My life with the Sullivan boys

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...

This red coat wasn't yours to begin with, it was Owen's. This red coat has been in the snow, has been in the rain, has been filthy from rolling in the dirty snow on a warm winter day. This red coat has traveled many places, to school, to Target, to the water park, to the skating rink, to birthday parties and arcades. Today, this red coat is driving me crazy. I never dreamed it would bother me so much. This red coat fit your brother perfectly, kept him warm for two winters. Today, I want to burn this red coat. I rationalized the price of this coat because I knew you and your younger brother would wear it too. I can't burn it can I?  This red coat is another reminder that being your mom is hard. Your younger brother Ryan puts his coat on by himself. Every morning, without fail, I struggle with this red coat. The drool from the previous day reminds me that it needs to be washed. The rip on the sleeve reminds me that you won't ever get it caught on the hook while p...

Volkswagon Golf Audi S6 BMW M3 Event planner Commercial Real Estate broker Searay Amberjack Supra 700 sq. ft. condo Newly remodeled home in St. Louis Park Zipper Cabo San Lucas Playa del Carmen Grand Cayman Berlin Stockholm Maui $30,000 wedding Mercedes ML320 BMW M3 BMW M5 second row seats for all Timberwolves games Ordway season tickets Minnesota Wild season tickets Minikahda Club Buckle Honeymoon-two weeks in Italy I-plan Event Company 5th Street Ventures First Response = + Maui, again It's a boy! ECFE Playdates Tumbling class Babysitter Lake Namekagon Miscarriage YMCA Soccer coach Stroller Jogging stroller First Response = + Naples, FL Pneumonia Nebulizer Hospital three days It's a boy! Double stroller Projectile vomit Colic Nutramigen Projectile vomit Weight loss Surgery-pyloric stenosis Colic Weight gain 4504 Casco Ave. Seizure Ambulance ER CAT Scan MRI EEG All tests "normal" Low muscle tone Missed m...

This is the night when I stay up too late to tell you why I haven't written. I wanted you to change. I wanted you to be better. Different. I wanted you to care about me. I wanted you to think of others. I wanted you to know my pain. I wanted you on my side. I needed you on my side. I wanted you to hold me up and tell me everything was going to be okay. I wanted you to protect me from harm. I wanted you to be stronger. I wanted you to be satisfied. I wanted you to have integrity. I wanted you to stay. I wanted you to be loved by others. I wanted you to stop talking about yourself for one minute. I wanted you to admire me. I wanted you to be my friend. I wanted you to love my kids. I wanted you to keep your promise. I wanted more from you than you could ever give. I created you in my mind, when we were young and she left. It was supposed to be me and you fighting off the whole world together. Me and you walking home fron junior high in the snow and falling in the ditch. You ...

I was going to create this amazingly beautiful photo collage that chronicled Dermot's five years so far. I uploaded the photos, found a great video. Then I stopped. The video didn't upload correctly. I was searching through my photo library of the last five years. I forgot how beautiful Dermot was as a baby. I forgot how innocent my life was when he was born. I forgot who I was five years ago. I was a perfectionist, a people pleaser, a somewhat happy, but curiously lonely person.I had a handful of  friends and a lot of expectations for my life and the lives of my boys. I am no longer that person. I tend to get a bit retrospective every year around Dermot's birthday. Dermot turns five tomorrow. Five year olds are supposed to be going to kindergarten, five year olds are supposed to be taking the training wheels off their bikes. Five year olds can use a booster seat in the car, unbuckle their own seat belt and climb out of the car themselves. Five year olds brave the big ...