Sunday, August 29, 2010

Free to Be...

... You and Me.

I'm loving that commercial - I don't even know what it's for! Target? - that features the Free To Be You And Me song. We used to own that record when my brothers and I were little. I've wanted to get the anniversary edition of the Free To Be You And Me book for Sweetie. Just haven't gotten around to it yet.

At any rate, I think that message is a great way to preface this post. What I'm about to write here is solely MY view on things. I do not intend to offend or otherwise diminish the opinions, thoughts or feelings of anyone else. I only mean to use these things as a jumping off point for expressing how my opinions, thoughts and feelings fit into the mix. Everyone is, indeed, free to be - and feel - however it is they do. Just like I am free. I'm just going to apply my freedom by writing this here blog post...

With that said, I'll remind you again of my quest to reestablish my blog roll. In addition to recalling the blogs I've been linking to all along, I've also been searching the blogosphere for new blood. Specifically, blogs themed around disability in some way or another. A mom or dad writing about the ups and downs of raising a child with a disability. A disabled adult chronicling his or her everyday life. Something new to my readers and something, ideally, with a positive/motivating spin on what it means to have a disability.

Unfortunately, what I've actually run into more often than not, it seems, are blogs that either A) look like they'd be great but haven't been updated in at least several months, or B) have a very definite political/socio-cultural bent and are typically angry in nature. Angry about how disabled people are treated in our world. Angry about how said writer personally feels about his or her disability-laden lot in life. Angry about lack of respect, lack of ability, lack of opportunity. Just plain angry. And sad.

Well that makes me angry. And sad.

This is not to say that I disagree with these bloggers. Sure - when grouping all people with disabilities in a very large, very "in-general" grouping - "we" certainly are not as well respected or offered as much opportunity as others. And as I said at the beginning of this post, I definitely don't mean to detract from the very real opinions and feelings of others. But it's just not a stance that I personally want to promote.

And whereas I cannot speak for - would never dream of speaking for! - all disabled people of all different types, I can speak on the more specific topic of what it means - what it feels like - to be a person living with Spina Bifida. What it's like to be me.

Because in my blog searching I've also come across those few and far between sites written by individuals with Spina Bifida. And again I am saddened and shocked by the percentage of them that feature writers who are so angry with life. Who can't get past how they're being treated and oppressed and brought down by The Man. Writers whom, it seems to me, do everything they can to blame others for the poor way they feel about themselves.

I'm sorry, but I just don't get that. I mean, it's not like Spina Bifida is something that happens to a person after years of living a totally awesome and carefree/disability-free lifestyle. It's a birth defect. You're born with it. It hasn't changed the way you live your life - it just is part of your life. It's part of who you are and have always been. Deal.

Most things that I am not able to do that other "regular" people can, I've never been able to do. So these are not activities I miss. They've just never been in my repertoire of abilities. Big deal. There are many other things I can do. Some even way better than "regular" people. So there!

Yeah, okay. So there are some things that have changed for me over time which are directly linked to Spina Bifida. Up until my last major back surgery about 14 years ago I didn't have to walk using a walking stick. I just needed my braces and I was good to go. I could even run if I wanted! It was not an advised activity, since I could break my braces if I was too hard on them. Or I could get blisters on my feet. But still, I could physically do it if I wanted.

My need for a hysterectomy - due to a uterine prolapse - a few years back also has, I strongly believe, a link to Spina Bifida. See, my uterine musculature - like other muscle groups in my body - was simply not strong enough to hold everything in place after the stress of my pregnancy a few years prior. I personally know at least one other woman with Spina Bifida who has gone through the exact same thing as me, plus I've read articles that discuss the likelihood of uterine prolapse in women with Spina Bifida.

And speaking of my pregnancy - my chronic back pain and left leg numbness has only been an issue for me since having Sweetie. It sucks, yeah. But it is what it is. And as I've said in recent posts, I actually think my pain and numbness is lessening since taking on my more physical part time job. Yay, me!

You could maybe, maybe even say that my long job search that still hasn't even landed me the full time job I ideally need has been made more difficult because of my disability. Potential employers who did not want to hire me because of being discriminatory against people with disbilities. But I don't know about that. It's not what I choose to believe, anyway. I hope that any potential employer I seek out and who meets with me judges me based on my resume, personality and job specific skills and not the fact that I have Spina Biifida.

And, sure - there are definitely things about who I intrinsically am as a person that have no doubt been shaped by my disability. I'm quiet, for instance. Being the girl in school who was "so different" than my peers didn't help me to feel very comfortable opening up and being as talkative with them as I was at home with my family. And, for better or worse, it's a trait that's stayed with me until this day.

I also know what I can and cannot physically do. More to the point, I know what I can do, but in ways that are more slow, clumsy or just different from other "regular" people. And so I may ask for help with these things rather than make the effort to get the thing done on my own. My doing this, I feel, kind of spills over to other parts of my abilities. That is, I'm not comfortable figuring out how to do new things (to me) on my own. I'd much rather have someone walk me through it. Even if they too have never done the thing in question. Strength in numbers, and all that. Spreads out the blame when wrong things happen, too. But in reality, I have got to realize that I am perfectly capable of taking on any number of new challenges thrown my way all on my own.

But that's my point. These things about who I am as a person - they're my hang ups! I am just as able as anyone else to work through the lesser feelings I have about myself. Or not! Who cares - it's my problem! Because don't we all - disabled or not! - have things about ourselves that we just don't like?! Can't we all tick off a whole slew of problems we find in ourselves/! Aren't we all aging and aching and moving more slowly, more carefully, as we go? We don't need to blame society or government or The Man, as it were, for bringing us down in this world. Disabled or not, we've all got the ability to do that personal bringing down thing all on our own.

As the awesome Marlo Thomas said, we're all Free to Be You and Me. I'm happy with my "regular ol' life." I rarely if ever feel particularly disabled. I just don't think like that. But if others are happy to constantly be down on life and others and themselves, then that's fine for them. Rock on! But stay out of my way, because you and I will never walk the same path.

Live life. Be happy. That is all.

Saturday, August 28, 2010

New Beginnings

Hey! Notice anything different around here?

I am sooooo excited about my blog's new look! Hubby designed my header for me and I think he did a fabulous job. That's a painting of me when I was a little girl, done by my grandmother (mom's mom). Then add some photos of - who else? - Sweetie and me across the way (all of which just happen to color coordinate oh so well with the painting!) And I just love that picture of Sweetie in the twirly ride thing. Such a great photo, I just had to include it!

However, in making over my blog, I lost everything in terms of comments people have left on my posts as well as my many different categories of blog rolls. I've started to redo them, as you can see over to your right. But there's ton more to add. Especially in terms of posting links to sites about Parenting with a Disability, Spina Bifida, and other random but important links I used to have and now have to reacquire. Ugh.

In that vein, if you are reading this and either, A) used to be on my blog roll and now see that you're gone, or B) can direct me to some great blogs and/or sites of interest for my specific topic(s), then please, by all means do leave me a comment with your information and I'll get to adding you right away. Thanks so much! And remember, in terms of blogs, I'm mostly wanting to keep to the topic of parenting and/or raising special kids and/or being an amazing adult. Having a cooking or knitting blog listed in the middle of other on-topic blogs, I feel, would not fit in well at all. Thanks!

And, in other news, Sweetie started 2nd grade this past Wednesday! Can you believe it?! What, she was about 2 years old when i started this blog? Maybe 1 1/2??? Now she's 7 1/2 and so excited to be back in the classroom, catching up with her friends and waiting to see what great things will happen this school year.

Here's to a great school year! We're excited too, Sweetie, to see you learn and grow and create every day in lots of little ways. You make us so proud!

Saturday, August 21, 2010

I Wanna Hold Your Hand

Around the time that Hubby and I got married, my grandfather sent us a newspaper clipping from Dear Abby. "'Make love" every day wife's advice," shouts the headline. Hmm. Wow, how progressive of my grandfather to send us such advice!

Upon reading the letter, though, you find out that what the wife in question is really advising, after 50 years of marriage, is that it's the little acts of love that really hold a marriage together. A smile across a room. a hug, a "special look." Hand holding. If you do all that - and more - your marriage, and love, will make it through "better and worse."


Sweetie goes to bed every night, and I am done. I may be sitting there on the couch, but I am "done" for the day. Hubby tries to talk to me. Tries to make me smile, laugh, simply just engage in conversation with him. And I don't respond. Don't want to respond. Can't respond. Not in the mood. Just done. More nights than not, this is our experience. Hubby at the computer, around the corner from me, and I on the couch. Watching T.V. and playing on my Ipod. Or he gets the T.V. - usually watching nothing I'm interested in in the least - and I'm on the computer, or up to a bath, or doing dishes, or up to bed. Our interactions, as I said, are minimal at best. This, unfortunately, is our "typical," after Sweetie goes to bed.

But, as we close in on 11 years of marriage this fall, I have to tell you I love him just as much as ever, if not more so. And as the Dear Abby clipping hangs on our fridge to this day, we do abide by its teachings to "make love every day."

- Ever since I can remember with Hubby - before he was Hubby! - we have always kissed each other 3 quick times in a row. Our wedding day kiss was three quick kisses! (okay, maybe 2 quick kisses, with the 3rd being a bit longer, but still...) Every morning he still kisses me goodbye with those three kisses. "Why do you give Mommy 3 kisses and I only get one?" Sweetie recently asked him? "Because I've always given her 3 kisses. It's our thing," was his matter of fact response.

- If we do watch T.V. together after Sweetie's in bed, you can almost guarantee that it's a "murder show" (CSI, Castle, etc....) and we both enjoy our time together, figuring out the mystery of how the given murder was committed and by whom. We'll also usually be playing Scrabble together (well, together on our Ipods) at the same time. And I'll be fixing Hubby's feet with a foot rub after his long workday standing on concrete basement floors. Not my most favorite thing to do in the world, by any means, but something he loves and needs. After his working so hard, then coming home to cook us dinner (a great act of love on his part), he deserves a little love and attention from me.

- I'm almost always asleep by the time Hubby comes to bed. He stays up until midnight or so every night, and I'm out cold earlier in the 11 o'clock hour. But if I am awake, I'm just coherent enough to roll over in bed so that he can wrap his arms around me. He claims to not be able to sleep without holding me, and I can't completely settle for the night without his warm, comforting squeeze.

- Our new money management ritual is definitely an act of love. Every day we now hand over receipts, and generally let each other know if money was spent. Every Friday night we now sit together and look at our finances. For the now, for the upcoming week, and for the upcoming month. We figure out what we can send to certain "big debt" bills. We see together just exactly where we stand. I no longer solely take care of the checking book - a situation that often left me scared of our standings and afraid to admit to Hubby the truth of the matter. But, wow! It turns out this little act of what-doesn't-really-seem-like-love-but-definitely-is, is so amazing. It really is so much better to work together as a force than to be scared alone.

- And then, when we go out together, for any purpose - typical daily errands, the rare date night, whatever - you can bet that Hubby and I are always, always, holding hands.

Yes, I'd say that the number one reason for this little act of love is for him to help me get around easier. After all, I can be so much faster and more stable on my feet if holding someone's hand. And I almost require a hand hold when going up an incline of some sort. It just makes my mobility that much more safe and secure.

But even so - yes, you could say that he "has to" hold my hand to help me. So what?! After being together for more than a decade - and just like our 3 quick kisses - it's just become something we don't even think about. Just something we do. It's our thing. And it's a wonderful act of love. Not just him towards me, since he's "helping me out." But a mutual act of love toward each other.

Back in the days when he and I were newly dating, and I was still on crutches after major back surgery some months earlier, we were leaving the movie theater one night and he lamented not being able to hold my hand because of my holding onto my crutches. Later that summer when we went miniature golfing, we both realized how well I could get around without my crutches and just using the golf club as my walking stick.

I do believe it was from that day on - well, very shortly after that day, anyway - that I "graduated" to using a Hubby-made walking stick as my main walking support. No more crutches! And - finally - the ability to hold hands with each other.

And we're still holding hands. To this very day.

So as we approach our "Happy 11" anniversary (our first date was on the 11th of April, so month after month, we'd celebrate "Happy 11" mini anniversaries), I admit that, in several ways, our marriage has settled into a bit of a comfortable groove. A place where we don't necessarily talk meaningfully every day. A place where parenthood more often takes the lead over couplehood. A place where either - or both! - of us can just be "done" by the time we finally get Sweetie settled into bed. Work, and Sweetie, and life in general has tired us out for the day.

But it's all okay.

We still have my grandfather's newspaper clipping hanging on our fridge. We still heed it's advice. We still "make love every day" in so many little ways.

I wanna hold hold your hand for the rest of my life, Hubby. Thank you for holding mine.

Sunday, August 08, 2010

Big Questions

The other night I started reading Superfudge by Judy Blume to Sweetie as her bedtime book. But as soon as I started reading, I saw evidence of a Big Question that was going to be asked by little Fudge.

Where do babies come from?

I actually stopped reading and asked Sweetie if she was sure she wanted to pick this book for me to read. After all, it's really for kids a bit older - like 4th or 5th grade. Maybe she'd prefer to read it on her own when she was older.

"No, I want you to read it now. And maybe by the time I'm older, I'll have forgotten it and I can read it on my own then too."

Okay. Here we go...

But, unlike Fudge's question to his parents, Sweetie asked me nothing. Okay, then. Good.

...Until Daddy read the second chapter to her last night. HE got "the question." And HE gave her silly answers. Answers she knew were too silly to be correct. Apparently, she wouldn't give up, but Daddy just told her he'd keep on giving her silly answers, so just stop asking.

Hmph... if it were me, I would have given her my most appropriate response for her age and her specific question. Or at least, that's what I'd like to have thought I'd done.

So today I've been prepping myself. Researching what to say to a child of her age when she asks the Big Question. I think I'm prepared now. IF she asks again.... Heaven knows I'm not going to bring up the subject myself quite yet!

But beyond this classic Big Question that all parents must forge their way through in one way or another, I know that Sweetie will surely be asked some pretty Big Questions herself about another topic... Me.

Questions from her peers about why her mom walks funny. Why does she wears those things on her legs. Why does she use a stick to help her walk.

And maybe - we told Sweetie recently when we were having a family discussion about bullies - these questions would be asked in a mean way by kids who were trying to pick on her for having a mom like me.

(To which Sweetie looked incredulously at me, with a heartfelt, "But why?! Just because someone needs to wear braces on their legs doesn't mean they're not a nice person or a good mom! Maybe they will grow up and have to wear braces on their legs! They shouldn't pick on you! That's not nice!"... That's my girl!)

Now, it's not like Sweetie hasn't dealt with this already - or like I haven't written about this already. In fact, I clearly remember picking her up from preschool one day when the kids crowded around me and started - innocently, but curiously - asking me questions. To which Sweetie quickly piped up and started giving her matter of fact answer that these extra things I have help me walk because my legs aren't as strong as everyone else's.

But now, it's just that the older she gets, the much more likely it is - I feel - that she will start to feel the effects, negatively, of having a disabled mom. At least as far as peer relations go.

As far as Sweetie herself goes, I know her to be a strong, independent, creative kid who really couldn't give a hoot about fitting in with the "in" kids or doing something with her classmates just because "everyone else" is doing it. In fact, that's something both her kindergarten and 1st grade teachers have pointed out to us. Sweetie doesn't really have any close friends in her class.... she much prefers to choose an activity to get involved in purely based on the activity itself, not because of which other kids are involved in said activity.

"Oh, playing tag looks like fun! Jimmy, Jon and Jen are playing tag? Okay! I'll play that with them!"

So if Sweetie happens to be picked on for some issue solely concerning herself... her lack of a best friend, her always wanting to play Super (Sweetie), her love of the colors pink & green - whatever! - I'm pretty confident that she'll take it in stride and not let it get her down. At least not too much, that is.

But when it comes to being picked on because of someone else related to her - especially her mom! - well, I just don't know if that will roll off her back so easily.

Her very reaction to my suggestion that such a thing may happen proved to me A) how outlandish she knows it is to pick on anyone just because they're different, and B) that it really is hurtful to hear others making fun of someone you love.

Who knows... for now she may still be just fine. After all, she's still pretty young and she's been with this same group of kids since she started school (granted, that's only 2 years now.) From my personal experience growing up, I know I felt comfortable - albeit pretty dang shy nonetheless - from kindergarten to 4th grade because I started off with that group of kids and they got to know me well enough and look past my disability. It wasn't until moving to a new state and new group of classmates in 5th grade that I became ultra shy and feeling much, much more different than everyone else around me. Likewise with Sweetie - hopefully the kids she's with now, who are the only kids she's been with, do and will continue to accept her for the awesome, independent, great kid she is and not think twice about painting her in a different light just because her mom is "so different."

But we will be moving again. Probably next summer. Possibly later. But we will move. In fact, I'm not thrilled with what I've heard about her school in terms of the older elementary grades, and certainly not the middle/high school. Hubby and I want to get her out of this school before too long. So inevitably, she will be faced with all new faces. Friends, bullies and peers.

I'm not looking forward to the day Sweetie comes home crying for any reason that another kid would intend to make her upset. Whether it's within the first few weeks of 2nd grade, or the last weeks of senior year in high school. To have your child so hurt by someone else's words and/or actions - well, I know it's going to hurt me just as much as it hurts her.

We don't want to force the issue now. But we want her to be aware, too. And we definitely want her to know that, no matter what, both Daddy and I are here for her to talk to anytime about anything. If she's doing great at school and making friends and having fun, great! Tell us about it! If she talks back to a bully who's trying to hurt someone else's feelings - and it works to shut the bully up! - let us know! We're proud of her for sticking up for someone else (even if it doesn't work and possibly gets herself in some trouble.) And if a bully tries to pick on her for any reason at all - including the sole reason of having such a different mom - then we need to hear about that as well.

No matter what, together we can talk things out, and sort out feelings and answers to big, difficult questions and situations. Together, we can help each other through anything.

May you always keep strong, Sweetie. May our communication paths always remain open. And may the Big Questions of life dwindle in size and scariness when worked out together in love.