Invisible?


So, here's something I've noticed and it's a big fear of mine. I fear that Dermot's becoming invisible. Not really, but to the outside world, to the "nice" people we meet or already know. To friends and even some family members, it seems as though he's not there. The polite look and then quick look away, the attention that gets showered to Owen and Ryan is not the same for Dermot.

Why is that, I wonder. I don't really wonder. I've been there myself. I was the one who shyed away from anyone different. Not on purpose, just out of fear. Not knowing how to treat a child or what to say, do I touch him? Can they hear me? Can they see me? I'll just pretend they're invisible.

We've gone to several outings, the country club, Target, the Children's Museum and so on. I've started to notice.

So, I want to tell you about Dermot.

Dermot is a beautiful boy. He smiles, he laughs, he screams with delight. He has more grunts and moans than most babies have, and I can understand most of them. He shakes his head no when he's all done with something, he calls out for attention when he wants to play, and he whines when he's sleepy or sick. Dermot thrives off of human interaction. He loves being talked to. We're not sure what he can see because of his vision impairment, but the moment you come down to his level and say hello, he knows you're there. He doesn't have sensory issues, so grab his hand when you say hello. He loves when our house is at it's most chaotic. He loves listening to the dogs wrestling and barking, he giggles when Ryan is crying close by and loves when big brother Owen screeches and howls for him.

He's not mobile, he can't sit up on his own or crawl. He hangs out in "big Blue" a Tumble Form chair or on the floor or in his stander (3 x's a day). Or the "stroller" when we're out and about. He can't walk up to you and get your attention, he needs you to come to him, he needs you to say hello. I need you to say hello. He's my son and I love him with all that I am, he's your grandson, your cousin, your nephew, he's not invisible.

Comments

Anonymous said…
Sue, that was so well written and helped me to read it. What a beatiful picture of Dermot.
November 12, 2008 at 3:51 PM
Anonymous said…
Sue--I want to snuggle up your sweetie pie Dermot! You share so honestly, with great insight and heartfelt joy and pain. To this day, with my brother Mike, I am amazed at the stares we get when we are out and about. He does not have eyeballs so often it throws people off. But for those who are willing to reach out and say hi they are rewarded with the most enthusiastic grin and Mike's "oh hi there"! Dermot's spirit shines through in your words and for all who get to meet and know him. Kim
November 13, 2008 at 11:19 PM
Erin Hamel said…
What a GORGEOUS picture of Dermot! :) He looks so old! I miss him dearly!
November 22, 2008 at 1:07 PM
Anonymous said…
I remember the first time my daughter (1 year old) was called 'special' by a stranger while we were out shopping (in response to a little girl who was calling my daughter funny-looking). It broke my heart. Not because it was the wrong response, but because it was the first time it sunk in that people will always see her as different. It caught me off-guard and reminded me that her life will not be what I originally envisioned. Reading your blog made me feel less alone regarding the conflicting thoughts and emotions that I have about her condition. Thank you for your honesty and for sharing your beautiful boys.
March 18, 2009 at 11:49 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