm doing "fine" and then something happens and I'm running to the public restroom trying to hold myself together, while at my sons hockey game. A few saturday nights ago, I was the first of the parents to arrive for the third game in four game tournament. The lights go out, the players are being introduced, and I'm alone on the bleachers. The opposing team's parents give me a puzzled glance and I shrug my shoulders. The rest of the parents arrive early into the first period. I would say half were holding the drinks they brought along on the shuttle bus. No one was out of hand, but as  recovering alcoholic, I was quick to notice that a good majority had a subtle shift in their inhibitions. They quickly surrounded me apologetically on the bleachers. The volume was higher, the outrage for blown calls was greater, my heart started to beat louder. To my left...

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....