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.

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