My life with the Sullivan boys

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 ...

I finally find the place. I had been here before with Dermot, but I'd always relied upon my GPS. I foolishly thought I could find it by memory. It's a twenty five minute drive from the local office, but the guy we preferred to see was at the northern office today. I park, place my disability tag on the rear view mirror, get out of the car and start rifling through the "backpack" attached to Dermot's wheelchair. No bibs, no burp cloths. I've found these to be a necessity during doctor visits to collect the drool that accompanies Dermot these days. Damn, I say under my breath while I simultaneously blame my undeserving husband for the innocent omission. I roll the wheelchair out of the van as far as it will go and let it plop to the pavement so I don't have to lift it. I find a dirty sweatshirt to take the place of the burp cloths and strap Dermot into his chair. I notice teenagers in the car across from us playing their stereo so loud I can feel it, I l...

Three and a half years ago, I was alone. Alone with my anxiety and fear, alone with unanswered questions, alone with what to do next. Countless hours of surfing the Internet for others, others like me, mothers like me. I knew if I stayed alone with all of this, I wouldn't survive. I found one "special needs parenting" chat group that proved to be quite worthless. I called local organizations that advocate for kids with disabilities, there was a support group for Down Syndrome parents, quite a few groups for parents with kids on the Autism spectrum, another for ADHD. I called the local chapter for epilepsy, nothing, except a group for adults that had epilepsy. Alone I was. I asked Dermot's therapists if they knew of any place for someone like me, puzzled looks were my answer most of the time. I asked Dermot's teacher, she promised to connect me, if she found a match. I kept going. Talking to anyone I knew with "special kids". I met with my friend...