My life with the Sullivan boys

"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 ...

God dam nit! God Damn it! I shouted as loud as my lungs would let me. My cute adorable little beagle had done it again. God damn it! I couldn't stop shouting. My four year old looked at me as if I was a crazy person. "Mom, that hurts my ears." he informed me. " "I'm sorry honey, mommy's really angry. I'll try to stop yelling so loud." I told him as I was feverishly removing the slipcover on my white canvas couch. I moved this couch down from the boys room for a fresh start. No dog drool or urine. No stains, no gross history. Just fresh crisp white couch. Until this morning. I was arranging the cute new throw pillows on my pristine couch when I noticed the puddle. God damn it! My sense of order has been rocked. My idea of how things are isn't true. My dog peed on my couch. Again. Dermot starts kindergarten tomorrow. He's going to be fine. He will love it. His teachers will love him. I know all of this , I do. But the thought of d...

Our nanny of three + years left in May to go to nursing school. I've missed her ever since. When I'm at the pool with the boys, I think I see her out of the corner of my eye, but its not her. She's in Arizona for at least fifteen months. When she returns she will hopefully get a job in the pediatric ward of a children's hospital. She's perfect for the job. I found two other people right away to take over for her and watch the boys. I thought it would take some time to adjust. Two months later, I'm still adjusting. I interviewed the new people, they both have experience with special needs so I was comforted by that. I've trained them in on how to feed and change Dermot. Showed them how to administer his medications, fit his new TLSO brace around his body properly. Instructed them on how to use the various equipment, the wheelchair, the stander, the bath chair. Both caught on quickly. But there's something missing, I remember mentioning in the intervie...

As I slid furiously through the dark tunnel screaming with glee, I could feel my four year old's hands gripping my legs tightly, we reached the open section of the water slide and I was still screaming. We reached the end of the slide with a sudden splash into the pool and an enormous sense of joy filled me. "I wanna go again!" I hollered, my two typical boys were glad to oblige me. I felt as though they were enjoying my very rare sense of free spiritedness. You see most days I forget how fun it is to be a mother. Tonight, my husband and my oldest son are off at the race car speedway. I'm here with the other boys, again. I wanted to go to the track. I'd gone last year and enjoyed myself throughly. The people watching, monster trucks so loud you can feel them in your chest, three specific kinds of stock cars racing in a quarter mile track and let's not forget the endless display of mullets. But I'm not there. I'm home. I just got my two little ones ...

I am not different, I am ordinary. My son Dermot is an ordinary boy. There are a lot of children like Dermot. Our family's situation is not special or remarkable. I know that now.  At ten thirty this morning I didn't feel that way at all. I was full of apprehension because of our second unpredictable social situation this weekend.  First was the neighborhood block party. I get all tensed up, make sure my boys look presentable and bring an extra special dessert. The party was great. We met several new neighbors, chatted with familiar ones and watched our boys enjoy the deejay and dance their little behinds off. Worried for nothing! One down, one to go I told myself as we were walking home Saturday evening.  The other would be on Sunday morning. A graduation open house for a friend of the family. We would know only the family and ALL the others would be watching us and staring at Dermot, I told myself.  We set out a bit late. I made sure the boys were dressed appropriat...

Father Tasto, Last Sunday my family and I decided to come back to church. We were members of St. Thomas for at least 3 years and attended regularly until the birth of my third son. Life got in the way and went hadn’t been back on a regular basis for a good three years. Occasionally my husband and my oldest son, who’s eight would attend mass. After having a pleasurable experience at our in-laws church in Fond du Lac Wisconsin, we decided it was time to get the family back to church on a regular basis.  We loaded everyone into the van and drove to the 11 a.m. mass. We arrived and unloaded from the van. When we got to the entrance, we headed straight to the elevator, as our 6 year old is profoundly disabled and requires a wheelchair for mobility. My husband waited in front of the elevator while I escorted my four and eight year old to the main level. My boys were actually very excited to go to church, we waited for my husband and other son by the elevator. After a few minu...

"Why is Dermot here?", he asked, and for a nano second,       I was offended. But then I remembered, he's eight. "Why wouldn't he be here, he's Owen's brother." I answered. "But he can't play basketball" he continued. "I know, but do you know what Dermot's favorite thing to do is?" He shook his head. "He loves being around lots of kids and listening to them play." That satisfied him for a while and off he went to play basketball with all the other eight year olds attending Owen's birthday party. Not being a great basketball player, he returned while I was preparing the tables for the influx of Pizza Hut that was on it's way. What does Dermot do?, does Dermot go to school?, does Dermot have a bed?, does Dermot have other friends that are in wheelchairs?, how much did his wheelchair cost? After answering many questions about Dermot I stopped what I was doing, rolled Dermot closer to the curious...

Neuromuscular scoliosis occurs with some types of neurological disorders, including spina bifida, cerebral palsy or muscular dystrophy. In these instances, the children’s trunks are not strong enough to support themselves fully, and the spine curves into a long C-shape. Got it. Dermot has this. A 50 degree curvature in his spine. "Severe" in the words of the first orthopedic surgeon we've ever met. He was a kind man, by just looking at him you would probably guess he was about twenty-two years old. Of Asian descent, no visible wrinkles and wearing a stylish outfit (as far as doctor's go). He carried himself in a hurried fashion as if he was late for his chemistry final. Having already been briefed by his resident, he sits down at the end of the examination table, grabs Dermot's feet and begins to maneuver Dermot's limbs in a peculiar fashion. Then he asks to have Dermot sit up, slightly offended I immediately point out the obvious fact that Dermot does not...

I thought as I awoke this morning that the day would go as planned. We'd bring the whole family to hockey to watch Owen, return home for lunch and pass the day away by watching the NASCAR race. If you know us, you'll know that this is a Sunday custom in our family. Things were going off as planned. But then I went out to find a rug. The rug we have in the mud room entrance has been stepped on far too many times to count. It was the entry way rug at our first house. I purchased it without even glancing at the price, from the Pottery Barn catalog. I was pleased with its appearance when it arrived via UPS a week later. It welcomed you into our home. Many of you stepped foot on it. Then we moved to Edina. As I write this I am trying to recall where this rug was in our soon to be dream home. Ah, yes. I remember now. I placed it temporarily at the top of our stairs. It didn't go well there but I knew that we were planning to remodel soon and I would get a new rug. Then our pl...

As she rolled into the waiting room I recognized the wheels right away. The curve in the metal tubing was almost identical. Although larger and purple, it was most certainly the same wheelchair as Dermot's. I felt a strange kinship with the owner of this chair and I hadn't even looked up yet. She had to be about 12 years old, her body was stiff, limbs twisted, her face quite gaunt. Her medium length blond hair was pulled back and looked as though it hadn't had a proper washing in weeks. I was set aback. Feeling quite awkward, I tried to make eye contact with the girl's mom. Eager to give her a knowing smile to let her know that I know what she's going through. I did not succeed with my eye contact so I resumed my focus on Dermot while we continued our never ending wait in the doctor's lobby. I couldn't help sneaking glances of this severely disabled girl. A respirator hose protruded from her throat, I could see the machine that was breathing for her care...