Friday, February 15, 2013

The Truth Hurts...

... But it will also set you free.

So, I've been going to all these doctor appointments lately, and the professionals all want to know... when did the back pain start?

Oh, sure, they want to know about the beginnings of my other thises and thats going on. For those, I can only give a very rough estimate. I don't know... awhile. Too long.

But for my back pain... I can recall almost to the day, I feel, that I started to hurt. And, in turn, it pains me to associate the two - but I'll tell you the truth: I did not start having back pain until Sweetie was about 6 months old.

It made complete sense to me, actually. Sure, I wasn't able to carry her around. But I was definitely lifting her up and twisting in my chair with her an awful lot. And some very short distant carrying as well. Standing and rocking/swaying/bouncing with her too. All movements - repetitive movements - that were new to me. Movements, furthermore, with an ever-increasing weight. Of course my back hurt! I was "exercising" my body in ways that I'd never done before! So, okay then, back pain. I can deal.

At first, I figured that once I got more used to these repetitive new movements, my body would get stronger and the pain would start to lessen or - better yet - go away completely. Alas, no. Over time I came to realize it wasn't going anywhere. As long as I had a Sweetie to lift and twist with, my back would continue to hurt.

Fine. What, is that like 2 or 3 years, at the absolute most? By the time she's that old, she can most definitely crawl up on my lap herself. By that time, if she ever wants "up!" I'll definitely not be able to handle her weight and she'll be going to Daddy with those requests. 2 or 3 years - I can take it. After that, my back can slowly begin its return to feeling better.

Ha! Cut to my mom saying, just the other day, "So, now that your daughter's 10 years old, you decided maybe your back wasn't going to get better on its own and you should go see someone about it!"

Well, you know... I wanted to be sure.

Small potatoes... at least I'm seeing someone now! At least I'm looking for answers and relief, no matter how long it took me to get here. I'm finally taking care of me.

And it's interesting. Learning from the physiatrist and physical therapist, that of course my back hurts! For one, my body doesn't have access to all the right muscles in all the right places, so I have to compensate. That compensation, over time, wears down my joints and vertebrae. Things aren't as cushioned as they once were. Plus, yeah, taking care of an infant Sweetie did start the process for me, as I was moving in ways I hadn't before - wearing down these joints and vertebrae and cushioned areas with all the physicalness associated with being a new mom.

Huh - yes, of course. Yet I had never given much thought to how my body moves, what it can and can't do. I just move how I do - how I have to to get around and do what needs to be done everyday.

How crappy that, no matter what I do or have done, I'd have ended up, eventually, in the same situation, pretty much. Time frame not withstanding. Since, had I not had Sweetie, I would not be in the same poor physical state I am today. Yes - eventually, to be sure. But the fact remains that the mere act of becoming a parent pushed up my body deterioration inevitability by many several years.

(What's more, had I not had Sweetie, I wouldn't have had to have a hysterectomy 6 years ago, as it was my pregnancy that caused my uterus to prolapse - which is, as it turns out, a pretty common occurrence for women with spina bifida who've gone through a pregnancy, as we tend to have weaker pelvic floor muscles than the average woman. Huh - who knew?)

Talk about a blog post of mine I'd really rather Sweetie not read ever.

But, there it is. The truth. And the truth hurts - quite literally, in my case.

But like I said at the beginning as well - the truth will also set you free.

I feel free to report what I've gone through - am going through - with my bodily aches and pains. Why I have them, where they originated, and how bad they can be at times.

But I am also here to happily report that I am finally being truthful with myself about how bad the pain can really be at times, no matter how the heck it started! I have set myself free from worrying about and taking care of others so much while ignoring my own demands... finally seeing that it is a demand my body is delivering to me... finally seeing that what I'm personally experiencing should not be ignored. I am worth it - so very worth it - and need to take care of myself in order that I may be around, functioning at my best capacity, to be with and take care of others for many, many years to come.

Doing something that will, at the very least, ease my symptoms and possibly slow any further deterioration, if not fully take the pain away.

So, yes, it was my pregnancy and early parenting days that served as the catalyst for the current state of my physical condition. But - I was going there anyway. And if it wasn't a pregnancy that did it? Maybe it would have been all that globe trekking and hiking hither and yon that Hubby and I would have surely done as the international, childless vacationers we would have become that did me in at an early age. Or even a more stationary life I could have adopted, had I had no other cares in the world - move it or lose it, as they say.

And, lastly, let me more specifically clear something up. It was the pregnancy - not Sweetie herself - that wasn't so great for me. It was my ways that I moved my body. My decision to not make an earlier attempt to finally look into treating my pain. Sweetie herself has no blame in any of that what. so. ever.

And, yes, I've certainly realized the connection between her arrival and the start of my pain before, obviously. But, no, I have never, not for one millisecond of a millisecond, ever thought to myself how better off I'd be without her.

Because that is the biggest, most ugly lie to be told in all the world.

For all my aches and pains, stresses both physical and mental, I am such a better person for having Sweetie in my life. For having the honor of being this amazing little girl's mom.

And that, my friends, is the absolute, pain-free, TRUTH!

Sunday, February 10, 2013

Getting Old (with a disability) Sucks


So, I have this little blog. It's called Sweetie & Me and it's all about, well, Sweetie & me. I started it, jeez, almost 8 years ago, mostly as a place to discuss my being a disabled mom raising my healthy and active daughter. You see, there are very few - I mean really very few - resources out there for women with spina bifida wanting to have a normal pregnancy and child raising experience. At least that was the case back then. Unfortunately, that still seems to be pretty much true. I just wanted to be that one voice in the crowd that people could quietly hear and listen to, question and feel connected to, if they wished. So I started the blog and began to write.

And I did hear from people! I still do, in fact. And, through my blog, I've gained many opportunities I wouldn't have otherwise. Freelance writing opportunities, for instance, for various niche online and in-print publications, where I got to further tell my tales of being a special needs mom to my just plain special little girl.

But somewhere along the way - and not altogether that long after starting the blog, even - I just started writing about, you know, "stuff." Mom stuff, kid stuff, funny, poignant, infuriating, normal stuff. Which, of course, is all "normal" when it comes to being a parent. So, in essence, my blog pretty much became a parenting blog, - or, really, a Sweetie blog - more so than a disabled mom/healthy kid blog. Because, in my world - in my family's world - it's all normal. It's our normal. Things weren't happening or not because of my disability. Life was happening, all the time, no matter what my body could or could not easily do. It's just - life.

And so, these nearly 8 years later, I'm still checking in - though, granted, not as regularly as I'd like - to write about life. My life, Sweetie's life, our life - and how it goes on. I'm still loving the writing and happy to have a place to share. But, no, I can't really claim that it continues to fit my original purpose for creating the blog in the first place.

Hubby pointed this out a few months ago, wondering if it was still even worth it to have the blog at all anymore. Seeing as I don't really talk about spina bifida that often, or raising a healthy kid while I myself have some physical limitations. It doesn't fit its original purpose. It's "just a blog." What's the point?

No worries there. The blog continues on and will for the foreseeable future. Silly Hubby! Stop the blog? No way, no how.

Now, cut to Jan. 1st, 2013. A date I decided was going to be the start of "my year." I have been taking care of Sweetie and Hubby all these years, while quietly dealing with, downplaying and/or outright denying any physical issues I'd been experiencing over the years. Yeah, I hurt. Sure, I'm tired a lot. No, that's not the end of my "issues" list, if you want to know the truth. But it's nothing. No complaints here. Keep calm and carry on.

So - 2013. My year! This meaning lots of doctors appointments on my schedule. I've seen my GP, my neurologist, a dermatologist, the eye doctor and a physiatrist. I've had tests done, and have more on the schedule. I am getting all checked out! Time to admit I'm not feeling my absolute greatest and figure out what's going on and how to make it all better. Time to admit life isn't as "normal" as it once was for me. Things are harder to do. Things do hurt. Things just don't feel right.

Time to look at this blog and see how little I've written about how I'm actually feeling and moving - topics that would fit oh so well into the original purpose of the blog - compared to how much I continue to write about Sweetie and all her "normal" shenanigans. Sweetie's funny and smart and great and interesting! Who cares about the comparatively minor inconveniences of my sore and tired slowing down body? No one! Not relevant!

Well, yes. Relevant. Completely. Duh.

So. Some lab results came in. My GP and I presumed that these results would show either some thyroid and/or estrogen issues for me. And when I saw the initial results myself, I thought for sure they indeed did confirm a slow functioning thyroid. This, I thought, was great news! See?! Something IS wrong with me! But. BUT! It can now be FIXED! Yee haw! So exciting.

(Funny how much more yucky you start to feel when test results -presumably- come in to back up your claims.)

But. BUT!... Well, no. The results do not show that, actually, my doctor pointed out. You're fine. Go on and live your life as you've been. Thank you, and goodbye.

Hey, now. Not so fast, mister! I wrote back to him, saying, well, that's all great and stuff. But still. These issues! These symptoms! What do I do now?!

In the end, my doctor consulted with an endocrinologist on my lab results, confirming what my doc said about them in the first place. But he does suggest I try some CoQ10 to, for starters, see if my fatigue symptoms can be helped.

Well, now. That's something! At least we're being proactive here. CoQ10 will be bought and tried. Yeah!

And then there's the physiatrist appointment I just had. A physiatrist! I had never in my whole entire life heard of such a doctor, but now wonder why I have not had a physiatrist my whole entire life. A doctor who treats disability and pain resulting from injury or disease, especially related to spinal cord issues?! Dude! Where has this been all my life?!

The doctor himself I thought was, um, strange. Spastic, nervous, mild mannered. Odd. But also completely intelligent and intuitive - the guy knows his stuff, even if he's not very good at expressing it.

So what has he determined are my issues, causing my constant low back pain and a left thigh that goes numb after standing or walking on it for 5 minutes or so? Well, that would be bursitis in my hips, and arthritis in my back - more specifically, spinal stenosis.

Awesome.

And I've hardly ever mentioned any of these issues on this blog. In passing, maybe, sure. But nothing that anyone would remember, I bet.

Not so good for a blog that's supposed to discuss my challenges as a disabled mom!

So now, I'll be having an MRI, just to confirm these diagnoses and deny anything else. I'll start some aqua therapy, get a prescription back brace, and some prescription pain relief options, just to have on hand if I want to try that route. Which, you know, I'd rather not, as taking drugs is not really my style. I'm not opposed to drugs. You can certainly tell me about that option and I may just want to give it a try. But I'll probably go a non or less drug route in the end, if I can help it.

And this doctor got that from me, right away. He could tell I'm a minimalist when it comes to taking things. He noted to me that I wasn't "on" very many things, and I said I thought I was on a lot! Thinking about it, though, most of the things I take are supplements of some sort, and not actual drugs.

He could also tell, right away, that I'm not a complainer. How true, how true. I found myself telling him about the rest of my family, including how my daughter doesn't complain at all. I also had to admitted to hating this - it's not always a good thing to have a kid who doesn't complain, you know.

"She gets it from you," he said.

"Bu..." But she has something to really complain about!, I just about nearly said out loud.

Sweetie has Lyme, I wanted to say. She totally could complain. But she doesn't. But that's, probably, you know, because by all rights, she actually feels pretty good on most days. Huh. I guess she's okay.

Just think of that! I was all ready to say how much my daughter has every right in the world to complain a lot - a child who, yes, has Lyme, but really seems to have it pretty much under control for the most part. As opposed to me, who I feel comparatively has no right to complain... yet I have real aches and pains and fatigue and other assorted issues every single day.

I didn't tell him any of this. But, obviously, I've been thinking on this craziness ever since.

The reality of my falling a lot also came up with the physiatrist, as well. I, as always, tried to brush it off, laughing that I fall so much, I'm a professional. I fall so much, I know how to do it as safely as possible. "Yeah, but falling's not good!" he pointed out. Along with falls in general just not being good for me, he pointed out that I'm getting older too, so age, factored in to what I've already got going on, really makes the effects of falls challenging for me. I admitted, well, yes, I have found that it's harder for me to recover from falls these days. I can feel the soreness, for instance, the next day after a good fall, when before I could just get up, brush myself off, and forget all about it.

Could it be that simple acts like merely walking around are major accomplishments - or challenges - for me? Am I way worse off then I've ever believed myself to be? Sure, getting real answers to my aches and pains is, in one way, helpful, because now I can work on fixing them. But at the same time, I kind of now feel like I should have been doing things differently my whole life so that I wouldn't have wound up like this by now. I'm having a real conflict with the idea I've grown up with of, "well, nobody ever said I couldn't, so I'm at least going to try - I can do anything I set my mind to," and what I feel I need to consider now, being "you've really got some things going on with yourself, so maybe you need to think and take care more to live a more protected life."

It's confusing. Yes, I still have the same pains as always. The same pains I've just dealt with ever since Sweetie was about 6 months old. Pain that I've never considered to be all that major, but annoying is all. But now, my pain has a name. Two names - not only arthritis, but bursitis as well. Problems that I know cause much pain and limitations in the bodies of others. Obviously, these things I've been "just dealing with" are big! So now, what? Am I supposed to feel just awful? Am I supposed to now be purposefully limited in what I can and can't do? But that's not what I'm used to! Not many people have ever told me before to chill out and slow down. Doctors, family, friends - everyone! - have always treated me as one of the gang, able to do whatever I feel I can do. And I've always felt I can do it all!

To feel like myself and go on as always without complaint, being the regular "can do" mom I've always been? Or to feel a kind of justification and vindication that, see!, I do have some major things going on with me, I can and should take care of myself, and if I think I hurt a little, to listen to my body because that amount of pain may be - probably is - enough to cripple anyone else into bed for a good many days, if not longer. Listen to my body and realize, hey, I must have a pretty high pain threshold to allow me to do all I do.

I guess that's just it. I don't want to complain. There's no point in it, it doesn't change anything, and it just annoys anyone listening to it. Complaining isn't my style. But there is something to what I said about feeling vindicated. Being able to say, "See? I am in pain and there is a reason why." Like what I felt initially with my self diagnosed thyroid issue - I felt excited, happy!, that something diagnosable was going on - diagnosable, and therefore, treatable! Soon, I would be feeling better. And when it came to pass that my thyroid was fine, per my doctor, I was at least happy again when he gave me something concrete to do. Take this supplement - it should help you feel better.

But there's also something about now being made to feel like I'm "sick" or diagnostically limited in ways I wasn't just a mere few days ago. Before, I carried on through my pain. Now, I know what's causing the pain - what's physically happening in my body to create the pain - and I instinctively feel the need to take better care of myself. Which, you know, isn't such a bad thing. It's just - being more aware of my body and why it's feeling the way it is, and trying to take care that I don't do anything to make it too much worse too soon.

Vindicated. Validated. Listened to. That's how I feel now, in the end. Which feels pretty good. As for how I live my life? I think I'll, for the most part, chalk it all up to age. Anyone can get arthritis and bursitis as they age. And, yeah, it sucks for anyone! No real need to voice that - not for me, anyway. But I will start to do what I can to help me feel as best as I can in the body I have. I really am looking forward to feeling looser and less achy. Bring on the aqua therapy!

But will I continue to be the same me as always? The same wife and mom as always? Taking care of those I love who need taking care of, pushing my needs - just a bit - to the side in order to make sure my family is feeling its best? Yes. Living our regular, normal lives. Doing (physically) what I want, when I want, and not worrying too much about it being too much for me. That's just the way I am, just the way I always will be.

And, yeah, just maybe, I'll check in more regularly here at Sweetie & Me with some updates on how life really is for a (aging) mom with a physical disability, those challenges, and how they may or may not effect the raising of one of the greatest little girls around.

Friday, February 01, 2013

'Nuff Said

Thankfully, my parents - nor anybody else - also never told me what I could or could not do.

Friday, January 11, 2013

You Be You, I'll Be Me

Continuing on this path of growing and becoming and being one's truth self...

It has become increasing apparent to me that, in so many ways, I am the person who has boxed Sweetie so neatly into a defined package.

I also find myself speaking on Sweetie's behalf an awful lot. Not that Sweetie's disagreed with me on any points in particular - that she voices, anyway. It's just that, in a lot of ways, I make the decisions and she goes along.

I took her to her Grammy's to get a haircut a few months back, and I instructed Grammy on the length and look "we" wanted. I said I wanted it cut to a particular length, and Grammy asked if that length will be okay with Sweetie. I answered, "Oh, she doesn't care what she looks like." Grammy was surprised, "What do you mean, she doesn't care?! Of course she does!" And, as it turned out, Sweetie did care... she actually wanted her hair shorter than I said. In this particular case, she wanted a true "boy" haircut, as she was just about to perform as a boy orphan in a production of "Oliver!" To this, Grammy and I both said no - we were not drastically changing her appearance for 1 weekend's worth of shows. Grammy gave her the bobbed length I originally detailed. 

But still... I spoke for Sweetie on this, as I always have when she gets haircuts, and Sweetie went along with it just fine in the end. In fact I have never asked Sweetie how she wants her hair. I decide, and that's what happens. 

I write here all the time how great and creative and smart and funny and truly amazing Sweetie is in every possible way. Seriously, y'all must want to steal my keyboard from me by now so you don't have to hear it anymore! And, yeah, she's still pretty freakin' awesome - always will be in my eyes. But you know what? There's a different side to her that I'm seeing now that is in stark contrast to how I've always seen my Sweetie.

As her Destination Imagination team leader this year, I am getting a really up close and personal look at how she interacts with her teammates. It's a small team, consisting of Sweetie, another 4th grade girl from a neighboring town that's been with Sweetie for the past 2 years in D.I., and Sweetie's best friend from school, who is new to D.I. this year - a boy in the 5th grade. Every Friday we get together after school, and every Friday I am, 1) shocked at how loud 3 kids can be in general, and 2) appalled at Sweetie's lack of concentration, inability to sit still, and willingness to go along with the others as opposed to eagerness to speak up and present her own ideas.

Yes, I completely get that, as her mother, I see her "issues" during our meetings much more dramatically than any misbehavior that may happen by either of her 2 teammates. But still. In Sweetie, I am not seeing as much of the smart, creative, outgoing girl I thought I knew. Rather, I see her jumping up and switching seats every 5 minutes, when the other 2 stay put where they first land. I see Sweetie having trouble understanding concepts or games, where the other 2 tend to jump right in with both feet. Sweetie's misunderstandings, of course, lead to her whining, "why do they get it and I don't?!" I see her doodling and randomly calling out unrelated things, talking over me and her teammates, when I ask for specific information. And Sweetie has, by and large, taken a back seat to any real planning. She's happy and eager to go along with what is planned, but does not contribute terribly many new ideas to the group.

This is not the Sweetie I thought I knew.

Granted, I'm pretty sure I can recall that her 2 team managers from the previous years have mentioned a similar comment about Sweetie... that she goes along with the group, but rarely provides anything new. They have also casually agreed with me once or twice that it's Sweetie's social development that lags behind a bit, not her intellect. That one I do remember being a bit surprised at. How do they know? Just from 1 meeting a week a few months out of the year? They don't know my Sweetie! But, you know... at the time, and without seeing what they saw, everything's just a statement to me. In one ear, out the other.

Now, I've seen it and I'm, sadly, rather surprised.

But! No matter! DI is team led. Whatever issues they may or may not have amongst each other, is not my problem to resolve. They're a small team this year and must find ways to work together and get things done, come what may. I'm hoping that, because of the small group, I'll start to see Sweetie begin to present ideas and worthwhile contributions to their project. But... my role is really just to be there as a guardrail. Whatever happens in the end for them and their project - so be it. It'll prove to be a learning year for all of us, if nothing else.

But I digress.

Sweetie... She is more than who I've neatly boxed her as. She is who I know her to be, of course. But she is more. She is, in fact, also less. But all of this is good. As I said before. She is growing, changing, finding her place in this world. She is 10. And it's time I started giving her more room to find her way as she sees fit.

Everyday I pick out her clothes and she gets dressed. There's never an argument about this. She never complains. But maybe she'd like to pick out her own clothes sometimes. Occasionally she does this on the weekend, and she does a good job. I always dress her in pants. Maybe, if given a chance, she'd actually choose to wear a skirt sometimes to school. To be honest, it never really crossed my mind that she really cared one way or the other. Well, perhaps she cares. I should give her the chance to show off her style. To develop a style!

She wanted an American Girl Doll for Christmas, as she's wanted one for the past few Christmases. We tell her she doesn't really want one. We point out that she doesn't like to play with dolls. We convince her enough that she removes that wish from her list. No more doll. Well... maybe she does want a doll! Perhaps I and Hubby have almost, subconsciously, smothered her with the idea of how cool it is to be a tomboy of sorts. Heck - it's easier and more fun for us, anyway! Girly-girls are too princess-y. Too fawning and "weak." Too emotional and dramatic! Tomboy girls are cool and interesting and like to build and create and be the superhero! It's great to get out there and play with the boys! Go, Sweetie!

Well... maybe she has a bit of the princess in her. Who knows. Maybe she wants to explore her more feminine side of play. Maybe she wants to play house more than she does. I know she likes to sometimes play school. She loves arts and crafts. I know she enjoys playing whatever it is her few girl friends like to play. She seems to have fun playing at whatever she's given the opportunity to do. And as I keep telling her over and over, girls can do anything! Girls aren't weak and quiet! Be the girl you want to be - whatever that is, that's cool! We should allow her to explore more, I think, and if she wants something we'd classify as a more girly game or toy - so be it. This is Sweetie we're talking about, after all. Not us!

So, yes, Sweetie. As I've said before, you be you! And, with that, I'd love for you to develop your voice more. And I'm sorry if it's largely due to my actions that, at 10 years old, you've not really been given a chance to find who you really are at this point. Speak up! Show us who you want to be - who you are!

As for me... well, I'm taking 2013 to be my year. I read an article recently which stated the dreadful reality that far too many mothers on Facebook, for instance, post as their profile pics pictures of their child(ren). Mothers are hiding behind their children. They're showing the kids - not themselves. Mothers are answering that their kids are good as a response for how are they doing, indicating that "if the kids are good, I must be good too." They are posting funny/poignant/interesting/proud/maddening information about their kids as their status and rarely mentioning any details about their own lives.

And I realize - I do all of this, expertly. I am a fabulous hider. Yes, I take great care of Sweetie. I think I'm a damn good mom. But... who else am I? I really don't know the answer to that. I'm too busy taking care of her to stop and take care of me. To pay attention to who I am and what I need and want.

Well, no more. As I said. 2013 is my year! I've already started by booking myself several doctors appointments. Appointments I haven't followed through on in years. I have oh so many health related issues I've wanted to talk to my doctor about. But I haven't made the time for me before. Now - I'm about to get my health in order and get firmly on my path to wellness and feeling good. As Hubby has always said to me (but I never listened before), he and I have to be the best we can be so that we can raise a good Sweetie. If we don't show her that we care enough to take care of ourselves, what is she going to think about her own health? That it's dismissible? That she's dismissible? That others always come before yourself? That's a wonderful thought and all on the outside, but no. Take care of yourself first, always, so that you can then in turn help take care of those you love.

Happy 2013, Sweetie. The year for you. The year for me. The year we find ourselves, alone, together.

Saturday, December 15, 2012

You Are 10

10. I can't believe it. In 5 more days you will be 10 years old. Wow.

I should be waiting til your actual birthday to write this post, as I've tried to do in the past. But what the hey. It seems like I and others in the family have already been considering you as a 10 year old for some time now. So it's only fitting that I'm a bit early with this post as well.

Yes, in years past whenever anyone has asked me your age, even as we get into December and the weeks and days leading up to said birthday, I've always been pretty good about saying your actual age. Sure, I may say, for instance, that you're 8, about to be 9 in so many days - but I acknowledge your actual age first, always. But this year? It seems like I've been mentioning your coming age first and foremost ever since you turned 9 1/2. "How old is she?" - "She'll be 10 in December" or "Almost 10." Now I find myself looking forward, I guess. Not keeping you grounded in the age you are, but pushing ahead to the age you're going to be.

Not that I want to push ahead at all! Absolutely not. I love you so much at every age you've been and only want your pending changes and milestones to come at the reasonable, natural clip at which they're meant to come. Nothing slower, nothing faster. Just "be" who you are, when you are, and enjoy.

And, oh, I do know you are enjoying yourself! And I also know you're changing. 10 years old - what an interesting age, to say the least. It's the age, according to both Daddy and I, when continuous life begins. Meaning he and I both only remember snippets of our lives before age 10, but from 10 on forward, we pretty much have a good running story of how our lives have been. Perhaps the same will be true for you.

For now, though, you are 10. Dancing on the thin, slick brim between carefree childhood, falling back playfully into the warm bath of innocent fun, or warily slipping off too soon into the unknown abyss of teenaged angst and drama. I see these 2 diverse worlds so dramatically in you, too. In many ways you are still such a little girl. So very full of childish wonder and imagination. People have asked, for instance, if you still believe in Santa Claus. Boy, do you ever! It honestly seems like you believe more wholeheartedly this year than any previous year. You even had me mail off a letter to the big guy in red just a few weeks ago - a step you've never asked for in the past. And, of course, we'll be paying our annual visit to Santa on your birthday, at your continued request.

I know Daddy and I are mostly to "blame" for your fervent continued faith and belief in all things magical and mystical - and that's, quite honestly, completely alright with us. Preferred, even! Intended. For not only do you believe in Santa, but the Easter Bunny and the "magic pumpkin" who visits you every Halloween as well. Wow! Your very own self-carving, note-writing pumpkin who appears at our home every Halloween season just in time for the pumpkin festival. Pretty cool! So cool, in fact, that Halloween is right up there at the top of the list, along with Christmas and Easter, of your most favorite holidays. I don't blame you. I kinda dig on Halloween too, just so I can see your excited response to your pumpkiny visitors. And to think, Daddy simply thought it would be easier, some years back, if he could just carve a pumpkin for you rather than make a big production out of setting up a family carving time to do it together. Funny how cherished family traditions can sometimes start from the silliest, "time saving" things.

Speaking of family traditions... now, this year, you've gone ahead and crafted your own popsicle stick version of the Elf on the Shelf. Your Elf hides in a different location each night, just like the "real" Elf on the Shelf. And, even though we've never had the real Elf, you sure do know your elfin rules! You must NOT ever touch it, for one thing. Also, an elf won't travel unless it has a name. Huh - how interesting! And you also know that, every night, she travels back to the North Pole to visit Santa to report on your behavior, then comes back again to another spot in our house to check in on you. For some reason, though, you got it in your brain that there'd be a prize to be had after successfully finding your elf after 5 consecutive days. Hmmmm.... I wasn't so sure about that. We told you that seemed unlikely and, sure enough, 5 days came and went without a prize. Oh well. She's still been a lot of fun to look for, and she sure has come up with a bunch of funny landing places each time she returns to the house. Looks like Miss Snowflakes is definitely a new beloved family friend and will be back to visit us for some Christmases to come.

More childlike ways you hold on to - you are still very much a cuddler. That's right - becoming a 10 year old has not yet ruined you for your willingness to love on your Daddy and I, and to show us that love often with cuddles, hugs, and kisses. Many times I'll come home from work in the evening to find you cuddled into Daddy's arms as the two of you enjoy another episode of "Phineas and Ferb." And in the mornings, you often will still, wordlessly, sneak closer and closer to me on the couch, physically taking my arms and wrapping them around your body. "Hold me with 2 hands!" you used to tell us all the time - when you were a toddler. Now, this is still what you want. Even if you aren't as vocal about it, you still demand this of us in your own way.

And as I put you to bed the other night, opening up the chapter book that Daddy and I alternately read to you each night, I wondered aloud for how much longer would you want he and I to read to you at bedtime. Without much pause, you decidedly answered that we'd have to read to you every night until you got married, which is when you'd leave the house. "Or," upon further consideration, "until I go to college, actually. But whenever I come home to visit for vacations, you'd still read to me then." Okay, Sweetie. If that's what you want. I don't know, though. I'm interested to see how long you will truly want for this nighttime ritual as time goes on.

On a more unpleasant note... your continuing childlike ways can still often lead to whines and tears. If you're frustrated about something, or don't understand something, or something simply doesn't go the way you envisioned, you often just want it to go away, and you plead for that with sad tears in your eyes. For instance, I inadvertently gave you what I thought was a simple math problem to figure out yesterday during our DI meeting. I'd asked your teammates how many cookie orders they got for their fundraiser, and they each willingly offered up how many dozen cookies that translated into (1 order = 2 dozen cookies.) So I asked you, who had a whopping 19 orders!, how many dozen cookies you had gotten. You did not know right off the bat and, in fact, used division to come up with your final answer. Your teammate, and best friend, tried to show you that you needed to use multiplication instead, and he and I both wanted to help you understand why. I even wondered aloud how a little girl who claims to love math so much could not understand the reason why multiplication leads to the correct answer here. But you just wanted to be done with the whole thing, tearfully saying that this had nothing to do with DI and couldn't we just move on.

And so we did. But I've seen this in you before. More and more you don't seem to like to be challenged. You don't like not understanding, not knowing the answer. For a kid who's always been so interested in and accepting of the mysteries and the curiosities of the world, this is certainly a change in you. Not altogether bad. Just a change. You want more. You want to understand, as others around you already seem to do, and it angers and frustrates you when you don't - or even when it takes you a bit longer than for others. I know that feeling, Sweetie, and I agree. It's not a good one. But at least, ultimately, it does challenge you to reach for those answers. Some day I know you will again feel more comfortable with the stretch, with the reach, with the investigation, and less self conscious about the initial not knowing. It's okay to not know, Sweetie. And it's okay to question. You, more than anyone else I know, have always been comfortable with this process in the past. You're such a smart kid! You'll get there again, and soon. I promise.

Yes, you are a smarty, that's for sure! Beyond the basic "school stuff" - you've always read at least a few grade levels above your actual year, and you scored darn near perfect on last year's NECAP test, especially on the math section. You also brought home your first report card of the year last week - straight A's! Well done! - you are just plain smart, creative, thoughtful and yes, still very curious. You request to watch various documentaries and Nova ScienceNow episodes, and have especially liked the ones about physics and how our universe "works." As Daddy and I sit there, saying our heads hurt from all the trying to understand, you say, "Oh, yeah. I get it. It makes sense to me... and it's so cool!" For your current daily reading selection for school, you've chosen Charles Dickens' A Christmas Carol. I warned that you may find the language challenging, but you wanted to try. You're more than half way through now, claiming that you both understand and love it! You and your best friend both are total knowledge geeks, both always having great days at school and proclaiming that "school rocks!" You both are excited for the coming school vacation, of course, but sad as well. "Excited for Christmas, but sad because we like school and will miss it." And speaking of Christmas, you've requested gifts of not only science kits, but also "physics" games ("physics rocks!") and math stuff. And I found some pretty cool things, I gotta tell ya! I can't wait for Christmas morning to see how you like all your gifts. Yes, you are a kid who has always liked to learn and who has already crammed a lot of information into that little head of yours - both intellectually and emotionally.

Caring. Giving. Thoughtful. Putting others before you, always. This is you, Sweetie, and a very mature you at that! And even though we are what many would call a "financially uncomfortable" household, you really don't want for anything, much. You love the toys you have, and enjoy crafting your own new ones from supplies in your craft collection. I love the board game you made, for example, called "The Opposite Game," where you travel the board moving opposite of the number you select (if you select a 4, you move 6 spaces, since 10-4=6) and the winner is the one who doesn't reach the end first. What toys and games you actually do want, you've put on your Christmas list rather than wish for it for your birthday, which is 5 days sooner. "I can wait until Christmas," you say, "because then the gifts will be free since Santa makes them, and Daddy and you don't have to buy them." Not that you don't want birthday gifts, of course. But you're not really asking for anything specific on that day. In fact, you never really ask for anything even throughout the year. We can walk past a toy section in a store, and you never turn off the main aisle. You look in toy catalogs and make a plan to save your money for what you want. You are not greedy. Daddy told me how he was asking your opinion the other night regarding one more thing he can get me for Christmas. You had pointed out to him that, well, he was getting me that one thing, and you were getting me this thing, and - oh - there's that other thing too. That's enough, isn't it? Three things is good. Even though you were talking about me, I know you'd think the same for yourself too. Three things is good. You would be happily contented with that.

I love how you show so much care and concern for others when they are sad or hurt. To see others sad or hurt hurts your own heart. You only wish for everyone to always be happy. Why can't they be? But if they're not? You're the first on the scene to help them get the care they need and to turn the situation around. You are a caretaker and a happy-maker extraordinaire!

So. 10. You're nearly there, as unbelievable as that may seem. Double digits. A whole decade! Coming closer to the end of childhood... journeying closer, ever closer, to worlds unknown. Do I wonder how you'll fair against peers who may travel at a quicker pace than you? Sure. Do I already see glimpses of teenage drama even now? Of course! But am I fearful that the young person before me doesn't already have inside her, and around her, what it takes to develop the strong, capable, independent, determined and self confident human being you already definitely are? Absolutely not!

If nothing else, Sweetie, you have always been and continue to be a very self-aware person who is not afraid to dance as if no one is watching. Sure, you may struggle with this over the next several years. Maybe you already do, in some ways. But you know, deep down, who you are and where you're headed - others be damned!

Keep on going, Sweetie. Take your time where you wish, veer off the main trail for awhile when other vistas look a bit more interesting - but always keep pushing ahead, moving forward at your own personal pace. You'll find exactly what you're looking for - often change what you're looking for - and no doubt have a lot of fun along the way.

And, for as long as you want us - and even when you don't - Daddy and I will be right there with you, pushing you, pulling you, assisting your journey in any way we can. Even when that means sometimes encouraging you to take a bit of the hike all by yourself.

You can do it, Sweetie. We know you can.

Saturday, November 24, 2012

The Undefined Sweetie

"Sweetie, do you want to get dressed up and wear a dress or skirt because it's Thanksgiving? Or do you just want to wear regular jeans and a shirt?"

"I don't care. You choose."

I picked out a cute "dressed up" outfit, complete with coordinating shirt and skirt and pretty blue leggings. She got many compliments and, I think, felt good about how she looked.

But, honestly? She really doesn't care about things like clothes. Dress her up - she's happy. Dress her down - she's happy. S'all good.

Which, you know, is good!

Apparently, though, she also doesn't care about presenting herself appropriately when she is dressed up.

- "It's not 'dress-up' day, Sweetie."

- "Sweetie! Sit like a lady!"

- "Sweetie! Is that how you're supposed to sit on the couch when you're wearing a skirt?"

It seems like we were constantly reminding her to sit like the young lady she is. Her response?

"I'm not a lady! I'm a half tomboy."

At the end of our visit with Grammy and Grampy, when just we 3 and Grammy and Grampy were left, this whole subject exploded into a full-out discussion where the following points were discussed:

* Grammy used to be a tomboy.

* Arguments from Sweetie that "this" half of her (the right half, for instance) was a tomboy (and therefore 'allowed' to be messy) and the other half of her was girl.

* Just because you don't like certain things that girly girls typically like, and you do like certain things that boys typically like, doesn't mean you are or aren't a girly girl or a tomboy.

* What's wrong with being a girl anyway? Girls can do anything!

* No matter what you say about yourself, you still have to be decent and present yourself appropriately.

* Why does it matter so much to Sweetie to define herself as a tomboy anyway?

Afterwards... I don't know. At least she sat up. I think. It was a long day, and it was time for us to move on to the next Turkey Day Celebration.

On the way over to my parents', well... I'm sorry, but I couldn't let it go. I had to ask - "Why do you think it's so important to define who you are, Sweetie? For a DI kid, I sure am surprised you don't know by now that you are so much more than "just" a tomboy who happens to like some girlie things as well." (thus the "half tomboy" label) "What are some other things you could say about you?"

"I'm a girl who likes to play Legos who has Lyme Disease."

"Ooookaaayyy." (Daddy chimes in) "Yes, that's true. But that doesn't define who you are! You are creative and smart and fun and funny and crafty and in DI and..."

"Most ladies love to shop. But I hate shopping! Most women, you could say, love chocolate. I could take it or leave it. Most ladies loooovvvve shoes. I don't care at all about shoes! But I wouldn't say I'm a tomboy either. I'm me, and that's great! Celebrate who you are, Sweetie! Don't limit yourself with labels and definitions. Be YOU! Be Sweetie!"

--------------------------

In prepping for writing this post, I Googled quotes on defining oneself and being true to yourself. And I was surprised to see just as many quotes advising people TO define themselves as opposed to NOT defining/labeling themselves. And I suppose I see "the definers" point as well. Many of these quotable people were suggesting that one should define himself rather than be defined by society or what others think. When put like that - yes, agreed.

I also read that to give the advice "Be Yourself" is about the worst advice you can give to some people. I agree, it is rather half-hearted and vague advice. Just thinking back to high school yearbook signing... harkens of "never change" and "stay you." I mean, what did we mean by this? Nothing. It was just something to write that "sounded good." I think better advice might be to be the best version of yourself you can be. That way you are always reaching, always striving, always allowing for change and growth. Whereas to "be yourself," in its own way, is somewhat limiting and doesn't necessarily require you to grow into yourself - you're already there.

So, no, Sweetie. Daddy and I are not telling you to "be yourself." But we are challenging you to discover, appreciate and love being YOU! YOU are still growing, learning, experimenting, dreaming, creating. YOU are still working on your self, as all kids are. As all people should be, no matter their age. Your self is an ever-changing being, lead by your passions and interests, environment and beliefs, and more. Your self is someone YOU can and should always be working on to master...without ever actually mastering, as no human is ever perfect. YOU are full of knowledge and challenges, light and dark, creativity and questions, and so on. You be YOU! And don't let your self or anyone else ever tell you you can't be!

"Today you are you! That is truer than true! There is no one alive who is you-er than you!" - Dr. Seuss


Thursday, November 01, 2012

They Probably Were Just Shocked Silent by my Awesome Costume

After my last post of complete nonsense (puhleese! Who gives a flying fig about our TV viewing habits anyway), I thought today I'd try something a little more heady.

As in, it's all in my head. I know...

So the other day Sweetie and I were around a group of people that I'm around a lot and she's never been. Granted, I do not really claim to know these people, as we don't really talk to each other much. But, let's just say, any of these people would almost certainly recognize me in a different setting, and I them.

And it's not that I don't want to talk to them. It's just, shall we say, rather cliquey there and I'm pretty much one of the outsiders. If spoken to, I'm friendly, of course. Just, all in all, they and I don't have a ton in common, which is okay.

At any rate, I had to bring Sweetie with me to this place because of scheduling issues and lack of childcare. Fine. But I was thinking, in the back of my mind, that maybe Sweetie's presence would actually be a bit of an icebreaker. That, and the fact that I - the quiet one - was dressed up like a big yellow spelling bee!

I have nothing against this group of people and would be happy to get to know them. I'm just not a good instigator of conversation when they are clearly paired up in teams of existing friends. I thought, perhaps, this would get something started.

Certainly someone would at the very least say hi to Sweetie. Ask her her name? Maybe tell me they liked my costume? Possibly ask me what I was if they didn't quite get it? (what's not to get?) Wouldn't you think? Well, I thought, anyway.

Annnnddd... the answer is "no." They would not. Nothing. Yes, I got some people to look at me, presumably to see what my costume was (as some of them were dressed up too.) But I got no comments, at all - good, bad or indifferent. And no one breathed one breath of a word to Sweetie. At all. I think I saw some people look at her, then me, and therefore, I guess, figure out for themselves that she was my daughter. But no one said a word. (Full discloser - I will say there were a couple people I approached for other reasons, thus engaging them in brief dialogues, and of course they both acknowledged and liked my costume and were happy to meet Sweetie. But all the many others? Eh. Not so much. Couldn't have cared less, in fact.)

All this set up to say... this situation made me think. What if some of these people were surprised to see that I had a daughter? What if they were even shocked that I - the one who clearly has some sort of physical disability - not only have what appears to be a healthy, "normal" daughter but was able to have her in the first place? What if some of them were even disgusted that I would selfishly go through with a pregnancy, thus putting my unborn child at risk of having the same disability I have - whatever it is - or possibly even worse?! What if?

Not to say that ANY of these people were, in fact, thinking this AT ALL! I am not saying that they were. I have no idea what they were thinking about she and I, if anything. In fact, far be it from me to even presume these particular people, or any one member of the group therein, was even giving me and/or Sweetie any amount of head space at all. It's just that, I got into my own head space about the situation and got on this bender of "what ifs."

Thankfully, I have never personally come across anyone - that I'm aware of - who has been anything but happy to meet me and Sweetie. I have to say not one person ever has acted cruelly toward me or her because they were on their high horse of "disabled people should not have children." Everywhere we go, people are nothing but polite to us. "Normal," even, which is the way it should be. Perhaps, if anything, I may have met a person here or there who is happily surprised for me that I went through a pregnancy and now have this amazing, physically able, bright and creative daughter. But no one, to my face anyway, has ever been the exact opposite of that.

But - I realize that there are, in fact, people out there with this sad viewpoint. And this situation she and I were in the other night brought it forefront to my mind. What would I do if I ever did meet someone who was vehemently against disabled people - and maybe, more specifically, disabled women - having children. What would I say? How would I react?

First of all - I honestly don't know what I'd do. I think my gut reaction would be shock that I was meeting someone like this who had the nerve to get in my face about it. Then I would probably get in their face a bit with a comeback pointing out how obviously fine, even GREAT, Sweetie turned out - "isn't she lucky?" And then... well, I don't really think I'd waste much breath on this person who I really don't need to explain myself to at all. But, I do know for myself and Hubby that we actually thought a great deal about the possibility of my carrying a disabled child while pregnant and what did we think about that? I'll tell you what we thought about that!

We thought, what better parents for a disabled child to be born to than a set where one of the parents actually lives a, shall we say, "compromised" life?! I know first hand what it feels like to grow up as a disabled person in a family of able-bodied people. I know first hand what it feels like to be encouraged to do and try and live the best life I can, despite any physical limitations I may have. I wanted to roller skate? My parents let me try. I wanted to ski? My parents let me try. I wanted to wear certain kinds of shoes because they were fashionable, but not easily able to fit around my leg braces? My parents bought me a pair and let me see for myself if I could successfully wear them or not. My big brothers teased me and took care of me, just like any other siblings treat their younger sisters. In a nut shell, I did not grow up feeling "different," only loved. And I knew that, if Hubby and I were lucky enough to be blessed with a disabled child ourselves, that we would be excellent at it! We would be the perfect fit!

But, luckily, we ended up with Sweetie. Physically able, mentally strong, totally GREAT Sweetie. Yes, we are lucky parents indeed.

Just like we would have been lucky to raise a less "fortunate" child.

So many couples who want children are, for whatever reason, unable to successfully establish or complete a pregnancy. But we did. No matter the outcome, we would have been one of the lucky ones.

And so, might I say, would the child be lucky to have us. Sweetie is lucky to have us. She was meant for us. We are the perfect fit.

I am so happy I have never run into anyone whom I've felt I've had to explain my reasons for having a child to because I knowingly put my unborn child at such great risk. Maybe one or more of the people she and I were around the other night were thinking just this. Or maybe not! It really doesn't matter at all. They just got me thinking, that's all.

Yes - I put my unborn child at risk... of being loved too much, no matter what, and having the best parents and family around.

However could I have done such a thing?


Sunday, October 21, 2012

Decision 2012: Choice Programming

About a month ago, chez Sweetie & Me made a bold move - we cancelled our cable! Mind you, we only had the very really basic cable anyway, but still. No more. Nothing. Gone.

Like I said, this was a bold move, and a big family decision.

Our reason for doing this was two-fold. We wanted to save money and cut out excessive TV watching. We, who always seem to have the TV on, if for no other reason than for background noise. Why did we need the TV on all the time? We didn't, plain and simple. There are much better things to do. Cutting our cable ties would be a great thing.

Of course, we didn't want to go too crazy and drop all TV watching completely! We still wanted access to shows we liked. This way we could watch what we wanted, when we wanted, and not live our lives according to the TV schedule.

After much debating and free trial periods, we settled on Hulu Plus. For a minimal monthly fee, it gives us day-after access to almost all the shows we love and wish to continue watching. We've had it for the month now and it really is perfect for us!

One thing it doesn't have is most, if not all, CBS shows. No more "murder shows," as Hubby and I call them. No more CSI, The Mentalist and - the new, promising-looking one that we never even got to see before the cable went bye-bye - Elementary. Ah, but no fear... if we really want to see those, we can get them at cbs.com. It just may take a week or so before they're available. That's fine.

Now, as I was saying, we were such a TV watching household! The TV was on more than it was off. Reality shows in particular were great! The Voice, American Idol, Dancing With the Stars, So You Think You Can Dance. I loved 'em all! And when they were on, we all enjoyed seeing the performances or listening to the auditions.

Okay, okay. Maybe not all of us. Certainly Hubby wouldn't choose on his own to watch any of those. But if I had them on, no one complained. Yes, I chose the shows... and, in fact, I was the person who mindlessly watched TV much more than Sweetie or Hubby ever did. But when it was on in the evenings, even my choice of show, we all at least seemed to enjoy watching the various "reality" competitions. How was I going to live without all this?!

Never fear! Turns out that without cable and with Hulu Plus, I still have access to several of these reality shows. Dancing With the Stars, for instance. Every Tuesday morning before work, I have enough time to tune in to what took place the night before. And so, that first Tuesday morning, there I was, home alone, clicking into Hulu to queue up some Dancing! And with Sweetie and Hubby not there - they who never did really care - I was free to indulge my "junk" watching as much as I liked.

Aaaannnnddd... eh. Whatever.

That first time, yeah, I think I kept the episode on. But I was doing other things, not really watching. I think it even took me a couple days to get through the whole thing. But the next week? I tried again. Nope. It wasn't working for me. I turned it off way before finishing. I've tried once more, but that third time didn't even last 5 minutes and has been the charm to tell me, no. Amy, you really, really don't need to watch this stupid stuff. Let it go. Just let it go.

And the other reality stuff that I so faithfully watched before? The Voice, for instance. I've never even tried to watch it with Hulu. Even So You Think You Can Dance - I LOVE that show! And watched the whole season faithfully when we had cable. Only the finale was left when our cable went bye bye. And, lucky me!, Hulu has access to that finale, no problem. I put it in our queue... I still haven't watched it. Don't really care, it turns out. I happened to find out who won anyway. So no need to watch the whole program, right? Right.

Huh. Turns out we really were watching just for the sake of watching. Turns out all these contestants we thought we cared about and whom we were really rooting for, we really didn't care about at all. Or I didn't care about. Yes, me. Hubby and Ella didn't care. I cared. But, obviously, it turns out, I didn't.

Not to say there's not any "junk" I've taken a renewed interest in through Hulu. I'm back to catching up with Project Runway - a show we haven't had access to for at least a couple years now. And my real secret love that no one else in the house wants to watch - America's Next Top Model. But, lucky me, I have time everyday when I can indulge in these types of shows without bothering anyone.

And so, has canceling cable and introducing Hulu done anything to accomplish what we originally intended? Well, on the outside, maybe not. Canceling cable brought our internet cost up, and then there's the cost of Hulu. So we're only saving a few dollars there each month, not the bigger chunk of change we were at first envisioning. And the TV watching... yeah, it's still there. I'd say, in fact, that we still actively watch just as much as we ever did.

But that inactive watching... that having the TV on just for the sake of having the TV on stuff... the white noise effect of just having the TV on... That is gone for sure. Now, we really only do have the TV on when we purposefully wish to sit down and watch something. We watch with intention now. We make family decisions. We watch for a reason.

Sure, the reason may be silly every now and then. Obviously we're not watching only the most educational and informative shows of them all. But we do do that as well. Nova Science Now, for instance, is a great family favorite! And Sweetie loves to watch BizKids, a show that teaches kids about the importances of money and responsible spending/saving. And I've got several documentaries lined up to watch in our queue over at our Netflix instant streaming account.

Bottom line is, what we watch now we are choosing to watch, for whatever reason that is.

All in all, it's a very good thing.

Now, as someone who grew up with the TV always on as "company" - if only I could get used to the deafening silence when the TV is now off.

Alone with my thoughts. It's a dangerous thing.