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 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.

Friday, September 28, 2012

Tales of a Fourth Grade Something

So, here we are. A month into the new school year.

Fourth grade! Arguably the best of the school years, as both Hubby and I remember it. The year that solidly starts you off on remembering everything from here on out. You know what I mean? As an adult, I can remember, spottily, various events, adventures and randomness that took place prior to my 4th grade year. But I can pretty well remember life as I know it moving forward from 4th grade up to present. Hubby agrees. Fourth grade is where it's at and from whence it all began.

As for our particular fourth grader in question, Sweetie is loving every minute of it. She was excited to go back to school and sorely disappointed when, just 3 days into it, she was told there's no school on Labor Day Monday. "What do you mean, there's no school?!" Oh, did she want to go so badly. To have a day "taken" from her so soon was heartbreaking.

The day before school started, she and I went to the Open House to visit her new classroom and teacher. As she found her name placed at one of the places in the clusters of desks, she wondered aloud who the kid sitting next to her was. It was a new name. A new kid! She was intrigued to find out the next day what the face of this new name would look like.

After school that first day, of course I had to ask. "So, is A____ nice?" Yes, he was nice and funny. A big hit! Then, upon some further reflection, she proudly declared that "I think I made a new friend today." Why? Because "We turned things into chocolate and then ate them." Okaaayyy. So that's how it rolls in 4th grade. Sounds good to me.

After about a week or so into school, Sweetie came home with an Origami Yoda. Cool! Did you make that? No, A____ made it for me.

Ah, yes. Friendship. True, unadulterated friendship is what, here, have we.

Sweetie has always been her own person. In years past either playing on her own at recesses or joining in on whatever game looks good to her, not caring which particular kids are involved. But this year, now that she has the same recess as the 5th grade, she's almost always playing with her 5th grade friend from the Boys & Girls Club. And A____ as well on occasion.

And her supposed BFF of 5 years running? I can honestly say that I have never heard Sweetie say she's played with her at all. That right there is strictly an "in name only" relationship. Sure, they like each other, have fun when they are together, and invite each other to birthday parties and other special gatherings. But beyond that, yeah, not so much. Weird, but true.

And yet, Sweetie told me somewhat recently that she thinks, if she had to choose, she'd say she's probably one of the more popular kids at school. Oh yeah? Why do you say that? "Because no one is mean to me or doesn't seem to like me." Oh. Cool. You are a very likable kid, I can vouch for that.

So, yeah. I've heard Sweetie's tales of her solo-playing recesses. Even though she hasn't seemed adversely affected by it, I've felt bad for my poor daughter who no one wants to play with. Or maybe she's not outgoing enough to ask kids to play with her. Either way, what a pity that she spends her free play time roaming around on her own, making up elaborate games and skits in her head that no one will help her see to reality.

I remember my own childhood and know I absolutely had a true and honest best friend from the start of first grade. We played together always, slept over at each other's houses, and even talked for hours on the phone at our young age. Hubby too had a definable "best friend" in his early elementary school days. So why hasn't Sweetie solidified that kind of relationship for herself yet? And not just in name only? Obviously she's socially inept and a loner, right?

No. Definitely, not. She's not a loner. She just choses to play a particular way. If others want to join in, great. But, more likely (until this year), others will not. But that's okay with Sweetie. After all, she's the only one who can see the full vision in her imagination of how her elaborate ideas would come to pass, anyway. Obviously, she's not bothered by this. In fact, she has preferred this solo playing simply because she alone knows what she wants out of it.

But have the kids ever picked on her? No! Sweetie is a rockstar! An edgy kind of kid with a confident, quirky attitude and an unusual way of playing. She knows she's having fun, other kids or not! - and she's always "great." You don't pick on that! If anything, Sweetie is someone to be admired or even, dare I say, envied.

And now? She finally has recess with her good friend in 5th grade. A kid who totally "gets" her. A kid who can see into her elaborate imagination just as vividly as she can, add to it, and help bring an even more amazing scenario into the world. And the new kid, A____, well seems to be a kindred spirit as well.

I've written about this before, but she continues to amaze me every year.

One thing's for sure. Either alone or banded together with the few like-minded cohorts who enter her world, Sweetie sure is something!

Friday, August 31, 2012

I'll Take "'80's to the Rescue" for $1000, Alex

Answer: These two 1980's icons have teamed up to both entertain and improve the speech patterns of one 9 and a half year old Miss Sweetie.

Question: What is the Sony Walkman and Bill Cosby?


Last week we gifted Sweetie with Hubby's old Sony Walkman, along with his large collection of Bill Cosby comedy tapes. Happy back-to-school-and-congratulations-on-being-cast-in-"Oliver!" present! (Sweetie recently tried out and was cast as an orphan in a local production of "Oliver!" We are all very excited.) 

But we have an ulterior motive, as well. 

So far Sweetie has enjoyed listening to 1 whole tape all the way through and has listened and laughed happily. Hubby and I are hoping that, with the help of Mr. Cosby's superb story-telling examples, our Sweetie's own story-telling capabilities will improve.

Now don't get me wrong. Sweetie's speaking issues are pretty mild. It's just that, by listening to other kids about her age speak as well, we can hear that Sweetie just has a bit of trouble finding the right words and telling a cohesive story a lot of the time.

She's not stuttering. But she will start her sentence, realize that (in her mind) she's forgotten (to her) a key word, and will start her whole sentence over from the start so the word can be included. And this may take a few attempts before she's satisfied she's correctly said whatever it is as she intended and she moves on to her next thought. Where the same issue may or may not present itself. Either this, or she stops, searches for the word she's wanting to use, but can't find it and gets frustrated and gives up in tears, saying she doesn't know how to say whatever it is she's trying to say. She is also likely to get lost in her own head when, for example, relaying to us what her dream was last night. I admit, it was near agony for me to listen to her tell me a (what should have been) simple portion of said dream the other day - which should have taken all of 1-2 minutes - over the course of a 10 minute car ride. And she still hadn't finished! Because she kept stopping in her narrative, wherein I'd have to ask if that was all. "No, there's more," she'd say, "I just was remembering how funny it was for a minute." And then she'd go on. With stops and starts along the way.

Will child protection services people come get me if I admit that the sound of my own daughter's voice can sometimes drive me crazy? Arrrrgghhh!

We try to let her work out her stories on her own. We try not to "fill in the blanks" for her as she tells a story so the narrative can keep moving forward. We know her mind is racing faster than her mouth can get the words out. We know she has a lot to say (Lord, does she have a lot to say!).  But it can be difficult to both watch her struggle and listen to her try to, slowly, find her way sometimes.

Yes, it could be just a "thing" that lots of kids go through. Even most kids! And it's not like I expect her to be a fabulous orator, either. But, like I said, it seems to me that most kids around Sweetie's age by this point are pretty well able to tell a smooth, flowing story when they speak on anything from in-class discussions to at-home silliness and everything in between. A late bloomer? Yes, I think so.

As for Sweetie's vocabulary - well! She has always done well there, regularly choosing words you'd most likely not hear the typical same-aged child using. She can be a regular little grown up, in fact, in her contributions to our family discussions and the words she easily chooses to express her opinions. She's a great speller and is more than a couple grade levels ahead of where she "should" be in reading and spelling. So we know she has the words to use - she just has difficulty in getting even the most simple words out sometimes.

I have to say, I'm pretty sure I know where Sweetie "gets" it from. I often find myself searching for words, and/or accidentally using the (completely) wrong word many times when I'm trying to verbally express something. It's so frustrating for me as the one making the "mistakes." I know Sweetie feels at least a bit of frustration, maybe even shame, for what she's dealing with as well. One day, completely out of the blue (but after a little "issue" as she was trying to tell me something), and letting her know that I was absolutely not picking on her - I just was curious to know why it was she always stopped and started many of her sentences over again when she missed only 1 word in what she's trying to say. She instantly had tears in her eyes when she answered, "I don't know. I just see that I'm making a mistake and I want to say it right, so I start over." So, yeah. She knows she does this. Like mother like daughter. Frustrating all around. 

And so, yes... we have turned to Mr. Cosby and his fantastic comedic story telling skills. Wondering if/hoping that Sweetie will take a cue from him and "naturally" improve her speaking patterns. We hunted down Hubby's old Walkman so she'd have something portable and private she could use to listen to these ancient relics called "tapes." And look forward to seeing her enjoy herself along the way.

If nothing else, there is that. Bill Cosby is funny, funny dude. At the very least, she'll get a few laughs out of all this. Ain't nothin' wrong with that. 

Tuesday, July 31, 2012

Dreams Don't Work Unless You Do

The blank page. The writer’s worst nightmare.

>A story needs to start somewhere. But where? How? What are you going to say? Why do you want to say anything? What is going on?

It’s all up to you. No rules. Just...go!

But what does the writer do? Well, when I’m the writer, I... do the laundry. Work on my counted cross-stitch. Do the dishes. Watch some T.V. Take a nap. Play a game. Read a book. And eventually... maybe look around the internet and Facebook for inspirational quotes. Something that will get me on my way! Something that pushes me to just... go!

But MY BOOK. That... that is so... BIG! So undefined. So much. Too much to take in, to wrap my brain around. Yeah, I say I want to write a book. But to actually do it?! Hmmph. That’s a whole different subject entirely.

And so... maybe I sit down and write a blog post. Yeah! That’s what I’ll do! I’ve got 2 blogs to my name and finding post topics to write about for either is easy. Current life events, one not necessarily connected to the other. No long back story to lay down for the reader. No “hook” to drag ‘em in and keep them reading other posts. It’s just 1 post. The reader can read it and move on. Or explore previous post! Or not. I really don’t care. It’s a free world, after all. Creating my blog was free. I write when I wish. There’s no “due date” for it to be done. I’m not expecting a grand financial reward for “finishing” it. It just is. Blog writing is easy.

But then, what’s that? What did I hear? There’s that niggling voice again. That deep, determined, confident voice that tells me that I am meant to write a book. I made that claim years ago. I have an unusual and important topic to write about. I have a dream. Now I have to just do the work.

You know? I am a softie for all those inspirational sayings going around the internet. Everyday I log into my Facebook account and take in all the awe-inspiring images and artistically displayed “You Can Do It!” expressions that fill up my Wall. The one about trying again and again until you succeed. The one about never giving up. The one about believing in yourself. The one that encourages you to do your best and be your best. The one that says you can’t fail unless you try. You can do it! Yes! Yes, I can! I am awesome! I am deserving! Let’s get going and do this thing!

And then? Well, and then I just sit back down on the couch and watch So You Think You Can Dance. Or America Idol. Or American Ninja Warrior. Or whatever it is that’s the latest and greatest T.V. reality series in which people are living the dream and reaching for the stars. They can do it! Go, them!

Oh, but what’s that, you say? Wasn’t I supposed to be doing something for myself? Wasn’t I supposed to be getting my own dream underway on it’s own path to completion?

Oooohhh!... Completion. That’s the problem! I am much too intimidated by that word. Completion. I have a whole book to write! What, it’s going to be at least a couple hundred pages or so, right? That’s a lot! I can’t do all that. I cannot see myself at the end of that road. It’s a loooonnnnnggg road. I don’t even want to get started on that journey.

But what is it that Anne Lamott of Bird by Bird: Some Instructions on Writing and Life, said? To paraphrase, she compared writing to driving on a dark road at night with dim headlights. You can only see the road ahead of you as much as your headlights allow. You cannot see your whole journey laid out ahead of you. But you get there, all the same. Just keep following the road for as much as you can see at a time and, sure enough, you’ll arrive at your destination safe and sound. Such as it is with writing. You don’t have to see the end in sight. All you need is the little bit ahead of you dimly light by your headlights. Keep on moving forward, and you will get to your destination - your writing destination - safe and sound.

(Hmmm! Now all I want to do is stop writing here and go pick up my Bird by Bird copy again. That’ll surely get me writing again!)

No. No, it won’t. I mean, sure, just like all the other positive affirmations and inspirational quotes, reading her book would help add to my “can do” attitude. But as long as I’m reading, I’m not writing. All I’ve got to do is write. One little dimly light section of the road at a time. Just write.

So, I started a Kickstarter project. A project for my book, where others can choose to help me fund the actual creation of it. A project that, as I started settling in the details of it, my 9 1/2 year old daughter asked me (in a very Isabella from Phineas and Ferb kind of way), “Watcha doin’?” When I told her, and she asked what my project is, I said, “Writing a book.” - “What’s your book going to be about?” - “You. You and me.” - “It is?! Awe. That’s so sweet.”

And from then on, Sweetie has been excited for me. So interested in this book I’m writing. And that’s just it. I told her I’m writing a book. She believes me. Why not? She has no reason not to. She already knows I like to write and that I write 2 different blogs about her. Why wouldn’t I write a book?! And even so, even if she had her doubts that I could actually do it... I don’t lie to her. She knows that I do not do that. It’s not even a thought in her mind that I’m ever anything but 100% honest with her. And so... she knows I am writing a book.

And so... I am writing a book.

I try to live my life as a great example for my daughter. Or at least reading and feeling and believing all those wonderful inspirational quotes makes me feel like I’m doing it! I’m teaching my daughter that she can be and do and try and believe and succeed at whatever it is she puts her mind to! And she does believe this. As her third grade teacher said, Sweetie is a kid who is as comfortable in her own skin as you can get for her age. She knows exactly who she is. She doesn’t pander to the popular kids. She knows what she likes to do, and does it - whether she can find a friend to do it with or not. She is a great kid who always says she’s great! And completely means it. So, I guess Hubby and I are doing something right. Despite our best efforts - she is a shining example of all the wonderful life lessons I hope to instill in her.

But I can be doing more. Sure, I tell her the lessons. But I am not living them. That is the problem. All those inspirational quotes. I love them! I feel them! But am I really living them? I know how upset I get when I see others posting those quotes, claiming their strong belief in these quotes, and then... completely leading their lives in the entirely opposite direction. They are blatant non-followers of the words they claim to follow! How can they post such words when they do not live by them? Blasphemes, all of them!

As have I been. I post and proclaim and believe and share all of them. And then, I sit on my butt. Telling Sweetie to believe and try and do and create, but not doing it myself.

That is about to stop.

I am on this earth to do something other than sit around watch TV. Something more than creating counted cross-stitch pieces. More than writing my blog.

I said I’m going to write a book. I am going to write a book.

I am writing a book.

One dimly lit section at a time.


Tuesday, July 24, 2012

Crippled Is as Crippled Does

True. We just moved into a new house. A house where we can have 1-floor living. For my benefit. We have the second floor. I just don't have to go up there, except for when I want to.

(We also moved for Sweetie's benefit. Bigger bedroom plus an extra play room. Yay! Many other reasons, too. But these were the biggies.)

Also true that, now, given the choice, I will almost certainly take the elevator upstairs instead of walk up one or more flights when I visit various doctors and office building. I could walk it. I just choose not to. And that's okay.

But, no. I do not need one of those sit-in-a-mechanical-seat-and-slowly-ride-up-the-stairs contraptions. Heck, no! I will not use it, Sam I am!

This point comes up because one of the places I work is seriously considering moving locations. To a second-floor space. Up 1 flight of stairs, 18 steps up (as Sweetie counted when we visited yesterday evening.) My boss asked me to come check the space out, primarily because she was concerned for me about the stairs. No problem, I told her before seeing the place. I can do stairs, no problem.

So, Hubby and I and Sweetie, along with a couple other important people my boss wanted to see the space, headed out yesterday evening to check things out. Yup. Them there are stairs. You weren't lyin'! And... like I said. No problem. I can do stairs. I just don't choose to, if I have the choice.

During our time there yesterday, and in talking with the realtor, the idea of installing one of those mechanical ride-on chairs on the stairs was brought up. You know, for other members of our community (I work for a small alternative spiritual school/interfaith church) who may be elderly or impaired and not easily able to/wanting to climb the stairs. Sure, the realtor said. We can at least bring the idea up to the landlord to see if they would be okay with our adding this on.

So that was that, and the space was big and great and just right. I gave it my stamp of approval, as did the other people in attendance. Then my boss asked me directly:

So, Amy. You said you like the space. You approve. But what about the stairs?

They're fine! No problem. I'll have no trouble getting up them.

And what about the idea of adding on the mechanical chair?

(Oh! They're thinking that would be a big help for me! I didn't even consider myself as part of that equation.)

Oh. I wouldn't use that. I definitely wouldn't use it. In fact, if it was there, it would be in my way. So if you'd only get it for me, don't worry about it. 

You wouldn't use it?

No. I would not. I mean, unless something happened to make me severely crippled. Then, of course. But otherwise, no.

With that, all of a sudden, Sweetie pops into my personal space, demanding to know, "What does crippled mean?!" (Apparently, she asked me politely a moment before, but I didn't hear. So she got in my face about it.)

When I finally was able to attend to Sweetie's question, I gave her my quick, not-really-correct-but-it-did-in-a-pinch definition of crippled - it's when you're really, really hurt or not able to walk at all. Much worse me.

So anyway, after that, my boss and the others kind of agreed, quickly - "Well, then. It's always something that can be added on later if you want." I kind of think that my very certain, very quick and definite answer to the chair question took them all by surprise. They probably didn't know what to do with themselves at that point.

And Sweetie's question kind of took me by surprise. I mean, she has me for a mother and she doesn't know what the word "crippled" means? How can that be?

I'll tell you how that can be. Because I do not define myself as crippled. Not by any stretch of the imagination. Sure, I am limited with how much physical activity I can do. I know my limits and I accommodate. But I definitely am not crippled.

And I don't mean that I take that word as a negative connotation of what I am - physically disabled. I know, logically, that I am physically disabled or, if you prefer, crippled. But it's just that I don't look at myself that way. I don't treat myself that way. I don't have family or friends that treat me that way. I'm just me. I'm just Amy. I'm just Mom. I do what I'm able to physically do - just like any other person out there does for themselves. I don't focus on what I can't do. I just know what those things are and live my life accordingly. I ask for help when I need it. But, all in all, I look at what I am physically able to do - not the opposite.

Back to that mechanical chair - no, I most certainly would not use it. In fact, I would take offense at having to use it. I'd be embarrassed to use it. Choosing to ride the elevator up a flight or more of stairs is one thing. The elevator is there for all to use, and hundreds of people in all sorts of physical conditions use them every day. But the mechanical chair on the stairs - no. That is meant for someone who cannot, in any other way, comfortably get up the stairs. I can. I am able. No problem. I will climb the stairs. Let me at 'em!

Crippled is as crippled does. You're as crippled as you make yourself be. This is true for anyone. I do not act crippled. I do what I am able to do. Just like we all do. This is what Sweetie knows of me. This is what everyone who knows me knows about me.

And I will climb the stairs!

Thursday, July 19, 2012

I've Got Skillz - Mommy Skillz

If I look back over my years as a working woman, I find a lot of safety in those numbers.

During college I worked at the local newspaper during one summer. I also worked for years and years, starting in high school, at our local Barnes & Noble. After graduating college, I continued working at Barnes & Noble, and went back to the newspaper, this time full time and for many, many years (about 11 or 12).

I also began my love for tutoring during my senior year in high school. I have tutored on and off ever since.

After my downsize from the newspaper (they're not so much the "thing" anymore, if you didn't already know), I struggled to find employment, tutored where I could, and finally landed a good job with a great boss. Just she and I. Mostly just me. Managing her office. I'm still there and I still love this job, and my boss. It's a good fit for me.

But this job is only part time. I need more income than that. So I've continually stopped and started, struggled and glided into positions to fit my schedule and bring in more cash. I've written, I've receptioned, I've shipped & handled, I've office managed, and I've call centered. None of them, I have to admit, have been the best job ever. But I got the jobs, learned some new skills, met good people, saw how me and given job did & didn't fit, and finally left one way or another - some my call, some not so much.

And all along the way, all I really want to do with my life is be a mom. I know that job. I am great at that job! Please, just let me be a mom.

Yeah, well, that's great and all. But being a mom doesn't bring in the money.

Through all my varying work opportunities over the last several years, I have learned that I am pretty darn good at customer service. Huh?! Who knew? Shy, quiet ol' me. Me, who would way rather email friends and family than use the phone. But give me the phone and a desk and I can interact fantastically with the general public. I am friendly, warm and sympathetic. Tell me your troubles - I'll find a way to help you out.

And so, with that, I am heading back to work - in addition to my regular small office managing job - at the call center. No, it's by no means a glamourous job. I'll be making cold calls to hospital patients who are late paying their bills. But it's a good job that I am familiar with, I know I can do it well, and I really do get a great feeling being able to help those who are struggling find a way to pay down their bills through payment plans, financial aid, or just a friendly reminder to send out the check.

Plus, this job is a "leave it at the office" job if ever there was one. I go in, read the scripts, do the calls, and leave. No stress. Easy repetition. My kind of job. In fact, when I worked so many years at the newspaper, one of the reasons I loved my job there so much was the repetition of it. Sure, it was an important function of the paper (getting the classified section organized and printed), and it could be high level stress from time to time. But the basic operation of the work was the same everyday. I do well in positions like this. It's where I feel most comfortable.

And, the best part of all, is I'll have more time to do what I really want to do - be a mom. Sure, I'll be working most evenings until 8pm. But I'll always be home for bedtime. I'll have a couple daytimes a week off, good for scheduling doctors appointments, and if snow delays or cancellations of school happen this winter, I'll have morning hours to get Sweetie either settled elsewhere or choose to work from home for my office job. So happy that my boss there is very accommodating to my having both flexible work hours and location.

Oh - and another good thing... the call center offers full medical and dental benefits! WOOHOO!!! For 16 hours work a week, I can now, FINALLY, have good benefits. For myself, anyway. And boy do I need them! Oh, the doctors appointments I would schedule if only I had the benefits! Well now I can. And I'll have the flexibility of schedule to go to them. Yippee!

So, yes, you could definitely say that I like to play it safe in many areas of my life. I keep returning to places I'm familiar with, not one to make grand leaps of faith into entirely new opportunities. But you could also say that I know where my skills lie. I may not be CEO material. I'm probably not even a good candidate to manage the neighborhood Dunkin Donuts. But I do know how to interact with people. And I do know how to be a fantastic mom.

I choose to choose work opportunities that let me focus my energies and skills where they truly belong, where they really fit the best.

I choose to be Sweetie's mom.

Saturday, June 30, 2012

Mom Rules

Something that I have mentioned here, oh, every once in awhile, is how proud I am of Sweetie. :) How proud of her Hubby and I both are! She is truly an amazing little girl who, for the most part, is a kind, respectful, and polite person with a heart as big as her imagination and an ever-increasing curiosity.

Does she ever do anything wrong? Ooh, boy! Ha! Does she ever! Of course she does - she's a kid! A kid learning her way in the world, testing her boundaries and trying to gain every bit of independence she can. And with all that testing, learning and gaining comes, at times, disobedience, attitude, and just plain rottenness. She is not immune from it, oh no.

I would have to say, though, that her biggest "issue" - and Hubby would agree - is her inability to listen and/or her "selective" memory. We tell her several times to do something, yet she claims we never told her. She remembers very well when we happened to mention, on a whim, that we may go to such and such fun place at some point, sometime. But does she remember the very pointed direction we gave her to follow as one of her weekly chores? Heck, no. 

But, well, that's a kid for you. I'll take this "off" behavior over lying, stealing, back talking, sneaking, and outright defiance any day, thank you very much. 

Furthermore, as I know I've mentioned here a few times, one of the things I am most proud of Sweetie for - most impressed with - is her remarkable ability to recognize that, when we are upset with her about something, we are merely upset with her behavior, not her directly. Sweetie's ability to separate these two aspects and to understand, completely, that we always and forever, unconditionally, love her, but do not always love what she does - and the bad choices she makes is what gets her into trouble sometimes - well, it's just really mind-blowing to me that she "gets" this so well at her age. She's always "gotten" this. Make no mistake. 

As a parent - as her parent - I am amazed every time she does something so wrong that Hubby or I get so mad at her - raising our voices, sending her to her room, probably dissolving her into tears - yet, moments later, after she's calmed down, allowed to leave her room, and go back to behaving like a reasonable person again, she'll come up to me on the couch and snuggle in, or tell her Daddy this funny joke she just made up, or ask us if we all can play a game together. She understands - perhaps more readily than we do - that the anger is over, the punishment done, and we can all get back to a happy household as we know and love it. 

All this to say that, yesterday, Sweetie's rotten behavior almost paralyzed me. Her outright defiance of my directions left me - I admit it - feeling practically helpless. Meaning, if she truly was going to NOT do as a say (at a friend's house, without Hubby there), how in the world was I going to make her comply?

I can't pick her up. If Hubby were there, well - if it came to that (and I think it just about did), he'd have just picked her up and taken her to the car (situation: I was picking her up from a sleepover and, after staying awhile so I could visit with my friend (Sweetie's friend's mom), I told Sweetie it was time to go. Well, she was not having it. First, she ran in their house and hid. Then, she told me that she was NOT leaving. That she WAS staying for another night. You get the idea.)

And I wasn't about to ask my friend to hoist her up and out of their house. No sense turning Sweetie's friend's mom into a bad guy. No, this was Sweetie and my battle to duke out for ourselves.

So. I definitely had a moment or two of "what do I do now?"

She would not come with me. She would not go say goodbye to her friend (who was obliviously still playing in the backyard.) She was in tears. She had made up her mind what was going to happen. I could leave, and she would be staying. In fact, she tried to insist that I told her it was a 2-night sleep over, which I quickly made sure she knew I never said. "Well, you said it was a sleepover - you didn't say how many nights at all!" True, that. But you got one night, little girl, and that's the end of that.

As my friend checked on her kids in the yard, Sweetie and I glared at each other - me trying not to show her my deep-set concern that, yeah, she really could play it so it was darn near impossible for me to get her in the car as I needed. Sweetie's not dumb. She knows what I can and cannot do, physically. But she also knows that I'm in charge - whether she likes it or not. When it comes down to it, I and her Daddy tell her how it's going to be, and that's that.

And, when it comes down to it, she does as she's told, every time. In the end, she knows she's got no other choice.

(I also realized how highly exhausted she was after staying up late the night before, thus greatly contributing to her bad attitude.)

So, knowing how well even an upset Sweetie, ultimately, can follow the rules, even when she really, really dislikes them, I set in with my feet grounded and my voice raised.

(Sweetie!) We are going now! You are coming with me! Go tell your friend goodbye, thank Mrs. Friend, and get your shoes on. Now!

And... she did.


We said our quick goodbyes (Sweetie even giving her friend's mom a hug of thanks) and we left.

Of course, we didn't talk much on the long trip home. Except for when Sweetie realized about 3 or 4 things she thought she left behind and so we had to go back to get them. "Nope, Mrs. Friend packed it all up for you while you were busy being angry." or "That's okay. I'm seeing Mrs. Friend tomorrow and I'll just have her bring it to me then."

Sweetie started to return to herself as we got closer to home. But, sure enough, as we parked the car and made our way into the house, something else twisted her attitude and she was angry and in tears again. She was sent to her room to rest, as she was clearly exhausted (which Sweetie most certainly denied!).

In the end, we spent most of the rest of the afternoon in separate rooms. But when she was ready, after she lost herself in a Calvin and Hobbes comic book for a couple hours, you guessed it. All was right with the world again. We had a pleasant evening together and she slept well, and long, all night.

Today has been back to our regularly scheduled Sweetie - bright and happy and silly as ever.

All in all, I have to say, I really do love the relationship I have with my daughter. Because she's so confident in herself, because she's so curious and bright and not afraid to try and ask and do. We have a great, open relationship where she can ask me, and Hubby, whatever she wishes. And we do not, usually, blindly demand she follows rules without question. We try to remember to explain our reasoning as much as we can, and she is allowed to question us so that she better understands our rulings.

We three do have a fantastically fun, friendly, adventurous time together. We laugh, play, hang out, explore, learn and love together. But, we are not Sweetie's friends. I am not my daughter's friend. I am her mother. Sweetie doesn't need me to be her friend. No parent should be their child's friend, I feel. They can find those very easily on their own at school and/or church or what have you.

What children need are parents. Someone who will love them unconditionally, who will fight to the death for them, and who will teach them right from wrong. Someone who, like a friend, will get down on the floor and play with their children, and who will listen to their kid's deepest secrets and fears, triumphs and joys - if the kid wants to share, that is.

But someone, in the end, who will tell the child when it's time to go home - and the child knows there's no use fighting back. Mom has spoken. 

Monday, June 11, 2012


Over at my other blog, I often discuss the importance of having, and our happiness with Sweetie's own Lyme literate doctor (LLMD).

Well, I personally wish that I could find a primary care doctor for myself who was spina bifida literate!

Now, as a person, I'm really happy with my current primary care doctor. He's a good guy. But I don't believe he has a terribly extensive grasp on what it means to deal with a patient with spina bifida. Nor do any of his colleagues, I think.

And I don't even go to the doctor terribly often. But when I do, I'd really appreciate it if the medical professional I am dealing with had a better understanding of what I go through, or how I manage my life on a daily basis as a person with spina bifida.

Over the past decade plus I've been:

* sent to the hospital for possible meningitis, when in fact I just had mono.

* told over the phone that there appears to be no reason I need a have a handicapped placard for my car

* had multiple UTI's, usually in groupings (many in a row, then a long clear patch of time, then many in a row, etc....). The nurses and doctors always being extra careful with me about how I will provide a urine sample for them (answer: give me the dang cup and tell me where the bathroom is. No biggie. Geesh!)

Currently I'm in a "frequent UTI" phase. (Sorry if this is TMI about my UTIs). I'm on the same antibiotics I've been prescribed for the same thing within the last few months. It's always worked before. But now? Not so much. I'm not feeling like the infection is being resolved this time.

Hmmm.... You think maybe I may have become resistant to the same antibiotic over and over? That's what I think. I also think a quick call into the doctor to report this, and ask for a switch to a different antibiotic should be all that needs to happen. But, no. It's not that simple. Of course, it can't be that simple. They want me to come into the office again, for an exam. Because the antibiotic they gave me should be able to tackle the bacteria, they say. And it's not. So they need me to come in. Ugh!

I don't know. It just seems to me that a doctor more knowledgeable about spina bifida - and the frequency with which SB patients can and do get UTIs - would be more reasonable about trusting what the SB patient is feeling and agree to just switch the medicine. Simple as that. I swear that's happened for me before in my life. Just give me the right medicine! Really, it's not that far fetched to see how I may now be resistant to this antibiotic I've had over and over again in recent months.

And anyway, I do think, little by little, I am feeling better. Saturday was not good. Sunday, a bit better. Today, better still. And I'm just about half way through my prescribed meds. Maybe it's just taking a bit more time this time around. I don't know.

At any rate... we'll see in the morning how I feel. I really don't want to go in for this exam, nor do I want to rack up my medical bill anymore than it already is (can anyone say Most Awful Insurance Coverage Ever?!) But, on the other hand, it may be good to go in, and get this dealt with appropriately. Ask some questions, get some complaints off my chest. Figure out, in the grander scheme of things, what may be going on.

I'm just saying... it sure would be nice if the doctors I deal with most often had a better, more rounded understanding of the birth defect I live with everyday.

Tuesday, May 22, 2012

The Notebook

(Yes, this post probably is better suited for my other blog. But I feel it's an old subject by now over there. Plus, I thought my Sweetie & Me readers who haven't visited yet over at Our SubLyme Life may appreciate a bit of an update. So here you go...)

As I've talked about here before, and have definitely mentioned a lot over at my other blog lately, Sweetie has some... ahem... difficulty, shall we say, with speaking her true feelings. Everything, as we know, is "great" to her and we will never be the wiser if some less-than-stellar feelings are running around in that head of hers.

Everything's fine, mom! I don't want to talk about it! I don't want a big deal made out of it!

Fine. Be that way. I do suppose it's a whole lot better than the opposite situation of having to deal with a constant complainer. I guess I'm glad we don't have to hear oh so many whines that simply are not worthy of even a tiny peep of complaint.

But.... There is a fine line now, isn't there?

A) We don't think Sweetie tells us near enough about how she's feeling regarding the management of her Lyme. Yeah, sure. Maybe she is really great! That would be great! But at times when she's not acting or looking so peppy, yet she still doesn't say anything, we are left to wonder how she really is.

B) She actually did complain the other night (on the way home from a talk we went to about Lyme Disease, actually) that her mouth hurt. Not her throat. Her mouth. When we asked her why she thought this was, she frustratedly answered, "I don't know! I have Lyme Disease!" To which we quickly scolded her that whatever this was had nothing to do with that at all, we're sure... as if she uses this excuse all the time for whatever problems she's having... and she simply does not. (As it turned out, we reasoned later that her pains stemmed from the site of her recent oral surgery. Whenever she eats some foods - especially rough or citrusy foods - they aggravate the site. End of story.)

So, yeah. It's tough. We want her to keep us posted on what she's going through, but would be angry to have her use Lyme as the reason for every little affliction that happens her way.

And so...

As a commenter over at Our SubLyme Life recently suggested, I decided I'd get Sweetie a little journal of sorts. A place where she could write down how she's feeling if she'd rather not talk about it. But, when I suggested this to her, Sweetie was none too impressed at all. (Funny. You'd think that almost all 9 year old girls out there would be psyched to get a "diary" to start writing down there increasingly personal and private thoughts on different subjects. Nope. Not my Sweetie, anyway.)

But then...

I changed it up a little (and made it actually more like the commenter was saying) and suggested that she and I could share a journal. We'd have a Mother/Daughter Notebook where we could write notes to each other. Just silly little notes if we want, or about things we'd feel more comfortable writing about rather than talking about. Whatever!

To this, Sweetie instantly jumped right on board!

Great! So now, we have exactly this. A Mother/Daughter NOTESbook - a small notebook with 2 pockets on the front - one for notes to me, and one for notes to her. We tear out the paper from within to use as our notepaper and surprise each other every once in awhile when we see that a note is waiting for us.

It's still early but, so far, so good!

I wrote to her first, a little more than a week ago. Then she wrote to me at the end of last week. I'm still waiting for a response to my second note to her. But I've gotta say - I was really quite impressed with the one letter she's written so far! You'd have thought that it would have been a really simple "I love you, Mommy" sort of thing. But no. It was a well written page long note where she mentioned how much she really likes the idea of having a Mother/Daughter sharing notebook. Yay! I really like it too!

I've reminded her, both verbally and through my notes, that we can use this notebook to share quick notes or to talk about things that may be too hard to talk about out loud. I've written to her that Daddy and I can help her to feel the best she can if we know what she's feeling, so are frustrated sometimes when she doesn't speak to us about these things. I also acknowledged that it must be frustrating to her to have to live with Lyme Disease - taking the medicines she does, changing her diet so drastically, and visiting the doctor as often as she has to. I hope our notebook will help her to feel more comfortable about sharing things with me she'd rather not admit out loud.

Also, as she gets older and creeps ever so much closer to her teenaged years, I'm hoping we can continue on with our notebook, maintaining a strong mother/daughter bond throughout some potentially rocky years. Besides from my immediate hope of having her find some comfort in the written word when it comes to how she's feeling regarding her Lyme, I see great potential for this little notebook to keep us connected throughout the potentially tricky terrain of being a teenager.

For now, I look forward to reading whatever it is she wishes to share with me. Silly love notes, beautiful drawings, funny jokes, or deeply felt feelings. Whatever it may be, I'm happy. Just one more way of letting her know that I'm here for her, no matter what, no matter how.

Tuesday, May 01, 2012

No More Ups and Downs

Happy May! My birthday month! My favorite month! Yay!

But can I just tell you how much I'm looking forward to June 1st this year? So much!

I don't know. It may be just the fact that we'll be moving to a one-floor living situation at the end of this month, but it seems to me that it's becoming increasingly difficult for me to climb our stairs every day. When we started living here, and up until very recently, climbing our stairs has never been an "issue" I really ever thought much about. I can climb stairs! Who cares that the only bathroom is on the 2nd floor! I can do it! I'm not crippled!

Now? Well... yeah. I kind of am crippled, aren't I? I mean, I do have Spina Bifida, wear short legged braces and use a walking stick to help me with speed and balance when I'm out and about. Not to mention my usual back pain. So, yeah. The stairs are a pain. I notice I'm taking them slower and my body feels tighter and more "ouchy" as I climb. 

I remember at our old house, having guests - older, more "crippled" people than me - offer to go upstairs to retrieve something if I needed to have it. No! Don't be silly! I can do it! And I did. No problem at all. Or being out and noting that I could take the elevator or the stairs to where I needed to go. Sometimes I took the elevator, sometimes the stairs, depending on what would be quicker - not based on how I felt. Because, Geez! I can do stairs! It's okay! 

Now... we were at Sweetie's school a couple weeks ago, having to meet with some school staff, and the secretary asked me if I'd like to take the elevator up the 3 flights of stairs to the meeting location. There's an elevator?! Sure, that would be great! (Little did I know that there was a key involved, and the secretary had to come with us, but she had to wait for the other secretary to come back so the office wasn't left empty, yada yada, yada... Geez! Never mind! I can do the stairs. It's okay!) (Long story - in the end, the meeting came to us, in the school foyer. Geez!)

And I can't wait to not have to climb stairs everyday in my own home. 

I'm just sayin'... stairs and me are becoming much more distant acquaintances than the friendly friends we used to be.

So, bring on the move! Sure, we'll have stairs in the house. But I will rarely be required to climb them. Only Sweetie's play room and the guest room will be up there. Sweetie will get her workout, and I'm sure she'll want me to come up there every once in awhile to see what she's playing at/play with her. That is manageable. Sounds good to me. 

I'm a one floor girl now, and that's okay. I knew the day would come. 

I just hope my body can wait out these last few weeks. We're almost there... we're almost home....

Saturday, April 21, 2012

Pain Management

Me: Sweetie, are you stuffy? 
Sweetie: No! 
Hubby: Oh, my feet, Amy. Oh, my back. Oh, my head!
Me: ...  (hobbles around, winces as I get up from sitting, takes some meds if pains are too bad and waits in silence as they tackle the problem area).
Pain and illness. We all have our own way of dealing with it. Hubby speaks of his often to me. Sweetie practically takes offense if you suggest to her she's anything but "great" in every way. And I - perhaps the person who's most in any sort of regular physical pain here? Maybe? I don't know? - just deal with it in relative silence and carry on with life.
None of these coping mechanisms are ideal, of course. Hubby's complaints no longer strike me as anything more than just words. And I’m frustrated that, for some reason or another, Sweetie seems to think it's an absolute weakness to be sick or pained in any way. Or, when I'm really concerned about her, I imagine that she perhaps feels not-so-hot all the time, so that she's used to it by now and it's just the way it is. She no longer remembers what it's like to feel truly great, so what she regularly feels is "great" to her, even though I perceive her to be a little out of sorts.
Or maybe she's fine. I don't know. She's a mystery wrapped in an enigma who likes to tell riddles, that one.
And I, well... when I do speak up with a complaint (not so much a complaint, really. Just an acknowledgement that I'm feeling a little more worse for wear than usual), or Hubby recognizes in me that something hurts... I've been told I’m being a martyr. Bucking up and dealing with my problems, but not actively doing anything to take care of them, and moving on in a less than ideal physical state, when I don't have to.
Ah, I see. Sweetie does take after me, doesn't she? The difference? I'll admit to aches and pains if asked. Sweetie won't. When asked, in fact, Sweetie will get exasperated with you (okay, me), roll her eyes, and tell you "I'm fine!" Literally, it's as if she thinks it's some sort of personal defeat to admit illness or pain.
Not that she won't tell us, sometimes, when she's feeling bad. She tells us on occasion when she has a slight headache. If she feels funny in the belly, like she's really going to be sick, of course she tells us. But for the average coldy, sniffly, or regular Lyme Disease-y days... eh. She's fine, mom! Great! Never better!
As for Hubby and me... I think Hubby is like a lot of Hubbies out there. He doesn't complain at all to the average person. He just complains to me. Perhaps he could find a way to manage better on his own, and move on. Whereas I, I'm sure, really should do more to help myself, maybe even let others know more often that it hurts me to do this or that, rather than sit in silent pain as often as I do. I have easy access to a chiropractor, but I don't get adjusted because we can't afford it. If I get really hypochondriacal about my issues (which, believe me, I can... I just don't tell anyone my worries), I know I really should make myself a doctor's appointment and get some tests done. But then, we can't afford that either... even more so... so I don't. So I live with things as is, which isn't great.
And Sweetie? She probably has the best observation/coping skills of us all, when it comes down to it. She probably hears Hubby regularly mentioning his pains, and how easily I can ignore him because I hear the same things from him all the time... and knows that's not quite right. And she probably sees me wincing and silently "dealing" with my issues... and she knows that's not quite right either. So she adopts her status of usual greatness, not allowing herself to be "weak" and sick, and only lets us know when things really take a turn for the worse for her.
To get even more deep with it... maybe Sweetie perceives that my life in general is tougher physically than anyone else she knows, yet I rarely complain. So what right does she have, she may feel, to mention any of her little problems?
As I said, none of our ways is the proper way to manage one's own health. We each need to work on things. For me, I know it would do me well to remember more often that not only am I Hubby’s help-mate, but he is mine. We are here for each other, even through - especially through - sickness and pain. When he tells me about his aches and pains, I can possibly help him through some of that. And, if only I told him more often about mine, perhaps I’d feel just a little bit better myself because of the care he can offer me. 
I don't know that I have any real sort of point to this post. It’s all just something I wanted to write out to see if, through the writing process, I could make some heads and tails of the situation. Why we each are the way we are. Usually, that happens for me - writing makes everything more clear. This time, though? Not so much. It's still a murky mess of random observations.
Oh well. So, this one may have been a waste of time. And I've been sitting here for quite awhile writing it all. The more I sit in one place, the more my back hurts when I finally get up.
I guess that's what I get for writing about pain. More pain.

Saturday, April 14, 2012

No, Seriously... We're Moving On...

Hey! So did I tell you guys we're moving? No? Well, we are. We're moving! Yay!

Where, you ask? Funny answer...

Right next door.

Yup. It was an interesting turn of events that I needn't bore you with, but when our neighbor/friend/Sweetie's Destination Imagination coach told us she's moving a few towns north and her house was available, we jumped at the chance to move right in.

Well, "move right in" at the very end of May. But still... it's coming fast and furious enough!

The big impetus to get out of our current rental house is the fact that Sweetie's bedroom (if you can even call it that) is uber-tiny. Big enough for her twin bed and dresser and little else. It's really a bed annex, actually. Didn't even have a door on it when we moved in, and now only sports one of those accordion style doors. In our new place, not only will Sweetie have a bedroom twice the size of her current one, but a separate playroom to boot. PLUS we'll have even one more "extra" space, which will become the study of sorts (part art room/guest room/study/catch-all room).

Hubby is also super excited to be gaining some extra land. Here on our current plot we have almost literally no space at all. A teeny front "yard" and no back or side yard to speak of. At the new house, right next door, we are gaining not only a very nice sized garden (yay!) but a back yard space to play and relax in as well. Our neighbor/soon-to-be landlady has always been quite the gardener, and Hubby is itching to get back to playing in the dirt, like he did at our old house, and grow us some yummy fruits and veggies to enjoy. Can't wait!

Another great thing, especially for me, is that we will now be "one-floor living." Technically, the master bedroom in the new house is upstairs. But the one bathroom in the house is downstairs (opposite of our situation now.) It's not often that I need the bathroom in the middle of the night, but when I do - I do. And I can't have it down a flight of stairs from where I'm sleeping. I can walk without my braces, but not easily, or safely. Especially in the dark while I'm super sleepy! And so, we'll be turning what is currently the living room of the new house into our master bedroom. So the master upstairs, now becomes the extra room. And the second bedroom upstairs, the playroom (what will be Sweetie's bedroom is also on the main floor - used to be the bedroom of our neighbor's daughter.)

Not to fret! There's a beautiful, bright, 4-season sunroom downstairs that will become our main living area. We haven't lost a thing!

And I'm gaining a dishwasher!!! This may be the best news of it ALL!!!

We're already packing up boxes and just alerted our current landlords today of our intentions to vacate their premises. This is real, folks! Anyone free on Memorial Day weekend who wants to help us with our Bucket Brigade style moving method is more than welcome to come on over and heave boxes.

On a more serious note... we always figured that, once we were ready to leave this house, we'd leave this town as well. Haven't heard the best of things about the teachers in the upper elementary grades and secondary school in town, you see. We want to see Sweetie continue to thrive in school, and get as many positive educational opportunities as possible as she grows, and we just weren't sure this town offers all that we want for her academically. Still not sure. Actually, no... we know for a fact that this small mill town is NOT the best place to send a bright, curious, enthusiastic, self-motivating, school-loving Sweetie. But... we also know that our bright, curious, enthusiastic, self-motivating, school-loving Sweetie WILL thrive if we remain 100% behind her and 100% involved in her education, no matter where we live or where she goes to school. She'll keep with D.I., which she loves, and that alone, I know, will encourage her to continue her creative, quick-thinking problem solving ways. And we will be behind her throughout her school career to push her and challenge her as her teachers do, or beyond what her teachers do - whichever the case may be. Basically, Sweetie will do just fine and prove her smarts no matter where she is.

And we do like this small, New England town. And we do like our neighborhood. This opportunity to move right next door, to the bigger house with the bigger yard is just perfect for us.

Yes, we're moving on, indeed. Onward and upward, here we go...

Sunday, April 08, 2012

Moving On...

Hi there! This is just a quick post to let you know about Hubby and my new blog - Our SubLyme Life. Now that we have an official diagnosis for Sweetie, we thought it would be a good idea to separate two main blog themes into two different blogs.

So, for continued coverage of all things Lyme related, you'll have to scoot on over to our new digs. Here, at Spina Bifida Moms, I plan to get back to our regularly scheduled programming.

Of course, I'm sure I won't be able to totally keep any discussion of Sweetie's progression with her Lyme diagnosis out of what I write here. In fact, I just published a new post at Our SubLyme Life that really could have been posted here instead. But for the most part, I will attempt to put appropriate posts on appropriate blogs.

Join me for our continued ride, here and there, won't you?

Friday, March 30, 2012


So, it's been awhile since I last wrote. We've been busy. Switching Sweetie to a new (Lyme literate) doctor. Getting new blood work tested. Waiting for results. Keeping our optimism high but our outlook realistic.

And now, we have our definitive answer.

Sweetie does indeed have late stage (chronic) Lyme disease.

The blood test (the Western Blot Lyme test) Sweetie recently had was different than her first Lyme test last June. The Western Blot test, in a nut shell and as I understand it, shows both the history of the disease and the current state of things. So, whereas Sweetie's former doctor's told me that she will always test positive for Lyme now that she's had it because the antibodies are in her system, Sweetie's new doctor said that with the Western Blot Method, it is possible to get a clearer look at things and properly determine if she merely has the antibodies in her system, or the Lyme is still actually active.

Let me tell ya, from the look of her results and as the doctor explained it to me, Sweetie's current state of Lyme is "lit up like a Christmas tree." There was more than enough evidential support to say that her Lyme is active in the late stage phase.

I hate to say I told you so (and in this case I really mean that), but...

And so... now we have Sweetie on high-test antibiotics for "at least" two months. Once the course of antibiotics is through, then she will start on a really long term course of herbal supplements. We started her on the antibiotics last night. Now, we're waiting for the Herxing to begin.

(Little did we know, when Sweetie's first full day on antibiotics last year caused her to feel just miserably flu-like, that that was actually a sign then that her Lyme was already in the late stage phase. What amazing things you learn when you speak with doctors who are knowledgeable in the areas you need them to be!)

Bottom line... that tick we found on her at the end of May last year? That wasn't "the" tick that gave her Lyme. No, the culprit tick was an earlier one we missed altogether. Thus explaining why her 6 weeks on antibiotics didn't kill the Lyme off. It was already too late. She may have had a brief respite from the symptoms, but she could not get rid of the disease.

Nor, of course, can she kill the Lyme off now. It's too late. Her months and months of treatment now are all about managing her health. All about warding off the symptoms of Lyme from cropping into her life with any regularity. Her regular vomiting she's experienced over the last several months? Definitely a symptom of Lyme. But this disease is migratory in nature, so it's vomiting every 4-6 weeks or so now, but that could change to bad headaches every once in awhile, or joint pain, or fatigue, or whatever. It is these symptoms that we are trying to keep away for as long as possible.

I wonder what life will be like once her long course of medications is through. Perhaps enough of the Lyme will have been rid from her system by then so that there is little for the bad bacteria to grow on when it wants to regenerate itself again (every month or so - Lyme is cyclical, thus Sweetie's frequent vomiting so far and her monthly Herxing we've been warned will happen while she's on the antibiotics.) I don't know. I'm still learning. Honestly, I don't know why long term medication won't kill it off. Maybe it will?? But then again, I do know Lyme is very tricky, able to put up a protective "shell" around its bacteria that is resistant to antibiotics. So... as I asked her doctor, are we simply managing at this point, or do we still have a shot at killing it off? "Managing" was her quick, assured answer. We are managing.

So. We treat. We wait. We change her diet to a combo macrobiotics/whole foods/GAPS to keep her body as healthy as possible as it deals with all this. We hope for the best and we wait for some occasional days when she may feel her worst.

As I said, last night I gave her her first dose of antibiotics. Medication I know, in short order, will make her feel temporarily miserable. As a mother, it wasn't my most favorite moment.

But, as a mother, I will do anything, as will Hubby, to help Sweetie live the best life she can possibly live while navigating this scary and rocky new road we now travel together.