A Part vs. Apart

About a decade ago this weekend, maybe 11 years ago, I remember it was a cold and rainy few days on the Maine coast. It was our first time visiting Ferry Beach with several other members of our newfound family. Our church family. And, even though it was cold and rainy, we were in Heaven. This! This was the idyllic place that would become our annual post-Labor Day retreat get away. 

(Oh, and the 3rd picture down on my blog header? Of Sweetie twirling in the yellow cup? That’s at Ferry Beach. Every year I’d at least try to get her to let me take this year’s version of the same picture there on the playground. Not as easy to do as she got older. But I do have several others similar to this one.  Fun to see her twirling through the years.)

All this time later and we still look forward to this gathering of good friends, ocean breezes, talent shows, crafts, social hour, coffee on the porch, marathon games, trivia contests, communal meals, services in The Grove, and as much community or alone reflection time as one can desire. It’s all up to you.

Except this year. Because of the COVID-19 pandemic still trying to control our every move, our Ferry Beach weekend was cancelled. Oh, there was still hope for awhile. Any of our members could have decided on their own that they still wanted to go. But as a whole church, the overwhelming majority thought (ours included) was that it just wasn’t safe to go. So - we are not there. 

Only one other time in the last 11 years, since we started going, have we 3 not gone, and that was in order to celebrate my parents’ 50th wedding anniversary with family. That year, we were sad to miss regathering with our church family after a summer away from each other, yet happy enough to know that Ferry Beach weekend was underway anyway and we’d see everyone the next weekend when we joined again in church to start another year together. 

But today - this weekend - none of our church family is at Ferry Beach. Furthermore, this year’s next weekend will not see us all joining together again in person. However, this year - tomorrow! - we will gather again for the new normal we’ve started to get used to - Zoom church. Our annual Water Communion service. Where, sometimes, we and/or fellow church members bring what we call “virtual water” with us, representing meaningful summer adventures we’ve had - like weekends away at Ferry Beach, for example. Well, guess what? This year, even the real water contributed for the service will, in essence, be virtual as we watch, via Zoom, the drops flow together, representing our coming together again for another church year, all as one. 

Ferry Beach. Our church. Our church family. Oh, how I miss them. We 3 all have. Not to say there aren’t opportunities to at least virtually be with one another. There were summer services. There are small group ministries. There are virtual and real life groups that enjoy various activities together, like crafting, book discussing, and social service enterprising. 

And have I chosen to include myself in any of these? No. And when, in better times, we have actually gone to church, per usual, am I a social butterfly before service or at coffee hour after, chit chatting with everyone I possibly can? No. In fact, a lot of times we head home very shortly after service, bypassing everyone else as they sip their coffee or tea and nibble on some treats. 

So, you might ask, if it doesn’t appear that I mingle with my fellow church goers much anyway, where do I get off saying that I miss church and its people? 

Well, I just do. I guess I liken my relationship with my church family to that of an old, comfy relationship. It just feels good to be in that sanctuary, to see those people, to hear the hubbub of friendly chatter, laughter, sometimes tears, hugs, singing, music...everything. Joys and concerns. No talking necessarily needed. Just listening.

Our affirmation. Our weekly tradition of centering ourselves together. Deeply listening to and loving not only our new minister, but the sermons being thoughtfully crafted and enthusiastically delivered. Learning together, questioning together, challenging each other to be the best versions of ourselves not just for this one hour together, but always. Out into the world. Let it be so. 

See, my church family and I (and Hubby and Sweetie) - we’re all like-minded. For me, just being with them every week motivates me to be better, do better, and carry that light everywhere I go. At least that’s the idea. Do any of us truly work towards the betterment of ourselves and the world with every breath and step we take? Well, I won’t speak for others, I guess, but for me, I know I could always do more. Lots more. But I try. And I care. And I want improvement all around - for myself and others. And I aim to keep trying, every day. To educate myself more, to question more, to be more.

At our church, that’s the goal. Be kind to yourself and to others, to listen, to question, to learn. To be and do goodness. However, in your own way, big or small, that that happens for you. And then try again tomorrow. Repeat.

Just being in that physical space with those people surrounding each other and me. That’s enough for me to carry on, reminding me to continue on my pursuit of all things good.

Anyway... what’s my point here? I’m writing this post on my little iPhone because Sweetie is trying (trying!) to work on some homework she is not at all interested in. That’s super difficult for someone with ADHD and Autism. It’s taken her all day of postponing to now finally sit down and try. I could have told her at any point that I actually want to use the computer and write. But, no. I’m not giving her another reason to put off her work, just so I can write. I can do it on my phone, as painstaking as it is. It’s actually okay. I’ve done it before (or on whatever non-phone version of a traveling device it was at the time.)

At least once before, in fact. All those years back, 10 or 11 years ago, at Ferry Beach. Back when I was a regular blogger with a strict posting schedule to maintain. Who cares that I was away at the beach! Who cares that I didn’t have a computer or laptop available to me! I have to write! I have to post! And I will - with my little device. It’ll work. And it did. 

And I did it today too. I’ve written my post. Granted, I don’t feel as “one” with my thoughts successfully getting onto the page as I usually do as I sit at the desk and computer. I feel a lot more “all over the place“ in today’s electronic scribblings. But I’ll read it back. I’ll make edits. I'll give it a bit before posting. 

But I will post. Because writing, and sharing that with others, fills my soul.

And we will, one day, return to Ferry Beach with our church family. And into our church itself, as soon as we can agree - and we’re advised - that it’s safe to do so. And, with that, I will feel complete again, participating in our regular weekly lessons on love, laughter and life. Just to be surrounded by these people, these lessons, is enough to fill my soul. 

But being apart from them? Zoom church is fine and I do look forward to our first service tomorrow and for all those to come in the weeks ahead. 

It’s just not the same as being together in person. At the beach, in church, anywhere. 

Not the same at all.

Suffice It To Say

Hello! And Happy Labor Day Weekend to you! Hopefully you are enjoying a special long weekend doing something you love with those you love. I and my people are doing just that. Sort of. Mostly it's the same as any weekend, but so nice to have an extra day off with no particular responsibilities.

I'm happy to report that I've started to expand my audience a bit, here at Sweetie & Me. I've alerted my Facebook friends to my posts, and I've also checked in with a couple Spina Bifida groups I'm a part of, letting them know that this ol' blog exists and is up and kickin' again. I got some excited responses from a few people, so I am extra invigorated to keep writing and keep telling my truths. Yay, me!

But with that said... now what? I'm not sure what my next topic is. The pain I deal with on a daily basis is a pretty huge topic for me, but I've just written about that. No need to really go on too much there. At least not until there's more news on my nerve stimulator procedure. 

This blog is called Sweetie & Me and, therefore, I should write a bit about Sweetie. But I've already explained that she is older now and I feel she's more or less an off limits topic. Suffice it to say, she is doing well. I have high hopes for this school year. She seems motivated. She has a boyfriend, from the same tough school, and they both seem envigorated this year to do good things and keep on top of their grades. This pandemic we're all experiencing may actually be a help there, since they are doing remote school for now and therefore don't see each other every day, per usual. But we do allow them to see each other on the weekends (that family is part of our limited bubble.) In Sweetie's case, she can only see him if all school work is caught up to the best of her abilities. I believe he probably has similar conditions from his parents. So - they are both motivated to keep up with school if they intend to also be able to see each other. Hopefully these conditional hang outs will continue to be able to happen, grades will be up, and all will be well.

Let's see, what else?... I could talk about my job (which I love), but somehow I don't think that's an appropriate topic. Suffice it to say, I've been employed at a particular job, full time, since the end of March, 2019, only to be put on extended furlough because of said pandemic, towards the end of March 2020. But, I immediately contacted my previous employer and they took me back with open arms - as a temp employee, with the understanding that when their own staff came back to work, those employees had first dibs on a place with the company and I may have to be ousted at that point. But, here we are in September and there remains enough room for me to stay as long as I wish. And it seems like my furlough is going to last awhile longer, probably through the rest of the year, so I'm very grateful to have a place to be. A place I love, with coworkers and management that I love. Honestly, I'd stay there forever if our family could manage it, financially. But we need more. So realistically, I'll most likely be moving back to where I was when the office opens up again. Or I suppose I could look for something else entirely? But I'm not sure how many well paying places with jobs I qualify for are hiring right now. And, honestly, with my back and general pain troubles, I don't feel like I'm in the best physical shape to be going out and about on job hunts at this point. So, this is where I am and that is most likely where I'll go back to, when able.

Something else I've been doing lately on my "couch weekends" is reading. I haven't read a full novel in months! I used to be in a book club, for years and years, actually, until I decided I just wasn't that into it anymore. So I left. And haven't read since. Except, I have downloaded a bunch of Kindle samples, and I've read all of them. But never continued on with the whole book. I even actually downloaded a full novel, with every intention of reading it. But... eh. No. Not so much. But now? I happened to find a real life, paperback book (imagine! not virtual!) in my mom's office bookshelf that I picked up and started reading, and I love it! It's one of those books that you just want to keep reading and reading, but you also don't want to keep reading because you don't want the story to end. It's called The Other Alcott, by Elise Hooper and it's about May Alcott, youngest sister to author Louisa May Alcott and inspiration for the character of Amy in Little Women. The Other Alcott is a fictionalized account of several years in May's life when she was discovering herself, outside of what it meant to be Louisa's Amy. I've read many other historical fiction novels of this ilk, putting a fictionalized twist on other historically famous people and, I gotta say, it's probably my favorite genre of book. I think... I also like, I guess you'd call them fantasy? Stories that seem real enough but then have some sort of fantastical twist to them. I can picture in my head the cover of one, but I'm sorry to say I can't remember it right now to give as an example. Suffice it to say, I just like to read interesting offerings.

I know there are other things I could do easily enough while I'm not able to physically be up and about much. Cross-stitch, for one thing. I really do like this craft and have created more than a few beautiful pieces in my day. But... I also get bored with them too easily. The one I'm currently in the middle of, that I honestly don't feel like I'll return to, is not colorful enough for my liking. Of course, I knew how colorful (or not) it was when I started it. But having it as an actual piece to work on... it's just not striking enough to keep me interested. And, I'm pretty sure I made a mistake in it also, which really drives me nuts and doesn't make me want to continue on with it. Which in this case is okay, because it was meant to be a wedding gift a few years back (yes, I said years. See? I get bored easily and leave things be too quickly). And I knew the color scheme would be appreciated by the couple getting married, if not me. But now, well, suffice it to say they don't need it anymore. I'm bored by it, the recipients aren't even still together, why even bother? But I could find another piece to start, I suppose. Maybe I'll take a look at my options. We tend to get a Stitchery catalogue every once in awhile. Maybe I will look into this... 

Yeah! I love the idea of being creative. I love to be creative, through my writing, crafting, whatever. I'm so, so inspired by other creatives, and Hubby and I - and I dare say, even Sweetie - love to find YouTube or Netflix videos that speak to the importance of creativity and the profound ways that even the simplest acts of artistry - any kind of artistry - can affect not only your own life, but the lives of others. Many TedTalks are good for that. In fact, just yesterday morning, scrolling through YouTube, I happened upon an interesting title and accompanying thumbnail. Oh, how I could recommend so many videos! Vlogbrothers are always good for some lighthearted yet meaningful takes on all things not only creative but technological, innovative and educational. But back to that TedTalk from yesterday. It stars none other than actor Ethan Hawke. We were dubious at the start, but in the end I can't even describe how amazing this video was. I'll just give you the link here. Suffice it to say, it's well worth a watch (or two or three.)

Anyway, I guess that's going to be all from me today. I'm interested to get back to my book. I'm interested to see if there's a Stitchery catalogue hanging around somewhere in the house. Sweetie is away at her boyfriend's house this afternoon and I've got some time on my hands to just be. Not that her presence really takes me away from much of my own "thing" when she is here. She does her thing, I do mine. We get by. But often I do end up feeling bad that we ended up ignoring each other all day long, too involved in our own interests to say much more than two sentences to each other. But no - she's not even here anyway. No need to feel badly that we sometimes live too much side by side and not enough together. Maybe when she gets home - if it's not too late - we three will play a game, watch a movie, or something. Reconnect. But right now, it's honestly and truly my time. Hubby is both working in his woodshop and alternatingly coming up to cook in the kitchen. I can do my own thing, and I will.

Suffice it to say, for as boring and blah as I could say (and have said) life is these days, in a lot of other ways, it's actually pretty A-okay.

The Same Thing We Do Every Day, Pinky...

 ... Try to take over the couch.

Because it hurts too much to walk.

Anywhere.

If a family member can get me the thing I want, I'm going to have them get me the thing I want.

Sweetie is my best helper and the one I turn to the most.  I'm her Mom, teaching her good lessons on being helpful. Yeah. It's important she help me.

She and Hubby help me a lot. Others are willing to help, but it's them I turn to the most.

My parents? They are always willing to help me. But I prefer not to be asked if I need help. I'll let you know. This is what I prefer.

In fact, this is appreciated all around, from whomever. 

I know what I feel I can do. Even if I do it in a different way from anyone else, it's something I'm up for doing and will go ahead and do it.

And I know what doesn't feel right to do. If I need help, I will ask. And I've got 4 other family members in the house who are happy to do the helping.

I'll ask, I promise. I have asked! They all know this. I'm proud, but not too proud to know when I need others to step in with some assistance.

Anyway, that's really not the point here. I'm here to write about your enemy and mine! You all know him! You all hate him! He's the one... the only...

Pain!!!! (boos, hisses and general sounds of distain commence all around.) 

And I have a lot going for me that causes me great pain.

1) I have a disc in my spine that is slipped, but inward towards my spinal cord.

2) I have another bulging disc.

3) I have a tethered spinal cord.

4) & 5) I have both arthritis and bursitis in my hips. 

Yep - I got a lot of pain. 

But ya know? Pain is funny. Not funny, "ha ha." But funny, "ow, ow." Or something like that.

It's funny because we all, each and every one of us, have had experience with pain in our lives. And there are lots of different kinds of pain, running the gamut from heartache and sadness to sharp, tear-inducing physical pain that drops one to their knees in a heap of sensory overload. 

But none of us, absolutely none, can know how another person experiences pain.

Pain. Its a very singular, lonely experience.

Reminds me of the song Quiet from the Broadway musical Matilda. 

Have you every wondered, well I have.

About how when I say, say red, for example.

There's no way of knowing if red

Means the same thing in your head

As red means in my head, when someone says red.

We can't know if we all see things, visually, the same way as each other. And we can't know how we each experience any of the other senses either. Not smell, touch, taste, sight or anything.

And what feels great to one person may feel awful to another. That's the wonderful thing about us humans. We're each our own person, we like and don't like different things, and we all try to get along and understand each other as best we can, in spite of it.

Or at least that's the idea. Some are not as good at the "understanding in spite of it" thing as others are. But I digress...

Anyway... Pain. No one else but you can feel or truly understand your own pain.

But people - doctors, namely, sure do try. And I don't like that game either. I really don't like it at all.

"How bad, on a scale of 1 - 10, is your pain? 1 being hardly at all, 10 being the worst pain ever."

I can't do it people. I just can't. 10, for example, just is never an option because no matter how badly I hurt, I'm still coping as best as I can, getting through my day as best I can, and I can imagine that, yeah, the pain may get worse. And when it does, I'll continue to cope. 

Or, how about this one, "describe your pain." Uh... Well. It's... ah..." I guess with this one I start by explaining what my pain is not. It's not a sharp pain. It's more like a sore muscle pain. It's a tightness. It's constant, but sometimes much worse and sometimes not really all that noticeable. Depends on what I'm doing.

But then I get to thinking. Okay. What exactly am I feeling here, folks? Yeah. It is a tightness! I cannot move and stretch with ease because there's too much tightness. Okay. If I think of it as a tightness and not exactly pain, it's more manageable.

Sometimes I think of my pain as heat. Okay. It's just a sort of heat I'm experiencing. That's okay. I can deal with that. 

I do legitimately have sciatic pain that runs down behind my right knee almost all the time. Sometimes that's definitely a pretty quick, sharp pain. And when it's not being that, it's just a dull, constant, low-number-on-that-dumb-pain-scale ache thing. 

And, you know?, behind the left knee too. But I think the right knee is more constant. In fact, I can feel it right now. Behind the right knee - a steady ache.

Huh. It's there too behind the left knee.

Depending on what seat I'm sitting in, it's better or worse. Never gone. This chair at the computer is not so great.

Doctors have asked me if the pain goes all the way down to my feel. Well, that's a funny question...

No. It doesn't. But I figure that's because I can't feel below my knees. If I could feel, though, I definitely think I would have pain all the way down to my feet.

In fact, I do have a sensation of.... something... in my lower legs. A not pleasant sensation. This pain, perhaps, that I would feel, if I had the ability to truly feel it. 

So, yeah. If I think about my pain differently, I can convince myself that it's not so bad. It's a heat. It's an ache. It's a tightness. It's a constant annoying presence. But I'll get by.

I think that's why I hate the number game so much. I do try to think of my pain in different ways and I do manage through my days as best I can. If the pain gets worse, I just adjust my thinking and I'll get by.

Probably what's worse, though, is all the pains together. Happening at the same time. I do experience that and it’s awful.

The lower back. An achy tightness. The sciatic pain. A constant ache with occasional sharp intervals of a... heat-like pain, maybe? And when I say "heat" I don't literally mean a rise in temperature. It's just my way of trying to explain. Trying to cope. 

Anyway... The back and the legs together. Which is often experienced. Is... no bueno. 

I am on a path towards helping to get this resolved, though, through a nerve stimulator. But they haven't called to schedule me yet. Still waiting. This whole idea is a post topic for another day. Not something I want to get into today.

And I do wear a (store bought, generic) back brace regularly. Every day to work. But I tend to take it off as soon as I get home. It’s too hot in the summer.

And I see a chiropractor twice a week. She wants me to wear the back brace all the time. Even when sleeping. She thinks I do do this, actually. I did for a bit. But, again, it’s summer now and way too hot for that. But I do wear it to work. 

I take over-the-counter pain meds occasionally. Not often. But when the pain is worse than usual. 

So I do have my ways of managing the pain. I’m not just sitting here being miserable with no attempt to fix it. 

Today. Today is Saturday. A Saturday like any other Saturday. Or Sunday. Or evening. Or early morning before work. 

Today (once I'm done typing this, that is. Yay! A change up from the norm!) I sit on the couch. Get up to pee. Get up to get some very easy-to-gather-and/or-prepare food. Have some wine later. And I just try not to be in too much pain.

I sit on the couch in particular way. With my feet up on the coffee table. This feels better on my back than with my feet on the floor. But when I get up from the couch, the fronts of my legs hurt from having been in this position. But, again, if I don’t do it, my back continues to hurt too much while I sit there, 

It’s a no win situation, really. But I try to make the decision that cultivates the least harm. 

I often don’t know how successful I am at that. But I try.  

Hubby is gone today for much of the day. During the week, he works second shift. On weekends he grocery shops, because I can't. Granted, he's also the family chef, and always has been (me with pain, or not), so he knows what to shop for anyway. Otherwise, if he's home, he's often in his basement woodworking workshop, "making sawdust", as he says. 

He's not around much, is what I'm saying.

Except weekend evenings, we three have our time together then, watching a movie or catching up on shows, playing a game. Something. It's nice.

But I do miss having more family time together. I would love to go out on an adventure some weekend with Sweetie and Hubby! We, historically, love weekend adventures! I suppose we still do. Yeah! We still do!

But... We've got things going against us, man. 

This Coronavirus for one thing. Not even going to get into this one. Maybe sometime. Not now. Look it up if you don't know. But... you know. We can't safely go anywhere. 

Love to go to the museum! Museums are either not open or they're just not feeling like a safe place to be these days. 

Love to take day trips! Yeah, but what about stopping to pee? We could take food with us... but we can't really go to any destination without fear of intermingling with others at some point or another.

Oh! We could go for an easy hike in the woods! Geocaching! Yeah! That's Hubby's thing! And Sweetie enjoys it too! I enjoy the family time together, the peace and calm of nature. And... oh. Not the walking. Once upon a time, just a few years ago or so, I could at least manage a walk decently. Support from Hubby. Walking poles as support. Regular sit-down breaks. Yeah, I managed simple walks just fine.

But now? Uh uh. No way, no how. 

Which, you know. It's totally understandable. No one is expecting me to go hike in the woods with them at this point.

But I'm thinking... like, I can't do anything that requires any amount of walking. I have to psych myself up just to go to CVS or Rite Aid for the one or 2 products I need, for goodness sake. What if it's a long check out line? I can't stand there waiting for more than a few minutes. And I'm definitely not going to any larger grocery store. I wouldn't even be able to get half way through the produce section before crying (literally) "uncle!" Thank goodness Target has that little ride-on electronic cart thingy. That thimy is a life saver for me! Love it! (Not that going to Target is anything we are likely to do much of these days. Thanks, Corona.)

So, you know... going any actual place is not really happening.

And just being a passenger in the car as Hubby drives around - even to beautiful, semi-far-off, new-adventury type places, it's just so... tiring. We did this early this summer. it was exhausting. We came home and passed out. Him in his Laz-y-Boy, I on the...

...you guessed it.

Couch. 

So what do we do? As people who really, really want to get out and do something, but really really can't for not just one (globally pandemic-y) reason, but 2? Or more? It's just... Exhausting.

Like this pain. I manage it and deal with it most of the time pretty well. I am not a complainer, so I'm not bothering others with any constant info about how I'm feeeeeeelllling.... I'm trying to be a good mom, a good wife, a good family member. And it's all just...

Exhausting. Bringing me to tears from time to time, exhausting. The pain - the constant pain, the fitfulness, the social and political climate of the world... of the US in particular... the not being one to complain because, really, what good does that do anyway. it's just...

Exhausting.

So.

That's it. It's lunch time now, as I write this. I'll get up from the computer (Thank goodness! This chair does not feel great on my back and legs) and find me some food. Then I'll go back to my couch. Work on some crosswords. Wait for Sweetie to finish her shower (that will take awhile, I promise you) and then she and I will watch something fun. Maybe. That will be fun. Maybe.

Eventually Hubby will come home. I've asked to have turkey burgers and corn on the cob tonight. So, hopefully he stops at the store on his way home for those items. 

We'll have a nice night together. I think we may watch Hamilton again. For the 5th time. Yeah, we really love it. :)

And then - sleep. 

And then...

What will we do tomorrow, Brain?

The same thing we do every day, Pinky. 

Try to take over the couch. 

Watching My Stories...

 Hello? Hi? Is this thing on? Yes?

Ahem...

Hi there. How are you? Me? I'm... okay.

My brother and sister-in-law visited last night. and my SIL asked me just that. And I answered... just that.

Okay.

Which she questioned, and I think I probably said something like. "Yeah." 

But Hubby elaborated for me and told how my back is always hurting me all the time.

And SIL asked if I ever started going back to chiropractic care.

"Yes, I go all the time. Twice a week for awhile now. Doesn't do a darn thing."

To which Hubby elaborated that, "Well, it's helping structurally. But doesn't help with the pain."

I did then mention that I'm in line to get a nerve stimulator placed.

To which my mom said she/we've/I've heard from lots of people about how much this has helped them. "In fact, just today, I was talking to..."

Oh, good, great! SIL is happy for me that I'll have some relief once this procedure is done.

Why am I telling you all this? Because... did you notice how many people it took to tell MY story? Both Hubby and Mom filled in the conversational part of this back and forth, telling what I'm going through and what MY plan for relief is.

And, in a way, I'm grateful for this. Go ahead. Speak for me. It's okay. I'm used to it. 

Another example...

Visiting my in-laws. Just the two of them, and the 3 of us. No other distractions. Just sitting and talking. Except me. Not much.

Except, hey, I do have this thing to mention. Here I go, mentioning it...

...And then Hubby does the "Oh yeah," thing, and goes forward with the story himself.

A little while later, the same exact thing. Except this time it's Sweetie taking the reins from me, galloping along with her version of my story.

Granted, this was a month or more ago and I have no clue at all what either story I was bringing up at the time was about. It very well could have been - probably was - a stories that "starred" Hubby in the first one, and Sweetie in the second one. So, sure. They may have been their stories to share. I don't know. But maybe they weren't? In any case, I presented two different stories/conversation starters and both times they were taken from me by others.

And, eh. That's okay. I guess. Go ahead. They're better conversationalists than I am.

(which is saying a lot, given Sweetie's Autism diagnosis. A diagnosis primarily known for its antisocial tendencies. And, yes, she is definitely antisocial.)

I could tell you all sorts of other examples of this. I couldn't tell you how many times, for example, my large family has been gathered and something comes up and I want to say something relevant to whatever is being said, but the back and forth banter is just so on top of each other that there's no butting in with my maybe/maybe not interesting addition to the topic. So what do I do? I end up raising my hand, like I'm in stinkin' 3rd grade, to let people know that I have something to say. So everyone stops. And waits. Waiting for me to say my certainly highly interesting and witty comment on the overall conversation. Which now, in this so-quiet-you-could-hear-a-pin-drop turn of events, seems to be anything but interesting and witty. Pretty stupid, actually. Aw, never mind. Go back to what you were saying...

I need to take a course on how to be a good conversationalist. Back and forth with one or two other people? Fine. As part of a group where we're really working together to solve an issue and hear from each other and work something out? I've got it! But just casually hanging out with others.... in a group larger than 4 or 5? They talk. I listen. Or one or the other of them "helps" me out by expanding on the story I started.

And I let them. And I don't mind.

Well, you know what? I kind of mind. 

I'm the youngest in my family. So, even though I'm now in my mid 40's, I'm still seen as the baby. Also, we 3 happen to live with my parents for now. This doesn't help me gain any headway as being seen as my own independent adult. I'm a naturally quiet person. I'm a "do gooder" too. I tend to always want to be doing what I should be doing, so that others don't think poorly of me. All this. It doesn't help. I'm a much better writer than I am a speaker. I have never learned to have a great conversation with anyone. Or, specifically, with a group of anyones. 

I need to learn.

I want to learn. I need to tell my own stories instead of watch as my stories are told. I know that's why I like writing so much. It's just me, telling my stories. No interruptions. No judgement. Just me getting to say whatever I want to or have to say, for as long as I want to say it, any way I want to say it. Absolutely freeing. 

But I also want to learn to feel this freedom of my own speech. My own voice. It's something to work on, for sure.

I spoke to Hubby and Sweetie this morning about all this. And they both had some great bits of advice for me to practice. I'm sure there's at least a few TedTalks on the subject too. 

The first step is knowing, right? I now recognize how much I let others tell my stories for me. And how easy it is for me to let them take the spotlight as I sit back, happy enough that I at least brought something up for others to chat about. "The Prince of Tides... it's neither about Princes nor Tides. Discuss." 

But that's all about to change, people! I'm on a mission to learn a new skill. Talking! Chatting! Conversating! I can do it! Woo hoo!

But first, my back pain? Mentioned at the beginning of this post? Yeah. I really can't do much of anything, physically, while in so much pain. Soooo... I feel like I've got really nothing to offer in terms of great story telling from my own life experiences. Not a lot going on for me these days.

I’m sure I could write about it though. I’ll plan to do that soon. 

And I'm getting that nerve stimulator! Sometime! Soon? Who knows?! I'm waiting for the call to schedule. 

Just you wait, though. When I'm pain free (or at least feeling less pain) I'll be back on the move and back to doing things!

Oh the places I'll go! Granted, with Hubby and Sweetie. So if/when I have a story to tell, they will have had been certainly involved in the happening as well. 

But, watch out! Yeah, I've got a story. And it's mine. All mine. And you're about to hear about it!

My way. That's right. 

Back in the Saddle

Sitting here at the computer desk. A desk Sweetie has more or less claimed as her primary seat in our part of the house. Listening to an episode of Andy's Summer Playhouse's podcast, EyeToEye, as I try to get myself back into writing. I've got the content, albeit changed drastically from what this blog used to contain. I currently have the time to devote to writing. I just have to buckle down and do it. Dive into a topic and go. Let's go...

I guess I can, and maybe even should, first give a brief update on Sweetie. When last we gathered together here at Sweetie & Me, we were just celebrating her 15th birthday. Today she is 17 and a half and has finished her Junior Year in high school. However, in a fascinating twist of events, she will be entering Junior Year 2.0 at the end of August. Since she entered her STEM charter school at the start of 8th grade, not 6th grade which is the first grade available at Junior/Senior High School, she was a little behind in credit accruals. So she basically has 3 semesters of credits still to take in what would only be 2 semesters if she moved on to Senior Year. So - she's a Junior again. With a fair amount of room for Electives and study halls. It will be good for her and she has a great sense of relief in this taking of time. No need to rush toward graduation. This is not a race. It's all good. 

Another Sweetie snapshot to take a quick look at. Just over 2 years ago we complete a year-long process of moving towards a significant diagnosis for her. Just over 2 years ago, Sweetie was officially diagnosed with High Functioning Autism, Executive Function Disorder, and a tendency towards anxiety (but not quite "there" enough to be diagnosed with an official Anxiety Disorder.) The previous year to this, she was diagnosed with ADHD, Combined Form. These diagnoses did not come to myself, my husband or Sweetie herself as a surprise, and they have actually offered great opportunity for growth and development - for all of us. I won't get into any of these details now. Maybe not ever. Who knows. But just to say that Sweetie has dealt with some struggles her whole life, struggles that are now defined. This definition has given her, and us, a jumping off point for dealing with them in healthy, useful ways. She's doing beautifully and has grown into a truly insightful, caring, truth-seeking young woman. A young woman who learns more and more each day about what is best for her understanding of the world around her, and how to communicate her needs to others in correct and useful ways. She's doing great!

As for me. As for this blog. I think we're going to see a significant shift here in post topics. Not only because Sweetie is 5 months away from 18 year old adulthood. She certainly doesn't need me sharing her life's details with the world anymore (I do that enough, still, on Facebook, anyway.) But because I find my life's changes and personal care needs changing - needing more attention in my own right. So, yeah. This blog may be titled Sweetie & Me. But it's time. Time to focus on me. Looking forward to doing that here. Letting my readers know what it's like for me currently as a physically disabled mom... of a physically able child. You got years of me going on and on about, really, just typical "mom stuff" where the disability hardly reared its (increasingly ugly) head. But now I'm older, maybe wiser, and - as I said - in a bit more of an "ugly" way in terms of my disability. (No huge worries. It's just that getting older sucks. Getting older with a physical disability really sucks.) And I'm feeling I need to get back to writing.

Writing has always made me see things more clearly. Helped me sort things out. Helped me find my paths. And lately I've been feeling trapped. Trapped in the house, trapped in my bodily aches and pain, and trapped by my thoughts. That I want to get out. I want so much to write! But I also have a sense of... is it fear? Privacy that I want to maintain? Yet, at the same time, wanting to share my story, share my truth with my readers the best way I know how. Yet, at the same time, not overly worrying certain potential readers of mine with the way I see my life. What I live with everyday. It may be too much for some readers. Readers who are close to me in real life. And so, to not concern anyone unnecessarily, I haven't written. I don't write. And, in not writing, I'm doing myself a disservice. Like I said, writing is and always has been a sort of life saver to me. My written words bring me back to a sense of calm, a sense of reality that is much more manageable than floating disparate thoughts and feelings floating around my head, untethered. I need some tethering. I mean, other than the spinal cord tethering I've already got going on. Which I certainly could do without, actually. 

And so - screw it all! I'm going to write. At least for myself and for a small, trusted army of interested readers. And by "readers" I mean, so far, just one (other than those who happen to stumble upon my blog without any particularly advertising of it, that is.) But I know this particular reader will hear my truth in not only what I'm saying it, but how I'm saying it. Sometimes (a lot of times) it's the craft of writing that's more important (or at least equally important) than the writer's topic of choice. And that's what I need my readers to know and understand. Yes, I may write a post about my loneliness during this time of Covid 19 pandemic (oh yeah, that's going on too - I haven't mentioned yet.) But it doesn't mean that my readers need be concerned for my wellbeing or that I've gone off the deep end into a lonely abyss. I may need to write about my back and leg pain. Yo - it's pretty bad. But it doesn't mean my readers need to necessarily treat me with careful kid gloves in real life, not letting me do things for myself and live as normally as I am able. 

Anyway, I just need to write. And I'm happy to get back to it. Thrilled, actually! It took some time for me to dive into this post and start feeling comfortable at the keyboard again. But here we are, and here I am getting my groove on and feeling pretty darn comfy already. 

Looking forward to this new path that my writing is helping me locate and start down. Looking forward to sharing with my small but mighty audience, and seeing whom and if I want to share with others as well.

Here's to a new start! Let's go...

Okay, So Maybe This IS Your Birthday Post...

... Cuz it's definitely your birthday! 15th, to be exact. Happy Birthday, Sweetie!

(Original Post Title: This Is Not Your Birthday Post)

Getting back to the (original) title of this post... Correct. This is not really your Birthday Post. But I suppose you could call it your Official Birthday Post. I'll be writing the real one elsewhere, for your eyes only. Someday. It will be a place where I can really and truly reflect honestly on the past year. It's been a big one, with promises of more adventures to come. But more on that in your Actual Birthday Post.

For now, suffice it to say that Daddy and I are so, so proud of you and impressed with the thoughtful, ever-inquisitive, honest, caring young woman you have become.

You know the importance of hard work, and you get down to it - giving it your all - even if it might take some help with outside motivation to get started, and extra time to complete (true for all of us, sometimes.)

You know the importance of kind words and empathetic actions, even if it sometimes may be difficult for you to express them as intended, or understand them as they're shown to you (a difficulty for everyone, every once in awhile.)

You are unendingly honest, and to see you truly get worked up when you believe you have either unintentionally told an untruth, or believe you have witnessed others being not as transparent as they should be, is both a blessing (A truthful teenager! What an anomaly!) and, sadly, a curse, Why, indeed, can't everyone just "say what they mean and mean what they say"?! (my favorite quote, by the way, by a certain Dr. Seuss.)

You have fun friendships and wonderful peers in your life who support and get you, and whom you help lift up as they need lifting. You have found your "tribe" of cohorts and enjoy every moment spent with them. And when the stresses of schoolwork, or life commitments keep you away from friends too long, you feel terrible that you're being dragged away from "hanging out" with them online or in person to just chat and have fun. But what an important lesson this is that you're learning! Life can and often does get in the way of socializing and "just chillin'" with your friends... but your true friends will always understand and always be there for you when you return.

Your relationship with Daddy and me is lovely, real, difficult, relaxed, comfortable, trying, frustrating, and everything it absolutely should be. We three were talking the other night and you expressed to us, in a bit of sadness, that "you are the only ones who really understand me." And as we described how the "typical" teenager wants nothing to do with their dumb parents, you were in utter disbelief, saying that someone's parents should be the people who understand their kids the best and whom the kids should feel comfortable talking with about anything. Sadly, Sweetie, as sweet and amazing as that sounds, no... it's probably not the way most of the world's families with teens get along most of the time. But we sure are proud of you, love our open relationship, and are confident that you know for sure that you can always come to us with anything that's on your mind. And we know you'll actually come. Maybe not right away. Maybe after some private processing on your own - which is often times absolutely necessary and totally fine. But you do come to us. You do talk, even if it takes you some time to start, to find the right words. However long it takes you, whenever you're ready, we are here and you not only know it, but appreciate it. And so do we.

You say we're the only one's who understand you. Well, we sure are trying, anyway. But way more people "get you" than you realize, Sweetie. The world is full of caring, interesting, awesome people - family, friends, acquaintances, strangers, and everyone in between - who are willing and wanting to see people for who they really are. And with you - despite what less-than-pleasing front you may present at any given moment (don't we all!) - I know they see you for who you truly are - the amazing, honest, smart, great, caring, curious you at your core. Someone who's constantly trying to be the best you you can be - even when it's super difficult to show it.

As parents, who could ask for more?! We sure did luck out with you, Sweetie. You really are the best! (no, that's me.) You're awesome! (no, that's Daddy.) You. Are. Great. Yes you are.

Well, now. Maybe this is your actual Birthday Post. Sounds pretty good to me. I've said what I meant, and meant every word I've said. Even though there are other specifics I could really go on about quite a lot... eh. I don't have to. Not associated with a Birthday Post, anyway. Yeah, maybe I'll write that other post I was talking about earlier - the one I'm not going to publish - just so I can sort out some thoughts for myself. But I'll do it in time. For now - all you need know is that today, on your 15th Birthday and always, Daddy and I are as proud as proud can be of you. We are here for you no matter what joys, concerns, challenges, or revelations lie ahead. And together we can get through anything.

But know this one thing for sure... you are strong enough and wise enough to handle anything that comes your way, all on your own, just because you are you. We believe in you and we know you believe in you too.

You don't need us as much as you think you do, Sweetie. But rest assured that we are here to help you realize even more clearly the strength, independence, confidence, and determination that already lies within.

Come at her, World! She's ready for ya!

Questions, Quirks and - SQUIRREL!

Written and published with Sweetie's permission...

*************************************

So. It's the end of the school year. Sweetie's 8th grade year. Done with middle school - on to high school! I cannot believe it. Houston, we have a Freshman.

Mind you, this is not the end of any ol' 8th grade school year. This is the end of 8th grade at Sweetie's new school! The public charter school, listed as the 44th best public school in the U.S., that Sweetie gained entry into only last July, just weeks before the academic year began. It's a fantastic school and she loves it. Hubby and I, as well as Sweetie, truly believe it's the best education for her, and she absolutely belongs there without a doubt.

But. That's not to say her successes this year haven't come without a fair amount of struggle.

Whenever anyone asks us how Sweetie is doing at her new school and how she's liking it, we say she's doing great and loves it... but she's definitely having to work for her grades, like she's never had to before. No more "easy A's" for sure. She works and she tries and she does her very best for every grade she's received, and they're not necessary all A's this time around. But we're super proud of her. We know the determined effort she's put in and have watched her question, cry, struggle, and succeed. She's doing her best and that's all we ask. The effort has surely paid off.

But, in watching her question, cry, and struggle... in watching her get perfect scores on some things and really not so perfect scores on other things (like the important things - tests and quizzes), we really began to wonder what was going on. Trying to figure out why there's such a disconnect. She knows this stuff. She's a smart kid. She can do this! And yet - she hasn't been able to. Not very consistently, at any rate. She's not always been able to show what she knows when really called upon to do so.

She says she doesn't know how to study. Okay - fair enough. Her old school, and younger grade levels, have just not required her to work as hard to achieve success. Not as much has been expected of her as is expected of her now. Yes, she's "just" in 8th grade - middle school - but her new school truly is like a high school in what they expect of their students from 7th grade on up. So, yeah, I really do get that she's never been taught how to or been expected to really hunker down and study for any big tests, before this year.

But I know how to study. Heck, I've tutored study skills to many, many students in my day! I know what to tell her to do. I can help! And I have - several times this school year. She seems to be listening to me. She seems to understand how the tips I have for her could be helpful. And yet... she either doesn't follow through with utilizing my tips, or she's at least not utilizing them in an effective manner. Sigh... what to do....

And then there's that other aspect... Sweetie has always been quirky. Unique. "Weird" in the most awesome of ways! She, and we, have always completely embraced her unique, weird, quirky ways. Sweetie is awesome! Sweetie is great! Sweetie is smart! And... Sweetie is quick-tempered, highly sensitive, easily distracted, and not often the best judge of either understanding others' tones, words and/or behaviors, or able to accurately expressing her own thoughts and feelings.

Both teenager-hood and her new educational environment have made all of this much more apparent over this last school year.

Putting this all together - the disconnect with her grades, her studying frustrations, her quirky "personality" and behaviors - I finally decided to actively look into just what may be up with Sweetie. Is there something more - something we can actually help her with? So I sat down at the computer to do some searching. And, since the only "quirky" thing/condition I could even really name was Autism, that's where I started. But I was very quickly redirected to something else that seemed to describe Sweetie to a T.

Yes! Oh my gosh! This describes her so incredibly well! THIS is our answer!

Once I discovered how many traits of this condition jived with Sweetie's life experiences, I told Hubby what I thought. He was, at first, definitely not as on-board with my eagerness to pursue a diagnosis as I was, but he pretty quickly came around to realizing that it all actually seemed to make a lot of sense.

I wrote to Sweetie's guidance counselors. I wrote to her doctor. I asked, how do we figure this out? Hubby and I were directed by her doctor to a survey to fill out, and I handed over the teacher version of the survey to her school as well.

Then I told Sweetie what we were looking into for her, since I didn't want to be doing this all behind her back, and I knew her involvement would be key as we made our way towards finding some answers. I told her by simply stating, "You know, I've been thinking about you a lot lately, Sweetie, and I think I figured something out. I think your brain works a little differently than most others' do."

And she cried. "What do you mean?! I don't want to have a mental illness!"

I assured her that this was just my opinion at the time and this is just something she might have. I could in no way diagnose her myself. But we really should look into this. We are looking into this.

I told both her and Hubby about an awesome online magazine I found that has a ton of great information. Check it out here.

And in the next few days after that?... Sweetie seemed to come around. She was randomly asking me a few really great questions. What were some symptoms? Could I show her that magazine? and is it true that, if she does have this, she'd be able to get some help for her struggles?

Absolutely!

Since then all three of us have learned a ton more about what may be going on with her. And we've enjoyed learning from a lot of great resources - key among them being this Youtube channel. Jessica, this channel's host, is awesome and really informative. We've loved watching and learning from her. She's taught us a lot, made us laugh, cry, understand and even relax. It's all going to be okay.

In the last couple months since we've filled out the surveys, gotten back the teachers' responses, and scheduled and waited for Sweetie's appointment with her doctor, Sweetie has really pulled a 180 in her attitude towards the possibility of diagnosis. She had gone from "I don't want to have this!" to "I don't see how I can possibly not have this!"

And we agree. It all added up to a big, fat, "DUH!"

Sweetie's new attitude was one of excitement in the possibility of diagnosis because, if she's diagnosed, she now has answers for why she is the way she is and - better than that - a path to getting some help. She knows how sensitive she is. She knows she can have a very quick temper over very little things. And I know she hates this. Any help to curb this - and other personal struggles - would be a great blessing for her.

But still... now I had gone from "person in the family who brought on this unpopular idea to look into" to "person (along with Hubby) who was now worried Sweetie wouldn't receive that diagnosis like she expected to get." I mean - what if the doctor doesn't agree with us? I mean - the surveys from her teachers did not seem very telling at all. She's good in class. She's smart. Nothing appears outwardly alarming about her behavior, as described by her teachers. All we really have to go on, it seems, is our own survey and our examples of bad/quirky/questionable behavior. Was that going to be enough?

Well - we recently had that appointment, in early June. And...basically, Sweetie's doctor is amazing. She saw how the teachers' surveys actually were noteworthy, in that there were noticeable inconsistencies in how her different teachers see Sweetie/what her classroom experience is like from class to class. Sweetie's been seeing this doctor for several years now - she knows Sweetie! She's personally observed some of her quirks. And she listened to us. About how she behaved this inappropriate way in Kindergarten. How her 3rd grade teacher observed this about Sweetie's motivation level. How she recently reacted when this happened. How this past school year and hormonal changes seem to have made her life-long "quirky personality traits" more prominent and obvious. There's something about these quirks and inconsistencies that just all adds up to....something, right?

Right.

Diagnosis: ADD and Executive Function Disorder.

Well then. Good. We all agree and can move forward from here. Starting with some daily supplements for Sweetie to take to help with focus, and immediately working to put in place a 504 Plan for the next school year, based on some suggestions for accommodations from Sweetie's doctor.

BUT - Sweetie's doctor also wants her tested for possible High Functioning Autism or Asperger's Syndrome. (there is a difference between the two, but only really in how they manifest. With High Functioning Autism, the young child struggles with language development. This was definitely not Sweetie's experience, so I'm leaning toward Asperger's, if anything.) The process to get this diagnosed is quite lengthy, and it means making more appointments for testing with doctors and psychiatrists who schedule out several months ahead. But it's a process we'll go through to get it all figured out.

This suggestion of possible Aspergers was/is surprising to we 3... but, I don't know... maybe not that surprising. I guess what we see in Sweetie as manifestations of Hyperactivity (impulsivity), and her lack of great understanding of social cues, among other things, is what's leading Sweetie's doctor to make this suggestion. She's definitely not H - she's clearly not hyper. But have you ever considered High Functioning Autism or Asperger's?

Everything we listed from there on out - Sweetie's poor time management skills, her literalness, her quickness to temper, her extreme sensitivity, her preference for structure, her sometimes troubles with transitions - all seemed to be another check mark in the Asperger's column, and maybe not so much a symptom of her ADD (or ADHD, as we had self-diagnosed.)

But, with the warning that we would be looking at at least a year-long process before getting any diagnosable answers on the Asperger's front, we knew we wanted and needed some sort of immediate help for Sweetie to grab hold of her challenges in the present. The ADD and Executive Function Disorder diagnosis, starting daily DMAE supplements, and a letter to her school requesting accommodations, function as just that - immediate help for some immediate issues.

I know there must be readers out there who think, you know, maybe it's just that this new school is too much for Sweetie. She can't handle it, shouldn't have to handle it, and would be better off in a less academically challenging environment. I mean, it's just been this year that she's been struggling under all the pressure of so many difficult assignments and much greater expectations. But I say, absolutely not! And Hubby and Sweetie agree. We know this is where she belongs. She does love this school. She just has a whole new world to try to navigate that she's never had to make her way through before. And it's difficult. Because she legitimately has some differences in the way her brain works. And now we know. And now we can move forward with greater success.

I'm actually extremely thankful for these challenges from this new school, since they helped bring to light some issues Sweetie has always had, yet has until now been able to fly under the radar with. Girls just don't present with ADD/ADHD like boys do. Boys with ADD/ADHD get diagnosed way more often than girls. Smart girls with ADD/ADHD especially can easily get by in the elementary years. But as soon as the stricter, more academically challenging middle or high school years hit, then everything starts to break down for girls with ADD/ADHD. Sweetie can no longer manage her time like she once could fake her way through, she can't afford to daydream, process the onslaught of rapid new information, manage trickier social cues, etc., etc., etc.

Imagine! If Sweetie had stayed at a hometown public school throughout high school, she likely would have continued to breeze on through, relatively easily earning her A's and high B's. And then? She would have gone off to college - probably a noteworthy college where perhaps she may have even earned an academic scholarship or two - and... flailed. Badly. So - yeah. I'm super happy that this has all been figured out now, so she can get the accommodations and other helps needed to get herself back on track, increasing her self confidence and helping her studies improve. If she can acquire the necessary skills, techniques and accommodations today, she'll be ready to tackle the world head on tomorrow.

Yes, Sweetie's got quirks. She's always had them. This "new development" is not the "fault" of her new, tougher school, nor is it new, really, at all. She's a smart, conscientious girl who has always loved school, has always treated her homework like her job - a job she has no choice but to do her best on and complete in the timeframe given. No complaining, no issues. She just has always done her work and gotten great grades, the end. So when that wasn't necessarily happening this year, and her quirks seemed to be getting quirkier, and she just didn't seem to be maturing socially/behaviorally like her friends and peers, we knew it was turning into something that needed exploration, not dismissal. We were no longer able to comfortably say, "yeah, we don't like it, but that's just the way she is. It's just her personality." Well, you know what? It is the way she is, but there's good reason behind it. And the good news is, it's something for which she can get help!

Sweetie is still Sweetie. Nothing has changed. Just because she now has a diagnosis doesn't mean she now has an excuse, or a label, or a reason to feel defeated. Heck, no! Just the opposite! If anything, she now knows that the difficulties she's experiencing/has experienced her whole life are due to a real medical condition. She's got nothing to feel bad about. It's nothing she's personally done, nothing we've done (or not done) in raising her, that has created the struggles she's been dealing with. Her brain just works a little differently than others'. And! There are accommodations that can be made to help her succeed again. Medication (if needed), supplements, techniques, and support. We've got answers. And with answers there is learning, growth, and - best of all - thriving.

The only real difference for us as her parents, as her family, is that now we too have answers and understanding. We see how she needs us to be more understanding of her quirks, and less angry when she's not able to do something the way we think it should be done. When she doesn't "get" something "so easy", now we know it's not because she's just being stubborn. She really does need help seeing things in a different, clearer way for her. A way that makes sense for her. It's okay. She'll get it, if we just give her time and help show her the way, in a new way.

Understanding leads to success. That's the name of this game. Set up the board -we're ready to play!

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.