My life with the Sullivan boys

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...