Friday, March 10, 2017

How Do You Solve a Problem Like...?




What problem, indeed?

I've been asking myself this question lately a lot. And, specifically, I was mulling this very query the other night at the call center where I work as a Cash Acceleration Representative (a fancy way to say I call people who haven't paid on their medical bills to offer them payment plan or financial aid options.) As awful a job as it may sound, I really do love it. I don't like the evening hours work schedule, keeping me away from Hubby and Sweetie. But I do enjoy helping people and making them see there is another way to get past these particular financial issues - ways that will benefit both them and the hospital. That moment when an angry person actually stops to hear what I'm saying and is both surprised and pleased to learn about the payment plan or financial aid option, and they actually end up genuinely thanking me for giving them a call! Makes my day every time. There's no better feeling than knowing you've helped someone who feels like they are hopelessly drowning, realize that you have a life jacket just their size they can put on. Love it!

But anyway... yes... I was thinking about this video (above) Hubby and I recently saw, and this very question of "What problem do you want to solve?", and generally just feeling a bit fitful about life, when all of a sudden it hit me. Like a ton of bricks, as the saying goes.

I want to advocate for adults with Spina Bifida. More specifically, for adult women (and men) with Spina Bifida who want to have children.

Still to this day - what? nearly 12 years from when I started this blog - if you search for "parents with Spina Bifida" on the internet, you nearly only get resources about being a parent who is raising a child with Spina Bifida. Granted, if you search simply for "adults with Spina Bifida" you do, in fact, find a plethora of websites and articles to explore that at least, in part, discuss what it's like to be an adult with this birth defect. However, in taking a quick look at some of those resources, very few discuss pregnancy and/or parenthood as a viable option for such an adult to consider. In fact, the Spina Bifida Association website itself, on the page dedicated to Adults, has several sub pages to click on for the curious adult with SB and one of these categories is Family Planning. Now, you'd think that that page would be all about the steps an adult with SB needs to consider and play out if they and their partner are seriously considering starting a family. Hah! You would be entirely wrong, my friend! No, the Family Planning section on the website of this national organization dedicated to supporting and educating people and families of people with Spina Bifida is directed towards the healthy adult woman as she finds herself pregnant with a child with Spina Bifida, what she needs to know about the birth defect, and how to proceed with the pregnancy, as well as how to care for the child after birth.

I mean, I just can't even!

(Full disclosure: another sub page that you can choose to explore is titled Prenatal Care and Issues and that page is for the woman with Spina Bifida caring for both herself and her unborn child as she works her way through pregnancy, delivery and caring for the newborn at home. So, yay. They got some useful info out there. Good for them.)

So! I want to change this! This is the problem I want to work on and solve! There is entirely too little information out there for individuals with Spina Bifida who want to make a real life for themselves. Just sit down, do your exercises, go to the doctor, and get through your simple, inconvenient, different life the best you can. That's pretty much what I feel the message to adults with Spina Bifida (and other disabilities) currently is, and it's awful. Everyone is entitled to the best life they can lead! If someone with Spina Bifida wants to have a family - they should be able to do it! And, yes, for some it honestly may not be the wisest choice or even medically possible to endure a pregnancy. But there are other options! Other, "healthy" people who can't have children still can find a way to bring children into their lives, either through adoption, surrogacy, etc. So too should be the case for a disabled person if this is what they really want and they prove themselves able and qualified (just like a "healthy" person has to go through certain hoops when adopting, etc.)

So. I came home from work that night and told Hubby that I had pinned down the problem I want to solve. When I told him, he was curiously interested, reminding me, "That's what you've always said. That's the reason you started your blog." ~ "Well, it's still true!" Advocacy is still just as desperately needed as ever, and I want to find out - beyond "just" my blog - what concrete positions are out there, what career fields, what volunteer opportunities, what skills are needed and how do I acquire or improve them, to aid me on my solution to this problem. Where do I start?

As for my current skills and interests, I think they all work very nicely indeed with establishing a good start on this path towards patient advocacy. I write well and love to do it. For as quiet and introverted as I am, professionally speaking I am a great "people person." I love the whole world of education and have loved tutoring kids one-on-one over the years, as well as subbing at Sweetie's new school. I really love those particular kids, their drive and determination, their individuality, and their energy and creativity. I'm extremely interested in helping others discover their best selves. In short, I love helping people and I have at least the beginning skills to assist people with seeing their true potential and working with them on concrete goals to get where they want to be.

And as for my blog - this blog... I stated last night to both Hubby and Sweetie that I started this blog as a means for adults with Spina Bifida to know that it is possible to have children if they want, and to take a look at my particular struggles and triumphs with parenting as a disabled person. Yet in actuality, it's really turned into "just another mom blog." To which Hubby looked at me for a moment, until I followed up with, "...and that's the point, isn't it." I'm "just" a mom. I'm no special thing. I'm no amazing woman who heroically did something I wasn't supposed to do. I'm certainly no miracle worker. But Hubby and I did see through a goal for which we didn't have much information, nor with real life super knowledgable support systems in place. Sure, our doctors were excited and helpful and willing to learn along with us, and certainly knowledgable enough to make us feel secure. But they, by and large, honestly did not have the real world history of experience in dealing with "people like me" as we began our journey into and through pregnancy and childbirth. No information out there - we just knew we wanted a family and we went for it, with the support of awesome medical professionals who cared for us well and learned a thing or two along the way by working with and for us.

Adults with Spina Bifida can have children, if that's what they want. One way or another, they should see their dreams realized - whatever they may be! There are so many individuals with disabilities out there who want to be "just a mom" or "just a dad."  If I have anything to say about it, I will help them know it's possible and guide them toward the necessary resources to make sure their experience is as healthy, responsible, and smooth as possible.

Problem, consider yourself challenged.


Tuesday, January 03, 2017

I Could Go On...

Well, Sweetie - this one has taken me awhile. Your big day was 2 weeks ago today and I haven't yet written you a birthday post. But I think I can do it now. I'll give it a go, anyway.

It's easy enough to start off by wishing you a happy 14th birthday. Just like every year, I'm amazed to see the time rush by. No longer a new teen, you are now clearly in it, as much as you yourself may wish to deny it.

I can't remember where we were or who we were talking to recently - maybe your great grandfather? - when we brought up your recent birthday and your newly-achieved 14 years. "A real teenager" I think I said, to which you quietly but defiantly answered, "No I'm not." Now, I know you know how old you are and that, logically and sequentially, that does, in fact put you in your teen years. But I think what you may have been getting at with your almost throwaway comment was that you do not see yourself, or want to be seen as, a stereotypical teen. A category of person who, not altogether rightly, tends to get a bum rap as all things apathetic, uncaring, crude, and... I could go on. Because you are none of these things and, more importantly, you don't see yourself as possessing any of these typically unsavory teenage characteristics. You are, and you pride yourself on being, caring and kind, intelligent, unique, inquisitive, confident, loving, humble and... I could go on.

But you also know better than to let people categorize you or anyone into any particular stereotype just because of your... anything! So snap out of it, Sweetie! You are you and you are - as always - great, no matter your age or anything else. You know better and you know how awesome it is to be you. Go out there and show those who may unfortunately try to categorize you that you don't fit where they are trying to put you. You make your own category and enjoy being with others who support who you are, while you love and support them. Daddy and I know you and we love who you are and we are proud of your choices, beliefs, ideals, and... I could go on. Make your own way, bring along friends who are also challenging (for the better) other's ideas of what teens are typically like, and have a blast on the journey. Your nerdy, amazing, unique, thoughtful, loving self makes us proud to watch you lead and grow.

And, my, how you've grown this year, Sweetie, in so many different ways. Over this Christmas break I happened to see a video I took just one year ago at Christmas time of you and I enjoying a "coffee and coloring" (and hot chocolate) date at our favorite coffee shop hangout. Oh my goodness, how different you looked! A small girl compared to the beautiful young woman you have become. You are now undeniably taller than me (and you are begrudgingly getting used to that fact.) Your sense of style has become your own funky thing, complete with an indigo streak of hair at the longest section of your asymmetrical haircut, and your vocabulary and general manner of communication has vastly improved in the shortest amount of time. Seriously - Daddy and I noticed an incredible improvement in your communication style literally just 2 days after you started at your new school (a school which you absolutely love, by the way - a school you feel so challenged by, comfortable at, and have just settled into both socially and academically so beautifully and with such amazing grace and gusto). Anyway. Yes. You are no longer that little girl who sat across from me at the coffee shop one year ago. But we do still have our coffee and coloring dates from time to time, which I love and I know you do as well. I love how much we love hanging out, enjoying each other's company, having quiet fun together. May it continue always.

I could go on and on about all the different ways you really are a great person. But I'm satisfied enough to know that you know how very much Daddy and I love you, support you, and are proud of you in so many different ways. Yes, this post has been difficult for me to write because - I don't know - maybe I feel like, because you do already know where you stand with us, that there's just not much more to say. Nothing much more, at least, than what I've already written to you in any of my other birthday posts to you throughout the years. Even with all your personal changes and growth and everything unique about this particular year... the nuts and bolts of it all remain absolutely the same. You are you. You are great. You are loved.

I will say, though, that for any of the things about you I wish would be just a little different, a little more "with it", a little more grown up or whatever the case may be... well, I could add all that in to this post, as I tended to have done in years past as well as countless other blog posts since I began writing here. But, you know what? It's no one else's business. No one else needs to know the particulars about what I worry about for you, what I wish you'd do better, what I want you to learn about and apply better to your life. You know. Daddy and I have talks with you all the time on all sorts of self-bettering topics. That's our business and not anything that needs to be addressed in a public forum such as this. Suffice it to say that - as much as I go on and on about how great you are and how much pride you bring us everyday - there are things for you to work on. Heck, there are things for Daddy and I to work on! Everyone on the face of this earth has areas to work on, and if someone says they don't - they are lying. No one is perfect. Everyone has lots of room for growth and improvement. Especially teenagers (yes, in this case I'm categorizing all together.) Don't fight the lessons, Sweetie. Know they come from a place of love. Know that - as always - it's behaviors, attitudes and habits we are most concerned about improving, changing, or taking a closer look at. You can do better. We all can do better. We don't expect perfection from you or anyone. We just expect a general sense of improvement and positive growth - and we see that in you all the time.

We know you are capable of all great things, getting better and better each day. Just keep moving forward, proving this to yourself and you'll make us, and yourself, happy for a lifetime. Happy Birthday, Sweetie - we love you. May the year ahead bring you great joy, happiness, love, accomplishment, pride - I could go on.






Wednesday, November 09, 2016

Day One

From day one we have raised her to believe in herself and know that - without restriction - she is loved for all she is, all she will become, and all she will do.

From day one, we have not just stressed to her the understanding that all lives matter, but have truly and intrinsically lived this message and encouraged her to live it as well.

From day one, she's understood the strength found in being herself, loving herself, and she celebrates - enthusiastically - that each and every one of us has the ability to hold this same personal strength.

From day one, she has known others who are different - myself primary among them - and are just as strong, just as important, as she is and aims to always be.

From day one, we have instilled in her our UU principals, first and simply through our actions and beliefs, and secondly through our church community whom we've grown to love so much.

From day one, she's known that she is no more better or deserving than anyone else. Everyone has a seat at our table. (same message as previously mentioned but - it bears repeating, no?)

From day one, she has loved without limit. She knows, above all else, that "love is love is love is love is love is love is love is love."

From day one, we have fostered in her a deep love and respect for the earth she lives on and a great responsibility to take care of this home.

From day one, she has been curious about everything and her curiosity has been encouraged to grow, to reach, to examine, to believe.

From day one, her imagination has been made limitless, her ability to think and dream and create made to run deep and wide.

From day one, she's known, without a doubt, that the magic is inside of her. Her ability to change the world is there to be developed and encouraged at her core, just as it is in each and everyone else in the ways that they hold most personally true.

She goes to an incredible school where intelligence is revered. Where kids talk out of turn not about gossip and spite and fluff, but about homework and classes, friendships and futures. Where everyone is the same because they each are so awesomely different. Where bullying is at a minimum because this individuality is so much the norm. Where kids are nurtured as they figure out just who they are - where she is comfortable to delve into the depths of that question for herself. And she knows that absolutely any answer will be accepted - by her friends, by us - as long as she is true to herself and strives to always be as great and good as she can possibly be, to herself and others.

And now - she's scared. Her friends are scared. We are scared. Scared of a president-elect who is a racist, sexist, bigoted, prejudiced, homophobic, bully, sexual predator and liar. Someone who will seemingly work to destroy the rights of everyone whom we've taught her is worthy of respect, love and compassion. Including people she personally knows, loves, and respects. Including her friends. Including me. Including herself.

How can this be? Just - how?

I want to cry. I want to be sick. I want to disassociate myself from this country in any way that I possibly can.

But most of all, I want the next 4 years to not play out as terribly as I fear they may. I want my daughter to feel comfortable in the world in which she lives. I want her and her friends and everyone she holds in her heart to not hide in fear of how they live, what they believe, who they love, and what they look like. I want not only tolerance. Not only acceptance. I want love. I want peace. I do want a great America, and a great world. But absolutely not at the cost of everything our president-elect stands to destroy. No - these are the very qualities we need to strengthen and bolster, not rip away in hatred and disgust.

I, for one, am on a mission. A mission to keep in tact all that I love about my country. All that I want my daughter to believe about the place she lives and, indeed, about herself.

Day one starts again, and it starts with action. It starts with - continues with - love. It starts right here. Let's go.

Saturday, August 06, 2016

Just a Little Thing...

That's right. I'm taking a moment in the midst of my/our summer-of-theater craziness to let y'all know just a little thing...

Drumroll please...

Sweetie got into her dream school!!!

The specialized STEM-based charter school I've mentioned before? The one that's highly rated in not only our state, but the entire country? The one where the admission process is purely lottery-based and - as we found out back in early spring - Sweetie did NOT get into? Yeah - that one!

The email came just over a week ago. I was the only one home to receive this and I could hardly believe my eyes. I immediately called Hubby and together we were in shock. How did she go from the far back end of the pack in a grouping where only 3 incoming 8th graders were admitted, to now being asked to attend?! And what was Sweetie going to think of this? Originally, this was the school for her, in her eyes, and she was super excited to apply. However, knowing that she did not end up getting in, she pretty well accepted the fate, knew that she'd try again for 9th grade, and in the meantime would be happy still to be at her home school with her good friends. Still a win! But now! This complete 180! Would she be happy? Would she be resistant, since she had no notice and no chance to say a proper goodbye to her current school friends? Just WWSD?!

Alas, we wouldn't know for several hours. At the time, Sweetie was at play practice for one show, followed immediately by a matinee performance of the other show she was in (which my mom and I attended, both knowing full well this exciting turn of events, but both swearing that we'd keep this info to ourselves for the time being). I happened to see Sweetie, in fact, a few times before she performed, but I was not about to tell her anything this profound right then... she needed to focus on the task at hand and I didn't want to give her any distractions.

But then, of course, I had to go off to my evening job, which doesn't get me home until close to 8:30 pm. Hubby promised that he wouldn't tell her either, until I was home. This was a family moment and a family decision. Of course, Hubby and I already knew that Sweetie pretty much had to accept the offer and go to this new school. Again, we just weren't quite sure what her reaction would be. We, as her parents, could always make her go, whether she wanted to or not. But - no... at this school, with this work load, and this high standard placed on academics... we knew Sweetie had to be fully and happily onboard with switching her education to this new environment.

And - long story short(er) - she was/is fully and happily onboard! Her only slightly negative/sad comment when we told her, after settling from the shock of it a bit, was that she didn't get to say goodbye to her friends at school. Not that she wouldn't switch because she didn't get proper closure - but just that it is sad it didn't happen for her. Yes, Sweetie. That is sad. But we will work hard to keep you in touch with and able to get together with your in-town friends as much as we possibly can. Starting with a bonfire at the end of the summer for you and all your friends from school and your after school program, and also inviting your bestie along with us when we go away for the weekend in September. Friendships are important, and we know you'll make many new friends at your new school! But maintaining those you have is equally as important and we will help you in any way we can to make sure those connections you've made are not lost (or only now maintained through technology and social media.)

So! Sweetie is changing schools! To a great school! Dedicated to the subjects she loves and wishes to pursue further. I've always driven her to school anyway, and this new school starts later than our town school does. So we'll basically have to leave in the morning at the same time we always have. But her new school gets out later. That may be trickier to manage, but I will have time to pick her up before my evening work, and we have friends and family and a school carpool system that can help us as we see the need arise.

Yeah. Just one little thing. Changing schools. Kids often do it anyway when moving up from Middle to High School. Sweetie's just doing it 1 year earlier. The rest of our lives go on unchanged...

...Or do they?

Hubby and I have said since the day Sweetie applied that, if she were to get into this school, that would give us an easy out of our current living situation. We are not fans of our current living situation. We moved here in a hurry and took what we could quickly find. It's been fine. But, no, we are not fans. And kids attending this new school of Sweetie's can live anywhere in the state! So, if she got in, we would easily have an excuse to move without any upheaval to her schooling. Plus, if we moved further south just a bit, Hubby would be that much closer to where he most often travels for work. That would put us closer to Sweetie's new school, and closer to my evening job's location too. Huh. And looky there! Sweetie did get into this school! Time to start looking for new digs!

Moving would not only be good for being closer to our most-often-travelled-to destinations, but would also - theoretically - give us more space to spread out in. Sweetie is going to have a lot more homework than she is used to. This new school of hers is intense in their academics and promises students about 4 hours+ of homework each night. Where we currently live is not conducive to allowing Sweetie her own space for working, while also allowing Hubby and I to go on with what we want or need to do for the evening. Basically, we are all together all the time in our current, tiny living quarters. If Sweetie has homework, she is at the dining room table, which is right in the same room as the living room and TV where Hubby and I are. Maybe we want to watch something! Maybe we want to talk! But Sweetie is doing her work and needs quiet. And so, it's a quiet night for all of us. That situation has got to change. Moving, to the right place of course, would allow for this.

Of course, in our current situation, Sweetie could just go up to her room to do her work. And, in fact, that is exactly what she is going to have to do. But that's not entirely ideal either. I actually want to be able to keep tabs on her as she works, so I see she's working and not becoming distracted. Plus, if she needs access to a computer, as I imagine she often will - well, then she has to use our one and only family computer, which is in our living room. Perhaps if we moved we could find a better location for the computer that puts it in its own separate space, but yet is accessible enough on a regular basis for all our use. At any rate - our current living situation is entirely too small and cramped for we three.

Not to mention, if Sweetie for some reason decides that this new school is not for her in the end, we prefer to be in a town that has a much better school than where we currently live. A town where their STEM program is impressive and challenging. I know other towns close by to where we currently are that fit this bill. But, we have to live in such a town for Sweetie to fall back on that school system. Put another CHECK in the "reasons we have to move" column!

So, new school = moving. Not immediately or anything. Definitely a casual sort of looking around, though. On our own time, this time. That's it. Or?...

You know that evening job I've been mentioning? Well, with Sweetie now about to embark on a much tougher school than she's used to, I'm feeling more than ever that it would be beneficial for me to be available to her in the evenings. As it stands, she will have to often fend for herself until her dad gets home - which is also usually pretty late. But if she had a parent home more regularly in the after school/evening hours, I think that would be best. Not that I nor Hubby would be able to actually help her with her homework. We are decidedly not math and science people! But just to be there. To listen when she needs an ear, to guide where we can guide, and to provide a regular, at home routine for her after school working hours that are not interrupted by being picked up from a grandparents' house or some such place where she's been instead. Yeah. Not working at my evening job would be great.

But - we desperately need the money. I'd have to replace the job with some other employment. And, of course, that other employment could make life difficult to impossible to continue the other jobs I have and love. And, you know, for as much as I don't love working evenings, I do really like this job, as well as the other jobs I have. And they all currently fit very well together and allow me a great daytime schedule where I'm easily accessible to Sweetie if needed. So, there's that. Looking for a new job would probably be good for me to do, but looking for a job doesn't mean one will come along quickly. Or that I'd even be hired. And, what I've got now really isn't so bad, in the grand scheme of things. But... it's all just something to think about. Just one more little thing...

And, of course, Sweetie is going to have to take on a whole new focus on school. Mind you, she's always been a good student. She never fusses about getting right to her homework after school. And - whatever the subject - she does her best to do her best. And it's paid off! She usually makes straight A's, if not maybe sprinkled with a few B+'s or B's. She made the National Junior Honor Society last year. She's a good kid with a good head on shoulders for academics, and is comfortable with her position as a top kid - grade-wise - in her "small pond" of a town school. But now she's moving on to where she needs to realize it's going to take a lot more effort to reach that same status. And to get somewhat lesser grades in this new "pond" will be just as impressive as what she's been doing all along. It will take a lot more effort to get those somewhat lesser grades. But Sweetie will do okay. She really does view her school work like a job. Never questioning or complaining that it's got to get done, but hunkering down and just doing it, to the best of her abilities. I'm sure that will continue on at this new school.

She will also have to join a new Destination Imagination team! When we reminded her of this - pointing out that she wouldn't be able to stick with the team she's been with since 2nd grade (granted, only one other girl on that team - one of Sweetie's good friends - has been with her all those years on this team. Other members switching in and out all the time), we though she'd be sad. And she was, a little. But mostly she was excited to join a team that is - theoretically - more focused and bonded and ready to tackle the more science-based challenges. Sweetie's team started off doing the Engineering challenge way back when, and they did pretty well with it. But then the team and the team dynamics changed and they moved more towards the arts based challenges. I think - we all think - Sweetie should get back into the more science-y challenges. And, because all of them require creativity and theatrics to do well, Sweetie assures us that she can help her new "all science-y" team improve their artistic component of the challenge, what with her love of and talent for art, and her experience in theater. Yes, you can, Sweetie! I'm excited to see how far you and your new team can go!

One more thing - Sweetie's new school does not offer Physical Education classes, but they require them. Just the minimum required by the state, so it's not much, but it's something. So, to that end, Sweetie will have to engage in some sort of physical education along the way before graduating. This is a new concept to her. Well, of course she's used to gym in school, but she's always disliked it and never felt comfortable there. She's just not a sporty type. But now, she'll have to pick some sort of physical class or team to be a part of to earn the credit. We are thinking martial arts. It would do her a world of good, we think, and Sweetie actually seems interested in and a bit excited about it. But - it can wait, for now. For now, she needs to just settle into the school and get her bearings on the academics and the overall school environment. Extra curricular will come. She does plan on being a part of DI right away, so that is enough. For now. Even acting will most likely have to take a back seat for right now (we usually let her do the fall musical at the local Boys and Girls Club, since it's usually done and over with before DI kicks in). But - we'll see. I know her new school has an active drama club. Perhaps that is something she can get involved in along the way.

So, yeah. Just one little thing. One great "little" thing! That's having a big impact on not just Sweetie's life, but all of our lives.

One thing's for sure, though. It's going to be one heck of an adventure! So excited to take this ride with her and see where it lands not only Sweetie, but all of us.

Let the ride begin!

Tuesday, July 12, 2016

I don't see me like you see me


I don't see me like you see me.

I am me. Just me. And you are you.

Just you.


Sometimes I feel like a child - I can do it myself!

You think you're being nice, but I'm just annoyed.

I think you think I can't do it

Or it's just easier if you do.

And sometimes that's right.

I'll tell you when that's so.

I'll ask when I need you.

I'm quiet, but not crazy.

Sometimes I'm lazy.

To just sit back while others move about is what works best.

You're faster, more nimble, not as clunky. You can do it!

But believe you me - I am NOT just sitting back.

I'm doing what I can do that needs doing too.

But my To Do list lets me use my body

and my mind

as I am able.

Lists and emails and research and phone calls.

Laundry and dishes and housework.

I'm getting done what I can

You get done what you can.

Sometimes we work together, helping each other out.

Sometimes we do our own thing.

Just like everyone.

Just like everyone should.

So why does it sometimes feel patronizing

when someone's taken it upon themselves to help?

Ask me first - want a hand with this while you work on that?

Ask - don't just do.

And I'll extend the same courtesy to you.


I am amazing!

I am smart, and thoughtful, and talented, and beautiful and strong and ALL THE THINGS.

Good and bad.

Just like you.

I'm a damn good mom.


I am different.

Just like you.

I don't see me like you see me.

I catch myself unawares when I pass a mirror or my reflection in the storefront window.

Is that me? Can't be. 

I don't feel like that person looks. 

But yet I do.

My body aches, more than I say. 

But you ache too.

Or you're tired, or you've just lost a love,

Or a job, or your dog.

Each with our own thing.

We're all different, but so very, very much the same.

We all need each other.

Maybe I need others more?

No.

Maybe I need others differently.

Just like you.


Everybody's different.

You be you, I'll be me.

You be me, I'll be you.

Either way. We're all the same.


I don't see me like you see me.

I don't see you like you see you.

We're all the same - all different. 

Sunday, June 05, 2016

Close Comfort

Out of the blue - really from nowhere at all - something occurred to me last night that blew my mind.

Perhaps it's a controversial statement, but I believe it's a fact, nonetheless.

And it's not to put everyone else in my life in a lesser position by any means, but...

I believe...

Sweetie is the only person on this earth who is as naturally comfortable with me as I am with myself. 

As it occurred to me last night, I actually worded it as, she is the only one who knows me as well as I know myself. But, becoming clearer in my thinking and realization, I believe it's better to qualify it as a "comfortability" factor, not a "knowing" factor.

And please definitely do notice how I say "naturally comfortable." Not just "comfortable." There are lots and lots of people I feel are comfortable with me. Hubby, for instance, takes the next spot - if I were to make a top ten list, for instance - as he has become, over the many years we've known each other, as familiar with what I can and cannot do as I know for myself my abilities and limitations. But, again, he had to become comfortable with, knowledgeable of, everything my mind, body, and spirit will allow me to do. So he is not naturally comfortable with me... not in the same way Sweetie is, anyway. Sweetie, who has known me literally all of her life, who has been with me every single day since her day one of life, and just, intuitively, naturally "gets" me and what I can and cannot do. Sweetie hasn't had to learn to become comfortable with how I walk and what I do that may be different from other "regular" moms, or people in general. I am her one and only Mom and she knows no other way of existing for herself. Or rather, she did have to learn, but just in the very same way that any child learns about their own parents.

Just like I know for myself no other way of being. It's not like I had an accident some time ago and I became disabled. I've always been this way. I am who I am - I know it and love who I am, just as Sweetie has only ever known her Mom as such. She doesn't love me "anyway" or "in spite of" what my body allows me to do. She loves me because I am me.

"But what about your parents and brothers," you might ask. "Why wouldn't you put them on your list?"  Well, I would, for my time growing up. They were/are comfortable with me and knew/know me as well - or close to as well - as I know myself, of course. But my parents had to learn how to take care of a child with a physical disability. My brothers, all older than me, had to learn what it meant to have not only a new little sister, but one who would never be as physically able as they, their friends, or anyone else they knew were. And now, well, I've been out of my parents house, and away from living with my brothers, for more than 20 years! Now, from them and many in my family, I get a lot of "be careful"'s and "don't do anything crazy"'s and "don't overdo it"'s. A lot of thinking for me what they think I'm able or not to do, and warnings to me to be mindful of my abilities.

But at home with Hubby and Sweetie? They just know. Or they at least know that they can plan whatever activities they wish to do for themselves, and they understand that I will come along with them or not. They know that I know how to take care of myself and that I will do as I can. They don't have to remind me to be sure I'm making the right decisions.

Or, let's say I fall. Hubby and Sweetie just take my falls with a grain of salt. They of course make sure I'm okay, but they also don't become overly concerned thereafter. They don't not let me do the next thing I had planned, for instance, just because this one thing knocked me down (most likely by accident, as I am far from graceful.)

But anyway - back to Sweetie. Another way I can explain it is like this... whenever she's had friends over for the first time, she has never "warned" them that they will find out when they arrive that I wear braces and walk with a walking stick. That I'm different/how I'm different. They just come over. But I'm willing to bet (and of course this is a grand generalization that I can't possibly back up in any way, shape, or form) that, upon my being introduced to new people by friends and family who already know me, probably a fair amount of time those new people are told ahead of time about my disability. If for no more reason than because it's an easy way to identify me in a crowd. But for Sweetie? I honestly doubt if she were describing me to someone who didn't yet know me, that my braces, walking stick, or any other disability-related physical identifier would come out of her mouth. "She's got brown curly hair" or something like that, I think, is what she'd say - nothing more.

And why? Because, again, Sweetie is naturally comfortable with me, so much so that she doesn't even see or think about my braces, gait, walking stick, or what have you. I'm just Mom. Just like, to me, I'm just Amy.

She may actually even get me better than I get myself right now! Because I know what I was like as a child and what abilities I had then that I've lost now (I could jump rope, shoot hoops, didn't have a walking stick, etc., as a child.) I do have a sense of my growing older and less ability now. But Sweetie doesn't see that in me. I've aways been the same mom she's known since day one.

So that's my "whoa" observation of the weekend. That literally everyone else in my life, regardless of how comfortable they are and how much the don't see my disability now, at one point or another early on, in our getting to know each other period, did have to learn to become comfortable around me, to get a sense of what I can and can't do. Even my nieces and nephews who have all grown up knowing me from the beginnings of their lives - even they, for as comfortable as they may or may not be now - have had to learn about me and grow into their comfort level with me. But Sweetie? Who's been with me so consistently since her day one? Yeah - she gets me in a way, I claim, that no one else on this earth gets me, other than how well I "get" myself.

I told Sweetie this this morning and I think she not only agrees, but is proud to hold this place in my life. Yeah. She gets me. S'all good.

I still know me the best, of course. But Swee is right there with me. And it's awesome.

Thursday, January 28, 2016

Love and Understanding

So it was just over a month ago that we gave Sweetie a printed copy of this letter. And... it went well, all things considered. She was confused. She shed tears. She wondered why we were now "taking the magic away from her." She had lots and lots of questions, even into the next few days afterwards. But all in all, she got the intended message, was wowed by the efforts we've gone through to bring magic into her life, and completely all about being on "Team Santa" - even wanting us to buy matching "Team Santa" T-shirts for us to wear next Christmas season. Yes, ma'am! Can't wait to show our united front next year and work with you to bring joy and happiness to the world!

In other news, Sweetie continues to thrive - yes, thrive! - in junior high school. Straight A's on her 1st quarter report card, and A's and B+'s for Quarter 2 (Gym and English earned her those B+'s), with straight A's of varying degree rounding out her Semester 1. Way to go, Sweetie!

Back in early December Sweetie turned in her application for a specialized STEM-focused charter school in our area, as Math and Science are both her strongest subjects and her most enjoyed. We attended this school's information night shortly before turning in the application, and Sweetie just loved it. Despite their warning of the intense workload and effort expected, Sweetie proclaimed afterwards how much more she was now interested in attending this school, and that she couldn't believe there was a school like this that seemed made just for her.

Alas, admission to this school is strictly through a lottery basis. Last weekend was the lottery and, while we don't officially know yet if an invitation to attend the school will be offered to her or not, we do know that her grade-specific position is quite high and that only a small number for her next-year grade will be offered admission. So - very unlikely. This opportunity has probably passed us by for this year. But she'll try again next and hope for the best.

At the same time, Sweetie seems to be just killing it in her math education at her current school! For one thing, she and everyone else in her grade recently participated in NWEA testing. Now, I've never been one for standardized tests, but if you've got to take them, I think the NWEAs do it well. All computerized, and the questions adjust to each kid's individualized level of understanding. No 2 kids take the same test, and the test, in a way, pushes each kid to answer more and more difficult questions until they prove that they've reached a plateau. At least that's my understanding. At any rate, Sweetie took hers (they are tests for Math and English only) and came home with the news that not only did she receive a math score earning her a spot next year in Honors Algebra 1 (as did her previous Math score on this test when she took it in 6th grade, actually), but that she received the 3rd highest Math score in her whole grade (2nd highest, if you consider that the top score was a tie between 2 students)! Wow! (I'm told she did well on the English portion as well, but I don't know specifics.)

On top of that, Sweetie (and about 30 other students in Middle School, including her BFF) joined the Math Club about 2 or 3 months ago. Just around the time that she found out her NWEA score, she and her BFF, and anyone else in Math Club who wanted to (which was pretty much all of them, I hear) took a voluntary math test to see who would make it onto the official Math Team that will soon compete at a nearby college along with several other Math Teams in the area. The top 8 scores on this test made it onto the team. Sweetie and her friend tied, securing their spots as the 6th and 7th members on the team! That big competition is a week from tomorrow... who knows what will happen then, but we sure are proud of our Little Miss Smarty Pants for getting even this far!

All this math stuff (not to mention her complete and total love for and skill in Science) just... hmmmm... I don't know... just has me so confused. Especially because I don't often have any call to see her use these skills in action. She most often has her homework done by the time I see her at night, so I've never really seen her struggle - or not! - with any math or science concept. And life in general just doesn't have her displaying her skills in these areas on any regular occasion. Not to mention that I hate math (okay - hate is a strong word and I know I should never use it. But math and I have a very mutual strong dislike of each other, is all I'm saying.) I'm a writer! I was an English major! I never even liked Science very much. And Hubby? Well, he went to school for Graphic Design. I think he did okay and kinda/sorta liked Geometry once upon a time. And he has a general interest in word problem/puzzles. I've always liked puzzles too, actually. So I know we've passed on this particular love to Sweetie. But all the rest it? I just don't know, man. I don't get it. Love it! Appreciate it! Am so thankful that she "gets" her math homework, because we sure as heck wouldn't be able to help her with it! But, you know... kinda dumbfounded over the whole thing too. Where did this come from? Whatever - rock on, Sweetie! Keep on doing what you're doing - it's obviously working well for you.

And then there's, well, Sweetie's just general sense of self, sense of confidence, and appreciation for her own "weirdness" that I both love so much to see, and - at the same time - am completely confused by. Again, she didn't get these positive self-image personality traits from me or her father, shy creatures that we are now and definitely were back in middle and high school. Today, for example, she wanted to go off to school - mind you, just a regular ol' school day like every other - dressed as a cat. Oh, it was just a black shirt, pants, and boots - but also with the ears, tail, and face makeup proudly in place. Just because. And I let her. Just because. Except, I didn't allow all the face makeup that she wanted - not until she asked her Advisory teacher if she thought it would be okay. So who knows, I may pick her up after school to see her completely decked out... or I may find her completely de-cattified if any school staff instructed her to take the accessories and makeup off. Can't wait to see who, or what, I pick up.

But even that... even with me warning her that this may not be allowed by her school... that the "mean girls," the "cool girls," and anyone else in between is likely to pick on her, to tease her, about what she's wearing. I made this perfectly clear that she should expect that she will be picked on, and what was she going to do about that? She assured me that no one was going to pick on her and, the couple kids she could think of who may be the ones to tease her, well - they aren't even in any of her classes. "They'll find a way, Sweetie. Word will get to them and they will find a way." She remained unfazed. So, despite my warning and reservations, I ultimately agreed to her cat-wishes and sent her off. Again, I can't wait to see what she has to say when I pick her up.

You know, though... I knew that my warnings of what kids may pick on and tease her about would not affect her. I knew she wouldn't care. She revels in her differentness at school. She loves her friends who are as different as she is and who love her for her "weirdnesses." And she couldn't care less about what her other peers think. And, yes, she could be putting up a front and deep down having some not-so-pleasant reactions to kids who may pick and tease. But, for the most part, I really don't think so. An adult we know who knows Sweetie pretty well, and who has a grown daughter whom he thinks was just like Sweetie is now, said recently that his daughter "oozes self-confidence" and he thought Sweetie did too. And I'd have to agree. Body issues and bullying and all that happy Middle School stuff - well, if they're there, they're just not touching her. She doesn't participate in getting others down, and she doesn't allow anyone who may be trying to dig at her to find any success with that. I'm so thankful for this and hope she continues to be as strong and confident as she currently is.

However! For as much self confidence as I know Sweetie has, and for as well as I feel she can handle peer teasing or other peer negativity that may, or already has, come her way... the girl just cannot handle family members teasing her. More specifically, adult family members. This paradox just hit me today. Why can she confidently not be fazed by one, but be brought to tears and confusion by another?

I think the answer might be love. (Awwww.... the answer is always love, isn't it?) What I mean by that is - Sweetie has no particular emotional connection to anyone at school who may choose her as their focus in their teasing antics. So, who cares if they pick on her! She doesn't care what they think anyway. The confidence and love she has in herself is way stronger than anything these dumb put downs could possibly be. But - if someone she loves teases her about something (and specifically any adult who tries to tease her)... in a joking way, in a not-trying-to-hurt-you-at-all kind of way, but just as a silly tease about something meaningless in the eyes of the teaser... well, then. Sweetie is much more apt to not interpret what is said as a tease, but as something authentic and meaningful, and coming from a place of love. And why on Earth would something said that's coming from a place of love make her feel so confused, hurt, dumb, or whatever the case may be? Aha! I think that just may be it!

Fights between her and I, for instance, are apt to happen because of a misinterpreted tease. And that is definitely true between her Daddy and her too. So often we're having to end up talking to her about her attitude or her too-sensitive nature (her words) and assuring her that so-and-so meant nothing by what they offhandedly said. It was a tease. Don't worry about it. Everything is fine. You've got to learn to relax, to tease back, and to move on.

Wow. From Santa to Math Excellency to Self Confidence, Teasing and Love... What an epic post! I've always said that writing helps make things clearer for me. Oh how true that is today. Something to think about here, maybe, for everyone. A little bit of love and understanding will do ya all a bit of good, whatever you may be going through.


Monday, January 04, 2016

Push Me Around, Why Doncha!

We took Sweetie to - finally! - see The Science Behind Pixar exhibit at the Boston Museum of Science this past Saturday. This made me so happy, because it's something Sweetie's been wanting to see since the Spring, when she was one of a handful (or so) of kids who actually got to preview a few parts of the exhibit and offer her opinion on what she liked and didn't like about it - all in the name of making the exhibit excellent for all to see when it finally was ready to open to the public. She loved it, we loved it, and it was especially fun to share the experience with my cousin and her family, who happened to be planning a trip to the exhibit on the same day. It was a fun day all around!

But... the experience also made me sad because, well, it was just hard for me to do. Physically. To walk around. Without pain. Without numbness in my legs. Without sitting down every chance I got (which, if I was lucky, was every 5 minutes or so or, if I wasn't so lucky, every 20 minutes or more.) In fact - I wasn't able to get through the day - or even the first 15 - 20 minutes of our visit - without the pain and numbness settling in and not giving up. Finding a place to sit down for a bit always helps. It helps a good deal, actually. But the back pain was there, at some level or another, to stay, and the leg numbness returned within moments after getting up from every little rest I could find.

I could blame this all on the fact that I forgot to bring with me my (store bought by my own decision) back brace. But... hmmmm.... the last time I knew we'd be going on a bit of a walk (a tour of a local school Sweetie is interested in transferring to) and I did wear my back brace.... well, my legs got more numb and my back was in more pain than I can ever remember them being. I was forced to sit down and miss the second half (or more) of the tour because I simply wasn't physically able to do it. So, no. I don't think having my back brace would have done much, if anything, beneficial to me at the museum.

You know what? It's not how difficult it was for me to get around, or the pain or numbness that made me sad. No - I was expecting that. It's what my life is like now. Seeing the exhibit, being with family, seeing the excitement in Sweetie's eyes at everything - in the Pixar exhibit and beyond in the rest of the museum we visited afterwards - completely makes it all worthwhile to me. I can do it! My family allows me to sit and rest as much as I need, without complaint, each and every time. They are used to the limitations I have and what I need to do to help myself out, and they honor each and every request for "a few minutes rest" whenever the situation arises.

What really made me sad - makes me sad - is the realization I've now been forced to accept that I cannot do this anymore. I cannot go out on big walking adventures anymore. I. just. can't.

It's time. It's time I admit to myself that, when we go places that will require a large amount of walking, I must rent a wheelchair. This will make the experience more enjoyable for everyone. There will be no issues with how long I can "last" as long as my companions are willing and able to help get me from place to place. Sure, they'll have me to push around, but Hubby and Sweetie are strong and able. I'm sure it'll be no problem at all - even fun! - for them to wheel me around anywhere we care to go, for as long as we all want to be there.

And it's not like I've never ridden in a wheelchair before! Why, when I was 16 and way more energetic and had a lot more "ability" with my disability, I visited Disney World with my mom and aunt and they wheeled me all around the Magic Kingdom and the other Disney parks. And when Hubby and I visited Paris when we were first dating, we were able to get me a wheelchair for our tour around the Louvre Museum. I wasn't riddled with back pain or numbness in those days. But I had just walked a ton on our Paris adventure, so getting to sit awhile while we visiting the museum was a treat for my tired bones.

But still - it's a sad realization for me to have to admit that this is it. I really can't just choose anymore to get a wheelchair or not just because it will make things a little easier maybe... No, now I absolutely must get a chair if I want to have any stamina left at the end of the day, and not want to feel like I'm complaining or making Hubby, Sweetie, or whomever else I'm with feel like they have to shorten their experience just because I'm completely done walking around.

But still - it feels like admitting this is just the first(??) step in heading downhill in my abilities as I get older (stairs are getting harder and harder for me too - at least on the up trip.) I don't want to get worse! I don't want to have to be in a wheelchair all the time! I don't want to become a burden to Hubby, Sweetie or anyone else!

Maybe you can even argue that I could work really hard and help myself enough with exercise, therapy, chiropractic, acupuncture, etc., etc., etc... now to get me back to good enough and not needing a wheelchair when we're out and about. And maybe that's right. But only right enough. I've had this back pain and leg numbness (which is becoming worse as of late) long enough and with enough therapies, exercises, etc., etc., to know that all of what could be helping me only helps me a very minimal amount. Chiropractic perhaps is the best and I should look into getting back to that. But... take acupuncture, which is my latest attempt at relief. I had an acute back side pain that treatments helped with immensely! But treatments (and, yes, I've only had 4) have not done a lick of good for my general, Spina Bifida related pains and numbness. And, if you think about it, how could they? My body is just not set up the way it "should" be to have proper flow and connections. So acupuncture really could only get me so far, if at all, through any chronic issues I have. But chiropractic has helped me before - greatly! - and can work, over time, to physically move my body back into a more fluid order where synapses can begin to connect and pain and numbness can ease away. Yes, if anything, I suppose I'd go back to chiropractic.

But still - that would not be a cure-all. A great help, sure! But not a cure. I know it would still feel like the best option - to rent that wheelchair when out on lengthy adventures so that whatever chiropractic has helped to restore is not thrown out the window when my body walks and walks and walks, getting more and more tired, sloppy, and back to disrepair.

Okay. So this is not a sad thing. It's a helpful thing! We can be out for longer stretches of time! We can do more! I can still get out of the wheelchair when I want or when that makes looking at something on our adventure easier. It's not like I'd be stuck in it. But it would be helpful. And I know Sweetie and Hubby would actually make it fun, for them to push me around and "drive" me all over the place. It could be a real hoot, if I think about it. I mean, come on! Do you know Sweetie and Hubby?! They'd be a riot! We'd all be laughing and racing and having a grand old time, I'm sure.

So. There it is. A major, permanent change in how I live my life. I simply won't be able to do some adventures, since it's pretty hard to maneuver a wheelchair through the woods on geocaching hikes. But there will be so much more I now can do, because I'm not tiring out my body and I'm granting myself permission to take care of myself like I should.

Hubby is always telling me not to be a martyr. That I don't ask for help nearly as much as I should. He, more than anyone else, knows what I am capable of, and what I am not. He allows me to push myself further than anyone else does, because he knows I can do it! So.... that's another thing. Not wanting to disappoint him that this is now a thing that I cannot do.... But, no. Again, he tells me not to be a martyr. To ask for help! Well, I'm saying now, with this aspect of my life, I need the help.

Not sad. Glad. Glad I'm finding a way to still do (most) of the things I want to do with my family, while also doing what's right for me and my health.