School (School, School)

This fall, school has hit this household like never before...........and I for one, think it's GREAT. 

Here is the run down:

Dad

For those that may not know, Rob has decided to go back to school this fall.  After the fall of real estate and his subsequent move into the wood refinishing business, he has decided that redoing cabinets is not what he wants to do for the rest of his life.  This fall, we moved in with his dad, Rob bought a wood refinishing franchise, and has enrolled in full time school at UVU.  He is getting a nursing degree, planning on taking it into hospital administration of some variety.  The wood refinishing is going to keep him pretty busy we think, as will school of course.  We have the idea to sell the business when school is over and be able to move on into something better, but it is a great opportunity for now that really kind of just fell into his lap.   So far he is finding his psychology class a bit dull but is loving English and Nutrition.  This is adding a new element to the family schedule, but is something I am really excited about and is working out good so far.  

Scout

Scout started the 1st grade (in a new school might I add) this year.   1st grade is a big step-- all day, eating lunch, real school work, etc.  I am happy to report that all elements are going really good.  She has made some good friends already, I know that Sam was irreplaceable, but she seems to be doing fine without him and has found about 4 little girls to take his place.  They don't play Mario and Bowser at recess though.  *Mom bragging about her smart child alert*  --Sorry, but Scout is my only child that has the ability to be an "academic", so all my proud-mom-book-smart-eggs are in her basket, so I am really proud of her.  I roll my eyes as much as the next guy when moms brag incessantly about how smart their child is online, but like I said- she is my shot, so indulge me a little (or skip this next little bit).  We just had our first parent/teacher conference and her teacher beamed about Scout.  She is good in class and follows the rules, she is getting math concepts really well, has gotten 100% on every spelling test so far (except the first one, she didn't write anything for "I", -I can imagine she spaced for a second and didn't hear the teacher, cause I am reasonably sure she can spell "I"-).  She also at the first of the year, tested as high in reading as they test 1st graders, so they put her in a 2nd grade class for reading time along with 4 other students in her class.  *Ok, bragging over, it's safe again.*

First day of school.  she was pretty excited- while walking with me down the hall to her class that morning, I was worried she was really nervous, but then she turns to me and says, "this is the best day of my life".

Later at a school "Cougar Walk".  She is playing a cake walk kind of a thing, but the winner wins a school shirt.  She played that game with strangely intense purpose in winning a shirt.  I am happy to report that her efforts were successful.

Elinor

Elinor has started two weekly classes this fall.  The first one we go to on Thursday mornings.  It is a motor skills class (fine and gross).  We start with free play where the therapists that run it visit each child and interact, help them find an activity that is good for them, and see how they are doing.  Then we sit in a circle and sing songs with actions.  Then we go to the "ball room" and practice gross motor skills.  They have a lot of equipment for kids to strengthen the areas they need to and be able to play while doing it.  Then we have snack time, honing our fine motor skills again under supervision to get tips and advice on their particular feeding skills.   The above pic is Elle during free play, she is playing a little piano very Schroeder like- I love it. 

This is a great class and once again, I am impressed with Kids on the Move.  Some day, if I have a lot of money, I am going to donate a lot of it to them.

*

Then on Friday mornings, we head to Highland, and go to a horseback riding class called "Courage Reins".  It is a center that does therapeutic horseback riding for people/kids with disabilities.  It is really awesome!  When it was mentioned to me, I just went -Sure!  Sign her up- as many things like this that help the better I say.  But the first few minutes she was on the horse that first time, I could see what a great thing this is going to be.  I am amazed by what horse back riding could do for her.  It is hard work staying steady on them, and she did really well.  I think before we make too much progress on Elle's gross motor skills, she needs to develop more trunk strength and not just in the abs, and this riding once a week is going to be great for that.  By the way, no- Scout has no idea we do this every Friday.  She is at school and I figure that what she doesn't know that goes on- is just me being a nice mom.

Waiting for her turn to ride

I love this pic (I had a hard time getting a good pic that day, this was as good as it got).

Riding backwards- extra tricky.  Betsy works that girl good.  (Betsy is her PT (in the tan shirt)- she has a Sesame Street shirt she wears just for Elles sometimes.  We like Betsy.)

We were dropped off that first day, and walked to Kohler's to wait for dad.  Almost the entire walk, Elle held her legs out like this.  I don't know if it had to do with her 20 minute horseback ride or not- either way, it cracked me up.

She spent a period with just one leg up at the end there.  So silly.

 We saw a katy-did on our way and took a picture of it to show Scout.  Least I could do considering the horses and all.  Mommy really feels guilty little sis gets to ride horses every week.  I really do.  Hope I can keep it from her forever.  We'll see.

 Mom

Nope.  Mom did not join the school ranks.  (Unless you count the fact that she tries to keep the kids and the house quiet while daddy studies and supports him any way she can so he can do his best.  Walks Scout to and from school every day, sits down with her every night with her homework and helps Scout read and attends her book club group and joined the PTA (and packs her school lunch when the menu reveals that today's entree is gross).  Takes and participates in both of Elinor's classes and supports her as best she can, doing Elle's little homework everyday, and attends and participates in each and every one of her 8+ appointments every month.)

Phew.  School is hard work for mom, even when she isn't the one going.  Love it all though.  I'm even finding a way to love the fact that Scout got put in the early schedule and has to be at school at 8 and comes home at 2:15.  I really wanted the 9:15 to 3:30 schedule, but it was not to be.  Gets my butt out of bed and dressed early every day, and that really is a good thing.

Can someone please explain how people do this with 5 kids?

 

Full Disclosure

This is what my kitchen looks like right now.

Why am I showing you all this picture?  I was inspired by my Relief Society lesson today.  Our lesson was on Pres. Uchtdorf's recent talk about the forget me nots  and when we got to the petal "Forget not to be patient with yourself" we spent some time discussing how others may seem perfect to you and that brings you down, because it is harder to forgive yourself of your imperfections then to forgive others.  This brought my mind back to the problem that is out there that people find it so easy to put their best foot forward on their blog and weed out all the crap in their lives and just tell and show pics of the idealistic world they want to show and this is making some women feel bad.  They read them and think about how perfect this woman's life seems to be and then they look at their life and you can't weed out the imperfections as easily when they are surrounding you.  I've brought this up before on my blog, but after today, it seems worthy of revisiting.  I don't want my blog to become that...... so there is my kitchen in all it's glory.  (Lest any of you have been reading my blog and feeling bad about the idyllic beauty and perfection that is my life.)

Why does my kitchen look like this?  

Well, that's simple (kind of).  We moved into this house and my husband wanted to redo the cabinets right away, so I never did unpack my kitchen, just stacked the boxes of all the stuff I'd need around the table.  Then life and months happened and the cabinet project is half done, out of necessity I have put some things in the cupboards haphazardly, and the kitchen has become a fantastic dumping ground for baby equipment and work stuff.  The good news is Rob thinks he has progressed to the stage where I can load the cupboards and a little while after that (Saturday) I snapped and had it.  I am organizing and scrubbing the cupboards one by one and getting everything in them and then am going to throw the boxes as far from my kitchen as they will go then I will find a place for everything that does not belong in the kitchen.  At that point, we may not have doors on the cupboards, but we will be able to move around in there and maybe even utilize the table.  We still will have that golden colored fridge that freezes all the vegetables I bring home, but maybe just maybe, it will inspire us to get the bigger nicer beautiful black glass fridge fixed that is standing unused and wasted in the car port at the moment.  Ah, dreams........

Here is the view from the other side.  This view gives you a peak at the matching golden oven that has only two (dubiously) working burners.  It also shows the new computer I am typing on right now that never got moved to it's proper place in our bedroom.  

All in good time guys.

Did I mention that my dog has emotional problems and sucks her paws?

Potpourri (or a little Scout, a little Elles and a little Radiohead)

I've got some updates and information and blurbs about the lot, so I figured I would combine them into one post so you could get caught up on three of my very favorite things 

(I have more then 3 favorite things- Rob comes to mind, but I don't have an update of him on this post).

taken on Saturday morning, being a black footed ferret

Scout:

Scout suffered this weekend with another UTI.  Of course my girls only get things like this on Saturday, making it hard to get to see a doctor.  Saturday she had a stuffy nose and a sore throat and a low grade fever.  Saturday night she showed signs to me of a UTI.  Sunday she seemed pretty good if not a little feverish.  It was the Primary program in church and she had a speaking part, so we convinced her to get dressed and go anyway.  She has been nervous like crazy about this for months and has practiced, memorized her lines, and even had the courage to do it (once in a while).  We thought it was important that she ended up doing it, so we took her.  I would like to report that she was such a brave good girl and did it.  She was so scared and it took a lot of convincing and Paw Prints in a little purse around her shoulders going up there with her, but she did it.  We really were proud of her.  She said her part as fast as I've ever heard her talk, but she did it without looking at her cheat sheet AND feeling like crap.  I took her home after sacrament meeting and spared her the other 2 hours if that gains me any points for forcing her to go.

She took Advil through the day and seemed almost like her old self.  She woke up this morning pretty sad and hot and her back hurt in the kidney area.  Uh oh.  I made a morning appointment for her and she is now armed with antibiotics.  The deal is, the doctor said that if she still has a fever noon tomorrow, he wants to see her again and will probably recommend having the antibiotics administered through IV and that means the hospital!!  I guess the fever, which was over 102 at the doctor and it obviously getting into the kidneys makes the doctor not want to take any chances.  Yikes.  I would hate to have this happen to her.  She really seems great right now, so I have confidence that she will be fine with the antibiotics we have at home.  I can hear her right now singing cute songs, putting on costumes and playing with her jungle animals.  We did decide to get her checked out fully in a few weeks in regards to her urinary tract (she was diagnosed with reflux in the kidneys at about 3 months old, when she had her first UTI).  We are going to revisit those tests and see what they can tell us, including an ultrasound and this xray thing that is very unpleasant involving a catheter and medical imaging.   She had that test twice before 2 but not since.  This time they are going to sedate her cause it can be "tramatic" as they put it.  I think it was traumatic for her back in the day and very possibly what has caused her fear of doctors.  She isn't as scared of doctors right now as needles and shots (which of course go along with doctors), and I am afraid she is going to be getting some of those.  Good news is, they discovered that they can do it in Provo (Utah Valley Medical Center) instead of up at Primary's where she had the others, so that is something I guess.  We are really hoping and hoping for results that don't include the "S" word.

************Scout Update***************

She woke up fever free and went to school, so I am very optimistic.

Elinor:

 

Ellsies got fitted last week with splints for her thumbs.  They are worn all the time, not including baths and eating.  They keep her little thumbs out so she doesn't keep them in like she does and scratch them and all that bad stuff.  If they do their job, they should train her brain not to do that and make them used to being out and have her hands eventually work like normal little hands should.  She has really gotten good at adapting to no thumbs and holding stuff with them in and that is no good, we would much rather her use her hands like humans, as opposed to apes.  They don't seem to even phase her, she is just fine with them on (of course she is, given the tolerant little thing that she is), and we are noticing that she really doesn't do the hand flapping with them on.  She relaxes them a lot more.  Once I take them off however, she has a hand flapping party, but it's only been a couple days, so I would love to see that stop too.  Wouldn't that be awesome?  We are surprised that she stops the behavior with them on though.  Didn't think it would be that dramatic, but it seems to be right now.  So we are encouraged.  

We are heading to Primary Children's tomorrow, going to an appointment/ meeting with her doctors.  Dr. Carey arranged a meeting with us, himself, Dr. Filloux (her neurologist), and I think some interns, etc.  where we are going to go back to square one with her diagnoses.  He told us on the phone that it isn't really that strange if she has Angelman's that we haven't picked it up on the tests yet, (I assume this is because since she only has about 20% of the symptoms, it isn't a stretch that she would be in the lesser 20% cases that aren't picked up by the tests he has run thus far.  He listened to Rob tell him his concerns about her symptoms and things we feel she has lost and digressed in and he mentioned that it could possibly be something biochemical.  I googled biochemical and got a lot of talk about bio polar disorder and schizophrenia and I know that can't be right, so I decided quickly to not google anymore and just wait for the appointment.  I did however mention it to her cognitive therapist and she said he would be talking about babies that are born with an inability to process some metals or proteins or something like that, and so as the thing they can't process builds up, their body starts acting strange and reacting to it.  This is very interesting to me, thinking about the slight possibility it is something like that and wondering if she could be treated with a pill or something.  I don't know, trying not to think about it and for sure not getting my hopes up.  Just interesting.  I'm sure we'll know more tomorrow.   The appointment is at 4, and I will for sure update soon.  I would like to point out how horrible and complicated our day could be tomorrow if Scout actually had to be admitted to the hospital.  Seriously?  Could that actually happen?  Cause I think that is just a little too much don't you agree?  Fates?  Heavenly Father?  Karma?  I am letting you all know I'm not seeing that as being very nice.  (and if it is the way it is going to be, I'm going to need some instructions on how to figure it all out and make it work.)   

***************Elinor Update****************\

Last night's appointment went great.  Dr. Filloux was unable to make it at the last minute, but that didn't really matter to me.  Dr. Carey has been discussing Elles with colleagues from around the country.  Since he had a few directions to go when it comes to our next step in trying for a diagnosis, he thought it best to see Elle again in person before he decided the smartest direction to go.  His recommendation is to go with a broader rett test (his other idea at this point (the idea from a Angelman expert in Boston), is to do an eeg test -which measures brain waves)  apparently Angelman brains have really screwy eeg tests even if seizures aren't present.  If she gets a screwy test result that will tip the scales towards it being Angelman's quite a bit.  BUT given her (I forgot what he called it- the movements she has developed with her fingers), he would point more towards rett.  Here is some good news:  1. She would definitely have a lesser variant of the syndrome, and he would not expect us to see any dramatic losses at this point (ie my fear of losing eye contact and eating capabilities are very very unlikely given how she presents).  2.  Seizures starting at this time in her life with rett (after 2) are highly unlikely.  3.  Since she has shown improvement in all areas of development according to her last evaluation in August and even though we have seen some things drop off her abilities/stuff she does, he said that she would not classify as "regressing".  We figured that any loss would mean she is regressing, but apparently since she is overall showing improvement, that is a promising thing.  4.  Dr. Carey upon observation, feels that her limitations with her hands and body are affecting her cognitive abilities more then we might guess.  This gives me great hope that we will see greater things from her.  She really is more interested in toys these days and she is showing quite a bit of improvement in her motor skills- therefore, they will improve and as they improve, her cognitive skills should improve.  5.  He gave us a bit of hope about some things rett kids can do given her possible variables (ie some verbal skills, etc.)  6.  It was nice again to see with my own eyes such a wonderful doctor being so invested in our little girl and the long amount of time he was willing to spend talking to us and listening to our concerns and explanations (not to mention all the time he has spent discussing her with his peers).  It makes me sad to think that everyone in a situation similar to ours doesn't have the same experience.  We have absolutely hit the jackpot with Elle's team of doctors and therapists.  It makes me a little weepy thinking about how great everyone is and how much they invest in and love our daughter.  That is soooo important to you as a parent.

Also--- Dr. Cary pretty much shelved the idea that she has a biochemical problem yesterday given her overall good health.  She really is super healthy and almost never sick.  That doesn't mesh with having a biochemical problem. 

        
 Radiohead:

Thom Yorke announced that they are going to be TOURING next year.  Rumors about a tour have been circulating for a few months and taunting me, but I haven't allowed myself to believe it.  Having Thom say it in so many words this week cinched it for me.  HOLY CRAP!!!!  I am going.  There is no way they are coming to Salt Lake, so Matt, B, Cat?, Rob......pack your bags kids.  We're going-- this is your chance to see Emily hyperventilate, have a heart attack, faint, or any combo of the three  (I wouldn't be surprised if they came to Denver or Vegas, but we may have to go to California).  I am not missing it this time if I have to go without food for a month.  2012 is also seeing my parent's 50th wedding anniversary which the family is going to celebrate in Mexico in August.  So I am thinking that 2012 is going to be EPIC as long as the 2012 Mayan thing doesn't pan out- if it does, that would make it epic too I guess, but the end of the world is not allowed to happen until Emily sees Radiohead live.

*shaking my fist at the Mayan gods*

Also, this has been a grand Radiohead week, they performed on the season premier of SNL on Saturday and tonight they are going to be on a Cobert Report Special.  Good, good times.

Here are a couple promos that aired for SNL and they are so funny. 

Alec Baldwin cracks me up (I particularly liked the first one).

*****Colbert Report Update*****

It was really exciting watching this and seeing that the majority of the show was dedicated to Radiohead.  Thom's interviews were as endearingly awkward as ever and I must say- I love Stephen Colbert, but him juxtaposed with Radiohead was...... I don't know-- a little cringe worthy a few times.  BUT didn't take much away from it.  (Maybe I'm just not in the mood for any shenanigans when Radiohead is around- I'm all business.) Made me laugh a lot though.  I just know they have very very strong feelings when it comes to matters of global warming and what they do as a band to leave as small a carbon footprint as possible (why they won't come to SLC) and they weren't given a chance to talk about too much of what they do, but I suppose that doesn't matter too much.  Look at me!  I feel like I am coming across as negative about the show and that is not my intention.  I absolutely loved it

"Prepare yourselves Radiohead, you're about to meet television face"

Below is the shining jewel of the night, they sang a song I hadn't heard yet called "The Daily Mail" and it Totally.   Kicked.   My.   Trash.    (in a really good way).  This song is from a live session they did and put on the interwebs called "From the Basement" back in June and I hadn't been bothered to listen to it yet.  Who knew they debuted a fricken amazing song on it?  Not me apparently.

The Colbert Report
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Can I mention how much I love that Cobert's Harry Potter joke made Thom laugh?  (that intro was cut out of the show, so didn't see that until now.  Awesome.

Oh, and did I also mention they surprised me with "The National Anthem" at the end?  No?  Well they did.  Second best moment. 

(Worst moment was cutting the program off before the song was done.  I got to finish it this morning online though.)

Exhaustion

This is what happens when you spend an hour in your crib partying with your mobile friends instead of taking your nap. 

  Then after falling asleep, sleep for a total of 5 minutes.  

Then mommy makes you practice walking in your gait trainer while she sweeps the crab apples from the driveway.

 I love the little puddle of drool.

Just Like Heaven

*Before I write this post, I thought I would just make a small request to my readers.  I am going to be sharing some religious views I have that mean a great deal to me, so I ask that you treat them with respect while on my blog.  Being respectful of everyone's religious ideals is something I personally take very seriously and strive in my own life to always do, so I just ask while here, you do the same.*

Alright now that's out of the way, I thought I would use this post to share a few of my thoughts on what is going on with my youngest daughter, Elinor.  If you are a regular reader, you already know the story of where we are with her and how we got here.  If not, I will briefly sum up the journey we have had.

When Scout was 18 months old, I was pregnant with a crazy difficult pregnancy that made me feel terrible all the time.  I even threw up a few times a week (for those that know me well, you know what a big deal that was).  I felt terrible, I bled quite a bit, had migranes and I was measuring big.  I went to the doctors  a few times while bleeding to see if I was miscarrying and they always found a heartbeat.  So they sent me home.  One day they couldn't detect one, and did an ultrasound and during that ultrasound we were told that our baby had passed away and that I might get cancer from this pregnancy.  They took the baby that next morning using a high risk procedure that was supposed to cause me to hemorrhage and definitely need blood transfusions and  there was a chance of a hysterectomy.   I woke up to find out that miraculously I didn't even need a transfusion.  The doctor was quite surprised.  After testing, they found out that I was really pregnant with twins, one baby was perfectly normal, the other was a complete molar pregnancy that was made out of abnormal cells that eventually suffocated the twin and invaded my body with abnormal cells (that is what causes the cancer and the need for chemo).  The way they test whether you need chemo or not is to test your hcg hormone with a blood test once a week until it is gone, or starts creeping back up.  Every week mine fell and fell and against all odds, it went to zero naturally.  I say against all odds because for women with a cmp and a twin, they almost always end up needing chemo.  In fact, my hcg on surgery date was 1.8 million which is the highest I have found on the internet, and I think I am the only woman I have seen that came down from the same sort of situation without chemo.  This was exciting for many reasons, but mostly because the time line it took me to get to zero (almost 7 weeks) gave me the green light to start trying for another baby right away.  The loss I had at 19 weeks pregnant made me ache for a baby in my arms as quickly as possible.  Plus, Rob and I had plans to get Scout a sibling quickly.  Two years went by and there was no baby.  The doctor's couldn't figure it out.  Molar pregnancies aren't supposed to cause infertility.  They finally figured out I had a messed up fallopian tube and put me on Clomid.  After 3 months of that, I was finally pregnant!  I was shocked and we were overjoyed.  This pregnancy felt more like Scout's, I felt great, everything was going awesome, but I was nervous.  The last one was such a giant fiasco, you can't help but be scared.  During the ultra sound we found out we were having another girl and we (especially Scout) were overjoyed again.  That summer we had a scare with her heart beat, she had an arrhythmia.    After some specialists, we found out that it wasn't a problem and it went away. 

Birth day came and I was induced.  When she came she had the cord around her neck, and was blue.  She had a terrible first apgar, but a great second one.  The first day she didn't want to nurse and the nurses made a huge deal out of it, but when she finally got hungry, she nursed away like she'd been doing it her whole life.  We took her home and marveled at the sweet little baby we had.  She was the sweetest, quietest little thing ever.  She slept great.  She didn't want anything to do with a binkie after she was about 3 weeks old, but that was ok, she didn't seem to need one.  She started sucking her tongue instead (I didn't know that was what she was doing until much later).  She didn't seem to be able to figure bottles out, which wasn't as ok as the binkie thing, but we managed.  She started using her feet in interesting ways.  She would hold a toy in her feet and play with it with her hands.  Kind of weird, but very entertaining.  She didn't do things as fast as Scout, but I was determined not to compare my kids, so I let her do things on her time.  We managed to get her to sit by herself reasonably well by 9 months.  She finally figured the bottle thing out at 11 months (just in time!) When we got to her first birthday, I shelved the worry that she wasn't crawling yet (let alone walking).  We chalked it up to her being so dang happy and content no matter what she was doing.  She didn't need to go places, she was just fine where she was.  She was so happy!  She started laughing 6 weeks earlier then Scout did.  Her laughs were almost always reserved for Scout.

By 15 months and nothing having changed, the worry was getting harder to ignore.  I finally mentioned my fears to my doctor (they were about the cord being around her neck at birth, I was secretly fearing that she had suffered brain damage).  We took her in for a neuro exam with her ped and she did fine.  He mentioned that we could contact Kids on the Move (they are a program with our local school district that help kids 0-3 that are developmentally behind).  He suggested that these people could maybe get her moving and they often observe more then a doctor that only sees a child during an office visit.  So we did and they accepted her in their program.  Right away, they could see that something wasn't quite right with her.  This started a chain of testing, including appointments with Primary Children's Medical Center in Genetics and Neurology.  We were scared, but couldn't imagine she was really bad off.  After a few more months though, I started accepting that we were probably looking at something more then a child with a few learning disabilities.

After talking to her Geneticist, we basically found out that we were most likely looking at a child that had severe mental and physical challenges.  Because of her history and a few other clues (including her extreme sweetness and happy demeanor) the doctor figured she had Angelman's Syndrome.  He also thought it could be Rett Syndrome.  We took her home that day and a feeling of peace and acceptance washed over me.  I was ok with this.  I knew we would have a different life then I had planned, but somehow, this was ok.  Elinor was the nicest baby I had ever been around, so how could it not be ok?  As of now, she has had two Angleman tests (both normal, which knocks out 80% likelihood of that one), one rett test (normal, I don't know the odds) and an MRI which also was normal (that takes away any chance that we are looking at brain damage and tells us what she has is strictly genetic).  We are facing more genetic tests to isolate the genes that Angleman and Rett effect.  Where we go from there, is most likely no answers.  

I do know one thing.  Elinor is exactly the person she was meant to be and she is exactly where she was meant to be.  We went through a lot to get her here and I am grateful every hour of the day that she is my baby.  She makes me feel so good when she is around, it's like she radiates this feeling of peace and love that really soothes my soul.  I don't know what I ever did without her.  Shortly after finding out all this, I came across a sister of an old friend's blog that has a daughter with cerebral palsey and she had a quote on that post I read that has changed my life.  It is from a book called "The Water Giver", a book written by a mom that had a son with sensory issues and pretty big learning disabitlites and she really really struggled with that and they did not have a good relationship.  At 15, he was in a skateboard accident and suffered severe head trauma.  He was in a coma for months and during this time, she totally changed and when he woke up, they had a beautiful relationship from then on, because she learned to accept him for who he was.  She ended her book with this (which is the quote I liked so much):

"Motherhood is about raising -and celebrating- the child you have, not the child you thought you would have.  It's about understanding that he is exactly the person he is supposed to be.  And that, if you're lucky, he just might be the teacher who turns you into the person you are supposed to be."

I have no doubt in my mind that Elinor is going to be one of my greatest teachers.  I like how she said person instead of mother, because I feel that Elinor is here not just to make me the mother I need to be to my two girls, but the person I need to be to come even close to reaching my potential. 

My church (The Church of Jesus Christ of Latter-day Saints or "Mormons") has some very fundamental views on Heaven and this life on earth.  We believe that we are spiritual beings that are currently living a life on earth and when that life is done, we will go back to living the spiritual life we were living, with this earth life just being a tiny part of our eternal life.  This is the Lord's plan for us.  As part of our spiritual journey, we need to spend some time on earth as a very important part of our plan (important, even if it is a comparably short time).  It is, for lack of a better term, a test.  We are being tested on this earth to see how well we do.  How we treat our fellow man, and how we treat God.  We are experiencing things we can't experience anywhere else, mostly temptations and having free agency to make our own choices.  We can only hope that we do ok here and make some right choices now and then and then move on to greater things after we are gone.  Our families on earth are our families in heaven and have the opportunity to be together forever some day.  

We believe that sometimes there are spirits that are perfect.  They somehow are beings that don't need to be tested on earth.  I am a person that needed to come to earth to go through the ups and downs and choices and to prove myself worthy of living a life in heaven with God, etc.  Elinor needs no such test.  She is there already.  She has a free ticket to heaven (as do I believe, some babies that are taken before they have the opportunity to make choices and live a life here, also included are people that mentally have no way of being accountable for their choices).  A huge part of this "plan" is to gain a body, even if it is just for a short time.  Some babies are taken before they can even take their first breath.  Some, come to this earth for us, not them.  That is what we believe Elles is here for.  She doesn't need this, but we need her.  We need her to teach us that life is about so much more.  I am sure she has a lot to teach anyone that will listen. 

I don't know what the future brings for Elinor.  I don't know how far she will go in life.  I don't know if she will ever walk.  Chances are that she will never talk, we might get a few words out of her if we are lucky, but it looks like she most likely won't develop any real language skills.  If she has rett, I really don't know where our future could lead, she may loose the ability to even feed herself or use her hands with any purposeful movements.  Or, and this one fills me with the most fear, she could stop making eye contact with us.  Although, she used a spoon pretty good for the first time this week and we are over the moon about it.  Her hands seem to have a little more control then they did a few months ago.

That is another gift she's given us.  I can't describe the feeling we get when she accomplishes something.  What a wonderful feeling it is to see her overcome her limitations and progress.  I don't want to discredit the awesome milestones that Scout has reached.  That is awesome too, but with Elle's limitations, her triumphs are grand indeed.  It's a different feeling and makes me feel a joy I can't describe.  I am so grateful to be able to celebrate a child's little advances in such a way, they each feel like a miracle and miracles are special things to witness.  I look forward to her many triumphs to come.

One of the most remarkable things about all this, is that I have a daughter that I will meet properly only after we have both passed.  I will most likely never have a conversation with her on this earth.  When she sheds this earthly body, she will be whole, and have a sound mind and be able to do anything and everything she can't do here with her limitations.  What a reunion that I have to look forward to!  (But hopefully not for a long, long time........I can wait 60 years or so.)

I think Elle is going to (if I let her), change me in ways I needed to be changed.  What better motivation could I have to be the best person I can be, then to have this shining example of goodness and such a beautiful spirit in my own home?  I am not the person I should be, I make mistakes every day and wrong choices.  I don't do all that I should be doing.  But I want to do better, Elinor more then anything I have ever come across in my life, makes me want to do better.   It gives me pause and makes me feel so humbled that Heavenly Father trusted me to raise one of His special spirits.  I only hope I can endeavor to live a life that makes me deserving of her, and raise her to make my Heavenly Father proud.  I bet she was hard to let go of, maybe that's why it took so long to get her here. 

Untitled from Emily Pugh on Vimeo.

This is a video my brother Matt and his wife Bronwyn (B) made for Elinor.  Thank you so much you guys for making this video for our special little one.
I hope you all like it and can get a glimpse of the joy we feel living every day with this beautiful girl.

What Emily's Been Watching, August Edition

No intro this month, can't think of one.

THE TREE OF LIFE (2011) [PG-13] Drama.  What started for me as a "I kind of want to see this movie and if I do, it better be in the theater because it is supposed to be visually stunning and my crappy tv that wouldn't know what to do if ever confronted with a Blue Ray would never do it justice, so who do I know that would be interested in seeing this with me?  I bet Sue would..." turned into a reunion of the Utah peeps movie club, or, family in Utah that wants to get together once a month to see a movie in the theater (which has been unofficially disbanded for probably about a year now).  Posting my invite to Sue on facebook raised interest and so 4 of us (+ cousin Dan and sister Cat) went to the Broadway Theater (only theater in Utah that frequently plays arthouse films.). This is a movie that Terrence Malick has been working on for many many years.  My only other Terrence Malick experience was The Thin Red Line, and I am perhaps the only person I know that liked that movie more then Saving Private Ryan (the two movies were compared a lot since they were both released in 98 and were about WWII), I just was more impressed/blown away with The Thin Red Line, and most other people I hung around with at the time couldn't stop talking about Private Ryan and thought I was a little nuts.  Perhaps, but Terrence Malick had my respect, and he certainly didn't lose it here.  

So, The Tree of Life.There is very little narrative, but narrative is not important here.  This  is a movie that was conceived to allow the viewer to get out of it what they want to, without holding your hand and making sure you get what you are supposed to out of it, and if all you get out of it is a few unbelievable camera shots, it was worth sitting through.  Because, visually, it was incredible, many moments of the film gave me that feeling I get wandering around an especially great art exhibit or stunning cathedral, you know that feeling where you just feel like you are going to drown in beauty and you almost can't comprehend it?  (I got that feeling a few times watching Planet Earth to be honest.)  Besides the visuals, it was just a good film that inspired you to think.  I thought and let my mind wander the whole time I was watching it, I thought during the drive home, I thought trying to get to sleep that night, and I dreamed thoughts about it through the night.  

It revolves around a 1950's Texas family, but it is more a spiritual journey that goes back to the beginning of time and our place in the universe and accepting loss and I could go on, but I won't.  You should experience it for yourself.  Or not.  This movie is not for everyone.  Many people may be bored.  Many might be frustrated that there isn't a really concise story to tell.  I think that is ok.  You probably know pretty much right now if this movie is for you or not.  It is a little surreal, yes- perhaps a little pretentious, and quite a bit avant-gard.  If you go into it with the right frame of mind and let your mind go with it and think in different directions and let your eyes feast on some beautiful imagery, I think you will walk away from this picture a little changed.  Emily's brain hurts.  Let's move on to:
  
 Wait, first a trailer of Tree of Life, then we'll move on.

TWIN PEAKS, THE COMPLETE SERIES (1990-91) [NR]  Crime Drama.  Oh Twin Peaks, where do I begin?  Lets begin with the fact that I spent the rest of my entire month lost in Twin Peaks land.  This is a show I have always meant and wanted to catch up with.  I have heard about it since it aired with I was in middle school.  It was one of those television events in history that found it's way into everyone's consciousness when it was airing no matter what your age or situation.  It was big.  Now I know why.  What a crazy, messed up, wonderful, head shaking ride.  Let's just say that David Lynch had me in the first half hour and had a life long fan by the 4th or 5th episode.  I even forgave the crazy directions it went in the second season, crazy directionless drivel though it was.  When it was bad it was BAD I am talking brow furrowing, soap opera, crap.  I could also mean some really really bad special effects.  But when it was good, it was some of the best tv I have ever seen in my life.  The good stuff made the bad stuff kind of endearing in a way I don't know if I can explain.  David Lynch man, that guy is a GENIUS.  By genius I mean he has a way of making weird and awkward so cool.  He (when directing) would hold some scenes uncomfortably long, he would throw things in that were just straight up too weird to comprehend.  He also had a role in the show for maybe 4 episodes and I enjoyed his character so much.  He played FBI agent Cole, who is deaf and so he yelled everything and everyone talking to him had to yell and it was just executed so great.  Every time he showed up it was a total treat.  There is a moment where Agent Dale Cooper walks into the station looking straight ahead,  has no idea Cole is around, but he stops and without looking snaps in Cole's direction and at the same time Cole says (yells) "A-gent Dale Cooper!" without looking too.  It is just so them, you don't even really know Cole, but this little moment is all you need to know about them.  Did I say Dale Cooper?  Oh yeah, perhaps I should bring him up since he is the shining gem of this series but I think he is going to be too hard to explain to my satisfaction.  He is perhaps my favorite character ever written for tv.  I think I have become a total Twin Peaks fan girl and Agent Cooper is why.  He is quirky, he likes pie, trees, coffee, donuts and Tibet.  He tweaks the Sheriff's nose and gives the best thumbs up and snaps ever. Kyle MacLachlan's delivery and timing should be studied by every actor that ever came after him.  BRILLIANT.  Hmmmm.  Maybe I should explain what this show is about.  Basically, it begins with the homecoming queen found dead on the beach.  We then are thrown into the lives of the people of the town and trying to find out who killed her.  Everyone turns out to be seedy and have private lives that is more then meets the eye including Laura Palmer (dead girl), who isn't the squeaky clean girl you might think she is.  It isn't all as straight forward as that, in fact it goes bat crazy from there.  I'm talking little-person-dancing-in-a-black-and-white-and-red-room-talking-backwards crazy.  And then it begins to get weird.  There are many characters and storylines and scenes I couldn't give a CRAP about.  But then there are characters and story lines and scenes I will remember forever.  
This entire show is a coo-coo experience and I am so glad I took the plunge.  It is a shame it got cancelled and therefore the series has ended with a million cliffhangers, including one that knocked my socks totally off, but also in a way, it was a perfect way to end it and I can think and stew and let my imagination go a little nuts.  It had some jump worthy scarey moments I didn't expect to be a part of the show, and also has a scene that made my jaw hit the floor while watching and then it hit the floor again when I realized that it showed on prime time, network tv in 1991.  Seriously disturbing,  On another note, while I have a lot to say about her character and none of it is good, I have found the only role to date where I could stand Heather Graham.  Didn't know that could exist. I would also like to thank Twin Peaks for introducing me to the best gun racks EVER that apparently exist outside this show that makes me wonder if hunters have a sense of irony I knew not- or it could be total ignorant hillbilly offensiveness (either way it's great).   Also, if you were wondering, the portrayal of Laura's father done by Phil Hartman when SNL did a Twin Peaks parody was not hyperbolic AT ALL.  Emily recommends Twin Peaks if you think you can handle it.  Again, probably not for everybody, but for who it's for, you may know who you are and you people are in for a massive treat.  And if you find yourself in the middle of the second season wishing things would get better, hold on to your pants, it is worth it to stick it out.

Twin Peaks parody by Saturday Night Live (1990) by Malmignatte

I also watched Sherlock again.  This time on DVD so I could watch the commentaries and extras.  Yummy.

I guess Twin Peaks will have to be my Wall of Shame movie for the month, since it is about all I got around to watching (it's on Netflix streaming by the way).   It is a series that most well versed tv people know and love, and I've always meant to watch, but it isn't quite what I meant when I was going to knock off wall of shame stuff.  Oh well, my blog, my rules, my world.  Twin Peaks, Wall of Shame.  Boom.