Perspective...

Funny isn't it, how much of life is about attitude and perspective.  You can take the wrinkles that emerge in your day as reasons to cry, or potentially happy interventions of circumstance. Serendipity may be seriously under-rated in my humble opinion.

In example, I ran out of D/W soap this am so used a little dish soap to run my dishwasher instead.  The result being I now have bubble leaking out of the front of my dishwasher an onto the floor of my kitchen.  Guess this means I can mop without having to dig around for more floor cleaner...

And the Cookie...?  Loves bubbles in any form she can get them.  The result is a day started out with my toddler in near HEAVEN.  :) As far as wrinkles in my day go, I can live with this one...

Yes I'm still here - I know we dropped off the radar for awhile there, what can I say...D's in final's week and on top of that (and the obligatory editing of term papers that results) I'm also coping with a cranky Cookie who's getting not just one but two more teeth pretty much simultaneously. Despite all that life's going pretty well...we got approval from the VA homeloan program for a home loan and immediately after christmas we plan to start looking for a house.  :)  That's exciting because it means more room generally, and a garage for the car that doesn't require a walk across an icy parking lot in another few weeks/months...believe me when I say with vigor that a fall with the hideous resulting bruises would the absolute last thing any of us need.

Now off to UnderwaterWorld at MOA.  In case I haven't brought it up before, the Cookie LOVES the fishies...

The plain old truth...

...is that like everyone else (with EDS or a toddler or without it) I have both my good days and my bad days.

Heck let's be honest, and a bit more accurate.  Some days its not good and bad days, its good and bad MINUTES.  There are times I just hurt and nothing seems easy at all, and I totally want to throw the towel in, plop down on the couch, and let the mess of my life (not to mention my dishes) pile up in the sink.  There are days when the two flights of stairs up to our apartment's laundry room seem insurmountable but it HAS to be done because you can't let your kid go out in 40 degree weather without socks...  And so you groan, and make yourself get off the couch even if you whimper pathetically.  Sometime you endure because you HAVE to endure and so you just do.

I'm 32 years old, and I have EDS.  My pain is regularly at a six out of ten.  Despite that I'm nowhere near as bad off as my poor husband - who lives at a regular 7 or 8 and sometimes needs me to physically haul him bodily up off the floor if he manages to fall despite the cane. I AM the strong one - I am the lucky one, and what's more I have a one year old who is going to develop her whole sense of living with chronic illness from watching me.  If I want her to believe her life is wide open and despite the challenges her life can be full and wonderful and sweet, than I'm going to have to believe and live all the above myself.  Put your money where your mouth is essentially.

 But it isn't always easy, and I'd be a big fat liar to pretend otherwise.  I've had my share of nights I screamed at heaven, and I didn't always like the reply.

But I'm still here and I have a family I love and a life that's unimaginably blessed more days than its troubled.  And that's enough because I choose to MAKE it enough.

How come a year older never FEELS a year older...

Cause honestly I don't feel any different than I did at 22, even if yesterday was the fabled day of each year when one more year of life saw fit to mug me. 32...Should I be feeling distinguished now, or just extinguished...?

:)

We've had a fun day today...  The Cookie had an Early Intervention meeting today with her PT/OT people.  (She'll have one a week on a rotating basis as long as school term is in session.)   She gets along with her two Sue's very well (yes they're both really named Sue...I think its hilarious)  - far better than with the PT person she used to have to go see at a clinic outside our home.  I think she just feels safer and more in control when she gets to be on home turf to do her exercises.  They're talking about making her some foot orthodics over the next couple of weeks...they think her ankles are a little weak/floppy due to the EDS and that's why though she's been pulling up for more than two months, she isn;t yet standing independantly, cruising much or trying to walk/pull away from whoever is holding her hands.  I have no issue trying it if it will help, though I think keeping her in the right size will be a challenge, since she's growing so fast I can barely keep her in shoes/pants that fit for more than a month at a time!

In other news, the crazy guy who married me is wrapping up another quarter in college.  I don't know if I already mentioned this or not, but he's a former soldier and Iraq War Veteran who has since finished up his term of service and is now attending school full time on the Post 9-11 GI Bill while he also looks for a job.  It's a definite challenge since he's got some physical limitations  - namely he was injured in a training accident and than not treated properly afterwards. He has permanent nerve damage now as a result and walks with a cane.  Luckily his course of study involves computers...which will limit the need for physcial labor, and he's already got a bead on a possible tutoring posituon on campus, since he maintained a 4.0 last term and looks like he'll manage the same this quarter as well.

Mmmmm...

I took the time after the Cookie went to bed last night to put together a homemade lasagna to cook up today.  It's time consuming (and  painful on my wrists in the slicing and dicing department, I really need to be more consistant about using the SlapChop) but oh boy is it worth it right now to have an easy meal to stick in the oven when company shows up.   I LOVE them scents of fresh basil, oregano and parsley.

:)

You know I may be part Swedish and part all around genetic mutt, but looking at my pantry, you'd really think I'm a separated at birth Italian.

The trouble with proper size baby clothing....

I got the chance yesterday to go shopping for fall clothing with both my mom and sisters. (I am the youngest of three girls, for the curious.) It was a rare treat indeed, since the Cookie got to stay home and spend some quality time with her Daddy while we were out.  D's an awesome baby watcher...if perhaps prone to addicting out kid to random get-stuck-in-your-head silly songs. Mahna Mahna anyone?  (Those those of you teens and twenty something who don't get that reference?  Google the name and the Muppets and be properly introduced...)   :) 

But where was I...ah yes, shopping for the fall.  We're officially back in the frozen kingdom of Minne-snow-ta after 5 years of army assignments to the southern half of the US (Georgia and Texas mostly).  The Twin Cities are as cold by late September and October as Fort Hood is at its worst, so pretty much a complete stockpile of cold weather outfits for all three of us was necessary.

Which makes me want to groan, because for the record I HATE shopping.  Well for clothing anyway.  It's a totally different story if we're talking a book store or a cooking store or an arts and crafts store - heck anything BUT clothes.  I'm just...not fashionably gifted.  I may be fashionably impaired in fact (at least for me - K has easier coloring than I do to find good stuff for, thank goodness!)   Luckily, my clothes shopping phobia is  mitigated for by the fact that my mom and sister both LIKE clothes shopping - at thrift stores in particular.  (Which is good because we're saving up for a house and like being thrifty.)

The result...10 new outfits I know will look good on the wearers  for under 80 bucks.  It was totally win in my humble opinion...

Especially in our case, because I'm hard to find stuff for and the Cookie?  Is basically an adorable curly haired bean-pole with an oversized head.  (No there's nothing wrong there whatsoever -big heads and monster IQs are actually a family thing, you should see the ones on her grandpa, uncle and Daddy.) With that disclaimer ...the Snickerdoodle's almost impossible to dress some days. Cause her tops have to be sized to be at least 18M to fit over her head (the sleeves need to be rolled they're about an inch too long), while the 18M  slacks are the right length but fall right off her hips...

At the thrift store I at least can match items to ones I know fit piece by piece.

Took the Snickerdoodle to an opthamology appointment today. (For the record she was less than thrilled - we're dealing with some significant stranger anxiety in her these days, probably because so many of the ones she's known up until now want to poke and prod at her all the time.)  She's both cross eyed and VERY near sighted, and so is being followed on a fairly regular basis to make sure her glasses prescription is still what is should be.  She'll be seen at the eye clinic once a month until December, at which point  they'll decide if she's making acceptable progress with the eye patch mystique or if she's going to end up needing corrective surgery.  I'm hoping for the former of course - no one is thrilled with the idea of their 13 month old going under anestesia, but then on the other hand I know now how very very much Kaia's world is impacted by the ease with which she can see.

For example...she got her first set of glasses at about 9 months.  Before that I couldn't get her to crawl further than two feet away from me for anything.  Now?  She's all over the house at mach 10 (mach eleven if the dry cat food dish is in sight!) And while she may scream at the sight of doctors and physical therapists some days, (No touching with out saying hello and playing a little first) both have played a big role in getting her where she is today - still struggling some, but also on target for the larger number of her developmental milestones...

That's the balance I think, when dealing with kid who may need different types of medical intervention (especially surgery).  You want to give them time to come into their own and spare them as much pain as possible when its not absolutely necessary, but at the same time, you also don't want them to lag far to behind, or have them just give up because of fear or repeated failure based frustration.  Sometimes it's a tightrope you
can't help but teeter on and hope that they'll just forgive you in the end.

Three things I love and three things I detest...

I Love...

1.  Sushi...  Particularly Philidelphia Rolls with Unagi sauce.  I fell in love with pickled ginger while I was pregnant with the Cookie and never really fell out again.  Seaweed salad is pretty darn tasty too...as is Miso soup when it's properly hot instead of the luke warm version so many people seem to like...

2.  Tomato Mozarella Salad with Balsamic Vinagrette - though I freely admit the freshness and quality of the tomatoes make or break this dish, which is why it's best when prepared fresh out of the garden or straight home from the farmers market

3.  Warm baths - hey I never claimed this would all be about food.  Honestly though I'm a TOTAL water baby...for good reason too.  Immersion in any kind of water seems to help my joints... both because of the lessened effects of gravity and the way warm improves circulation.



I Loathe...

1. The cold - It makes me stiff and slow and achy.  Granted it gives me an excuse to buy warm fuzzy sweaters every winter, which I suppose is a good thing.  Still, living in MN the way I do December and January and February can be pretty brutal.  At least we get snow as well - and I have an excuse to make hot chocolate.  (Like I need an excuse to eat chocolate EVER).

2. The taste of coffee.  I don't mind the smell - unlike my husband who gets naseous at the merest whiff.  I like tea, apple cider and Chai...but unless it's a wee bit mixed with my hot cocoa when I really need the caffeine I will pass on coffee.  (Yes I know, my nordic ancestors are rolling over in their graves at the moment.)

3.  STUPID humor films (as opposed to those devoted to satire, irony or slapstick)  Monty Python is fine and I LOVE Eddie Izzard, Jeff Dunham, etc etc... but frankly some films I've seen I mourn(or I've out right walked out on) because I'll never be able to get back that time... You do know the type I'm referring to right? I'll leave it to you to supply the titles...

On The Art Of Being Ma Gumby...

If you're read my profile then you already know something about me people wouldn't necessarily realize when they're introduced to me in person...the fact that I (and most likely my daughter) have both been recently diagnosed with Connective Tissue Disorder. We're still waiting for the blood tests to come back, but right now the geneticist who treats us both has said her bet is either Classical or Hypermobile Type Ehlers Danlos Syndrome.

What's that mean?  Depends on which one of us you;re asking about.  My daughter has eye problems and skeletal problems and I have dysautonomia.  We're both hyperflexible.  (Double Jointed) No I'm not at the level of the circus performers in the way I can twist myself into knots but I can bend into creepy looking positions on occasion and on my worst days my joints are both painful and floppy.  I combat this (and oncoming early onset arthritis) via exercise in the pool, and general strength training stuff...

Never heard of Ehlers Danlos or Connective Tissue Disorders?  You're not alone.  I hadn't either and would likely have gone through my life thinking I just had something called P.O.T.S has it not been for my daughter being born with more pronounced skeletal symptoms then I ever had.

Now?  I'm researching like mad, and generally trying to make sense of both having a chronic medical condition and raising a child who has the same...

Otherwise know as casting myself into the great unknown.

I have no clue if anyone out there will ever find or read this, and to be honest it's as much a place for me to write for the sake of writing as it is a place for me to share the munchkin and I's story. That stated I've always believed that a journey shared can be very powerful - and I love a captive audience. That being the case I plan to write here fairly regularly about just about anything I think all of you may find interesting.  If you want to know anything more detailed about anything in particular just let me know and we'll see what we can do...

I'll start with this disclaimer - I'm not inclined to use my daughter or I's real name's...so I'll be referring to her from here on out as The Cookie  -or is I'm more honest with myself BigTrouble. She just turned one this month, and despite what most people might expect (since she - like I- appears to have connective tissue disorder) she's proven quite capable of crawling at lightening speed and getting into EVERYTHING...

Seriously her first day crawling she found the cat food and it's been downhill ever since...

If my Mom believed in it she'd be making wise cracks about karma right now.  :)