My life with the Sullivan boys

We heard the menu just days after his discharge from the hospital. At the pulmonologist's office, we sat with Dermot, giving the nurse any information she requested. He walked in with a calming authority that I remembered from 5 years prior while in the hospital for a nine day stint. I trusted this man. 30 years experience showed by his ability of direct eye contact, and honest opinions. This was not his first rodeo. He spent the next 45 minutes explaining the pulmonary system to us and what happens to a child when it isn't functioning properly. I heard the words limited , constricted , suffocate , aspiration and reflux . Not particularly in that order, but ten weeks later those are the words that stick out. He made a point to ask me again if I had made an appointment with palliative care. I had not. He encouraged me to do so. "I thought that was just for kids that were suffering from chronic pain?" I asked. "no, they also handle putting together a plan for ...

Yesterday I woke up and scooped a sweaty listless boy out of bed and put him in his chair. No brace today, I thought, just relax. He stayed that way for the rest of the day. Still, listless, pale. Now mind you we were coming off the eighteenth day of winter break and my other boys were going stir crazy in the sub zero weather. My husband, sick himself volunteered to stay with Dermot while I took my other boys out to the roller skating rink to meet up with some friends. We found one of the last parking spots at the rink and walked up to the old familiar steps of the fifty plus year old building. Looked exactly like it did when I went there as a child. We paid our admission and I got the boys some skates. I was nervous for my five year old. He'd only skated on ice and knew that he didn't pick it up quick, our time at the rink would be short. Owen was off in a flash, too cool to stay with mom and Ryan. He quickly found his friends and didn't look back until he wanted a s...

Waiting for the doctor to call back so I can beg for stronger antibiotics. Suction machine by my feet, on phone with clueless nurse. PTO members coming later today. Event eleven days away. Hockey practice this afternoon, not accessible. Therapy for Dermot and Ryan this morning. Back ache is increasing with every day of winter break that goes by. -12 degree air temperature outside. No warm weather vacation in sight. Gift Certificate to spa for Christmas, but no time to use it. Baby sitter's last day approaching fast. Haven't spoke to my brother is over three years. Yelled at my boys this morning for singing. And I miss my mom. Trying to stay positive, trying to stay sane. My friend shared a quote with me a few weeks ago that really pissed me off. I went on Oprah's website to see if I could find it again so I could share it with all of you. I couldn't find it. But apparently the answer to all of my problems is Gratitude. The quote was something like: ...

It's nearly eleven o'clock and I just finished working out. I dusted off the elliptical machine and went back and forth for 35 minutes. I feel a little better. Seventy-two minutes ago I was leaving my therapist a message, asking her to remind me of this moment. Sitting on the edge of Dermot's bed, holding him on his side while I pat his back so the mucus he just coughed up can escape before he aspirates it. While holding him I was monitoring his O2 level and heart rate with the handy pulse oxcimeter we're renting from the medical supply company. I also had to make sure the snot that was coming out of his nose wasn't clogging the nasal cannula that pumps a 1/2 liter of oxygen into his lungs while he sleeps. Then he seizes, body stiff, eyes wide open, his gaze is forced upward. I'm stunned. No other way to describe that moment. I just completed day five of staying home with a sick Dermot. Today I haven't left the house, yesterday I left for an hour to go t...

My kids are in school all day now so I've had time to relax a bit, reflect, organize. Pictures, school work, scrapbooks, old music. The Lion and the Cobra. I do know Mandinka. That song, that song I remember. Before everything else. Before sobriety, before adulthood, before marriage and motherhood. Before Dermot. I was sixteen, really drunk and dancing by myself, by choice at First Avenue. I was the shit. Wearing the borrowed white jeans that had made the circuit with the trendy girls in my click. Pinned at the ankle, cinched at the waist. Mandinka blasting in the enormous speakers. Nothing could touch me, nothing could hurt me. I was in the zone. Thirty minutes earlier I had thrown up most of the vodka I had slammed in the parking lot and decided I needed more from my boyfriend's stash because I wasn't drunk anymore. He agreed and I downed a bit more before entering the legendary club. Sunday's were sixteen and up and we were there every Sunday. Most nights like th...

At the reception the air was heavy and thick with grief, my boys were thankfully distracted by their Ipods and only looked up to sip from their lemonade or take a bite from their brownie. Finally the battery life drained to 0% and they looked around. "Where is he?" they inquired. "He's around, go look for him" I pleaded. They found their cousin and continued the paper airplane making from the night prior, but it didn't seem to hold their attention long enough. They returned to the ballroom to find their cousin's cousin from the other side of the family, standing with his dad and his girlfriend. It took only a moment and the three of them were wrestling on the floor of the country club ballroom, in their Sunday bests. This continued for another twenty minutes and as it did the other cousins started to gather on a nearby bench. I'd look over every few minutes while staring endlessly at the memoriam on the screen to find all three boys hiding be...

I awoke in a strange bed walked out to the room out from the guest room to find everyone preparing for breakfast. In the corner of the room stood a tired old desk holding an ancient desktop computer, sitting at the desk was a five year old boy. Eyes as bright and blue as the summer sky, and voice scratching and new. The scratchy voice spoke to me after prompting from his mother. Explaining the game he was working on, I could only nod and give a kind smile. Not being a mother myself yet, I studied this boy with amazement. Curious, calm and cute as a button, that scratchy voice and the boy that it accompanied and I began to become acquainted. He sat next to me at meals that weekend and I tried to figure out how to talk to this little human. The following summer I was even more a part of the family, but not officially. The scratchy voice was still with him, but he was growing. At least two inches taller and mildly more coordinated, my soon- to-be husband and I secretly giggled while...