My life with the Sullivan boys

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...

"I have been driven many times to my knees by the overwhelming conviction that I had nowhere else to go." Abraham Lincoln Driving to Target last Friday afternoon, I switched on MPR radio as per usual and heard mid sentence a mention of 26 dead, 20 of whom are children......elementary school shooting....lone gunman....teachers dead.... I took a gasping breath, almost cried and switched immediately to a Maroon 5 song talking about how his body keeps on telling him yes. "Not today, not now." I said out loud, to myself. It was too much. I have two boys in elementary school and one in a very public preschool. This happened to them, far away. This won't happen here. To me. The illusion of safety is a dangerous one. I used to think that tragedy happens to other people, people I don't know. Not me. Or I thought that I'd paid my dues in life already and not another bad thing could possibly go wrong. Until I had Dermot. Until I felt the grief, over and ove...

I remember the cat jumping up on the table next to me. I felt a combination of delight and desperation when I started petting the curious tabby. With Dermot on my lap, having just carried him in from the van where I was greeted by a man resembling Uncle Jesse from Dukes of Hazzard who was busy under the hood of a piece of shit Dodge minivan from 1984. "Are you Mr. Wood?" I asked, trying not to sound terrified that he was going to abduct Dermot and I and we would never be found again. "Nah." the uncle Jesse look alike replied. "He's in the house. Go on up". Gulp. I was not expecting this at all. This man had a website, all the information on his profession checked out, plus I even had two friends refer me to him. But as I turned off on to the dirt road and traveled for a mile or two while passing farms and vacated houses, my fear crept in. I unbuckled Dermot from his car seat and lifted him on my left hip. Being only two years old he was still l...

It isn't good news. I wanted to suck it up and not feel it yet. But that didn't work so well last time. Last time I didn't cry for three months. Last time I told everyone I was fine. Because if you don't feel it, its not real. Yesterday, after consciously deciding NOT to feel the news seeping out of the receiver of my phone from the sleep doctor with twenty five years of experience. I changed my mind. I called my husband. I told my parents. I shared with many of my friends. I shared my sadness and disbelief that I, as a mother have to endure with this situation. A situation so sad, frightening and slow that it requires that I feel each stage of progression. There's the "special chair", the special needs stroller, the stander, the  turny seat for my van, the wheelchair, the bath lift, the ramp in the garage, the AFO's, the feeding tube, the suction machine, the shell, the knee immobilizers and now the oxygen tank. We discovered that Dermot has sever...

There's a message on the machine when I return home. "Hi Sue this is Deb from transportation, because of a scheduling issue with another student, effective immediately Dermot's new drop off time will be twelve noon." I paced in circles in my kitchen, I'm angry. I've planned my entire school year around this school drop off time, and they changed it. Just like that. I sit on my kitchen floor and cry. I cannot be two places at once. I guess Dermot doesn't get to ride the bus. I call Deb back and leave a voicemail. "Hello Deb, this is Sue Sullivan Dermot Sullivan's mother. I will pick up Dermot from school effective immediately." With each word it becomes more obvious that I'm crying through the message so I hang up. It seems to be a trivial occurance or a minor irritation from the outside. I tried to tell myself that. But why was I moved to tears so quickly and so intensely? Am I finally losing it? Have I lost my composure for the last ...