Not Yet

So all day I've been thinking of ways to write about my day. Or even if I should write about my day. I planned everything out last night. I packed the diapers, wipes, extra clothes, printed out his sheets for his communication folder, filled out the forms for the field trips and wrote the check.

I was ready. Dermot was ready, we thought.

As the storm approached we waited for the bus. 7:50 arrival time meant we'd need to feed Dermot faster than normal. I didn't think anything of it. As the bus arrived, Owen and Ryan came out to meet it. Owen had never seen Dermot get on his bus and was excited. We all rolled Dermot out to the bus and started to back him up onto the ramp and he spit up. Then he threw up on his shirt. We'd go change him and the bus driver would be back.

I brought him inside and laid him down to change him and wondered.
Why I was the one who always took him.
Why did I feel compelled to wipe the puke away and wash it off his TLSO brace.
Why did I think I was the only one who could care for him the right way?
His dad offered to change him. Grandmas' wanted to hold him, babysitters offered to play with him, friends asked to stay with him.

I get in the way. I monitor. I watch. I hover. I protect.

I wonder if it's because I don't want you to discover how helpless he is. Or maybe you'll find out how heavy and awkward his body is. You'll be afraid or creeped out, you'll pity him, or worse, you'll pity me.


My friend has a newborn daughter I get to see every week. I look forward to seeing her, holding her and talking to her and seeing her smile when I make a funny face. While I hold her I notice her mother seems lighter, a little more free. Perhaps its because she's been attached to her baby all day long and needs a break. Perhaps its because it makes her happy to see friends love her baby.


So I return to my need to protect Dermot, not let you know him too well. I need to let you in. Let you know how great he is. How when you hold him he purrs a bit and just might nuzzle in for a bit. I need to let you know how hard it is sometimes. He might give you a blank stare or burp up a bit. That's Dermot. Warts and all.

So Dermot stayed home today, probably will tomorrow too. Seems he's caught a bug or some sort. When he's better I promise I'll try to let you know him a little better.

But be patient with me, I'm still learning to let you get close.



Comments

Julie Zeh said…
I am the SAME way with my Tyler...and he's been going to school for 3 years now. For me at least, it doesn't get any easier. Thank you again for your blog.
November 4, 2013 at 1:26 AM
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