Sunday, July 25, 2010

It's finally here!!

We are moving this week!! We finally have gotten everything settled with the moving company and they are coming tomorrow and Tuesday to pack us up. They are going to have to repack almost everything in the garage so they think that will take a whole day by itself.  (Remember that we moved into a house half the size of our house in Broken Arrow, so we have about half of our stuff still boxed up in the garage)  They said they can pack the inside of the house in another day (and I doubt it will take very long).  We load up the moving truck on Wednesday and they drop things off on Thursday!! Hallelujah!!!

So excited! After waiting for months and months it seems like a dream that it is really here.

We are a little unsure what we need to do to get ready for the movers.  The man that came and did the evaluation said there was nothing we needed to do, but that doesn't seem quite right. Today I am going to get things together for school and put them in a special place. That way, when the packers box things up, I can tell them to put "OPEN NOW" on the school books and I will know where they are.  We have a few other things that we need to do the same kind of thing for, so we are going to be working on that today.  We also need to get our clothes set aside for the next few days so they don't accidentally get packed! I am looking forward to getting this started so I will understand better what is going to be happening. We have never had people pack us up before!

Coming to you unabashedly

I have a friend named Tonya who has a BEAUTIFUL daughter named Sara.  
Sara, like Kaedra, has VEPTR rods to help her.  However, unlike Kaedra, Sara has a horrible syndrome known as RETT Syndrome.  

Here is one definition of RETT (from Wikipedia):
Rett syndrome is a neurodevelopmental disorder affecting grey matter.[1] The clinical features include small hands and feet and a deceleration of the rate of head growth (including microcephaly in some). Repetitive hand movements such as mouthing or wringing are also noted. Girls with Rett syndrome are prone to gastrointestinal disorders and up to 80% have seizures.[2] They typically have no verbal skills, and about 50% of females are not ambulatoryScoliosis, growth failure, and constipation are very common and can be problematic.

Here is some more information: RETT Syndrome

Here is a little about Sara, in her mother's words:

Hi I'm Tonya, my daughter is Sara. She is eight years old and has Rett. Sara is on the severe end of the spectrum needing total care and can't do anything for her self. I take care of her myself 24 hours a day. I do not think of her as "less" because she has Rett. She has taught us so much in her eight years, brought so much joy and love to our lives, and the people around her. She hardly ever complains either. God has blessed us with a wonderful child. A child who I am sure would love to be able to hold a toy. When I see her frustration when she tries to hold a toy to play and drops it everytime, Everyday when I see her trying so very hard to talk to me, on the rare occaision that she does cry and we don't know what is bothering her, I'm sure she would want to be able to tell us, when she lays there and watches her brother run and jump and
reaches for him, when she looks at our food and drink so longingly but she can't eat it because she will choke or aspirate, these are the things that keep pushing me to vote for these "stupid" contests and keeps pushing me to do whatever I can to bring awareness to Rett, and possibly funding for a treatment or cure. Treatment and cures cost money the healthcare industry is about money. I believe the doctors and researchers working on Rett do truly care about our girls, but they aren't going to pull the money for a treatment or cure out of their own pockets. We shouldnt have to vote in these things we shouldn't have to raise awarness for Rett after everything else we do for our kids, but if we dont who will? Eery little bit of funding and awareness helps. After watching Sara die in front of me just last April, and seeing them start chest compressions and start bagging her for five minutes, seeing them with the help of God bring her back to us, waiting for days to see if she would live, you bet your behind I want a cure. It may be too late for a cure to help my child or any child with Rett currently alive. But maybe the next generation can be helped, the kids won't have to struggle. Sara is such a joy, so perfect and innocent. I feel that she is the best thing on earth (well her and her brother) lol and this is why we seek a cure.
To help her, not change her into what we want her to be. She is perfect the way she is, but if there is a way to help her have a better quality of life, to help her not have to struggle, then we are for it.
God bless you all, and take care, hug your angels extra tight
Tonya And Sara in SC 

There is an easy, painless way you can help Sara and Tonya and all the other girls that have RETT Syndrome.  Please go to this address and vote for RETT syndrome to get money from the Pepsi Refresh Project.  Please go every day.  (this contest ends at the end of July. If RETT doesn't win, they will also be in the running for August) Please tell all your friends.  Please, please help this children get the money for the research they need.  There have been advancements in the cure, but they need more money.  This contest could give them the chance to save many, many lives.

Thank you so much!!

Wednesday, July 14, 2010

Another wonderful resource

The other day when I posted about "my brain," I included resources that I use to help get my brain in order.  However, I forgot about one wonderful resource I use all the time.... The Low Carb Diner ebook.  This book has an amazing section in the beginning explaining how you can simplify your meal planning. Lisa takes you through the steps to get your kitchen preparation and messes down to the fewest amount of days possible, but with delicious dishes coming out of it every day.  I love to cook once a month and use freezer meal planning quite a bit.  Lisa includes some freezer recipes as well as including other quick meal ideas (like how to make 3 meals at once) and ways to plan for the whole thing.  It is really a WONDERFUL resource I use so much that I forgot to include is just such a natural part of what I do now!

Another wonderful thing about this ebook is, since it is Low Carb, most of the recipes are 100% safe for those of us that are Gluten-Free.  I can't think of anything off the top of my head that may need a substitution, but she might have soy sauce in a recipe or two.

She has a blog that goes along with the ebook and expounds on it.  She includes more recipes, explains how she makes things and has beautiful pictures.

Although I am doing this of my own volition and get no money out of the deal (I just want to share the great resource!), I feel it is only right that I let you know that Lisa is a wonderful friend of mine as well. :-)  She is an exceptional lady with a great family.  I have been privileged to know her for about 10 years now.

The Thorn

I got this from a blog I read and she got it from a book I am going to check out soon. But this poem really, really spoke to me and I wanted to put it here to remember.

The Thorn 
by Martha Snell Nicholson
I stood a mendicant [beggar] of God
before His royal throne
And begged Him for a priceless gift,
which I could call my own.
I took the gift from out His hand,
but as I would depart,
I cried, “But Lord, this is a thorn
and it has pierced my heart.
This is a strange, a hurtful gift
that Thou hast given me.
He said, “My child, I give good gifts
and give my best to thee.”
I took it home and though at first,
the cruel thorn hurt sore;
As long years passed I learned at last
to love it more and more.
I learned He never gives a thorn
without this added grace.
He takes the thorn to pin aside . . .
the veil which hides His face.

Sunday, July 11, 2010

My Brain

It's that time of year again.....Time to weed out my brains and create a new one.  I realize you might be thinking I have lost my mind, rather than my brain. Actually my "brain" is a name I have for my home/school organization binder (the term is borrowed from my friend, Lisa, many, many years ago) I haven't really used one much since being here.  I missed it this year and have decided I definitely need one for next year to keep everything in order: our larger home, three homeschoolers (doing two different tracks), several co-ops, a bible study, a few other outside activities, Michael working overnight and my mother in law needing care.  I do almost everything on the computer and my iphone but there are things that I like to see on paper and be able to see the "big picture." I also like: being able to check things off, having things out to remind me constantly (it can get forgotten on my iphone), and being able to take long notes at meetings instead of having to either a) write it on my iphone quickly or b) typing it out after the meeting.  This will be my first time attempting to integrate my home brain with my school brain.  I am not sure if it will work or not....I'll let you know.

Here are some of my favorite resources I use for my "brains:"

I haven't yet started working on my brain, but I will be working on it this week in between packing.  I am excited. This kind of stuff is my favorite kind of stuff to do.  I love the planning.  It's the implementing I need to work on!  ;-)

Friday, July 09, 2010

The amorphous shape of my blog

When I started my blog it was called "Our Miracle Baby" or something like that.  It was a blog all about Kaedra and her successes. I started it while she was still in the hospital and it helped to keep people apprised of her happenings as well as a place to post pictures of her.  Most people couldn't go up and see her in the PICU and so they kept up with her through my blog.  I even blogged when we went down to San  Antonio for her first surgery. It was a really great tool.

After Kaedra came home, and as she was integrated, gradually,  into family life, the blog eventually morphed into a family blog.  A name change was in order and it became "Our Peculiar Life."  I loved blogging through our days, posting pictures, writing down funny things so as not to forget them, posting music I wanted to share and occasionally sharing poems or songs I have written.

I have started to realize that Facebook has ruined my blog. Basically, my blog is obsolete. I keep up with all my friends on Facebook; I write about the funny things on FB; I share songs and other things on FB. Furthermore, FB has gotten me in the habit of writing very short posts. Writing a whole blog post seems much more daunting now.

I took many poetry classes in college. In all the classes, we were advised to use as few words as necessary. "Cut, cut, cut!" was frequently heard from our professors.  I wonder if 140 characters or less fits their concise requirements?

I don't want to give up my blog.  I like it.  It's pretty.  I get to create on it. It's an extension of me.  A place to make "all my own." But I need to give it a reason for being.  Just doing daybooks doesn't seem reason enough.  One reason to keep it is that the things I write on FB are eventually hard to find...hidden in myriads of posts.  I can't easily look over the things that tickled me about my children or important things that I wanted to save. Although they are there, they are barely accessible (I wish FB had some kind of searchable archiving system on each person's page...sort of like tags) Another reason to keep it is that it reminds me that I need to keep writing.  Not just short, pithy statements, but real writing.

So I am thinking on it.  Trying to decide what to do with it.     Trying to figure out a direction for it.
Giving it to God.  Waiting to see what he has in mind for it.  As always, when I give something to God, excited to see what He has in store for me.  It is always SO much better than I could ever think up!

So I guess you could say this blog is under construction as of now.  God's construction. I will be awaiting the results along with you.

Wednesday, July 07, 2010


Yesterday we started packing our house up.  I have to say this is the thing that has gotten me most excited....even more excited than hearing that we were going home.  Going home seemed like such an illusive thing, especially since it concerns Sam's.....nuff said on that matter.  But now that we've given the landlord our notice (we will be out of here by July 31st at the latest) and started packing, it is really getting real.

I don't want you to think I don't like it here. I love Oklahoma City: it is beautiful, we have done lots of exploring, our family has learned a lot about ourselves, and we met some wonderful friends.  I will miss everything, especially our friends.  I want to take them with me.  (that's what prayer is for...haha) But it doesn't feel like home.  God has spoken to us and shown us in so many ways where he wants us.  That is why it's home.

so home again, home again, (not quite) lickety split.  We are so ready.

Tuesday, July 06, 2010

Simple Woman's Daybook 7/6/10

It's Tuesday, July 6, 2010

Outside my window..Pouring down rain. Thunder and lightning. Quite the gully washer.

I am thinking... of next year's school plans.

I am thankful husband. He is my number one fan. What more could I want?

From the learning room....about to start packing it up!

From the kitchen....pork stir fry in an orange glaze over rice and with some sauteed veggies. Doesn't it sound good??

I am shorts and Americana shirt. (WOOHOO!! I AM NOT WEARING JAMMIES OR SWEATS!!!)

I am creating.... a gluten free monthly menu

I am going...back to Broken Arrow!!! 

I am currently reading... Heart of Wisdom by Robin Sampson (I read it about once a year, in the summer) 

I am hoping...we hear our moving date soon (still would like the date!)

I am hearing....Third Day singing "Caught Up in Yourself"

Around the House.....boxes are starting to pop up everywhere!

One of my favorite things....having breakfast dates with my hubby.

A few plans for this week... none really. Michael is off the next two days...we will be packing and organizing. Hopefully we can get together with our friends on Friday.

from  my picture journal...

Emily and Kaedra exploring space. 

Check out The  Simple Woman's blog if you would like to read more day posts or join  in!