Thanksgiving Thankfulness

In the spirit of Thankfulness I thought I'd jot down what I'm thankful for.  Here goes...

I'm thankful for my mortgage payment b/c that means I have a house to live in.

I'm thankful for my husband's stressful job b/c jobs are hard to come by these days.

I'm thankful for the noise in my house, even though it drives me crazy, b/c that means my kids are able to run, jump and play.

I'm thankful for our friends who understand us and know that just b/c we don't talk everyday (or return phone calls) that we don't love them any less. 

I'm thankful that the baby sleeps better these days and in HER bed (it's the little things that make me happy).

I'm thankful for the 100 questions that Cade and Aly ask a day b/c it means they have the ability to process information (some people take that for granted).

I'm thankful to have family to spend the holidays with b/c there are lonely people in the world that are forgotten about.

I'm thankful for sweet tea b/c it's awesome.

I'm thankful for wonderful doctors for Aly. 
I'm thankful that my God has mercy on Aly.  Even though on paper she shouldn't be the walking, talking, fiesty girl that she is, He makes a miracle out of her daily.

I'm thankful for BMX, football and baseball.  They keep Cade busy, active and give him a sense of pride in himself.

I'm thankful for our BMX family and the wonderful friendships that we have formed.

I'm thankful for Avery's kisses (drool and all).

Last but not least, I'm thankful for Scotty. 12.7 years of marriage and I love him more today than I did the day we got married.  We married as practically kids and grew up together.  We vowed in good times and bad times and it's been just that.  There's noone I'd rather spend the next 12, 24, and 48 years with.  Oh, and he's still hot :)

Reflections

This week is Mitochondrial Disease Awareness Week.  It's making me think about Aly and what we are currently going through and what she may go through in the future.  Mito is a very difficult and temperamental disease.  It's a day to day illness, just because she is acting fine today doesn't mean she won't be unable to get out of bed or be in the hospital tomorrow.  If she is on a good streak I tend to forget what her little body is going through everyday, even if she looks fine on the outside.  I think it's great to read about Mito and be educated on the disease but it scares me to do so.  The more I read about it the more scared I get.  Although I am not in control of the progression of her disease, I don't want to think about what the future may hold.  Just because we trust Jesus with our entire lives doesn't make Aly exempt from struggles.  So far God has not chosen to heal her.  I am not upset about that.  Some people get upset at God and their faith falters if they do not get the healing that they expect.  I truly believe that Aly is a little miracle right now in her current condition.  If you were to look at her on paper, the list of diagnosis, secondary diagnoses, and things they say she should not be able to do, would shock you.  I could list 10-15 things that is "wrong" with her but by watching her run, jump, squeal, laugh, etc no one would ever know.  That to me is an answer to everyone's prayers. 
Mito is different than other diseases b/c kids look fine on a day to day basis.  The energy that they lack is not the energy that makes you run and jump but the energy to make their body function.  The energy to walk, talk, eat, breathe, heart to pump, stomach to digest food, muscles to move, fight off common illnesses, etc.  Things that our bodies involuntarily do. Their cells work overtime to do the job they were created to do.  Those cells die off and eventually their systems fail.  I am not saying all this so people feel sorry for Aly, I'm saying this to make people aware of this disease that is widely unknown and misunderstood.  There is no cure, only temporary management of symptoms.  I had never heard of Mitochondrial Disease until Aly was diagnosed.  Since then I have heard of and met several others that are going through the same struggles we are.  Mito is not as "rare" as we think.  There are different severity's and no 2 people are affected in the same ways.  There are common symptoms among them all but each individual may have a combination of systems affected.  
I don't know what lies ahead in 10 years, 5 years, 1 year, next week or even tomorrow but I am thankful for the time I have with Aly.  I will do my best to treat her as "normal" as possible and let her do the things she is capable of doing.  Each day is a gift and I will treat it as that.

Day of Fun

We've had some good family time the past couple days...well if a day full of doctor appts counts too.  Today though we went to the Indianapolis Children's Museum.  The kids had tons of fun, including Avery who spent her day sleeping, eating and riding in a stroller.  In the Dinosphere section Cade (and Scotty) were fascinated by the fossils and dinosaur bones.  Cade and Aly got to dig for bones, it's the one thing Cade had talked about doing for days.  Then there was the Barbie Fashion Expierence, oh my gosh, Aly saw the heavens open and heard angels sing, she loved it!  She got to dress up like Barbie and walk down the runway as Cade pretended to be the photographer.  She pranced and danced down the runway and "Vogued" her little butt off.  She also got to style Barbie heads hair.  She stood at those mannequin heads for 30 minutes and would not leave.  We asked several times if she was ready to go, she would pause her hair brushing, turn around and say "nope", then turn back around and continue to style Barbie's hair.  She would even turn the head around to the mirror so the Barbie could see the hairstyle she gave.  I know Aunt Lori is proud right now.  Cade had his first experience at rock climbing.  He did great!  He got stuck about 3/4 the way up the rock but figured it out and got himself all the way to the top.  I was so proud of him for not giving up and figuring out how to get all the way up.  He was proud of himself too.  When I asked him how he liked it he said "It was fun but it was tough!".  At the end of the day when I asked the kids, like I always do, what their favorite part was Aly said "Dressing up and fixing Barbie's hair" (shocker).  Cade said his favorite part was seeing all the dinosaurs.  I asked him if there was a specific part of the dinosaurs (b/c there was alot) and he said the "Palientografist".  I stared at him for a second and said "what?" he repeated the "Palientografist".  Thinking he was mispronouncing the name of a dino, I asked which one that was.  He said "you know the guy that digs the bones up", OH!  The Paleontologist!!  Then he said "I want to be one of those, but I have a long time before I have to decide." 
By the way, we had to go back to the Barbie section one last time before we left for the day.  She needed just a little more fashion experience time!

Chatter

There is so much extra chatter in life and it's all driving me nuts.  Every direction I turn is some irrelevant news or headline that is cluttering my life.  After a restless night of sleep (mainly b/c of the 3 month old sleeping next to me) I wake up, turn on the TV to hear the weather and before I can find out whether to send Cade to school in pants or shorts I've heard about Arnold's baby momma, Charlie Sheen's goddess, James Frey's lie to Oprah 5 years ago, whether men or women look better with gray hair, Ivy Tech's "how to meet your perfect mate" class (seriously??), and that's just the beginning!  After doing the laundry, dishes and sweeping the floor I realize it's only 830am.  So I decide to eat breakfast and scroll through Facebook.  Then I find out how the end of the world is coming via zombies and that Evansville Indiana is the fattest city in America.  Not only do we get to read the articles but we also get to read everyone discussing the articles.  The comment I would have liked to leave would have been "stop complaining about it, get off FB and take a walk!"  That of course was the one time I held my tongue.  The adrenaline I've been running on for the past 3 months has worn off and the constant influx of crap to my brain doesn't help the situation.  There's enough noise in everyday life.  Kids screaming, babies crying, dogs barking, phones ringing, doctors saying this or that, therapists saying this or that, ENOUGH!  I want to shut it all off and just be quiet.  The Bible says "Be still and know that I am God" (not sure exactly where but it's there), I want to do just that.  How can I figure out where I am in life if there's constant outside noise?  I can't even tell if my thoughts are MY thoughts or something I heard somewhere.  Technology is an awesome thing and I'm not saying we should shut out all technology but the "information age" can wear on a person's sanity.  Shut off the news and listen to music, turn off Facebook and read a REAL book (gasp, for all you non-book readers), turn off the video games and go for a walk.  De-clutter and come back to center.

Jesus vs the Devil

With the recent events in Japan my mind's wheels have been turning and I'm realizing that life is shorter than we think or expect.  Those millions of people didn't wake up that morning knowing that a massive earthquake was going to shake their world and then a tsunami would wash away whatever was left.  So all this has me thinking about what is to come for not only me but my kids.  I asked Cade about heaven and what happens when people die.  He says when you die you go to Heaven to live with Jesus...unless you are bad then you go under the ground with the devil.  I told him that you had to ask Jesus to live in your heart in order to go to Heaven.  He then folds his hands, closes his eyes and very quickly says "Jesus, come in my heart".  I'm trying hard to explain on a 6 year old level but also I don't want to elaborate on Hell b/c I don't want to scare him.  I'm already not fond of him talking about the devil.  I told him when Jesus lives in your heart you have to be good, nice, obey your parents and not be mean to your sister.  I figured I should work this to my advantage.  He then very seriously says "Mom, I try my hardest to be good but the devil just takes over and makes me do bad things."  I told him that Jesus is stronger than the devil and therefore he should be able to be good.  To which he replies "Jesus and the devil made a line in my heart and Jesus has crossed over the line to fight the devil but the devil is still there a little and makes me mean."  Seriously??  How do I respond to that?  Even a 6 year old grasps the age old concept of "the devil made me do it". 
Aly on the other hand says Jesus lives in Heaven and lives in her heart so her heart is Heaven.  Whatever works I guess!

On another subject:  I'm getting increasingly frustrated with what he is learning from other kids.  There is a particular girl in our neighborhood that he plays with all the time.  She's his age and they play good together (for the most part).  They fight and get mad at each other, Cade will tell her to go home and not come back then the next day they're back on the trampoline again.  My problem is this girl apparantly says bad words and talks about things I don't think Cade should be hearing yet.  She is the only kid in our neighborhood that is Cade's age so that makes playing with other kids hard b/c I don't want him playing with kids alot older than him.  Cade has started saying things and when I ask him where he heard that it's always the same answer.  He knows what is right and wrong but he is also a curious 6 year old boy.  Thankfully, at this point in his life he still tells us everything and will ask us what something means.  I'm not a fan of him losing his innocent to the world mindset.  Especially from kids his age.  I don't think telling him he can't play with her is sending the right message either.  I don't want him to think he can't be friends with someone just because they are raised differently.  That's not being a light to the world, that is teaching him to be an elitist.  This parenting thing is tough!  When kids are babies and they cry all night and we think "I wish they would get older so things would be easier", we do not realize at the time that babies are the easiest.  I truly think newborns are the easiest stage of parenting.  Yeah, we're not getting any sleep but it's only b/c the baby is hungry not b/c she asked what sex is.  I'm sure there is a lifetime of lost sleep ahead of me!

I Love...

With the birth of my 3rd child being a week away and while I was sitting in the hot shower clearing my stuffy nose, I was reflecting on why I love my family.  I decided I should record the reasons, you know so I can look back and read it when I want to strangle them :-)

I love finding Barbies hanging from the anchor cord of a toy pirate ship
I love finding Spiderman and the Hulk in the Barbie house (this means they are playing together)
I love that Aly is 3 and can quote the entire Tinkerbell movie word for word
I love that Cade runs around the house singing "Who am I" by Casting Crowns (off key) and to show he   doesn't discriminate the next time he'll be singing Jimmy Eat World
I love that Aly says "waga" (water) and "tomada" (tomorrow)
I love that the little girl that the doctors weren't sure would have regular mental development and went through speech therapy starts her sentences with "Actually" and "I suppose"
I love that Cade said he would paint a wall of his room pink so the baby could share with him instead of Aly
I love hearing footsteps early in the morning and getting up to find Aly in Cade's room playing with his toys while he's still sleeping.
I love that Cade is starting to read and write and he leaves taped up notes all over the house
I love that his notes are spelled phonetically and it really takes concentration to figure them out sometimes
I love that Cade can throw a huge fit, say we're mean and slam his door then 5 minutes later come back and ask his daddy to lay down with him. (okay that is frustrating too)
I love that when I lay down with Aly and she thinks I'm asleep she will put her arm as far around me as she can and kiss my shoulder.

I can't leave Scotty out so:
I love that he won't deny me anything
I love that he goes to work everyday to provide for his family
I love that his wife and kids come before anything else
I love that he's so predictable
I love that he spends so much time with his kids
I love that he has date night with Aly every week
I love that Cade is his best friend
I love that he cries
I love that I know the next move he's going to make before he makes it and when I call him on it he laughs
I love that he devotes so much time to Cade and they do so many fun things together
I love that when we found out we were having another baby he was thrilled from day 1, even though it took me months to be okay with it.
I love that we have no secrets.
I love that he always puts me first in anything.

Finally, I love that in the time it took me to write this every person in my house managed to frustrate me.  So, I think I need to go back to the top and read it again, just to remind myself of what I love about them!