The first time I saw a brain, a real brain, suspended in some greenish liquid at the front of my gross anatomy lab, I stood there, staring at it for a good long while. I was long past being disgusted by the organs of the human body, and seeing the folds of the creamy white tissue struck me only with a sense of wonder. This was it, right there: all that you were, all that you thought, all that made you you was right there in that innocuous looking organ.

Really, it could have been a football for as glamorous as it looked.

But to know how it worked, studying the nuances of neurology, that is poetry. All of the mysteries that we still do not know about how the synapses fire to make one person want to maim and dismember and one person want to paint the Sistine Chapel, that is beauty. The smooth folds folding seamlessly into each other made up separate and distinct parts of the brain and instinctively I rattled them off in my head as I examined the brain in the jar: the cerebral cortex, responsible for how we are feeling, our emotions. Those that make someone laugh or weep, smile or scream, right there.

The parietal lobe, which is how we use all of our senses at once to make decisions, the back of the head responsible for sight, the very sense I was using to examine the brain I was so enthralled by. Without it, I wouldn’t be able to drive a car, see the deep brown of my son’s eyes, the bright red of the fall leaves outside of the classroom. One by one, I observed all of these structures on that brain, carefully preserved in formalin in a jar labeled ABBY NORMAL.

How could something that looked like a Nerf ball be so mystifying and so shockingly resplendent in it’s simplicity at the same time? Something that made each of us who we are should have looked unique, special, like a jewel and somehow, the more brains I saw, the more I realized that they all looked pretty much the same.

Maybe it’s what we do with those hunks of white matter that contains the beauty, because with the exception of the cerebellum (which is surprisingly beautiful), it’s a highly understated organ, especially when compared to something flashy like the kidneys.

When my daughter was born with part of her brain hanging jauntily out of the back of her head, the doctors pretty much shrugged their shoulders when we asked what that meant about her future. While she showed no signs of neurological damage, she could be profoundly normal or profoundly retarded, it simply wasn’t something that could be determined by a blood test or an MRI.

Up until she was a year old, Amelia was followed by Early Intervention, who came every couple of months, tested her, declared her normal and left. When she turned a year, I figured it was probably time to let them close the case on her for now and promise to make a call back if something changed. I know the drill with special needs kids well enough, and her medical diagnosis is an immediate qualifier for assistance.

It’s taken me until now to realize that there is actually something wrong with her beautiful brain.

Amelia has no words.

She has no words.

No glorious words, the very thing that I make my (pathetic) living from, she has none. I’ve always derived so much happiness in putting together combination of words to titillate, horrify, or move people, and she has not one word.

She’s had words before, they’ve slipped out of her mouth for a couple of days until it appears that she forgets them and goes back to shrieking and grunting to get her point across. In many ways, this terrifies me more than seeing my mute autistic son did, because it seems as though she has words, then loses them again.

It’s time to call the specialists back in and help my daughter find her words.

For good, this time.

I have a lot of delicious combinations to teach her.

When I started blogging, it was mostly to make other people laugh and poke fun at the few blogs I’d ever seen. I co-blogged on my first blog, Mushroom Printing, with my home-slice Pashmina and I’m pretty sure that the only people that read it were people that had either seen my yapping maw in person or rampant spambots trying to sell me knock-off drugs at bargain basement prices (how could I resist? I mean, really).

I’m still not sure why I ventured out on my own.

I guess I’d found that I really liked to write.

I was lonely. Desperately lonely.

The people who liked stories about queefs and analogies about penises that looked like “a baby’s arm holding an apple” weren’t the same people who could possibly relate to how cripplingly lonely I now was, stuck at home with an infant who wouldn’t be held by anyone but Your Aunt Becky and a husband who was home approximately .0004 minutes a week.

I wrote and I wrote and I wrote. Of course, when you start a blog, readers don’t come flocking, and even after I’d gotten some readers, I’d never connected that people actually READ the words I wrote.

Even now, when I sit down to peck out a post on my keyboard, I don’t actually imagine that the words I write on my own screen are read by anything other than spambots. I know you’re out there because I keep up with most of you on your own blogs, but I still don’t realize that you know me.

And that my words might actually mean something.

My daughter was born in January of 2009 with a neural tube defect called an encephalocele. It’s a fairly rare defect of the bones of the skull. When she was a wee fetus, no more than a blob of cells really, those bones didn’t fuse properly and part of her brain developed outside of her skull.

Somehow, this was undetected throughout my pregnancy, despite many ultrasounds and various screening procedures, and when she rocketed into the world, all hell broke loose.

I was lucky enough to have my Band of Merry Pranksters here to hold me up when I was sure that the world was collapsing around me. In a room that had previously been full of oxygen, I could no longer breathe and you all brought me tanks of air, and stroked my hair, telling me that it was okay to be afraid because this was some fucked up shit, indeed.

Every email you ever sent to me, all of you who reached out to me during those times and every other time, telling me about your own children, how they struggled and how scared you had been, I saved them all. Maybe I didn’t answer you because I couldn’t; I was literally paralyzed on the couch, I cried every time I got one.

I cried because I wasn’t alone anymore. It didn’t matter where I was, I wasn’t alone.

I’ve never forgotten that kindness you continue to bestow upon me and I never will.

This January found me celebrating the my daughter’s birthday while struggling mightily with some Post Traumatic Stress Disorder related to her birth. I was floundering, clawing against the darkness and trying to find my light when I got an email.

Someone, by chance, had happened across my blog, searching for “encephalocele” or possibly “neural tube defect in babies.” Someone had just found out that their child, their 18-week fetus had what appeared to be an encephalocele and had been desperately searching for a success story on the Internet to give them hope.

I doubt I’m the first blog you come across when you search for those terms, but there in Google, somewhere, my blog, my profanity laden blog was found. And you can find no greater success story of someone kicking the ass of an encephalocele to give you hope than the hope of my daughter, Amelia Grace.

This is why I am so proud to be a March of Dimes Mom. This is why I am so proud to be a blogger. This is why I am so proud to be Your Aunt Becky and have a Band of Merry Pranksters to love on.

The email I got was from Nikki, who is now one of my best friends. I mentioned her in a Go Ask Aunt Becky, asking you guys to spare her and her baby some great thoughts and prayers back when she’d emailed me initially.

Well, Internet, Your Aunt Becky is an AUNT!

This is Lily Grace and she is my niece! Doesn’t she look like me? (just nod, Pranksters)

Lily is doing fantastically, neurologically intact and clearly adorable as hell, which goes without saying.

Lily is having neurosurgery today, a similar procedure to what Mimi had, although she does not have a true encephalocele. Her neural tube defect is filled with cerebrospinal fluid only, which is considered to be a win if you’re a neurologist. Being full of brain matter is much, much worse, so YAY for cephalocele or meningiocele, or whatever fancy thing the kids are calling it these days.

Today, Pranksters, I’m asking you to spare some love and light and prayers for sweet baby Lily Grace, who will, no doubt, kick brain surgery in the teeth like her cousin Amelia Grace, for whom she is named after (in part).

And I want to, once again, thank you for being there. Maybe I’ll never truly believe that actual PEOPLE read my blog, but I do know that the connections that I’ve made, the friendships I’ve made, those remind me of something that I desperately needed to know. Something we all need to be reminded of.

Every word we write, every tweet we send, every connection we forage, every friend we make, every breath we breathe, we are none of us alone.

So I’ve frequently waxed on about how my daughter kicked neurosurgery in the balls because, well, anyone who undergoes brain surgery as a 3 week old and walks off with as wicked a scar as my Mimi did deserves to say that about themselves (or have their mother brag about it). Her scar is such that she’s going to have to come up with some kind of wicked story like, “bar fight” which is my go-to story when strangers ask.

Trust me, I get some looks.

Later, I said that Mimi kicked ass because she beat a diagnosis that often kills babies, or leaves them severely retarded. She’s entirely normal, if not a bit feisty, which, again, kicks ass.

What I didn’t count on was that my daughter would be a bruiser.

Sure, my mother often said that I was born “smoking a cigar and barking out orders” but I sort of thought that she meant that I was a short, fat, balding bookie kind of baby. I don’t know why I always pictured myself as The Penguin from Batman, but I did.

I didn’t think she meant that I was a BRUISER. Apparently, THAT was what she meant, not that I was a villain-baby, because to hear her talk about it, she STILL shudders when she describes me as a baby.

Maybe that was why my first word was “fuck.” I don’t know. But it does explain a whole lot about my personality now, doesn’t it? (just nod, it’s easier)

But that would be my daughter, who is, apparently, myself, who is, without a doubt, kicking all of our asses to get what she wants. It doesn’t really matter WHAT it is, she’ll fight you for it. Ear-bleeding shrieks followed by tiny fingered pinches, then followed by a gaze from those beautiful, luminous eyes, I mean, you IMAGINED that tantrum, didn’t you?

Nothing this sweet looking could be such a devil in disguise:

Underneath that sweet, cake-eating exterior, she’s plotting how to steal your wallet AND car-keys. Amelia, she’s a thug-a-lug.

Really, I thought that my testosterone-fueled middle son would have been the member of the Sausage Factory to contend with but it turns out that his sister is going to be the member of the family that will be all DROP AND GIVE ME FIFTY, SOLDIER. Mimi, who will probably drop the fluffy sounding name and go by the more refined sounding “A-Dog” will make an excellent drill sergeant where she will inflict her torture on her troops so much that they will have nightmares that she is standing over them, pinching them.

Of course, she will be standing over them, pinching them while they sleep, because she is THAT kind of bruiser.

I’m wicked proud of my ickle A-Dog, even though I’m sure eventually she’ll try to cut my hair into a regulation buzz-cut every time she sees me, which is fine, so long as I don’t go to sleep (Aunt Becky doesn’t sleep, she waits). Because I bet she WOULD do it while I sleep.

It’s a good thing, I think. The world needs more strong, fearless, smart, pinchy females to stomp the earth in their combat boots making everything their bitch. Amelia will be like Chuck Norris, only cuter.

Just don’t tell her I called her cute. She’ll punch me in the throat.

Fear me world, because I have come to CONQUER you.

Once I finish my juicey.

—————

At Toy With Me, I’m talking about my BRILLIANT plan: Peckers of the Caribbean.

I got a bill in the mail last week, which is highly unsurprising, because between my “Get out of -ologist free card” I’m pretty much always sending off some payment or another. So it was with exactly NO emotion whatsoever that I opened a bill from the big umbrella corporation that is home to most of my doctors.

When I put it THAT way, it sounds so sinister.

Anyway.

I opened up a bill, looked at the dates of services, squinched up my eyebrows, wondering how my daughter had walked herself to the doctor, and then looked BACK at the dates of service and realized they were asking for a co-pay from last year.

From one of her many pre-surgical neurologist appointments. The dates just happened to coincide with this month, minus a year.

Somehow, in all of the hustle and bustle of taking our daughter to and from the doctor every day or two, our daughter–whose age was still measured in days–I’d somehow forgotten this one, single co-pay. Everything else has been long paid off, all the receipts and insurance pre-authorizations shoved into a manila folder somewhere.

It’s marked maybe “Amelia.” Or “encephalocele.” Or maybe it says nothing. It could say “Happy Birthday, Steve;” I don’t actually know. There are thousands of cross-sectional pictures of her brain in that folder too, should she ever want to see how her skull wasn’t properly put together, or where her brain hung out of the back of her head.

I thought about what a difference a year makes as I wrote out the check yesterday, because it’s been almost a year since my daughter had her brain surgery. I’m the same person who wrote,

“I cannot break this feeling of doom and foreboding. I cannot imagine a life past next Thursday one way or another. I cannot believe that I am lucky enough to have this baby AND KEEP HER.”

I wish I could go back and give myself a huge reassuring hug because I remember how horribly terrified I was that she was going to pass on the table. If I could do anything, I’d go back and do that.

She kicked brain surgery in the balls on February 26, 2009:

(she was very, very, very swollen from surgery)

And here she is now, my daughter, the girl with curls like a halo. The one who regularly breaks the bones of her foe and then sucks down the marrow for a snack. My ass-kickin’ little girl.

Not to be outdone by her oldest brother, she helps wash walls, even if it’s only with a wee Playmobil brush. Also: planning on how to remove that wall with her teeth. Because OBVIOUSLY.

She even helps with laundry. If by “helping” you mean, mischievously throwing all the “too small” clothes I’d sorted carefully out all over the house with her brother so that they could roll around in them. Which, I have to say, may have made my too-small heart grow 30 sizes.

Oh Amelia Grace, how wonderful life is with you in our world. We couldn’t imagine it any other way.

One of the ways that my friend KC suggested that I think of Amelia’s encephalocele was that her brain was just so full of awesomeness that it just..exploded out the back. Obviously one skull cavity wasn’t enough to contain all that awesomesauce. She might have been onto something there, because the kid is wicked-smart.

Or, at the very least, she’s my last hope. The shining light of intelligence and common sense in my house. The last bastion of all that might be right in my house.

My eldest, Ben, has never had a whole lot of common sense. He’s the kid that would probably Superman jump off my two-story house with a sheet tied around his neck if he had any more imagination. Thank the powers that be that he was born with as much imagination as I was.

I mean, I’m the person who WANTED to have an imaginary friend but couldn’t even do that. I didn’t have enough imagination to have an imaginary friend. YEAH. Obviously my kid.

Alex, though, I thought might whip him into shape, since he has Ben doing his bidding. Alex, even at 2.5, is an evil mastermind of a child, so I figured that he’d be the brains while Ben was the brawn.

Turns out Alex is mini-Chris Farley. He’s the kid who throws himself into walls on PURPOSE only to bounce off, hop back up and yell “I’M OKAY!!” When Dave’s says he’s my clone, I’m not entirely sure he’s being flattering.

My faith in Alex steering Ben into perhaps having an evil empire where they, oh, I don’t know, maybe made me boat-loads of cash while being evil somehow screeched to an audible halt the other day.

Mimi and I were playing trains in one room, and I watched as my son’s came in and mysteriously grabbed a couple of blankets and ran back out. I waited a couple of minutes and then yelled, “what are you doing?”

“Alex set up a slide!!” Ben happily replied to me.

Shockingly this did not make me feel any better.

Mimi and I followed them out to the other room where, in fact, Alex had set up a slide and we watched as the two lug-nuts we love so dearly slid off the back of the arm of the couch onto the floor below.

Onto their heads.

My son’s were sliding from the couch onto their heads.

Happily.

No one was crying or complaining that it hurt; no. They were just using their thick skulls and faces to wipe the floor with. I swear I have never been so flabbergasted. Let’s be clear, my own IQ might rival that of peat moss, but I have never had the idea to use my face as the landing spot for falling from heights.

As soon as I recovered from my shock, I stopped them.

Then I informed my daughter that without her, her brothers might be lost forever, a couple of goons stuck picking their noses and jumping off things in the misguided idea that they can fly for the rest of their lives.

Let’s hope that she uses her power for GOOD and not evil.

——————-

Sunday was the anniversary of Mimi’s discharge from the NICU. It was still a turbulent couple of weeks before we knew anything about anything, so it wasn’t like it was the anniversary of things being all right again. I mean, if your kid is sprung from the NICU, you’re pretty much grabbing her and getting the hell out of there.

I’m having a hard time talking about all of the chaos surrounding her first weeks of life, but I’m not having a hard time expressing my gratitude. With all of your help and support, I was able to turn what was a horrible, devastating time in my life into something else.

A couple of months ago, you helped vote for me in a contest with a cash prize. I promised I would donate that to the March of Dimes. Because the one bright spot in the whole fucked up situation was knowing that Mimi and I could help other people and other babies.

We are.

I officially became a March of Dimes Mom.

And I donated my winnings to the March of Dimes. I’d show you a receipt, but I figured you could just see that $250 was added to Team Mimi’s March of Dimes widget.

So thank you. All of you.

Mimi says, “Upon further inspection, cupcakes are deemed satisfactory.”

(why yes, yes, that is frosting in her eyebrows)

And for my work with March of Dimes, I was awarded this nifty button from Give it Forward, which is a sweet ass medical fund-raising blog. So thanks, guys! I’m all a-flutter!

Yesterday, our Early Intervention therapist came over to evaluate Amelia and for the first time I was pretty sure what she would find.

I was right:

My daughter is clearly an Evil Genius.

I have no doubt that in several years, when this is really all in our rear-view mirror, and she’s taking over the world from her bedroom, plotting and scheming, I’ll laugh when I remind myself that I ever thought that she might not kick the world’s ass.

I don’t pretend to understand how or why and honestly, at this moment, I’m still in shock. I cannot believe the statistical bullet that she dodged. I can only imagine that she was put on this earth to do Big Things.

As for now, my daughter is no longer in Early Intervention. She’s still eligible, thanks to her diagnosis, but she no longer needs the evaluations, so I had her therapist close her case. She never actually needed any therapies.

So look out, world, Amelia’s here and she’s ready to kick your ass if you stand in her way. Sweet as pie until you fuck with her, that’s my daughter, and don’t you forget it.

You should totally read my interview with my homie Sci-Fi dad: “Thinking is Hard” here. And my Slate.com interview ran simultaneously here, on The Happiness Project, which is a really neat blog run by my friend Gretchen. She’s a thousand times cooler than me, so you should read her.

And then I need more people to interview me because I am officially done with interviews, except those that I conduct in my head. SO SOMEONE INTERVIEW ME. PLEASE.

———————

Every year when my son Ben has to write a “This Year I’m Thankful For” letter, it reads sort of like this:

Dear Mom and Dad,

I am thankful that you buy me sheets. And blankets.

This would lead you to believe that I have him chained in the basement somewhere, perhaps duct-taped to a wall, shivering, only to be tossed a blanket when I’m feeling particularly benevolent. And well that is obviously true, it’s not.

That, of course, written by the same child who recently sent home the answer to the question, “Where would you take Mom for her birthday?”

McDonald’s because it’s my favorite and we eat it every day.

I may have junk in my trunk, Internet, but I do NOT eat McDonald’s EVERY day.

So it’s clear that my son, while he’s fanciful, is also pretty full of The Awesome, because that note is SO on my fridge because I laugh every time that I see it. Not only did he not answer the question because he didn’t pick out my favorite place, he also told his teacher that we eat fast food every day.

I’m thinking we’ll watch Super Size Me for Thanksgiving. Should be very uplifting, I’m thinking. Then it will make me very hungry.

Today is the day before American Thanksgiving, though, and because no one is actually going to be reading blogs tomorrow, save for my spam bots, which are either sending me really punny jokes, insulting me, or selling me knock-off prescription drugs, I figured that today is probably the day to Be Thankful.

And since the only person in the house to regularly write stuff ABOUT being thankful is 8, I don’t exactly have a killer model to choose from unless you want to hear how much I heart q-tips (orgasm in my ear!) or bath towels (orgasm on my ass!).

So I’m going to buck Ben’s model and go out on my own here and surprise the shit out of all of you.

Your Aunt Becky is thankful for this year.

Probably one of the worst, hardest years of my life so far, (made even worse by the Eggo waffle shortage!) and if given the option to have it any other way, I’d say no.

Because even in the darkest times, when I thought that I was suffocating under the weight of what I was carrying, when my fears crushed my chest and it was all that I could do to breathe in and breathe out and the rushing in and out of air seemed to fill the whole world and I didn’t know how I was going to go on, I found myself.

I did go on.

Seconds turned to minutes turned to hours and I lived and grew in those spaces between where I thought that I was going to burst apart at the seems, the fear, the weight, the terror pressing down. The days when I hurt so badly that nothing anyone could do ever helped, and my throat felt tight and the tears were always so close, those days eventually wore away. Slowly, they drifted away.

In their wake, I stand now, a different person.

I’ve lost friends, lost respect for people, I’ve seen who will stand beside me, and who is content to stand back. I am not who I was and I am thankful.

Today, I am thankful for my daughter Amelia, who, in her 9 months on the planet, has shown me more about who I am than I have learned in the 29 years before her. My sweet cinnamon girl, my Emma Gracie, the one who lived, my only daughter, the girl with curls like a halo, for who you are and what you have taught me and the light you have shown me, I am thankful.

Today and always.

I realized yesterday, as I was responding to comments, (which is what makes me look like I get a zillion comments, FYI, every response I give adds a comment) that I probably didn’t explain properly to a good chunk of my readers who came into the story pretty late in the game.

I showed you a picture of the back of my daughter Amelia’s head after a post about my lame, clumsy ass and made a joke about a baby bar fight over my integrity. This would probably lead you to believe that her scar was the result of some sort of accident, as the post implies, because I don’t assume that most of you have read back into the depths of my pathetic archives.

Mimi was born with a previously undiagnosed birth defect called a neural tube defect.

What this means is that sometime during the first month of pregnancy, the spinal cord (called during this stage of life the neural tube) didn’t fuse together properly . It can happen anywhere up and down the spinal cord, causing a condition like spina bifidia, where the delicate spinal nerves poke out.

Or, an encephalocele, where the skull is malformed, and the brain develops outside of the skull.

Like this MRI slide of my daughter’s brain, taken 2 days after she was born.

The full story here, here, here, here, here, here, here, and here.

(what, ME long winded?)

On February 26th, 2009, 2 days before our daughter celebrated her 1 month birthday, we checked into the hospital to have part of her brain removed and her skull repaired. The surgery was a complete success and while the scar takes up most of the back of her head, it’s part of who she is, just like the plate in her skull.

We’ll never know why it happened to us because that’s not given to us to know, but I do know this: somehow what I was given was a platform and a voice and I intend to use it as best as I can. Because I can’t believe this all was in vain. I just can’t.

So, this spring, I’m going to Walk For Mimi in the March of Dimes March For Babies, bug the ever-loving SHIT out of my family to donate (don’t worry, you guys are safe from me here), and beg YOU to help me with this:

I’m a purger.

I can hardly go a week without finding something to pass along to someone else, give to the Salvation Army, throw away or recycle or otherwise dispose of. This is probably a good thing because once, while we were moving from our condo in Oak Park to our current house, I found a receipt that Dave had saved from Target.

Curious as to what he had bought that he had so steadfastly guarded for so long, I saw that it was 3 years old and had 4 things on it: a plastic garbage can, beef jerky, Fritos and…wait for it, wait for it….

…..

…..

…..

kitty litter.

Oh yes. You read that right, Internet.

Thank sweet merciful sweet baby Jesus in heaven hallowed be thy Halloween name that he had carefully thought to store that receipt so lovingly on the floor of his office and move it with him not once, not twice, but three times since then.

Before you call “Hoarders” on me, a show that I cannot watch because I think that I would physically hurt myself either clawing at my skin or eyeballs (and because I don’t find people with obvious mental illness really gosh darn hilarious television), it’s not that he was saving it because he had any attachment to it, it just never dawned on him to throw it away.

Just like it never occurred to him to get rid of his box of cassette tapes that I personally lugged from apartment to apartment and I finally lugged DOWN to the dumpster after I realized that we didn’t own anything to play Milli Vanilli’s greatest hits, (an oxymoron of a tape if I ever saw one) any longer.

(Although in the interest of full disclosure here, I still sing “Blame it on the Rain” in the shower)(what? Like you don’t.)

Lately, I’ve been itching to purge my house of stuff, and while I have managed to go through several of the cabinets in the kitchen, ridding myself of such awesome condiments as a mysterious can of “Kraut” I have an entire genre of stuff that I cannot seem to go near:

Baby Stuff.

You see, my uterus, it’s vacant.

With the exception of an IUD, should Daver continue to be “too busy” to get his vasectomy, I’m done having children. 3, like that wily School House Rock says, has always been the magic number for us. Although I’d always imagined having an assload of children, Dave assures me that 3 kind of IS an assload of kids.

If anything, skating so closely by with Amelia’s neural tube defect reminds me of just how fragile life is and how fucking lucky any of us are to be walking around upright, presumably not dragging our knuckles, slack-jawed and drooling (unless, of course, you’re me, in which case this IS the norm).

I’d read somewhere in my scant research about NTD’s that they are more common in siblings, which reminds me that I must do more research for something I’m writing for the March of Dimes, and since I’ve been on folic acid since dinosaurs were my classmates, well, I don’t know. Would you want to risk that one?

(that really wasn’t up for debate)

Dave’s done, and I’m pretty sure that no matter how many crotch parasites I popped from my delicate bits, I’d always be sort of wistful for one more. Just one more.

Chicago has 2 seasons: Balls Hot and Balls Cold and last week it went from being Balls Hot to Balls Cold and I noticed that my daughter had nothing to protect her rolling rolls from the searing wind.

I also noticed that denial is a pretty powerful thing: she’d been pretty quickly outgrowing her 6 month onesies (she’s 8 months old now) to the point where she was regularly popping open the snaps of the crotch as she scooted along the floor.

I hadn’t wanted to see that.

Just like I hadn’t wanted to go through her clothing bins to sort out the teeny tiny clothes and hats because unlike the last time, this really was The Last, Last Time.

Never again will one of my children wear that frilly dress or that spotted onesie with the frog that Alex used to wear or the hat that was Ben’s or the pink sweatshirt that I bought with my friend Steph when I found out I was pregnant with Ben who I just KNEW was a girl that I’ve carefully saved for my daughter for 8.5 years.

Those wee hats and tiny mittens won’t go on my gnome-like babies, and the bassinet that we so carefully picked out for Alex will have gone completely unused by any of our kids.

I know in my heart that I prefer my children to be children rather than garden slugs, but there’s just something so…sweet about a new baby that you just can’t get back again. I look at pictures of all of my babies as ickle babies and I can’t believe they were ever so small.

I’m not going to let their things go, though, like I normally would, chomping at the bit to get it out of here. For now, all of those memories sit in bags in Alex’s room along with the broken swing where Alex slept for the first 7 months of his life and the bouncy seat where Amelia spent several of hers.

I hope that the smell of their babyness will stay there, in the fabric, so when they’re big and gruff and smell like the woods and grass and dirt and rocks, I can go and grab a bag and open it, and inhale that sweet baby smell, the essence of their babyhood and where they began.

And remember when they were so small and good and when I could fix everything with some warm milk and a cuddle and a blankie. When I could stick my face in their neck while they slept to breathe in their smell so that I could carry that with me as I went about my day.

When we could curl up together like peapods, just the two of us against the world.

I hope that will always be enough for me.

Why Aunt Becky, I can hear you exclaim, you look positively AMAZING for having pushed what appears to be a 30 pound 4.5 year old out of your cootch!

And I will tell you, there, there, Internet, this is what happens when you have children when you are a broke 21 year old: you don’t have any digital pictures handy.

PLUS, you look WAY better in postpartum pictures this way.

Notice how much BETTER I looked in the picture with Ben than I do in this one taken after giving birth to Alex?

Juuuust kidding. Wear a condom, kids. Not kidding. No glove, no love, okay?

If you look closely, you’ll see why Ben is The Person of The Year. This is Ben meeting Alex. Look at Ben. Now look at Alex. Ben still adores Alex. I do not know why.

Ben deserves a medal or something.

And lastly, my Cinnamon Girl. My sweet baby Amelia. My last, last one.

In a rare moment of altruism and because he happened to come across a set of *ahem* incriminating photos of *ahem* me that he *ahem* threatened to share with you if I didn’t, I sweetly offered the use of my blog to my friend Kevin, even though I am a control freak of the highest order.

Normally, I don’t give it up for PSA’s and what-not, although you’d be surprised that I do get people emailing me to remind you, My Gentle Reader’s about about important water safety tips and stuff. Those go immediately in the trash, because, obviously, but, you know, pictures and blackmail, and shit, if I were Kevin, I’d want as much help as I could get too. I know that you’d help me out if the roles were reversed. EVEN WITHOUT THE PICTURES OF ME AND THE HORSE.

It’s the right thing to do.

Kevin of Always Home and Uncool has asked me, The Coolest Person he knows, the only one who would return his emails, to post this as part of his effort to raise awareness in the blog-o-sphere of juvenile myositis, a rare autoimmune disease his daughter was diagnosed with on this day seven years ago.

The day also happens to be his wife’s birthday.

*

Our pediatrician admitted it early on.

The rash on our 2-year-old daughter’s cheeks, joints and legs was something he’d never seen before.

The next doctor wouldn’t admit to not knowing.

He rattled off the names of several skins conditions — none of them seemingly worth his time or bedside manner — then quickly prescribed antibiotics and showed us the door.

The third doctor admitted she didn’t know much.

The biopsy of the chunk of skin she had removed from our daughter’s knee showed signs of an “allergic reaction” even though we had ruled out every allergy source — obvious and otherwise — that we could.

The fourth doctor had barely closed the door behind her when, looking at the limp blonde cherub in my lap, she admitted she had seen this before. At least one too many times before.

She brought in a gaggle of med students. She pointed out each of the physical symptoms in our daughter:

The rash across her face and temples resembling the silhouette of a butterfly.

The purple-brown spots and smears, called heliotrope, on her eyelids.

The reddish alligator-like skin, known as Gottron papules, covering the knuckles of her hands.

The onset of crippling muscle weakness in her legs and upper body.

She then had an assistant bring in a handful of pages photocopied from an old medical textbook. She handed them to my wife, whose birthday it happened to be that day.

This was her gift — a diagnosis for her little girl.

That was seven years ago — Oct. 2, 2002 — the day our daughter was found to have juvenile dermatomyositis, one of a family of rare autoimmune diseases that can have debilitating and even fatal consequences when not treated quickly and effectively.

Our daughter’s first year with the disease consisted of surgical procedures, intravenous infusions, staph infections, pulmonary treatments and worry. Her muscles were too weak for her to walk or swallow solid food for several months. When not in the hospital, she sat on our living room couch, propped up by pillows so she wouldn’t tip over, as medicine or nourishment dripped from a bag into her body.

Our daughter, Thing 1, Megan, now age 9, remembers little of that today when she dances or sings or plays soccer. All that remain with her are scars, six to be exact, and the array of pills she takes twice a day to help keep the disease at bay.

What would have happened if it took us more than two months and four doctors before we lucked into someone who could piece all the symptoms together? I don’t know.

I do know that the fourth doctor, the one who brought in others to see our daughter’s condition so they could easily recognize it if they ever had the misfortune to be presented with it again, was a step toward making sure other parents also never have to find out.

That, too, is my purpose today.

It is also my birthday gift to my wife, My Love, Rhonda, for all you have done these past seven years to make others aware of juvenile myositis diseases and help find a cure for them once and for all.

To read more about children and families affected by juvenile myositis diseases, visit Cure JM Foundation at www.curejm.org.

To make a tax-deductible donation toward JM research, go to www.firstgiving.com/rhondaandkevinmckeever or www.curejm.com/team/donations.htm.