Tuesday, September 18, 2012

The bus

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 time? No. These are the times when I am again reminded that my life with Dermot as his mother is hard.

Wipe the drool away. Hook up his feeding pump at Owen's soccer game, every soccer game. Wipe the spit up off his lap. Adjust his full body brace so it's not hitting his chin, while carrying on a conversation with another mom. Scrub the spit up off the straps to his stander. Lift his slippery wet 44 pound body from the shower chair in the bathroom to the changing table in his room without dropping him or throwing out my back. Advocate for his standing needs at his new school. Remember to order formula to get us thru the weekend. Schedule a sleep study to make sure he's breathing okay at night. Call the neurologist's office to discuss a different seizure medication because the three that he's on right now aren't working well enough. Wiggle his tooth here and there so that I can be the one that pulls it and not the dentist. Create a new teacher communication folder to last the whole school year. Stop calling is new para from school Erin! Allow his new PCA a chance to bring him to therapy to learn the program. Let the teachers know he has a doctor's appointment in the morning to check his spine and hips and hopefully delay any necessary surgeries for another few years. Consider being a room parent for his typical Kindergarten class. Schedule speech therapy, or at least call to get on the waiting list. Give him a well deserved massage.

My life is hard. I won't tell you that when I see you because I don't think it's hard most of the time. I'm blessed in many ways. I help others so I don't focus on myself. I keep moving all day long so I don't stop and think. But when Deb called, she reminded me, it is.

There must have been a little angel helping me out that day last week because Deb called back, she had a solution, and Dermot still rides the bus. Thanks.

Tuesday, September 4, 2012


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 dropping him off to a new school with hundreds of students that don't know how amazing he is scares me. Leaving him with teachers who've met him once, para professionals that don't know what his sounds mean and what he like to play with freaks me out. Everything is going to be fine. I've been telling myself this all summer long. I've been relatively calm about. I've been telling all my friends that I'm not really worried.

But it's tomorrow and I already can't sleep. My worry manifests itself by wiping the counters clean, watering all the plants AND the trees outside, folding and refolding my sheets just so, shopping on the internet. I'm pretty sure I have enough beads to make 20 necklaces now!

But this dog, she did it again. God damn it! Just when I thought I had it covered. The old stained couch tucked away it the upstairs office so no one could see all the stains from the past year, the smells of beagles, cat and old formula spit up. She peed on my newly created pristine environment and to my surprise, underneath the clean white cover there's new stains that I will have to deal with.

So when you come to visit, please know that my couch is not brand new, but it's washed, clean as I can make it. Stains will come and go and no matter how hard I try to make things just so, someone will pee on it and I will have to clean it up.

Does any of this make any sense?