Saturday, September 29, 2007

Hey look: They are actually called tonsils! I thought he was just comparing them to my tonsils (which are always enlarged, and an apt comparison). But when I talked to him again yesterday, he said it again, so I decided to look it up.

Who knew?

He thinks that there's a possibility of Chiari Malformation, which has a high CFIDS/ME & FM comorbidity rate:

The best known of these conditions is the Chiari malformation, in which the cerebellar "tonsils" (a portion of the cerebellum, shaped like the tonsils in the neck) extend several millimeters through the opening in the base of the skull (the foramen magnum) that allows the spinal cord to attach to the brain. This puts pressure on the brain stem and spinal cord. In a less well recognized but perhaps much more common condition known as cervical stenosis, the spinal canal appears normal but is actually too narrow for the spinal cord. Sometimes a condition called syringomyelia develops, in which a cyst grows in the spinal canal, putting greater pressure on the spinal cord.

Yeah, I don't especially like the sound of any of those things, or the treatments (which say things like, gee, I don't know - brain or skull surgery), but ain't gonna worry about any of that until I have to. Got an EEG this week, the neurologist the week after. I will definitely keep you posted!

Thursday, September 27, 2007

Thanks for the comments, guys - Yes, I'm following up both with further testing (an EEG and another MRI) and with a neurologist. No, my doc didn't have the specifics of what some of those results could mean for me particularly. More wait and see. By now, I"m good at it.


In other news, it's THURSDAY and that means The Office. Which is new tonight. Must now go watch genius! You should watch it, people. Always.

Wednesday, September 26, 2007

You know what I don't get...

when you go in for a specific test (for a specific reason), why is it never like it is on House, where they don't see what they're looking for, but they keep their eyes open for other things?

A few weeks ago I was undergoing some testing, and one of the things I had was an MRI. Now the MRI was originally meant to test pituitary function or somesuch thing like that, and it came back 'slightly abnormal/asymetrical, but no significant findings.' Whatever the hell that means. So, on Monday's appointment I went in with that understanding, and imagine my surprise when he starts talking about the fact that the veins in my left temporal lobe are 'highly enhanced' and that my cerebellum tonsils are enlarged. First of all, WTF? Because while I may have passed my intro to A & P in college, where we had to memorize the parts of the brain and all that, it was a while back, and I had to come home and make sure those things were located where I thought they were.

Secondly, there wasn't anybody who could've read this in the test the first time around? What about the MRI I had 4 years ago to test for MS? Could it have been on there, but, because they were looking for the lesions so common in MS, they didn't notice it? Could it have been there in the first MRI I had, back when I first got sick, 13 frickin years ago???

And thirdly, what the hell does it actually mean??? He explained that it might be causing seizures/mini-seizures, and it could definitely have something to do with my hypersensitivities (to light, smell, sound and PAIN), but he didn't really know why it would be like that, or if it were something new or something we'd missed before. It doesn't explain the fevers, he said, or the infections, or a ton of other stuff, but it certainly could be interferring with my daily life. My daily life? Ha! Yeah, I could see how mini-seizures could affect some of the things I've been dealing with - not sleeping, pain, falling down like I'm drunk.

It's so frustrating!!

But here's the thing that's most frustrating of all - I've got to go in for some more tests, and I'm afraid that this won't be it. That this will be just another wild goose chase the doctors have sent me on, and a swollen brain with enlarged veins (which sounds really impressive), will just wind up being one more thing that's wrong with me that they can't do anything for.

Tuesday, September 25, 2007

Because, even though I love Miss Zoot's design,

even us non-fashonistas feel like changing things up every now and again. (Plus, while I realize I probably can learn how to do it myself, I'd really rather not have to.)

Monday, September 24, 2007

Lil Girl (Youngest/Only Niece) --- Eatin her first cherry tomato, fresh from the garden

Originally uploaded by bbackprple

Or, rather, popping it into her mouth, sucking on it until it was soft, and then spitting it out when all the juices got in her mouth.

That's my favorite shot today, and my Best Shot Monday post... head on over to Tracey at Picture This, to check out some more wonderful pictures!

Friday, September 21, 2007

BOB Books Review

So, I'd committed myself to a review for the BOB Books Blog Tour, and my scheduled date for the post was Monday. I'm so sorry to be so late! Germs + me X (siblings with drama) = blech. So, without any further ado, here's what I thought...

First of all: >Mother Talk sent me these books to review, even though we all know I'm not a mother. I signed up as an extraordinarily involved auntie and, because of my experience working with young children and helping them learn to read, I was pretty excited to be a part of this review for BOB Books: I'd heard some great things about them from some of the homeschooling bloggers I frequent, and, even though I'm not currently working, I like to keep building my teacher's toolkit for when I'm eventually able to go back to work.

Learning to read involves a number of specific skills that have to be mastered - concepts of print, phonemic awareness, grammar, fluency, comprehension, etc - and these books focus specifically on decoding. Decoding is recognizing and distinguishing between each letter of the alphabet and their specific sounds. As you can imagine, it's pretty vital to reading.

The BOB books I was sent are series 1, for beginning readers, and focus almost exclusively on introducing the sounds of specific letters and how you blend them together to make words. Each book introduces beginning and ending consonant & short vowel sounds on the inside front cover, and then uses those letters and sounds (M - A - T) to put together a short word (Mat) in brief (2 - 3 word) sentences. There's about 6-10 pages per book, and the 'stories' they tell are quick and simple: these books are not long on plot, but that's also not what they're for, particularly. They're very reminiscent of basal readers (aka Dick & Jane books) or easy readers that we use in classrooms already to help kids decipher the sounds that each letter represents, within the context of a book.

I liked that they came in a set, and that each book builds on the skills and vocabulary from the last book. Lil Girl is only 16 months, but she liked the pictures and silliness of the stories (Mat sat on Sam), and Youngest Nephew, who's in 2nd Grade now, is a bit older than the age group these are most helpful for (Pre-K/K, any beginning stage reader), but he loved that he could read the whole set by himself.

The teacher part of me wants to stress the fact that you shouldn't use phonics alone to help kids learn to read: you need so many other things too - Parents who read/an environment where reading is respected. Rich and engaging children's literature, to help contradict the idea that 'reading is boring.' Time and patience and practice. But BOB Books are certainly worth adding to the mix, especially for kids who head into information overload when there's too much going on in a book - the lack of distractions here, the simple text and illustrations, will give them a better chance at grasping the necessary skills for reading, and the confidence that they can master those skills.

Tuesday, September 18, 2007

Oh, I don't know if

I am brave enough for this, even if I'm sure I have something that could win. Honestly: I look like a zombie. It's horrid.
I missed both My Best Shot Monday and my assigned day for a blog tour book review yesterday because I am trying to fight back against some germs before they take over my body (completely). Today's a bit better though, so I'm hoping to have one &/or the other up at some point.

Sunday, September 16, 2007

A little link-y love

Here's a post that I think you all should read:

Disability is a feminist issue

I've tried to say things like this, but I feel like Cara did such an amazing job of clarifying all the important points, so head on over and check it out.


Since we've been talking about Invisible Illnesses and all that this week, I wanted to highlight a site that has been an invaluable resource for me: Chronic Babe.

Geared toward young women with chronic illnesses (but certainly not solely for them), Chronic Babe has helped me in so many ways. I think, most importantly, it's made me to incorporate the Chronic aspects into my life. Helped me realize that having a chronic illness doesn't cancel out all the other aspects of being me. And that I can't just ignore or seperate the two if I'm ever going to be able to just live. The idea of being a Chronic Babe is not something I'd have even considered possible just a few years ago, and my relationships on the internet - not just with CB, but with the Spoonies over at the but you don't look sick boards and all of the BADD bloggers and other individuals with disabilities - have made this term, once so oxymoronic to me something I can - and do - embrace wholeheartedly. Helping me to not be ashamed of a part of me that I'm not entirely happy about, to claim it just because it's mine (even if I don't want it to be) is something I'll always be grateful for.

On a personal level, the Editrix of Chronic Babe, Jenni Prokopy, is one of those people who just manages to make you feel welcome, all the time. When she and her husband were recently hit during a microburst & their home was destroyed, I only wished I could've helped more.

Chronic Babe just celebrated it's 2nd birthday, and I consider myself lucky that I happened upon them almost that long ago. The articles and resources are amazing - The links there were my first introduction to Grand Rounds, as well as some important sites on coping.

Best of all, Chronic Babe handles serious and silly things - shows that anything that's part of a 'normal' life is part of our lives too.

Head on over at check it out - Happy Birthday Babes!

Friday, September 14, 2007

Invisible when...

So I've been living with my own special set of chronic illnesses for about 13 years now (ugh, next month is my sick-a-versary, again :( ), and they're unfortunately not as invisible as they used to be, because I'm not mobile without my wheelchair anymore, because I do show signs of my illnesses outwardly. However, there are still SO MANY TIMES that my illnesses make me feel invisible.

The theme of the week is that having a chronic invisible illness is a roller coaster : I sort of agree, in that any life has it's ups and downs. But the part about living with a chronic illness that feels most invisible to me is the in between times. Not the highs and lows, but the everyday, ordinary struggles that - just like with everybody else, disabled or not - I feel so many people don't see.

I feel most invisible on these ordinary days. On the "Oh, but you don't look sick" days.

In the times when all my friends are having housewarming parties and baptisms, and they (mostly) remember to invite me, but we all know I can't go.

When those same friends or family say things like "But it's only hair spray, and I put it on hours ago," or "But there's only three steps, and if you want, I can have my brother carry you up them," or "But the cat will stay in my room when you come over." Because they're not seeing me, not then.

Or when my sisters are planning nights out, and there's no question of me going. No contemplation of "would NTE like to go?" Because the answer, no matter how much I might like to, is going to be no - nighttime excursions are not on my menu, 28 years old or not.

It's when the funding for my disease gets funneled into some other disease's pockets, and there's no public outcry.

It's when I'm sitting in a restaurant, and the waiter asks my mother what I'd like for lunch.

It's when people don't see the effort it takes for me to show up to their party, talk to them coherently on the phone for an hour, or recognize the weeks I'll spend recuperating from a 'quick trip' to the store.

It's when taking care of the babies (whoever the babies are at the time, and however old they might be) wears me out so much that I have trouble breathing, thinking, eating, and yet that baby's parents always ask for "one more day" or stop by unexpectedly, not really seeing that taking care of their baby is what eats up most of my energy in the first place.

It's when the things that are a big deal to me - smells, visitors, germs - are ignored even by those closest to me.

It's when asking for what I need gets interpreted as being petty or overly selfish.

It's during the endless days of waiting and the parades of tests. When the people who love me get so sick of the non-answers - the only thing I've got to give them - that they just stop asking me how I am. As if I'm not just as frustrated, as if the not knowing isn't eating away at me too.

It's after a crisis has past - after I'm out of the hospital, or not throwing up on somebody's feet - and people seem to forget that I even exist. That I'm still here waiting.

It's when the get well cards stop coming, when there's no balloons or flowers. Or when there weren't any in the first place.

It's when somebody asks me what I do (for a living), and the only answer I can seem to come up with is "Survive."

It's when friends just disappear. Just fall away.

It's when I'm slogging through, trying to live, fighting for every moment, and nobody seems to notice.

These are the times I feel most invisible.

When don't I feel invisible?

Playing with those same babies, helping them learn & grow, or making them laugh.

Sitting in Zach's office, knowing that he's listening to every word, knowing that's he's trying.

When I know that anybody is listening - that they're interested and paying attention, and not just because it impacts them.

Writing here, knowing that people are listening - isn't that why you all write too?

So you know what I should do more of?

Tell people to come back for exciting posts and then never post anything at all.

Doesn't that sound like a fabulous idea?

(This would be a good place for some smilies, but I have no idea how to incorporate those into my site, so you're just going to have to picture me giving myself a big dope slap.)

However, if you wanted to know a little bit about having a chronic illness, it is worthwhile to note that they are totally un-fricken-predictable. But, in lieu of excuses, which just generally suck anyways, I'm going to get right to the point:

Hi, my name (here) is NTE: I have chronic illnesses: They suck.

Because it seems like only half of you can even see my task bar (I don't know why... any ideas on that would be most welcome), and that means you can't click on the nice little health round-up I've got there for you, I'm just going to fill in the basics.

Again. (So all of you regular readers might want to zoom right past this - I won't be offended: I'd rather skip over it myself.)

Here is my current list of diagnoses:

Postural Orthostatic Tachycardia Syndrome POTS - Which is basically a failure in the regulation of my blood pressure, heart rate and blood flow when in an upright position. Currently semi-under control - which means that I no longer pass out any time I dare to go from a flat position to an inclined position, but I still can't stand unassisted (unless I'd like to add to the collection of bumps & bruises I've currently got) or sit for longer periods of time without feeling quite ill.

Fibromyalgia or FM/FMS - This is where the pain comes in people. And holy lord does it bring the pain. Fibromyalgia is either - depending upon who you ask - a completely useless, catch-all term for pain that doctors don't understand the nature or progression of OR a medically recognized rheumatic disorder of indiscriminate origin with very few treatment options and no known cure. Either way, you're pretty much screwed.
There's much discussion over whether or not the diagnosis of FM for chronic, unexplained pain has - like the over diagnosis of ADD & ADHD in children in the past 15 years - just become a way to group people whose pain doctors just don't understand yet, and what that's doing for those of us who are suffering, but I'm not going to get into that right now.
For right now, let me just say that FM is about pain - in specific & laughingly labelled 'tender' points on your body, as well as a general, all over 'achiness' - This is often described in terms of the feeling you get when you have the flu, but I think it would be more accurately described as the feeling you get when you have the flu, but have also just run a marathon, during which you gave birth and were hit by a bus. That's the gist of the everyday, all over 'achiness' I feel. It's a constant weight & heaviness, like a coat made of pain, that you wear all the time, everyday. As you can imagine, wearing this coat also wears you out. There are a ton of other symptoms related to FM (and CFIDS), but for me, it's all about the pain.
My FM is, right now, the thing that I am most concerned about - often I feel like if I could just slip out of this coat, just for a little while, then a lot of my other issues would be much more manageable.

CFIDS/CFS, Chronic Fatigue Immune Deficiency Syndrome and/or (- although I know that there is now a big discrepancy between what I have been told and what the medical & patient communities now believe to be true, I'm going to go with the labels I have been given over the past 13 years and try to steer clear (for now) of the Name Controversy) - Myalgic Encephalomyelitis, ME - This was my first diagnosis, and, like FM, it is both controversial and a sort of catch all, only this time for unexplainable fatigue. The major symptom I've experienced with my ME/CFIDS is overwhelming, unwavering fatigue _ which, at some point, I've just gotten used to. It hasn't gone away, I've just become accustomed to it as my partner in life. We make allowances for each other. Say I want to go to my grandmother's birthday party; the fatigue says, "Ok, rest up for two weeks. And then for three weeks afterwards, we'll stay in bed. ALL THE TIME." It's not quite as accomodating as I might like, but what are you gonna do?
I've also suffered from stomach issues that are most likely related to the ME/CFIDS, as well as cognitive difficulties, sensitivities to smells, noises, tastes, and sounds, and the severe sleep cycle disturbances that are so commonly associated with this disease: Example - when I first got sick I slept for 18-20 hours a day. For months at a time. And now? I'm lucky to get 18- 20 minutes in a row. Ah, the joys of cyclic illnesses.

Hypogammaglobulinemia - an immune disorder that basically means my immune system is unable to ferret out and attack invader cells. It's an antibody deficiency, and it makes itself known with recurrent and serious infections. A mostly healthy person who is 28 will, generally, not have had pneumonia more than once. Will, most likely not get 12 sinus infections in one year. Will be able to fight off colds and not develop odd rashes from random bacteria. That is not me. I am the one who, when you sneeze three aisles down in the store, thinks "Damn... I better not catch that." This is a treatable condition, thankfully, but the treatments only semi-work for me, so far. My body doesn't feel like producing the antibodies, and so chooses not to. I'm stubborn, even on a cellular level, I guess.

And the interrelatedness of all of my illnesses cannot be overlooked - CFIDS/ME is often connected to orthostatic intolerance issues, like POTS. FM and CFIDS/ME are rarely spoken of without each other, their symptoms overlap and twist and tangle into unbreakable knots. Hypogammaglobunemia and ME/CFIDS share many characteristics. The fact that the doctors often don't know what is making one symptom occur - and that I can't just say, "oh, well, that's definitely the CFIDS/ME that's causing that" - makes treatment options much more difficult.

And, most importantly of all, to me - none of them have a known cause or cure.

I also have two more 'normal' - and definitely more common - invisible illnesses - Asthma and Migraines. Neither of those is visible, and yet they're much more accepted (both in the public and within the medical community), and much better understood than the other diseases I have. Having these illnesses makes it all the more difficult for me to understand the whole "but you don't look sick" mentality.

A person who has asthma doesn't look sick, generally: but they are. Migraines aren't visible to anyone else, but I haven't run into any doctors who doubt that they're a very real and debilitating disease. Pain, because it's so personal, because it's so subjective and hard to describe, seems less valid a symptom to many medical professionals and people I meet in the course of my everyday life. The same with fatigue. And with both of these issues, people's own experiences color their impressions of these diseases. Everyone in the world has felt pain before, everybody thinks "Oh, my back has been killing me for weeks," or "I've been that exhausted before, you just have to sleep it off." But that's not the way CFIDS/ME works, and FM isn't a pulled muscle.

There's a handy-dandy round-up of my major illnesses and diagnoses. (We'll leave the minor ones for now, thank you very much.) Hopefully this will help as I talk a little bit more about what it means to have an invisible chronic illness (even when it's not so invisible anymore).

Thanks, if you managed to wade your way through all of that! Happy Friday everybody!

Monday, September 10, 2007

Going for a ride

Going for a ride
Originally uploaded by bbackprple
We all know how hard it is to get everybody in a picture smiling at the same time, particularly when one of those people is a child. So imagine my surprise when this one actually came out with smiles all around! It's not perfectly composed (SisterCh and Sister K stuck their heads in from the back seat while I was trying to get Soon -to-be Sister-in-law and Baby Girl's picture), but I love it anyways. Her smile, my sisters being the goofs that they naturally are - it just works for me.

A quick aside - today kicks of National Invisible Chronic Illness Awareness week (a part of National Chronic Illness Month - seriously, who knew?), so come back all week long for some important posts about Invisible illnesses, living with chronic illness, and a billion other things. Thanks!

And head on over to Picture This for more Best Shot Monday pictures!

Saturday, September 08, 2007

Why is it so hard

(for me in particular, but I'm guessing for a lot of you too)

.... to make good decisions?

.... to do the things we know we should?

.... to keep track of time (how the heck did it get to be Saturday night already)?

.... to get past hurt feelings?

.... to get organized?

.... to figure out TiVo? (Probably the manual would be helpful, but SisterJ lost it)

.... to stop taking responsibility for other peoples' issues?

.... to believe in myself?

.... to tie a bow so that it looks like they do on TV?

.... to get the fricken answers I need?

.... help other people see themselves as clearly as I see them?

.... to have some sort of filter that protects me from being overwhelmed?

.... to recognize - and then STAY WITHIN - my limits?

.... to just be honest and stop holding things back?

.... to stop being afraid?

Crap, I'm in a mood tonight. Fighting with SisterCh over her feelings for Loser Boyfriend, who she was "totally over" less than a week ago, and now ... not so much. Loser Boyfriend who was verbally abusive (and I'm pretty sure physically, too). Loser Boyfriend who made her miserable. Who she turned into a completely different person in order to be with. Since they broke up, she's come back into herself - laughing, honest, kind, cranky, selfish, sweet; all by turns. Herself. And now, he wants her back. He's changed. She's changed. Maybe they can work it out.

It makes me want to throw up.

I don't understand that there were good times. I don't understand how wonderful the good times were. I'm a "person without a heart," because I can't see that her memories of good times matter to her enough for her consider going back to him, to consider breaking up with the boy she's started dating (who is 'different' and 'not him').

I guess I must be a cold, heartless bitch, because I don't care how many 'good times' you have, if you also have to put up with him throwing furniture or calling you a whore. I guess the fact that I've been sick and "never had a man in my life" (God, do sisters know where to stick the knives!) does mean that I don't know anything about relationships, because I don't think that it's reasonable for him to put his fist through the wall and tell you he's changed because he's "made an appointment to talk to someone." I guess the fact that he isolates you from your family - example: NOW - because we "just don't understand!!" is not a clear DANGER DANGER DANGER sign.

I guess I really am just plain clueless.

Sorry for the random rant: nothing I can say to anybody here, as SisterCh told me in confidence about all of this. Oh, they know we're fighting - I'm a ball of tension when fighting with someone - but I can't just scream: "She's making the WORST decisions of her life because she's scared. And lonely. And she wants something that never really was any good in the first place!!!"

Thanks for the ears.

And any advice would be gratefully received.

Tuesday, September 04, 2007

August's Perfect Post

Perfect Post Award for August 2007

In honor of Chronic Illness Awareness Month (which is September, in case you didn't guess), and because this post is sooo right in sooo many ways, I'm awarding my Perfect Post Award for August to the glorious Goldfish for her post on Chronic Illness: Experience is Cheap.

I can't explain how many absolutely fabulous things she says in this post, things I struggle with every single day, and things I wish that other people knew. I'm just going to give you some of the things that rang most true for me -

  • The thing to realise is that the medical side of things is about a condition you happen to have, not about you. This may sound obvious to anyone who hasn't been ill for any great length of time, but it isn't.
Damn right it isn't. It SEEMS obvious, it seems right, it seems like something that you wouldn't have to tell yourself over and over and over again, but... that's just the way it works out.

  • You mustn't stay angry with an illness or indeed the body which you may feel has let you down so badly. It's never going to say sorry, buy you a bunch of flowers and attempt to make it up to you
Well, why the hell not? Her I've been waiting all this time for an apology??? No, seriously. I'm still angry, but I'm not always angry, and I think that's an important distinction.

and finally -

  • Sometimes you can think you are fighting the good fight when really you are running away from the problem. You might prefer to push yourself instead of resting or pacing, thinking this the brave thing to do when in fact it is slightly idiotic and nobody is going to admire you for running yourself into the ground. Eventually, you may get to a place where you don't think about your illness very much at all, but you don't get there by pretending it doesn't exist.
Oh sweet little baby Jesus, why didn't I read this 13 years ago? And why do I still need to read it today?

Please go over and check out the rest of the pretty Fish's wisdom, and head on over to Lindsay and MommaK for some other spectacular posts.

Monday, September 03, 2007


Originally uploaded by bbackprple
Here's my Best Shot Monday Shot... Baby Girl and Dad 'communicating.' Old phones are a big draw around here, although she mostly just holds it at her ear and walks away. The talking part? Not so much.

She's taken to calling all her Aunties (the 4 of us on this side, anyways) "Baaaaaaaaaaby" when we're not where she wants us to be. "Baaaaaaaaaaaby," she calls, wandering off down the hallway in search of whoever is not in sight. But she can say Papa, so this conversation was a little bit easier.

Happy Monday, everyone! Head over to Tracey's at Picture This for a truly gorgeous photo and the rest of the submissions.

An aside - Can you guys see a horizontal title bar underneath the West Wing Quote? That has links and my e-mail address? Because I can see it in my template, but I noticed I didn't see it when I clicked the link. (Ugh Html is soo not my language) Thanks!

Sunday, September 02, 2007

After some ridiculous testing on Thursday and Friday, some ridiculous feeling sorry for myself & some very kind, thoughtful, surprising and not ridiculous packages that showed up at my door, I managed to keep a promise to Youngest Nephew Friday night, and we had ourselves a sleepover before school starts up again.

And I realized that the craziness of the hours we've watched them this summer (long, strenuous and exhausting for me) have been worth it. Because he's still my special boy, and when he's not here I miss him so much it hurts to breathe sometimes.

I also realize that admitting it 'out loud' makes me uncomfortable, because I feel the need to explain that while I understand that his parents had the right to move 45 minutes away (instead of 3 minutes away), I'm still hurt by it. I still feel wounded by the fact that we can't see him everyday, and sometimes, during the school year last year, it was almost a month between in person visits. And yes, I know that sounds reasonable to other people: it even sounds reasonable to me, but it doesn't feel reasonable. At all.

This is a boy who, like his sister now, Mum and I watched almost everyday when he was an infant. Even when I was living at college, I saw him at least 2 times a week. I helped potty train him, I'm the one who taught him how to make the pillow/blanket forts he loves so much; I could list all the little things that make up our connection, but they still wouldn't describe it.

They wouldn't describe how hard it was, at times when Big/Only Brother's hideously ugly temper was roaring or Soon-to-be Sister-in-law's inconsistency was showing its face in dangerous ways, to let him go home with them: His parents! Another admission that makes me feel exposed: I know I'm his Auntie, I know that they're good parents who love their kids immensely and do their best. And I know it sounds hideous, written down like that, as if I wanted to replace them... which wasn't it at all. I just wanted them - still want them - to see how special this boy is. To see his generous heart and be careful of harming it. To recognize his brilliant mind, and be sure to not let him use it to manipulate them into stuff that's not good for him. To acknowledge that he feels hurt or scared or lonely underneath his anger or whining or pouting. Which isn't to say that they don't see all that - it's just there's been times when they haven't.

So, yeah, anywyas....

This sleepover was like medicine for me - even though I feel like crap physically, even though it was horrible timing and I probably should've rescheduled - having the one on one time with him, getting to see him laugh at the books I chose for us to read together or watching him giggle at the Dinosaurs while Junior hits his Daddy on the head with a big "Not the Mama!" was definitely worth today's pain.

Even if I'm also "Not the Mama," being this kid's aunt is a balm on my heart.

I hope to have some pictures up either today or tomorrow, so you can see our adventure - We went out for Ice Cream! We stayed up till 10! We ate breakfast at (groan) 6! Some of us have enough energy to power the Eastern Seaboard! And some of us were so exhausted that they sent the energized one to Costco with his Grammy!

Hope you're all enjoying your (Labor Day in the US) weekend!