My life with the Sullivan boys

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...

So all day I've been thinking of ways to write about my day. Or even if I should write about my day. I planned everything out last night. I packed the diapers, wipes, extra clothes, printed out his sheets for his communication folder, filled out the forms for the field trips and wrote the check. I was ready. Dermot was ready, we thought. As the storm approached we waited for the bus. 7:50 arrival time meant we'd need to feed Dermot faster than normal. I didn't think anything of it. As the bus arrived, Owen and Ryan came out to meet it. Owen had never seen Dermot get on his bus and was excited. We all rolled Dermot out to the bus and started to back him up onto the ramp and he spit up. Then he threw up on his shirt. We'd go change him and the bus driver would be back. I brought him inside and laid him down to change him and wondered. Why I was the one who always took him. Why did I feel compelled to wipe the puke away and wash it off his TLSO brace. Why did I th...

Sometimes I sit down at the computer to write, hoping to be profound, hoping to move my readers while at the same time expressing my feelings. I just deleted three paragraphs of crap. I started my day at church. We were late and our usual spot was taken. We sat somewhere new. I saw a different priest at the front of the room and worried that our priest, the guy I wish would give a homily to me everyday because they are THAT meaningful to me, was absent. Then our pew was too crowded and I practically had Ryan on my lap the whole time. He WAS there, I DID hear his homily. Something about saying goodbye, never seeing your loved ones again, but to look around for them in others...I didn't understand. You see most of my day was spent in self doubt, arguing with my nine year old son, to the point where he popped me in the face with his baseball mit. It's a long story, mostly about me being a control freak the whole day... On edge all day long, I was longing for a time to be qui...

"Happiness makes up in height for what it lacks in length." Robert Frost That was the quote on the spine of the Real Simple magazine when I glanced down at the stack next to the rows and rows of nail polish. I kept looking at it while I was receiving my hand massage by the Asian man assigned to paint my finger nails. Indeed the quote was true and very fitting for today. I've been sad the last few weeks, and I've let you know about it. But there's happiness involved here too. On Wednesday the doctor told us that whatever type of therapy we're doing seems to be working with Dermot and he won't need Botox injections in his legs. Hooray! Progress for sure. Then there was a great evening out with dear friends that same evening, lots of sharing and lots of laughs. And today, a friend ask if I'd like to join her to get our nails done. I would, I did. Sometimes the bad stuff outweighs the good in quantity, sometimes it transforms me into a sad but com...

"That's how our life is, so we should probably start living it that way!" I replied defiantly to my husband. I was the driving the familiar route to the Y to swim with the whole family. I had suggested that he take the two typical kids on a spring break trip and he balked at the idea that we wouldn't go as a whole family. How? I can't see driving twenty plus hours to Florida, let alone fly there. The last time we took Dermot on a plane we were very lucky to get first class and that his wheelchair wasn't trashed in the baggage compartment. On the way home we were in trouble. Dermot needs full support while sitting, we bring his large carseat and after that is installed in the narrow airplane seat, there's not even an inch of space left for his long, six year old legs. After we returned home from that trip I knew it would be a long time before we would travel again. So I listen to your stories of family vacations to Steamboat or Orlando and I envy you. I...

It's eleven o'clock. I don't want to go to sleep. Or even try. I put my head on the pillow and the thoughts come rushing in. Thirty five days ago someone else's little boy died. Thirty five days ago my husband and I wept on our knees in the hallway of our home and tried to explain why to our four year old boy. I immediately made lasagna and M & M cookies and a CD of my favorite songs to cry to. I drove it over to their house the next morning. We went to the visitation, then the funeral. I made more food and delivered it with a note. And then more food and more cookies. More notes. More cookies. Every night since the death, I can't seem to sleep. The first two weeks I spent late night hours in my dark living room drinking sleepy time tea, watching a rabbit at the bird feeder outside the window. Images of the funeral and details of the tragedy keep my mind racing. Complete sorrow for the family, complete. I know this is grief, I've felt this before. I...

I wanted to tell you that before I came to the Family Center I had two friends. Two friends in which to share the monotony of new motherhood. Two friends to plan play dates and tumbling classes and swimming lessons and movies for moms, anything to get through the days while our husbands went off to work. Let me tell you it got awfully lonely if one of my friends was out of town and the other had sick children. I was Home. Alone. With my child. For eight hours… Then I had my second boy, Dermot. In the beginning he had, what I like to call now, some “minor” health issues and my two friends tried to support me. Three months after he was born we moved to Edina, to a house that had more than two bedrooms. I decided to keep my oldest son in preschool in St. Louis Park in order to stay connected to my two friends. Then, at four months old, Dermot had his first seizure, and that changed everything. You see when a child has a seizure and goes to the ER and stays in the PICU for...

Grief in an eight year old: Two days after the funeral he had rubbed most of the ink off of the wristband he received at the funeral. Got almost frantic when I told him I couldn't fix the wristband, then calmed down when I agreed to give him the one I got. Gave me several unasked for hugs when he noticed me crying at the dinner table, at church on Sunday and while reading him a book. Asked to read his obituary in the paper, again. Asked why his heart stopped beating. Read the article about his friend in the neighborhood newspaper and was comforted by the fact that his favorite team was Notre Dame. Listened while his friends at swim practice talked about "the boy who died", didn't share with us what they'd said. Spent a few nights out of sorts, almost crying, almost yelling. Made sure that the green #7 sticker was placed correctly on his hockey helmet. Wanted to know if he'd been to any other funerals when he was younger. Seems to be hugging his bro...

Cathartic: producing a feeling of being purified emotionally, spiritually, or psychologically as a result of an intense emotional experience or therapeutic technique. That is why I write. I’ll admit when I first started writing it was to inform family and friends about Dermot’s health and hospital stays so I didn’t have to repeat painful information over and over, but at some point my blog morphed into a vehicle to process my thought and feelings. Yesterday I went to the funeral of a friend’s eight year old boy. He died suddenly and quite tragically. Yesterday I posted my heartfelt experience of his funeral and the happenings that occurred at the funeral. As with most people this was the most difficult event I’ve ever experienced. First because he’s eight years old and we knew him. We saw him often and our families have a connection. I know I don’t need to explain the relationship we have with the family, but because of some criticism I received over yesterday’s post I fe...