Saturday, June 30, 2012

Get in the game.

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 to bed and I'm sitting watching a NASCAR race on television. My mind's brewing with the unfairness of it all.

So often, under the guise of keeping my typical kids lives "normal" my husband takes them on trips to the beach, to the waterpark, to the race track, out of the boat for a day of tubing with their buddies, and the list goes on. I stay home with Dermot. Dermot cannot do most of the activities listed so it's decided that I stay with him. Sometimes I relish a few exclusive hours of alone time with Dermot, and sometimes I countdown how long until my husband gets back with my other boys so I can hear about the fun they've had.

But tonight, as I brewed all evening about how it's not fair that I'm the one who always has to stay home and my husband gets to go have fun, I thought about last night on the water slide. I thought about the joy I felt doing regular mom activities with my typical kids. I need more of that, I need to allow myself more joy. It's funny the sense of martyrdom I tend to have, I have signed myself up to be completely responsible for Dermot's companionship.

But what if I went to the race track? What if I went out on the boat? What if I was the one who took my other boys on these fabulous adventures? Maybe I'd be a more satisfied mother. Maybe I'd stop thinking I was the only one who should care for Dermot. Maybe my husband's perspective would change too. Dermot's almost six, I've been sitting on the sidelines far too long, I need to get in the game.

Sunday, June 17, 2012


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 appropriately and armed myself with my biggest "I'm ok" smile. After a forty five minute drive out to a country suburb, complete with farmland and horse ranches we arrived. Overwhelmed by the amount of cars parked up and down the dirt road I started to freak out a bit. The only thing worse that a few people staring at Dermot, was a ton of people staring at him. With no obvious place to park, Joe dropped the ramp and I rolled Dermot out and brought the other boys with me to join the party. I immediately saw our host and his daughter, the graduate. To my surprise she remembered me, seeing us almost ten years prior. We chatted with her and her father until Joe arrived. 

As we sat eating our delicious meal, we chatted with a grown woman with Down syndrome, an older gentleman who was blind and a few other women. Dermot was almost immediately greeted by a teenage girl with Down syndrome and wanted to know all about him. As I sat and observed my surroundings, my anxiety vanished.

Then they walked up the driveway. Two young girls, probably late teens, early twenties. I took a double take. I'd never before seen girls such as these two. They walked together, sisters. Same hair style, same facial features. They shared something remarkable and quite stunning. They shared their legs, they shared their arms. Two heads, two torsos, but only two legs and two arms. Huh. 

Friends greeted them, they fixed plates of food for themselves and they sat and ate. 

I glanced at them periodically being very careful not to stare. I knew then that my family's situation was ordinary compared to these girls. I imagined what they have experienced in their lifetimes and what they go thru on a daily basis put any right I had of feeling different and special to rest. 

I was glad to feel ordinary and glad to be in the presence of two extraordinary girls. I wish them well.