Tag - You're It!

After being on Facebook for a couple of years now, I have certainly been well indoctrinated in all the many different types of quizzes found there. Anything from Who Were You In A Past Life? to What's Your Most Dominant Personality Trait? to What Your Favorite Color Says About You.

Yes, I've taken them all. And you know what? Right or wrong, I'm more or less pleased with the outcome.

Yes, I'm an introvert.

Yes, I can be creative.

Yes, I'm a homebody.

Yes, I can be very outgoing, given the right setting.

Yes, I love music and having a good time.

Yes, I can be boring.

Pretty much whatever these silly little quizzes come up with for answers, I can justify that it is the right answer for me.

Whatever. They're just silly little quizzes after all. Created most likely by bored junior high or high school students. Innocent good fun, that's all.

But the thing is, I honestly do think of myself firstly in terms of how people see my personality. I think that people - my friends, my family, strangers on the street, co-workers, random acquaintances - all classify me first by how they interpret my personality.

"Oh, she's the quiet one."

"Oh, she's hard to get to know. Doesn't talk much."

"Amy's fun and smart and a good listener. We have a great time together!"

"Yeah, she's quiet at first, but once you get to know her she really opens up and knows how to have fun."

"Amy's a determined, strong person who doesn't let anything stand in her way. She's awesome!"

"Yeah, I know her. She's okay. Kinda boring, I think. Watches a lot of T.V. Just not my type of person."

You get my drift... Whatever you may think of me, you think of my personality first, right? Of course you do!

But how would you describe me to someone else?

"You know who I'm talking about, right? Amy's that really pretty woman who's kind of quiet but super sweet."

Hmmm... Would be nice. But probably not. Even if I was your best friend, or your relative. Even if I was very special to you and your life. To get another person to quickly recall who I am, let's be honest. You're not going to talk about my personality or even how physically gorgeous I am (ha!).

You're going to say something like. "You remember Amy, right? She's the one with the walking cane and limp."

Yah, yah. You might throw in there that I'm petite. Or add that I'm the "really sweet woman who..." You may even use Sweetie as a definer. Even try that as the sole definer of who I am! But if that doesn't work, you're also going to very quickly get to my most unique characteristic. My disability.

We all do it. When talking about anyone! Our bestest BFF, our spouse, our coworker, or even our worst enemy. We don't intend for it to be harming. We don't mean to be mean. But when something so "out there" is so unique about a person, we use it. And, like I said, depending on how close someone is to you, you may very well try to use more personality-specific means of defining them. But if those don't work, it probably won't be long before you get to the nitty gritty.

"Oh, you remember my friend, Bob? He's the super fun, always smiling one. You know - the really, really big guy?"

"Sally! You know her! She's my really super smart friend. Married to Danny.... she has the really bad teeth."

"You don't remember Amy? She's my really tiny friend. Sweetie's mom. She's quiet and really nice... and she wears leg braces and uses a walking stick to get around."

Now before I go on, I want to say that I am NOT talking about any specific person here and how they may or may not refer to me. In fact, I've simply been thinking about this in general lately. How would someone try to get someone else to remember who I was? Hmmm... they'd probably go right to my disability! Just like anyone would do to talk about anyone else. You use their most unique quality/characteristic/trait.

(And heck, I may be completely and utterly wrong here. What do I know?! It just seems to me that, for ease of recognition, one would tend to go straight to the disability card when describing me to others.)

It's not necessarily wrong. And it certainly may not be meant to hurt. It's just plain and simple human nature. Tagging and classifying people is what we people do best.

I'm just sayin'... it sure would be nice to be noticed and remembered for my stunning good looks, :) , or my brilliance or complete sweetness. For people to notice and remember me for my determination and strength, not my disability and weakened legs.

It's true for all of us, I think. The frustration of people not seeing us how we see ourselves. Yes, in some cases others can see us in a much better light than we see ourselves. We can be raised up and encouraged by our friends and family is this great way.

But other times... you just want to be seen for you being you. For how you define yourself from the inside. Not what you wear, or how you move, or how you're strangely different on the outside.

Exercise - Good For The Whole Family!

Sorry I missed last week. It was a busy weekend and I didn't feel like I had much to say anyway.

It's actually been a pretty busy week too. Sweetie spent her days at Circus Camp! A last minute opportunity we got word of to have her do something fun and unique for a few days. She loved it!!! What a great camp! She learned a lot of great "circus secrets," some new skills (OMG, so many different things she can do with a bandanda! And stand up straight on an exercise ball? No problem!) And there was even a last day of camp show for the parents, so we got to see all the fun things that went on during their days. Sweetie did very well in this little demonstration show. Yup - she and Circus Camp were a really great fit!

I'm still enjoying my new afternoon PT job. And I really feel my legs and back are much better/becoming much stronger for it. One day this past week I worked almost a full day there, and spent about 4 hours of that time almost completely on my feet. With no back brace! (Not for lack of wanting... I can't seem to find it in my house...) BUT - all that time on my feet and NO leg numbness. NO unspeakable back pain. Strong legs and back getting stronger every day! Yeah, these next few days afterward have been a bit sore for me... But not too bad. And I feel my walking is getting stronger too, as I have had moments of walking where my legs do not have to be positioned as widely apart as usual to keep me steady. Also, last night Hubby commented on my posture as we talked - him sitting and me standing. He noticed that my back was really pretty straight - not my usual "thing" where my back is concave and my stomach sticks out a bit. All this and I haven't been to the chiropractor for weeks!!! I don't need no stinking chiropractor! Just give me a warehouse job packing boxes and I am HEALED! Amen!

Let's see, what else... well... I haven't mentioned how well Hubby is doing with his dieting and exercise. Heck - I never even mentioned a word about it in the first place! Well - Hubby has been dieting since January 1st and has gotten back into running within the last 2 months or so. Two things that I've watched him struggle with managing for YEARS! Like, pretty much ever since I've known him. And always, a non-success. Always a gung ho start, with a rather rapid downward trend toward not trying anymore. Always. BUT - now, with the help of the almighty IPod Touch (the ones he and I got from Santa for Christmas), he is, quite literally, a new man!

Give the guy an app. that helps him count calories? Done! 25+ pounds shed and kept off. No problem. Get an app that helps him go from the couch to running a 5K? Alrighty then! He just completed his 8th week of that program. Up every other day at 5:30 a.m. so he can get his run in before work! This, from a Daddy who wants to sleep on the weekends as late as humanly possible. I am very, VERY impressed with this Hubby o' mine. He's lookin' good, feeling better, sleeping better. Seriously - he's a new man.

And it all makes me wonder... what else can this Almighty IPod help him - and I - and us - do?...

... and so I got an app that helps you manage your budget.

We've been using the app for about 2 weeks now. It's going well. If nothing else, it's turning out to be a great tool to see what exactly comes in, and what exactly goes out, and how much of it all is left over in the end. Not to mention the fact that it's just making me a much better minder of the checkbook. Every evening now I have Hubby hand over any receipts he's procured during the day, I've turned our month-at-a-glance wall calendar into a budget calendar (each Monday I write there how much money we have, and bills due are recorded throughout the month on the calendar as well - helping us both see at a glance how much we have each week vs. how much is going out in bill payments... letting us know how much, if anything, is left over for "fun" money - never much.) And I record said receipts in both the checkbook and the new Budget app... then share my app recordings with Hubby. All in all, a very eye-opening exercise, to say the least.

And that, in a nutshell, is what's been going on with the Sweetie & Me family over the last couple weeks.

So, with that... I do have other topics to write on, but not right now. Soon. But not now.

I've got a house to tidy up, a book to finish, and friends coming over this evening for wine and dessert. Lots to do, lots to do...

Until next time... Happy living!

It's Nothing, Really...

There are certain things parents just don't talk about with their children. Heck, there are certain things people don't talk about with other people! Not bad things. Just personal things. It's the social norm to just leave some topics to one's self.

Likewise with spina bifida. There are certain aspects of this birth defect that those who have it simply don't talk about. Not bad things. Just personal things. Similar things, in fact, to "regular" things that "normal" people don't tend to talk about with others. Immediate family members know the specifics. Close but not-so-immediate family members most likely even know. And possibly even very close friends. But, really, these are things that the person with spina bifida lives with but does not discuss.

So, obviously, I'm not about to divulge here what exactly I'm talking about. Most likely my readers with spina bifida will understand what I'm leaving out. But no one else needs to know.

At the same time... these are things that make up who I am, as every day and natural (to me) as they are. Things that are fundamentally different for me from "normal" people about how I get through each day. And because what I'm (not) talking about is such a fundamental life issue, I feel that Sweetie needs to know about how my life is different from others' in this respect. If for no other reason than just so she knows... you know?

I know for sure that, for instance, all my aunts and uncles know of what I speak. And, therefore, I assume that all my cousins know as well. But I didn't tell them. Their parents must have. Or my parents? But when? And how? Under what circumstances? Or maybe some of them don't even know. Or many some of them researched/figured it out for themselves. I really can't be sure, since - again - this is not something that I tend to discuss with most people.

Googling anything like "how to talk to your child about..." this subject results in entry after entry of teaching the child with spina bifida how to manage this subject for themselves. And again I am angered and befuddled by how prevalent the topic of kids with spina bifida is on the internet as opposed to adults - let alone parents! - with spina bifida. It's seriously as if "they" think that kids with spina bifida never grow up to be adults with spina bifida. Hmmmpph. Well, if that's the case, no one ever gave me the memo!

Anyway... I am wondering more and more these days about how to broach this subject with Sweetie. It's nothing, I feel, that needs to be a serious come-here-and-sit-down-I-have-something-I-want-to-talk-to-you-about discussion. But to bring it up just randomly at the dinner table or something, and make light of it as best as possible, doesn't seem completely likely to happen and certainly not natural.

... Although that, in the end, will probably be how it happens, more or less. And since hubby, of course, knows of what I speak, and since he's the Silly Daddy, I presume his assistance with this not-really-a-discussion-discussion will be helpful in getting Sweetie to not make too much of a big deal out of it. Not worrying her, not having her spend more time than necessary thinking about this, and not having her look at me any differently is my hope. And I'm sure Hubby's involvement will only help this goal come to fruition.

Time will tell, I guess, how it all goes down.

Here's hoping it all doesn't go down the toilet, like so many things do...

It's (My) Most (Disliked) Time of the Year!!!

Happy Independence Day weekend, all my USA friends! It's beautiful here in New England - an absolutely lovely day for a barbeque (which we'll be going to at our friends' house this evening) and will be just as nice - if not a little hotter - tomorrow, for a family barbeque at my in-laws.

After our mid-day family get-together tomorrow, we're hoping to find a spot where we can park our car to watch some fireworks. Sweetie's never seen fireworks "live" before - only on TV. She's very excited to get a chance to this weekend. And we're happy to make it happen for her.... well, kinda.

If Sweetie wants fireworks, we'll find fireworks. But if it were totally up to me - uh uh. We'd be staying home, holed up in our house, far away from any firework displays. (Of course, we're in a new neighborhood this year - a more tightly compacted neighborhood with lots of kids and teenagers around. We heard some fireworks next door last night. Who knows how wild and crazy it gets around here on the actual 4th. Not sure I'm interested in finding out.)

See, I - like many people with spina bifida, it seems - have a sensitivity to loud noises. I always have. Thunderstorms? Hate 'em. The Fourth of July? A terrible holiday for me. I just do not like loud noises. Especially the sudden ones, like thunder and firecrackers. They scare me, and hurt my ears. According to what research that has been done on the subject, it seems those of us with shunts are more likely to not like loud noises. Not sure why, but very interesting to see that it's rather common among us.

And so, we will try to find a place to park our car tomorrow night - far enough away from the actual show to not bother me so much, but close enough/a good enough view for Sweetie to see a pretty display.

And, heck - if we have to, we'll have to... actually go to where a fireworks display is going to be. Just so Sweetie can get the best view possible and get the full effect.

Oh, what a mother won't do for her little girl... Just get the ear plugs ready, please.