redacted

Ugh, I deleted my last post.

Not accidentally, of course, but it was too cynical even for me. If it ruined anyone's day, apologies.

I used to joke that I was not only a glass-half-empty kinda girl, but a glass-half-empty-and-the-rest-is-spilling-all-over-the-friggin-place kinda girl. It sucks a little bit to be like that, but personalities are what they are.

Still, I'll have to think of something nicer to say before posting again.
Might be a long pause.

I scream, you scream

Dawson's first self-served cone last week - ah, bittersweet.







It's a No-School Day and boy, am I feeling it. I really can't express how much I dislike, dislike, dislike, dislike having no school and no hubby to help out. I think the boys would agree - even with fabulous weather and endless outside play opportunities, they both just get BORED.

We finally settled on Methylin chewables for Cade; we asked for a 10mg tab to be split for 5mg 2x a day - it's a way to make this as affordable as possible for us as we have one of those awful high-deductible plans that even prescriptions apply to, so we have to fork out the $75 a month alone. As an aside in a blog I usually keep politics out of, yes, for those that don't know or have forgotten, Matt works for a certain second-largest insurance company in the U.S. and I did as well before Parker was born. We have seen it all, we know how it really works in this evil industry, we've felt the burn of being one of the UnderInsured and so we are proud supporters of a Government-Takeover-of-Healthcare, even if that Takeover resulted eventually in Matt being out of work. The poor misguided souls who don't understand the need for such a thing have never been on the receiving end of emails instructing you to purposely delete files waiting for review and spelling out lies to tell said poor misguided souls who think Private-run healthcare is infinitely superior to Government-run healthcare. Single-payer all the way, baby. (Okay, enough said on that, for now at least!)

The pedi informed us this morning the script was ready to be picked up - you know you've gone over to The Dark Side when your kid's prescription can't be legally called into a pharmacy because it's a "controlled substance" - and Matt fully intended to do so on his lunch break. Unfortunately, Cade decided to use that time to run downstairs and let our dog outside (for the fourth or fifth time), forcing Matt to spend the entire time searching the neighborhood for him ... finally, a few minutes ago the Dog Warden called. If this keeps up, we'll have to start inviting him to birthday parties. And all I can do is shake my head at the awful irony of it all and hope chemicals have better luck than I have to get this child to STOP DOING THIS CRAP. The drugs will have to wait until tomorrow.

This morning he woke up, snuck out of his room and spilled blue paint on the nursery floor (Dawson & Holden's French-circus room-in-progress). Yesterday afternoon he took my brand new camera out for an unauthorized testdrive in the backyard. It came back covered in mud but still intact, at least, and had me sorely wishing I'd splurged on the extra warranty. He sure knows how to make the best use of sunlight though, I have to admit; perhaps there's a career there somewhere.

Looking back through the saccharine posts leading up to Em's adoption, all this sarcasm feels foreign on this blog. And yet, believe it or not, that was who I used to be. Before Dawson. Before Down syndrome. I used to think DS was a cure-all for the lower elements of humanity. Maybe it was just a temporary patch. I don't mind though; it helps to laugh at it instead of crying about it.
It's like coming home again.

Our B-eautiful house.






This used to be my cell phone charger. Thanks, Parker. *sigh*


And yet, sweet moments. Unloading my memory card from the last few days.

















Dawson stepping through the last remnants of snow last week. We can't take Em outside if there's more than a slight breeze because she screams and gulps air like a newborn. We try to go out when she and Holden are napping, and I've been hanging out with her on the sunporch to try to desensitize her; but no outdoor pics of the Princess.



Dawson loves to swing. He holds on so tightly and laughs and laughs. I love how much he looks like he has Down syndrome here, and how much I don't care.

























Look, Ma... no hands?










All that remains of our patio table. Clean up ideas anyone? Ugh.


Cade's Pics during Aforementioned Camera Hijack

green

The chime just sang for 11:30 in the Frank Lloyd Wright clock in our living room (well, it actually sang for 10:30 because we haven't gotten around to resetting it; really, we were too excited about being an hour closer to bedtime to bother) and I'm sitting here at the computer instead of sitting behind the wheel of our minivan on my 12-minute rocketing down the Parkway 18-minute trip to pick Parker up from PreK. Matt surprised me this morning by announcing he'd taken the day off, about 2 minutes before he normally would've been heading downstairs to get started (ah, the joys of having a guy that works from home!)

I could be cleaning the kitchen, scrubbing pink paint off the wall from oh, I don't know, three weeks ago? or polishing the dining room floor or something productive like that, but really, I cleaned 75% of the house yesterday morning in a manic hour that has left me...er, a bit fed up with cleaning. So I figured I'd at least get started on a blog post.

Of course, before signing in and putting my fingertips to the keys, I couldn't resist checking out that suddenly-popular blog I mentioned in a prior post, here. I keep telling myself not to look, but I'm a sucker for good writing and even better pictures, especially when they make me feel like I'm looking back at a little piece of myself.

I normally would think it quite rude to talk about someone else's blog - I mean, really, high school much? - but this particular one has really had me in a funky mood the last couple weeks. I've found myself emerald with envy not over the author's ability to spin words into dancing prose like I used to think I was capable of doing or take pictures of gorgeous kids like I might be able to attempt if I didn't have so many of those said gorgeous kids or, even better, if I had several more arms; rather, I find myself both jealous of and irritated by those luscious first few months after having your whole world shattered and suddenly pasted back together by a miraculous little creature in an entirely new and achingly perfect way.

I read this blog in a half-smiling, half-cringing sort of way, eyes tearing as they're rolling, torn up over the knowledge that two years ago I would've sat nodding and bawling to that blog, maybe even an awkward, "Amen, sister!" tripping past my tongue. Today, that greenly innocent new mommy to an extra-special child is for the most part, grown up and moved on.

These days she is trying desperately to keep chaos down with her thumb, popping Prilosec in the morning for her very first peptic ulcer and counting down the minutes left to survive until bedtime. She is realizing each day that having six kids age 6 and under is

simply.

too.

much.

And there should be a natural law against this sort of thing.

She is finally deciding to put her oldest on medication for his newly diagnosed ADHD/ODD/CD after seeing him struggle to remember some random thing from school he had just demonstrated mastery over 12 hours prior because he can't get his brain to work the way it needs to and being awoken at 6:30 in the morning by a disapproving Parker informing her that this child had run off into the backyard barefoot to look for worms. Part of her is feeling like she is embarking on a Great Betrayal of this child, that she is not accepting him as he is, that she is trying to adapt him to her needs and those of a harsh world instead of letting him find his own path to orbit. The part of her who now delays all vaccines for at least one year, grimaces at the thought of artificial anything and tries to feed her kids reconstituted vegetable protein (yum) and once drove nearly two hours to buy organic beef that was cheap enough to possibly fit into a very tight budget is now about to give her kid mini-meth.

That girl has also decided to let go of her attempt to get a certain 2 1/2 year old with Down syndrome to eat like her age, at least for the time being, as Emerson went on yet another hunger strike for anything with the slightest bit of texture to it or the flavors she just can't live with in her mouth. Thirty minute epic battles of mealtimes are simply not on the menu for a woman with 5 other kids to manage and honestly, she's tired. And when a certain awesome speech therapist made the observation that she seemed "defeated," there really wasn't any other word that could fit the situation better. Because she did in fact set out on a mission, a mission to save a little person from an awful situation and shine her up a bit and help her reach her full potential, to show the world the magical awesomeness of having an extra chromosome; and so far at least, she has been mostly defeated by said little person who would truly dehydrate and/or starve herself into the hospital before progressing. And she's learning to accept that and move on, chugging through the grief and the stress each day to get as close to a happy place as possible and drag six little ones, often kicking and screaming, with her.

And there's nothing beautiful about this. There is no picture I can take, no editing software I can download, to make this part of some book I don't have time to write. This is life. It's messy, it's raw, it hurts, it gives 28 year old women ulcers and calluses on once-smooth hands just at the place where their palms grip the wheel of their minivans a bit too tightly as they attempt not to be 10 minutes late to PreK yet again. Today at least, my hands are getting a break.

And it occurs to me that maybe my blog is the anti-that-other-blog, or would be if I could create an extra hour in every day so I could blog. And maybe some people don't want to read this because it doesn't give you that warm fuzzy you're looking for, the one that makes you feel like you just ate a whole block of cheese and liked it. Perhaps I am just another green, a pretty shade of jade. And perhaps that's the color most of us weather to eventually.

And I'll give Down syndrome and ADHD one point in this, one thing it's taught me other than how to talk myself out of being overly-hopeful and unrealistically-positive, it's certainly shown me how to accept how I feel and realize that it's okay. We don't all have time to document our lives with a sunlit slant - sometimes we just barely have time to live them. And it's okay. There are gorgeous moments, there are ugly moments and although most of us don't want to post pictures of our severely delayed child who has just pooped like a 3 month old up to her neck because she doesn't eat enough solid texture to bulk it up, that is a real, not-so-beautiful but still just as worth it, life.

And what do you know, it's 12:15 and half of my troop just pulled into the driveway. Time's up. Back to reality.

hunger pains

Last week was a bit of a blur, like the "chooo chooo"s stumbling from Dawson's lips these days.







Parker acquired a huge case of Play-Doh which carried them through the week (and made a Groundhog Day of a mess in my kitchen) but offered a fun opportunity for sun-streaked pictures.









Silly Dawson, still loves to chew on the stuff.







Cade's clothing-sensory issues seem to mirror the eating ones of Emerson and this week found him rejecting one more pair of pants in his closet. His acceptable line-up is getting smaller and smaller and we're not sure what's going to happen when he outgrows/out-tolerates the few remaining pieces.



My darling Holden is getting much more sure of himself on the floor - flipping over to his tummy faster and playing with those oh-so-adorable piggies of his.















Dawson and Em were still sick with a respiratory thing and finally put on the old standby Amoxicillin on Tuesday - which unfortunately hasn't helped much - and after a week of self-semi-starvation (200-400 calories) from Emerson, we had a few days of great eating (1000+ calories!) and wonderful happies from her and even a great tolerance for her new AFOs, and then Friday it all fell apart again and she's now back to refusing pretty much everything. She cycles like that - she eats great for a few days, accepting many tastes and textures and being a joyful, engaging, progressing child.







Then for reasons that continue to completely escape us, she wakes up one day deciding she hates the taste of everything (even something she ate enthusiastically just the day before), screams at the mere sight of a jar of baby food, tears at her hair as she sits in the highchair and then becomes this exhausted, malnourished thing lying on the living room floor, staring off into the distance.



When she's hungry, she doesn't sleep well. When she's tired, she's even less likely to eat than she is normally. She had dropped down to 18 1/2 lbs when she saw the pediatrician last week (down from 20 lbs), then after her few days of great eating she chunked right back up to 20 1/2 lbs, now we're headed back down. We finally asked the pediatrician for a referral to a gastroenterologist. Honestly, we're at our wits end (or maybe beyond.) She's like two different kiddos - one well-fed, happy and the other willingly wasting away. We never know which one will greet us in the morning, and we miss the happy girl when she's gone. We're seeking some testing to look for any physical issues (reflux, obstructions, etc) but we're pretty sure it's just sensory/general difficulty. And if that's the case, we may want to get her a G-tube to fill in the gaps when Ms. Sunshine floats away. Hoping for some help from yet another specialist. We just want her to grow, to progress, to be. happy.

Trust me girly, I know how you feel.



Seeming to catch the vibe, Dawson refused his favorite double-buttered Perfect Grilled Cheese yesterday with great gusto. He can do difficulty just as well as the rest of 'em! ^_^