Wow! Someone Really Is Listening Out There!

As we all know, I started this blog some years back as a means for other women, and men, with spina bifida to find at least some information on what it meant to be a parent with the disability going through a pregnancy and raising a child. As we also know, there was precious little to no information like this at all available for myself and my husband to find when we were setting out on our journey through pregnancy and parenthood. No one, nothing out there to answer any of our key questions. Questions like:

• Would I be able to walk throughout my entire pregnancy, or would I require a wheelchair by my third trimester - or before?

• Would my already weakened legs and overly curved spine even allow me to carry a baby to term?

• Given my decreased sensation, would I be able to detect when I went into labor?

• Assuming that I could handle a pregnancy, would I be able to have a natural birth, or would I have to have a C-section?

• What were the chances that our baby would also have spina bifida - or any other birth defect, for that matter, given that I have spina bifida myself?

Then, beyond the actual pregnancy and birth - then what? Where could we find some information - maybe some first hand accounts? - of families with one parent having spina bifida and successfully getting through the day to day joys and challenges of raising a child? How to handle such things as mobility issues, for example? Wasn't there anyone out there who we could learn from?

No. There wasn't. And now, through the many people I've heard from through my blog, I'm saddened to know that there still is a gaping lack of knowledge available for the disabled adult wishing to start a family. 

Until now.

DPPi, the UK based information charity on disability and pregnancy, is spearheading a 3 part project entitled the Empowering Parents Initiative. The first part of the project has already been realized - a full report published in June 2009 entitled The Maternity Information Gap for Physically Disabled People. 

What? Really? You mean an organization actually took the time to find out why there's such a lack of information for adults with disabilities (both physical and mental) wanting to start a family? And what sort of information and resources these adults would have liked to have been available to them? With an aim towards having said resources available for others in the future? I am speechless... utterly speechless and very impressed. 

You can read the full report here. 

The second and third parts of this project's aim is to produce two guides for physically disabled parents to be published later this fall. I am thrilled to be part of the Steering Group for these upcoming guidebooks, getting a chance to contribute my own ideas on what is necessary and not so necessary to include in its pages and simply to make sure what's produced is the best information out there for expecting (and expecting to expect) parents to absorb.

Finally! A wonderful organization has made it a priority to help adults with disabilities in this most fundamental way. Bravo, DPPi! You are truly amazing, courageous and - as Sweetie would say - GREAT! I am proud to be associated with you in even the most broadest of terms. Can't wait to see what you come up with next!

A Seinfeldian Sort of Post

I've recently tried to write a deep and meaningful post here. But that started to get all sorts of whacky sentimental and such, so I trashed it.

I've wanted to post pictures of my growing Sweetie (now an official 1st Grader, I suppose. Wow!!), but you know I don't "do" pictures of her face here. (Although I know she'd be more than happy for me to take a picture of her "shaking (her) booty", but I sure as heck not going to post that sort of photo either!)

I just asked Sweetie if she wanted to "write" a post and I'd do the typing. She says she doesn't know what she'd talk about.

Hmmmm.... Exactly, Sweetie. I've got nothin' either. Everything's pretty much same ol', same ol'. At least in terms of anything that would be meaningful for this blog. 

But, that being said - I've been wanting to write because I miss you guys. I miss writing - in some ways - and I also so really don't. I used to be such the writer! Such big writing dreams! Editing dreams! Eh. I don't know. I certainly would enjoy a job that required me to do those duties. Heck, I'm pretty sure I would even excel at such a job! But I don't really feel it's my lot in life anymore to Write.

(Or is it? Writing that last sentence was pretty sad for me...)

Anyway. I'm sorry I haven't been around. I'm missed writing here, but also want to write when I have something appropriate to share. So, when that happens, you can be sure I'll be back!

Until then - don't forget about me! Enjoy your summer days and nights. 

Later.

Happiness Is...

I recently came across a photo Hubby took of a correspondence of sorts between he and Sweetie. For a time, Hubby was writing crazy surveys or sentences on our chalkboard for Sweetie to complete. One such "finish the sentence" that he presented to her on the board was: "Happiness is a warm _______."

And what did Sweetie answer? No, she didn't go the Beatles route and fill it in with the easy to spell "gun" (ya know, since I'm pretty sure she's never even heard of that song and all). No, she took an even simpler route by keeping the blank there, as is, and just adding an "et" at the end of it.

"Happiness is a warm ______et" 

(get it? you must! "Happiness is a warm blanket." Ha!)

She's so funny.

You know what happiness is to me? Go on - guess! That's right.... Sweetie. Sweetie makes me incredibly happy.

I love listening to her babble and sing as she plays in the unconventional ways that she does. She has a tea set, but does she play tea party? No. She turns the cups upside down on their saucers, takes out her Winnie the Pooh figurines, and plays house with them (the cups and any other surfaces she can think of being the friends' houses, you see.) We got her a children's set of magnetic poetry words a couple years ago. Does she use the words to make up sentences and poems? No. She spends her time playing with her word friends ("Fiddle" and "Honey", for instance), sliding everyone around on the fridge to form different shapes and to visit different "houses". 

I love how excited Sweetie is to make new things and test out new theories. She loves to create and is as curious as ever to see how things will work out in the end.

I love how much of an individual Sweetie is. Being so "whatever" in the face of bullies at school. Not only being able to but actually loving playing on her own at recess - Super (Sweetie) is always to the rescue! (Although I admit to being a bit happier now that she's regularly playing with a couple of little girl friends at recess. Individuality and personal strength is a great thing!, but fitting in, making friends and occasionally following other's leads is also a valuable skill to learn, I think.)

I love how polite and helpful Sweetie (mostly) is. She helps me distribute clean laundry to the upstairs room. She helps Daddy with gardening. She helps me clean up the house with not much of a big deal. And she politely asks for, and thanks us for, the things that she wants. (Scene from yesterday: She gets her little piano and tells me she's going to sing a song for me about the way she feels and what she wants. Then she plays while singing - "Mommy, I'm thirsty! Please get me a drink! I'm thirsty! Please get me a drink!" So cute. And she thanked me as well, once I got her that drink.)

And I love how loved I know Sweetie feels. I love that I can be beyond mad at her - enough to make her start crying and let her know without a shadow of a doubt that what she's just done is completely unacceptable.... And then within a half hour or so, we can come together again, talk about the problem, and be done with it. She'll sidle up to me on the couch once more to cuddle or will start in again with her crazy, spirited play - singing and dancing around again... "I love you, Mommy! I love you, Daddy!" She knows that it's certain behavior of hers Daddy and I don't love. But we will always, ALWAYS love her more than words could ever express.

Sweetie makes me happy. Even when she's frustrating, not listening, whining, and just plain being a pill. She is still absolutely amazing to me. Her bad moods don't tend to last all that long. She is a good girl. She's a responsible girl who thinks about others. And if I'm feeling like not too much else in this world is going particularly great - I know that Sweetie is always great and that's good enough for me.

If she's great, that means I and Hubby must be doing something great as well. We're raising a really wonderful little girl.

This parenting job pays really terribly, but I'll take it. The benefits package is unbeatable!

Sweetie Saturday - Growing Up Too Fast Edition

This week for Show and Tell, Sweetie decided to take her "telephone" she made out of 2 plastic cups and a long string. (Kids are to bring something they made, something that was made for them, something from nature, or something that helps describe them for Show and Tell. I'm pretty sure Sweetie is the only kid who usually does this.) 

To demonstrate her toy, she picked S____ to listen at the other end of the phone. S____ is a cute boy who told Sweetie towards the beginning of the school year (as well as another girl in the class) that he wants to marry her. Obviously, Sweetie likes him back. 

What did you say into the phone to him?

Hi S______. I love you.

(I'm told that everyone then laughed - including S_____ and the teachers.)

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

There's another boy in Sweetie's class who's been picking on her a bit. He's one of the few kids she's labeled as a "bad boy." She often plays "Super (Sweetie)" at recess "with" these boys - as in, she's the super hero who's secretly saving everyone from the bad boys (while they happen to be playing at whatever they're doing.)

Anyway - one of the things Sweetie has told me about this one boy in particular is that he calls her a name. Not really a bad name. Just a boy's name that is arguably a variant of her real name. But it bugs her.

Aw... that just means he likes you. Boys pick on you when they like you.

That was that... until a few days later.

Mommy - I asked D______ today if he likes me and he said no.

Then a few days after that:

Mommy. Today I asked D______ if he DIDN'T like me and he said "I just don't want you to kiss me."

Ha! You haven't been going around kissing boys, have you?

No!!! I haven't kissed anyone at school!

Okay. Just checking.

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

On the weekends, Sweetie knows that she can come wake me up at 7:30 a.m. or later. But more often than not this translates to exactly 7:30 a.m. on the nose. (then she gets mad at me when I'm dressed and wanting to go downstairs with her because she's not done playing in her room yet!) 

A few days ago, Sweetie didn't get me up until about 7:45 a.m. Wow! What a nice surprise!

When I asked her why she got me up so "late" she answered very sincerely:

Well, it's hard to know what time it is when your eyes are closed.

Yes. I do suppose you're right, Sweetie. You got me there.

12 Years

You don't know that I collect giraffes.

You don't know that I made the decision to start collecting giraffes on a whim 11 years ago while in France when I saw a beautiful poster of a giraffe metamorphosing into the Eiffel Tower. 

You don't know that our camera was broken the entire time we were in France so that none of the 300 or so pictures we took during our visit developed. Nor do you know that we ended up making a gorgeous scrapbook out of the pictures Scott had from his previous time in France and from pictures generously lent to us by a friend from when she was in Paris. 

You don't know that Scott proposed to me at the Memorial Arch in Tilton, NH because it reminded us of the Arc de Triomphe.

You don't know how much I not only wanted you at our wedding but also wished that our relationship was the same and that you could have stood up as my witness.

You don't know that one of my brother's and his wife have 3 children together, giving me a total of 7 nieces and nephews on my side of the family.

You don't know that my oldest niece, whom you have met, is engaged to be married. 

You don't know what craziness we went through toward the end of my pregnancy, not the least of which was being diagnosed with preeclampsia and having to deliver Sweetie 3 week earlier than her actual due date.

You don't know that I was able to have a natural birth that went very successfully, but that I was also put on some crazy magnesium sulfate while in the hospital and that I more or less have no recollection of Sweetie's entire first day of life.

You don't know that I had a grand mal seizure a month or so before Scott and my wedding, which has required me to be on seizure medication ever since.

You don't know that I walk with a walking stick now or that ever since giving birth my left upper leg can (and usually does) go completely numb after standing on it for only a short time or that I have terrible lower back pain - both of which are helped a small bit by the drug store back brace I wear almost every day and certainly when I know I'll be out and about.

You don't know that I had a hysterectomy a little over 2 years ago because - well, let's just say Sweetie broke my "oven" when she took residence there and it wished to leave my body one way or another no matter what!

You don't know Sweetie. Amazing, smart, energetic, imaginative, creative, curious, stubborn, sweet Sweetie. 

You don't know how absolutely devastated I was when you broke off our friendship or how terribly, terribly guilty I felt or how much I knew in my heart that your reasons, at the time, were well justified.

You don't know how much I've thought of you over the years. I probably couldn't admit that it's been every single day, but certainly a very large portion of the days that made up the last 12 years of my life.

You don't know how many times I've tried to find you. Where are you currently living, what's your email address, what's your phone number? Are you on Facebook? What sorts of social networks, if any, would you be likely to join?...

...But you will know all of the above about me and so much more. And I will get to tell you everything myself. Because I've found you. And you responded. And you say you've thought of me all these years as well.

Twelve years is a lot of years to catch up on. So much can change in that span of time - especially when you're talking about the years just after college to full-fledged adulthood. Family, travel, births and deaths. A better grasp of reality and appreciation for how things had to be back then. 

I can't wait to talk to you on the phone and see you again. Can't wait to meet the important people in your life now and for you to meet mine. 

Yes, things obviously have changed. But you've always remained important to me and I knew, somehow, we'd one day get past our stubborn, young ideals and opinions and find each other again. Our relationship now will certainly be different - twelve years of life and living will do that to you! - but I feel we will regain a uniquely strong friendship once again.

For, honestly - did it ever really go away?

Life Is Good

Money may be as tight as ever, so much so that we really shouldn't be spending a dime on anything other than bills and absolute necessities...

My body may seem like it's slowing down, aching up, and just not fit to be moving around as much as it was once able to....

I may feel like I've been to the doctor, or dentist, more in the last year than I have in the last 5 years! Yay - so many visits with the crappiest insurance ever...

I am still out of a job, much like so many people these days. And so I let myself occasionally feel that much worse for myself - and about myself - because I was laid off just over a year ago now, before the big economic crisis truly hit (but well into the hurt that the newspapers were and still are feeling so badly). Surely I should have been able to find a job by now!... Ah, yes, but if I had - who knows! Perhaps I'd already be laid off from THAT job (last one in, first one out, you know). Of course, maybe not. We can't know. 

Sweetie, as we know, says about herself that she's great everyday. Daddy's tagline - per Sweetie (with a little bit of Daddy help) - is that he is "awesome." I'm still waiting and wondering about what my "thing" is. Makes me feel a little left out, if I'm being honest. Not to mention the pure joy I see in Sweetie and Hubby's eyes when they're being crazy and silly together - running around the house, hiding from each other, tackling one another to the ground in tickle fights. I wonder if Sweetie enjoys our geocaching adventures better when it's just she and her daddy - they can go quicker and walk together. Or when I go along - we go much slower and Daddy has to help me along, leaving Sweetie to walk ahead, slowly, on her own.

BUT...

... really, sometimes you've got to give yourself permission to live just a little. Life is so much more than the money in your bank account or pocket.

... I am going off on hiking excursions with my family and I am holding up! I am doing it! So what if I come to a day when stairs are really an impossibility. Just give me a ramp or an elevator and I'll keep on keepin' on!

... At least I have insurance. And the reassurance that doctors and dentists are there to help me, they know what's going on with me and are working hard to make things right. 

... I have a vision for my future. I am working on my plan. I strive for a job to go to everyday that doesn't feel like going to a job everyday. I have contacts, I am not giving up. I will succeed at whatever I do.

... Sweetie calls to me when she's having trouble with anything or when she's hurt. She squeezes me so tight after a long separation from the both of us. She cuddles up to me on the couch as we read books or veg during a T.V. show. She draws detailed pictures of me, for Mother's Day, wearing specific clothing and with my purse - with all it's unique qualities - slung over my shoulder. But no braces or walking stick, because "I didn't think of those things." Sweetie can't say for sure which caching adventures she prefers - with or without me - which is fair enough. I say at least she didn't jump at the chance to leave me home.

Life, for anyone, is full of goodness and badness. I try, everyday, to focus on the good. That's a very difficult thing to do sometimes, but I try. 

Life is good. Happy Mother's Day.

Stopping By A Blog On a Sunny Afternoon

Dum de dum la la la la...

 Oh! Whoa! Who goes there?!

Oh! Hi! How the heck are ya? I hardly recognized you - you look so different! It sure has been awhile, hasn't it? How are things? How's the family? You're looking just great!

How am I? I'm good, good. I've finished up tutoring my NCLB kids a couple weeks ago. One kid I'll miss - he was great! But the other was a real terror. I'm sorry to say I'm not too sad that my time with him is up. But, in both kids' cases, I was thrilled to see how well they did on their final assessment tests! Of course my "challenging" kid needed some major coaxing to even agree to complete just some of the test, but what he did, he did well on. And so did my 3rd grade guy. I've got to say that I'm proud of them both and proud of myself for helping them make the improvement.

Now I'm back to studying for my teaching certification and applying to jobs as they come along. I went to a school job fair a couple months back where I learned about a very interesting sounding part-time writing assistant position. I've got to call my contact woman this week to check on the hiring process for that - she said they would start interviewing for it some time after spring vacation. And I also sent in my information for an elementary teacher position opening up in the fall at a neighboring town. Of course, I'll still take almost anything, so I've also just applied for a receptionist position at a dental office. I just keep trying, keep hoping, and do what I can to stay afloat, stay happy, and not freak out too much.

Oh! And another thing! I'm on the substitute teaching call list for 2 SAU's  - my own town's and the neighboring town. I've already been called twice, but the first call I missed and the second was last week, calling me in for that same day when I also had a dentist appointment I had to keep. So 2 calls and I've not actually gone in to teach in either case. At any rate, I'm definitely learning how crazy it is to be a sub, what with not knowing the night before if you'll be working the next day or not! I have to get up each day, dress as if I'll be teaching, and then if I've not been called by the time I've dropped Sweetie off at school, then I'm pretty certain I'm not going to be called and I can change to my home clothes. It's weird - I have to say to myself each night - "Okay, if I'm not subbing tomorrow, then I'll do this, this and this at and around home. If I am subbing, then forget all that and I'll have to find a different time to get that all done." What a double life I'm leading! 

On the home front, we 3 are all doing great! Hubby has uncovered a new hobby for the family - geocaching. Actually, if you want to be exact, I found out about geocaching a few years ago and knew that it was an activity that had Hubby's name written all over it! I SO wanted to get him a GPS and let him into the wonderful world of high-tech treasure hunting back then... but finances wouldn't allow the GPS system so I just let it go. Now... Hubby somehow recently came upon all things geocaching (I think one of his friends at Facebook mentioned it) for himself and.... the rest is history. We used some of our tax refund money to get the GPS and we've been off and running ever since. It is a lot of fun, and I certainly am getting a lot more exercise than I'm used to (I walked just about 2.5 miles yesterday! So proud of myself!). And, ooh boy!, does Sweetie ever love it! She and her Daddy are geocaching fools! I guess it's just, in my opinion, I think you can take a good thing and just about kill it with overexposure. Hubby comes home from work and he talks about the caches he found on his way home. If he's ever at the computer, it's to load more caches into the GPS for us to find. And he's almost completely stopped going to Facebook to play games-in-progress that he's involved in. Facebook, after all, was soooooo yesterday, doncha know? (not that it's a great thing to be constantly on FB, or wherever, of course.) Whatever - like I said, geocaching can be a lot of fun (more so for me if I'm actually involved in finding the cache along our hikes than simply doing the tough-for-me hikes and then waiting on the path while Hubby and Sweetie go off into the woods to track the treasure down themselves), but... stop talking about it so much to me and maybe I'll like it even a bit more than I already do! The caches aren't going anywhere - do something else with your life for a bit, okay?!

Phew... what? Where was I? Oh,... sorry about that. Got carried away in my cache rant (which I'm only able to sit here and write about because - you guessed it - Hubby and Sweetie are off on another hunt right now!). Let's see, what else?...

Huh... I don't know... I've obviously not been in the writing mood lately. I'm feeling much more in the teaching/learning mode these days than the writing/editing mode. Which is a good thing! But I want to keep up with you here when I can as well. As a long-time reader said to me (more or less) in a beautiful email she sent me - my just being here, writing about my everyday, "boring" life, does in itself what I first intended with this blog. It shows that being a woman, and a mom, who happens to have a physical disability really is no different than any other woman or mom out there! So no matter - just write!

All "write" already! Seriously - I didn't write you back, but you know who are you. I appreciated your email more than you can know and I certainly see your point - and agree with you too. No matter what I say or do here, I still am who I am. I don't have to harp on about my disability or adopt a "woe is me" or even an "I'm so great!" attitude about what I accomplish (or not) in my life. I'm just me and I'm doing fine - as is my family - no matter how it is I get around physically or what sort of obstacles may slow me down.

Anyway, I better get going. That's enough about me for now. Thanks for stopping in! It was so great to see you! I'll be back soon. Have a great rest of your day!

Sweetie & Me Update

Wow! Over a month since I last wrote! I gotta say, I'm quite enjoying not having the pressure of writing multiple blog posts each week. But at the same time, my not writing has reacquainted myself with the clarity that writing brings to my life. There have been a few times over the weeks where I know sitting down and writing out what's happening in my life could have really helped me sort out what it all means and what I need to do. But I didn't do it.  But I probably should have. Writing is my way of keeping life laid out before me and on track.

Here's a brief, bulleted update of life in the Sweetie & Me household

* My tutoring schedule is winding down - next Tuesday is my last day with these kids. I've gotta say that I'm very happy to be done. A combination of an unwilling to cooperate kid + a tutoring company director who lacks in the communications skills department = an unpleasant tutoring experience all around. Mind you, this hasn't turned me off to tutoring or working more intensely in the educational field at all! I know this bad experience had everything to do with poor leadership and a kid who just didn't want to learn. Upward & onward to better educational experiences!

* I've scheduled my 2 exams which will earn me my teaching degree - one for early November, and one for early January. Studying is coming along - I'm interested in what I'm learning and find much of the knowledge very intuitive in nature. 

* I attended a local school district's job fair a few weeks ago and learned about one particular job I'm hoping to hear back on. A writing assistant for their elementary school. At the time of the fair it was a brand new position, one that they weren't even going to interview for until later in April or early May. But I had a great talk with the woman in charge of that program and hope to hear from her in the coming weeks so that I my interview can be scheduled. 

* I am officially signed up to be a substitute teacher in my town's school district as well as the neighboring town's district. It's about 15 school all together. I did sign up for subbing in all grade levels and schools, but I made the notation that I'd really want to start out subbing in the elementary schools first. Then, once I get my feet wet there, I'll feel more comfortable about including the middle and high schools as subbing options as well. 

* Our house is not yet on the market, as Hubby has spent a lot of time away on work the last couple months. But home improvement has been improving as of late and we hope to have a sign in front of our house within the next several weeks.

* In the mean time, I've filled out an application for mortgage help through Obama's plans to help homeowners. I was only able to finally get those done early last week, and I was told it could take about a month & a 1/2 or so before you've finally got a plan in place to help you out. But the ball is rolling. We'll still sell the house, but at least, if we can lower our mortgage somehow, the months we still have here before we find a buyer will be much more manageable financially.

* Sweetie is doing GREAT as always. She got her first school report card a few weeks back and did spectacularly! Her teacher's only real comment being that Sweetie hasn't formed any real friendships yet - she cares much more about what activity she's wanting to play than whom she's going to play that with. Not altogether a bad thing, I suppose.

* The Sweetie & Me family has recently taken up a brand new hobby - geocaching! We literally just started, with this past weekend being our first time out as geocachers. Such a fun way to spend some time together! We are all hooked already!

Well, that's about it. Thanks for stopping in to see if I've updated. I'll be back!... just can't be sure on exactly when that will happen. Take care!