In Which Connor Wins A Medal

Connor was awarded a medal today!

He, along with eleven other children, received the Claire Daily-Stafinbil Young Heroes Award in a ceremony on our local military post today.  This annual award is given out to "children from military families who are physically or mentally challenged and demonstrate extraordinary courage and valor in the face of adversity." 

The kids receiving the medal ranged in age from toddler to late adolescence, and had a wide variety of different physical and developmental special needs.  Each child was called up to the stage, where a brief biography was read about them.  Then they were presented with their medal, a certificate, and a giant bag of gifts.  Connor was the first to be called and was gifted, among other things, with a large stuffed animal husky, which he took to almost immediately and practiced petting during some of the other presentations. 

The presentation was two hours long, and once Connor had gone up we sat in the back, anticipating that Connor would not sit quietly through the rest of the presentations.  While he did remarkably well, Jeremy did have to get up and leave with him after about forty minutes, which I think is a pretty good span of time for a four-year old to sit through a power-point presentation!  At the very end I ran back out and got them, and Connor and I, along with the rest of the kids, went back up on stage one last time.  Then everybody trooped upstairs for cake and punch, where we mingled and Connor graciously accepted a lot of compliments on his yellow and blue striped tie.  He was by far the most formally dressed kid there, in a blue button-down collared shirt, pin-striped slacks, the aforementioned tie, and his brand new bright red Converse sneakers, bought especially for the occasion.  Most of the other kids were in T-shirts.  Oh well; he looked adorable, so it was all good. 

Jer and I declared it to be Connor's "Special Day" and finished the outing with a blueberry smoothie (which Connor enjoyed smearing all over his nice clothing) before heading home.  The little guy crashed and slept a good portion of the afternoon away; I think he was pretty overstimulated from all of the excitement.  We didn't take any pictures of him during the big event because we were on stage with him, but we should be receiving some later and we'll be sure to post them.

So all in all it was a good day for the big boy.  We're pretty proud of him!

~Jess

In Which Connor Is Not Special And I'm Fine With It

I was filling out a questionnaire today; Connor has been selected for an award given out by the military hospital every year, and so we were to write a bit about him and send in some pictures to be used in the ceremony. Everything was going along swimmingly until I got to this question:

"Knowing that you are Mom and Dad, we would like to know from your perspective what makes your child special to you and your family."

And it was there that things screeched to a halt. I couldn't figure out how to answer this question, and I was surprised by my strong negative reaction to it. It's certainly a totally innocent query-- we were probably just supposed to list some of Connor's positive traits and move on. But it was that word "special" that was sticking in my craw.

While I say that Connor has special needs, as that seems to be the most PC term, and I love him deeply and fiercely, do I think of him as special? I might get a little flack for this one, but oh well.

No. No I don't.

He's not a saint or an angel or some sort of pillar of society. He's an ordinary little boy who happens to have a lot of challenges to deal with on a daily basis. While I know he's not ever going to be "ordinary" in the conventional sense-- he'll always be set apart by his physical and cognitive disabilities-- I really, really wish that wasn't the case. I wish that he could be viewed by the world outside our little family as simply a person, no better or worse than any other, and not as a case study or someone to be pitied or babied or scorned or idolized, depending on who's looking at him.

This is probably such a sticking point for me because we run into a whole lot of folks who tell Jeremy and me that we are special people for having Connor. And we're not. We're totally ordinary, normal parents who are muddling through raising a child and figuring it out as we go along, just like everyone else. I don't like being thought of as some sort of extraordinary person because it implies that only extraordinary people can raise children with disabilities. And that's not true; I firmly believe that anyone who would be a good parent to any child can be a good parent to a child with disabilities. To my mind, being special means being set apart. It implies an us and a them. And we don't want that, not for ourselves or for Connor.

It took me a long time to compose an answer-- I didn't want to turn Connor's award into my own oversensitive personal rant, and so it took me a while to figure out what I wanted to say. Tell me what you think about it. Here's what I ended up with:

"What a difficult question to answer! Certainly Connor is special from a medical perspective; he’s the only known case in the world with his specific genetic condition. But here’s the deal—despite the fact that his medical conditions permeate almost every aspect of our lives, we think of them as relatively unimportant. Connor has a variety of conditions that are part of him, just as he has blond hair and green eyes. They don’t define who he is.

"We could tell you about his bubbly, sweet personality, his great passion for music, and his easy acceptance of the hand that life has dealt him. We could mention his unmitigated joy in making new discoveries, his silly sense of humor, and the stubborn streak a mile wide he inherited from both sides of the family. We could talk to you about his bravery in the face of numerous emergency room visits, hospital stays, and painful medical procedures, his gentle touch with animals, and the astonishing beauty of his smile.

"But ultimately I think what makes him special to us is what makes any child special to a parent. He is our son, an ordinary person placed in extraordinary circumstances, who, like all of us, is doing his best to make the most out of what he’s been blessed with. He is made special by how very ordinary he is despite all of the challenges he is facing. We couldn’t possibly ask for more."



~Jess

When Life Hands You Lemons....

Ellen over at To The Max has gifted me with the Lemonade Award! Thanks Ellen! I'll pass this on to some of the bloggers I follow with infallible spirits and doggedly upbeat attitudes:

Sarah at The Life of Evan

Kara at Lessons Learned from a Bee

Princess Abigail (and her Mama) at The Bernard Bunch

Ashley's Mom at Pipecleaner Dreams

Mia at General Hysteria

Now there's a bunch of ladies that know what to do with lemons!

~Jess