Redefining Perfect

It’s starts so simple, a few words exchanged on a message board, a comment on a blog.  Something simple with friendly intentions. 

In the midst of an innocent hello, a moment of similarity erupts – a connection is made.

The comment turns into an email exchange.  A similar taste in art,

Movies,

Music…

You start to talk more, the emails become IM’s and you find yourself chatting well into the night.

That one simple connection, the moment you hit enter, it changed your life without any such intent.

She became so much more, so much a part of your life.  You have yet to shake hands, to exchange that long-awaited hug, to embrace the person that has become your dearest friend.

You know all of her children, their birthdays, their quirks.  You know that every time you call each other someone’s child will be in the background screaming because they are just evil that way. 

She is the first person your husband calls after your surgery (or is SUPPOSED to call), the first person you think of when something good or bad happens.  She’s become a part of you, a part of your heart, a part of your soul.

You cry together, you laugh together, you have private jokes. 

Connected by cables and wires, phone lines, cell lines, modems…but most importantly you are connected by the heart.

You know she’s your sister by your shared traits, by your differences – and by your honesty. 

There is nothing like a digital sisterhood, it starts more honest and innocent, without the nerves of meeting a stranger in the park.  This person you’ve reached out with a kind hello to someone you’ve seen around – you’ve read their words and glimpsed into their world. 

The connection may never become deep and true, abiding like a close friend – but you will always be connected. 

And once in a while you will get lucky and get a friendship like the one I described above – the one that is a part of my life.  A connection I never could have made without the cables and wires…it is how we met, it is how we will remain close, best friends….

Sisters. 

Dedicated to my best friend, my sister of my heart…Jess.  Love you, chica.

I was inspired to write this for The Sister Project – as a chance to win a sponsorship to the Type A Mom Conference.  Whether I win or not, this post is from the heart…and if I could I would win the sponsorship for her instead…

Last month I cleaned.  I started in my bedroom and into my living room.  I decluttered out about 15 bags of trash and goodwill items.  Out of just the two rooms. 

If you know me at all – you know I’m not a cleaner.  I hate cleaning.  Daily cleaning has never been a thing I do.  I’ve never minded clutter – a point that has bothered my husband for seven years.

Since the declutter I’ve made the bed every single day.  I’ve dne dishes (almost) every single day.  I’m always cleaning my kitchen counters, using the swiffer on a patch of dust.

The cleaning bug came to visit and is stuck like glue.  I’m trying to find a good opening to get the major declutter done on the kitchen – though what it really needs is a remodel – for now I’ll settle for the major declutter.  The kitchen, bathroom and Brandon’s room still need it…but having two rooms that are primarily clean and remaining so has been great…I’m just not sure what’s come over me *G*

Weekly Winners is the brainchild of the wonderfully Sarcastic Mom, Lotus

I took the kids out today in an attempt to do a photo shoot of the kids for my family.  I am fairly pleased with the results except that I only got one really decent shot of the three of them together.  But, at least I got the ONE, which is great!  This is only a small sampling of some of the great shots I got!!  There’s a whole section of the kids wading into the creek, getting their clothes soaked…I’m definitely happy with my first official intentional photo shoot!!

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For those of you living in a cave…this weekend is the big BlogHer party just a few hours away from me in Chicago.  I made the choice not to go back when tickets were available and I had the cash…and now that neither are available I’m sort of regretting that decision.  But, I’ve found plenty of ways to beat those blues…

1) This post itself.  It’s entered me for a chance to win a $1oo sponsorship from Cozi!  They’re sponsoring 15 moms (with the highest comments…so please make sure to say something!) who are missing the big weekend with $100!  This would help me afford the technology to improve my webmag, so I so need it!! 

2) It turns out I’m so not alone.  There are tons of parties going on across the blogosphere.  I’ve found 4 of them and added their links to my side bar!  Check them all out!  Some started last night, some tonight…join in the fun!! 

3) I may have a chance to see some of my Indy girls that are home as well…if we can coordinate it!

4) It looks like the weather is finally looking up.  Maybe I can finally get the kids out of the house!!

5) My house cleaning is close to compete (only my kitchen and bathroom need major overhauls now)…so I can sit back and just do maintenance cleaning this weekend.

6) I can spend some time seeing just how easy it is to adapt my Cozi account to my Home Management Notebook.

7) I get to do some back-to-school shopping for my oldest.  It’s hard to believe that his school starts in 2.5 weeks! 

I may get some time to myself, too.  I have a gift card to JoAnn’s that I got for my birthday to spend…and it’s burning a hole in my pocket!

9) I’m hoping that our potty training journey is just about done.  I’ve been trying some advice I got – so I hope it works better than any other I’ve gotten.

10) It’s time to Dave Ramsey it…Total Money Makeover.  So I shouldn’t be out in a hotel spending too much money on food and drinks anyway…so it’s all for the better that this homebody is home!!!

I hope you’re weekend is great, and I hope to be back with picutres from our cookout last weekend (croquet! So long since I’ve played!!), and other assorted posts in between all the things I hope to do this weekend!!

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For those coming here for the parties – let me introduce myself!
I’m Sarah, of Casa de Perfect. I’ve been blogging for almost two years now!

My hubby, Archie and I are the parents of 3 great kids.

Brandon (10) is neurotypical and in 5th grade.

Riley (3.5) is mildly autistic and has RSS. She’s in special needs preschool.

Angel (2.5) has CF, severe truncal hypotonia, dysphagia, tibial torsion, sensory disoroder, and anger issues.

Every day we redefine ourselves, our lives, and our definition of perfect. We hope we can redefine yours, too.

Here’s to living life beyond our labels…and to redefining perfect for everyone.

Weekly Winners is the brainchild of the wonderfully Sarcastic Mom, Lotus

Pictures from the week of 7/12/09-7/18/09

This week was busy with cleaning (I’m sparing you those pictures for now), a rebirth of my jewelry making, and ended on a very high note with my brithday!

First, a sampling of pictures from jewelry night and just a day in our yard.

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Then a series of pictures I’ve taken of the sky during the week.  One of my favorite activities. 

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And last, but not least, my birthday!  Archie took me to The Melting Pot. It was wonderful and amazing and he didn’t balk at me taking in my camera.  I’d say about 90% of these are straight out of the camera…it was delicious and we had a ton of fun!!!  Oh, and the picture of the back of my head was to show off the hair it took me an hour and a half to style And no, it’s not time to cut it yet.

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The year was 1990.  On the jukebox were some fav’s: “What it Takes”, “All I Wanna Do”, and “Sweet Child O’ Mine.” My dad and brother were off looking at colleges for the weekend, so my mom dragged me kicking and screaming (really) to go to her good friends campground (yes, that is a pic from the actual place).  I hated her friends son, and really…a campground? Like, totally GAH-ROSS!!

Little did I know…that little campground in Franklinville, NY would come to mean everything. I would meet my best friend that would be one of the two people that helped me survive middle school…and that that best friend would be related to that boy I hated so much. It would become so important that I would BEG my parents to buy a camper and they did – on my birthday that year (appropriate as today is my birthday…)!!

I remember everything – and if I don’t, we kept records that remind me of little things I forgot.  I have tons of posts I could fill with the memories, but the one that stuck with me tonight and brought it all up again (it has been close to my memory a lot lately as that friend just found me again on FaceBook:D)….was the campfires.

Every night, I mean we were camping, the adults would make a campfire.  We would be off playing, not really allowed in the circle where the adults spoke of adult things.  We ran and played until “the light went out” and then it was back to whomever’s camper we were sleeping in that night (because really, I think EVERY night was a sleepover there). 

Inside the camper (or tent) we’d play rummy, gorge on Doritos and Hot Cocoa, laughing our butts off.  Outside of our laughter I remember the adults, still circled around the fire, laughing themselves.  We were allowed into the circle for brief spurts, but it always reverted to adult time, adult conversation…and we’d meander back to our game of Rummy.

Tonight it hit me hard that I am now in the adult circle.  There is no campfire, but the adults are circled around.  Conversations flow. Kids wander in, only to take off again into the night until curfew.  Our neighborhood is enclosed, and they’re alwys close…but they are relegated to the night…and I am now among those keeping warm in sweaters and shooing off the children so we can get back to grown up discussion.

It happened too soon.  I was never ready to let go of Rain, Rain and more Rain (what we ‘affectionately’ called the campground)…but we moved out of state and parents cancelled our seasonal site…and life moved on.  I grew up…and life took a 360 many times over…

I wasn’t ready to let go of childhood when the years didn’t seem to pass so quick, but the summers sure did.  When it seemed like I would never be like those crazy adults, or the women on the commercials that suddenly cater to ME and MY (not so) fine lines.

I’m not sad to be over 30 (again). I love my life and my kids.

But the little girl in me still longs for the summers at the cottage, the camper, the blizzards in winter, the life she once knew.  She remembers them clearly and fondly.  I didn’t have a bad childhood.  I haven’t had a bad life, period.  I miss the old days, but look forward to creating more old days for my kids…I just have to learn to live with sitting around the campfire – not in the camper with Doritos and Hot Cocoa.

Today in email I was asked by a mom with a new diagnosis of Truncal Hypotonia to explain it in layman’s terms for her.  She’s new to all of this and is frightened – and I remember that feeling well.  It’s been ages since I did a Terminology Tuesday, and today is not Tuesday, but I thought it would make a great post, since I display clearly on my site that Angel has this and what it is may not be clear.  I’ve already answered this directly to that mom in email, but I’m making a post now too

Hypotonia is a muscular condition.  It means that the muscles do not have the tone of normal muscles – they aren’t as strong or flexible.  This is often characterized by a rigidity.  In our case, even changing a diaper caused discomfort for Angel. She had Torticollis (definition on Tues.) as a baby, then her arms were stuck in the airplane reflex (arms raised tight and bent at her sides) until we finally got her crawling – and even then we could not get her to use her left arm to reach for anything.
 
Truncal means the torso.  The hips/stomach/chest area is the weakest. The trunk supports us in just about everything from sitting to moving and walking. Angel’s hips and chest are her weakest area, most especially on the left side.

 I hope this helps!  I’m off to research another disorder to gain an understanding of it before I email this mom back!!

You know those sneaky roller coaster rides where you climb and climb every so slowly to the top and just as you crest, ready for the exhileration of the drop – it’s just a little bump?  You have to wait another interminable second before the rush of the real drop? I’m stuck on a series of little bumps…waiting for the rush of the drop…

Every step forward with potty training is met with steps backward. 

I’ve tried defending their actions, explaining them away…but I’m down to the last hair on my head, pulling each one out in frustration.

I can’t call them ‘accidents’ I know that they know what they’re doing…but do they?  Despite the fact that they know where the potty is, how to go, they are no longer afraid of it…and have even used public toilets…they have yet to initiate a potty run. 

I take that back – Angel did it ONCE, on father’s day. 

I’m tired of washing sheets every day because they keep wetting the bed.  I’m tired of asking them if they have to go and gettig a flat out ‘no’ – only to have them peeing on the ground two minutes later. 

Is it a sensory issue?  Or just stubborness?  Or are they just not ready, despite being 3&4?!? 

I don’t want to return to diapers…I don’t want that cost…but I don’t know how much more I can handle.

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My apologies for the potty-roller coaster analogy…and for a post about potty-training…I’m just super frustrated right now.

**This is not my actual house, just one similar to it I found online. Ours is like this, small, one floor, no landscaping, tree in the front yard…but our is more rectangle than square **

When we moved into this house 7 years ago it was as a ’starter’ house.  It was perfect for our ’small’ family of three.  3 bedrooms, the largest of which was 13X12, the smallest 9X9. The kitchen and living room were a good size and there were two bathrooms (unique for this neighborhood).

Since them our ’starter’ house has become our permanent home.  We’ve made mistakes financially, which we are now trying to correct, but the end result is we are here and likely not going anywhere for a long time. 

In a way, that’s okay with us.  The neighborhood is amazing.  Our neighbors are wonderful.  The street has no outlet-which means no through traffic, only 95% residential traffic-so the kids (and there are a LOT of them) can run and play up and down the street with only minimal chance of danger.  Brandon can go out and play and I know that if he’s up to no good where I can’t see him a neighbor will call and let me know.  We all watch out for each other-and I couldn’t ask for a better place to live.

But the house is SMALL.  When we first moved in we took the biggest room, put Brandon in the next biggest and turned the tiny box into an office. For the two of us packrats, the office became the catchall and by the time I became pregnant with Riley it was packed full of junk.  We cleaned it out and somehow turned it into a nursery, putting much of the junk in the garage. When Angel came along we made another switch, putting the two girls in the big room and squeezing poor Brandon into the 9X9 room.

Guess what, the packrats that are us still needed a catchall.  It became our bedroom.  Every other room would be ‘clean’ (but filled with clutter), and our room would be the pit.  It was the last room I would touch, and was so packed that I was overwhelmed.   We needed Clean House in the worst way.  But in the absence of ‘reality’ television…I finally had to bite the bullet and DO something.

This week I’ve started.  Our house is way too small for 5 people and the amount of clutter we had.  I don’t have the money for clever storage plans (oh, but I wish I do) so I have to cleanout completely.

I started in our bedroom.  From top to bottom I cleaned I rearranged and the room is now the cleanest in the house for a change.  It needs a coat of paint and some nice curtains, a new bedspread (Indy Girls, I’ll take offers )… but it’s CLEAN. 

Since then I’ve moved onto the living room – clutter central in a way I never realized…I’ve been finding clutter everywhere. 

But clutter is slowly taking it’s exit of my house.  I’ve thrown away probably 20 trash bags in the past week, and that’s just in two rooms.  I’m sure some of the items we could have done in a garage sale, but I’m just getting rid of everything. If I hold it for a garage sale, I’ll never have the sale.  I’m being realistic and aware of my own lethargy/procrastination on some matters.

Over the weekend I’ll finish the living room and move onto the kitchen next week (be afraid. Be VERY afraid).  I would love for the boys (my husband and neighbor) to just cut out the wall separating the living room from the kitchen while I’m working on this (we have talked about doing this, just not actually done it)…but for now I’ll just be happy to clean.  I hope to get paint and paint the rooms that need it (living room needs fresh coat; hallway, bedroom, and kitchen desperately need paint)…once everything is clean.  The last two rooms I’ll do is the boys room (I got started, didn’t finish) and the bathroom (hubs asked me to wait until he and Moe finish up the remodel…hopefully that will happen SOON).  The girls room is the closest to already clean that there is…as I regularly clean it out when they outgrow clothes. 

So now that this is being done I’m trying to shed my packrat ways…and the spending habits that came with her.  It won’t be easy – but I’m going to try!!

Tuesday I got the call.  The last specialist on the list.  Specialist #8 for Angel (that’s not including her therapists…this is just doctor specialists we’re talking about).  Specialist #2 (I believe) for Riley.   We asked the pediatrician to make a referral to the Developmental Pediatrician.  The orthopaedist suggested it for Angel way back in January given her case history. After researching exactly what a DevPed does, we also asked for Riley as well – because of her autism and reaction to school last time (advice really).

As horrible as it sounds, it was very validating to hear what the nurse had to say about the doctor’s response to the girls’ cases. 

1. After reviewing the case files the doctor feels that their cases are complex and wants to see each of the girls on a one-on-one basis – meaning no double appointment with their sister.  She wants to get to know them each individually for at least the first appointment.

2. She wants them in ASAP.  We’ve been scheduled for the first appointments available (November) but placed on the wait list so that we get the first available appointment.  This is by the doctor’s request, not ours!

So it’s all said and done with…except the appointments themselves.  Archie will go with Riley.  I will go with Angel. 

Hints of hope are creeping in again, but I’m trying to keep them squelched.  One step at a time and right now I have a long way to go until November…