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.

Comments

Post a Comment

Popular posts from this blog

Letter to Dermot

Image
"Letter to Dermot" Dermot, I’ve been trying to put off this letter for quite some time. I just gave birth to your little brother and have realized how heartbroken I am over you. I look at pictures of you and get a tinge of sadness where I should get joy. I see the things you cannot do and the things you won’t be able to do. I’m so sad about it. I feel responsible, so much more than anyone else knows. I look back on the day you had your first seizure and I’m so angry with myself that I didn’t know what was happening. I feel like the length of time was my fault and that it caused more damage to your brain than was necessary. I’m so sorry. I know that you deserve the best in everything for your life and my regrets run deep. God has a plan for our family, I know. All of the challenges that you go through help make us stronger, but I wish more than anything that I could take all the pain away, all of the drugs, all of the therapy. I sometimes imagine you as a normal little guy get...
Read more

Fourth time

Just as I crossed the last thing off my grocery list, I heard a muffled chime from my purse. I thought to myself, I wonder if its Dermot's school. Not really believing it was, but teacher Jan was on the other end of the line. "Hi Sue, Laurie has administered the Diastat for Dermot", she said with a tinge of sadness in her voice. "Okay, I'll be right there" I said. I looked down at my full cart of much needed groceries and pushed them to the register. One part of me wanted to continue and check out as if nothing was happening, the other, wiser part said "get the hell out of here". Another abadoned cart at the grocery store. This time I call Joe, "I'll meet you there" he says. Three stoplights later and a quick jaunt on the highway and I'm there. Wiped the tears away and ask the receptionist for admittance to the special education wing of the school. I walk briskly to Dermot's classroom. The other little boys are having circle...
Read more

Profoundly

I've written many essays in my head. There's the one about being embarrassed by Dermot throwing up in the hospital cafeteria, or the one about friends and how they've changed over the years, or the story about the man I met at the hospital with the nineteen year old son with Dermot-like disabilities or my favorite, the way I use chocolate chip cookies as therapy. I sit in waiting rooms and write in my head, by the time I get home the details are lost or the energy has left me. I sit awake in bed staring at the ceiling knowing what I want to write, then I get out of bed, start up the computer and my words have left my head. I've been struck by how profoundly sad I am. I am really sad. The challenges keep coming, changing. I've learned many coping mechanisms, I've found a higher power to run the show, I seek out help from support groups and therapists, I volunteer to help others. All of these things make me feel better, but to my bitter disappointment, they do...
Read more