She needs you....

I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See there is a little girl that needs Your help
I've done all that I can do myself
I'm tired
I'm sure You can understand
Each night as she sleeps
I go in to hold her hand
And I try not to cry
Still the tears fill my eyes

Can You hear me?
Am I getting through tonight?
Can You see her?
Can You make her feel all right?
If You can hear me
Let me take her place somehow
See, she's not just anyone
Sometimes late at night I watch her sleep
I dream of the girl she'd like to be
I try to be strong and see her through
But God who she needs right now is You
Let her grow old
Live life without this fear
What would I be
Living without her here
We're so tired, and we're scared
Let us know that You're there


Can You hear me?
Can You see her?
Please don't leave her

adapted from "He's My Son"

The Widows of Fall

Widows of Fall

(tune of "Boys of Fall")

When I smell exhaust, and diesel gas,

there go the husbands, grandpas, and the dads.

Combines are growling, its another fall.

Tears start to roll for widows of fall.

Why would anybody want to be in this club?

Takes every ounce of wine, margarita and Bud.

To be a single parent each and every fall,

queens of the house man, were widows of fall.

Chorus:

Well it's -try to quiet the kids' gripes,

and it's-listing things I hope harvest buys.

It's homework I can't do at night, and yes sir I want to BAWL!

It's-I'm so tired just want to crash.

THe stove is broke and car's out of gas.

It's-I've got your blankie, I've got your snack never mind about me at all!

You widow one wife, you've got us all,

widows of fall...

In little towns like mine, that's all we got,

us poor harvest widows swarm the coffee stops.

All our farmer hubbys think they know it all.

They forgot to tell us we'd be widows each fall!

Chorus:

Well it's -try to quiet the kids' gripes,

and it's-listing things I hope harvest buys.

It's homework I can't do at night, and yes sir I want to BAWL!

It's-I'm so tired just want to crash.

THe stove is broke and car's out of gas.

It's-I've got your blankie, I've got your snack never mind about me at all!

You widow one wife, you've got us all,

widows of fall...

It's hard to have a disabled child.

We have good days.

We have great days.

We have hard days.

today is a hard day.

Words............

Words that describe rainbows: beautiful, amazing, unbelievable...

There are over 200,000 words in the English language...


so many that there has never been an English dictionary big enough to contain all of these words...


As if this weren't enough...new words develop daily....for example: 10 years ago had you heard the words:

emoticon?

blogging?

ring tone?

texting?

instant message?

twitter?

skype?

....most likely...no.

did you know that the longest word in the English dictionary has 30 letters?

yup-pseudopseudohypoparathyroidism.... want to know what it means???

me too...

I read and reread the definition and all I can discern is that it is some kind of disorder?...

Want to know the shortest words in the English dictionary?  

they are a, and I.

Ok Ok quit hounding me...I'll tell you ! The word (in the dictionary)  that has the MOST vowels?...

euouae

 ( it is a mnemonic device used in medieval music to denote a sequence of tones.)-but you knew that... LOL

and I can't tell you the word with the most vowels without telling you the word with the most

consonants...

it's: twyndyllyngs- (a word of Welsh origin meaning "twins".) as in...

"God never blessed  ME with twyndyllyngs, he knew I was doing well to handle them one at a time"... ha.



(meet one of my "one at a times...") LOL



It is comforting to me to know that if  I need a word to describe something, there are 200,000 (plus) for me

to choose from.



This being said...I, at times feel that there are words that are missing from this: beautiful, unique, vast, expansive, extensive, ubiquitous, impressive, unbelievable, implausible, improbable, excellent, superb, tremendous, prodigious, phenomenal, astonishing, and extraordinary language...



Here are just a few examples:


First example...what is the word for that thing that no one (including you) can see...you know the one...that thing that trips you... (not so you fall but just enough for you to do that embarrassing staggering run...those big clomping steps that keep you upright...but SMOTHER your pride...)   - so you turn and glare at the pavement so that anyone that witnessed this thinks, " Oh that poor person MUST have tripped over a carelessly placed boulder!" rather then..."Geez-what a clut-zo!" ....yeah, that invisible thing...what is that called?   hmmmmmm......




"What in the world did I trip on? It felt like a carelessly placed boulder!"


Example #2-What do you call it when you stand up way too fast... OR after you have been standing on your head for a really long time (you know like you did last night) you see all these little flashy lightening buggy things...what the heck do you call those little flashy things anyway.......???

(I should spend less time standing on my head...oh the floaties!!! )

Finally, example #3-What do you call it when you speak too fast (and this generally ONLY happens when you are speaking to someone like: your boss, or the president of the United States...ha) You know when you are trying to say something like...mini-van but you say vini-man....or...you try to say ...Fruit Loops but you accidentally say: loot froops... -OR- even worse!--- you try to say something like: fancy heart and ....(gulp)    ....yeah well...What is that called???



(I just HATE it when I do that...)

To sum it  up...the babies have it ALL figured out...smile when your happy...scream when you're not...

enough said... : )

(Who needs 200,000 words when you have smile or scream???) : )

( I just love it when she screams- then I tell mama..." I DIDN'T DO IT!")



He sent you ...to me...

I would die for you

Lay down my life for you

You're the only thing that means everything to me

When you're in my arms

You make me prouder than

Than anything I ever could achieve

And you make everything that used to seem so big

Seem to be so small since you arrived.

I often wonder why,

Someone as flawed as I

Deserves to be as happy as you make me

So as the years roll by

I'll be there by your side

I'll follow you wherever your heart takes me

Cause you make everything that used to be so big

Seem to be so small since you arrived

Now anyone who's felt the touch of heaven in their lives

Will know the way I'm feeling, looking

In my Ella's eyes

That's why I can't bear to be too far away

I know that god must love me cause

He sent you to me on angel's wings

from: Angel's Wings by Westlife

(ok I added the Ella part : )  )

I was talking to a very close friend about Ella recently. OK I admit I may have been feeling a little sorry for myself. She said to me, Ella is so lucky to have a mom as good as you are. I snapped back, "It's not like I had a choice, I didn't choose this!" Calmly (as is her fashion) she said, God and Ella chose you to be her mother...

Gulp...

I guess I hadn't thought of it like that (isn't that what truly good friends are for? To snap you back to reality?)-

ESPECIALLY when you are feeling sorry for yourself???

If God and Ella think that I can do this, I certainly can't let them down!

Thank you God and Ella...I accept and an honored to be Ella's mama.

I don't promise that I will always do everything right... What is it I saw on a friends post recently?, "There is

no way to be a perfect mother, but a million ways to be a good one”  The one thing that I CAN promise you

(God and Ella) is that I will NEVER be a perfect mother...(don't feel left out though Ella, this goes for your

sisters too-not just you! : )  ) I will try though, I'll try soooo hard to do the best for you always.

I'm learning here too. I know that there are going to be so many things that you will need that I dont know

anything about...but I will learn, I will keep trying until I know everything about everything...as far as you are

 concerned...

Ella-before you were diagnosed, I was going back to college to finish my Master's Degree in Education.

That is now on the back burner (and that is just fine) My new master's degree is in Ella and Rett's

Syndrome...

I will learn and learn and learn. And after I am done...I will learn more...

I'm on your side kiddo...we're gonna do this together.

Thank you God and Ella...

Thank you God for Ella.

The Purpose of Things

Yesterday something sad happened. Well, at first I thought it was sad. Until I started thinking...
Recently, Ella's balance has been deteriorating. I understand that this is part of her disorder and it may come and go for a long time. Recently though, she's been falling and really hurting herself. I called one of the people who provides her with PT services and asked him NO I DEMANDED of him that she get a helmet. This is to keep her safe, when she plays, when she loses her balance, when she falls.

So it seems strange for me to say i was sad when he showed up with it yesterday. After all, I had demanded it of him.

Bless his heart, instead of a big, clunky medical helmet with thick padding and wide velcro straps in some horrid color like black or brown or grey...

He went shopping around and had found her a little purple bike helmet with panda bears on it. It fits her, its comfortable on her, she plays in it just fine. It doesn't seem to bother her at all.

Ella in her new helmet!

UT OH- Here comes the selfish,
this isnt happening to my child,
this isnt happening to us
this must be someone elses problem...Jenifer (I thought I told her to go away!)

I'm was little embarrassed (at first)

I'm now "that mom"

 the one that has that kid who has something wrong with her

" The one you might see at the store and think "I wonder whats wrong with that kid..."

and it so obvious that there is something wrong because the helmet gives it away...

That's

who we are

now.

OK enough of THAT...go away THAT Jenifer-I don't like you.

So after I shoed HER away...kicked her out the door, pad locked the door and cemented it shut  : )

I started to really think about the purpose of things...

What is the purpose of a towel?...it is to dry things off.

What is the purpose of a glass?...it is to drink liquid out of.

What is the purpose of a helmet?...

that's easy...

whether it be a helmet for a disabled child who falls, or a bike helmet or a baseball helmet or a firefighters helmet or a coal miners helmet or a football players helmet (I could go on and on)

Whatever kind of helmet it is, it is ALWAYS used to protect and keep someone safe.

I requested this and put it on her because I NEED for her to be as safe as she can be at all times.

I then started to look at this a little differently, Ella's purpose for wearing the helmet isn't to keep her safe if she fell off her bike BUT she happens to be using a "bike helmet" to keep her safe.

Lots of kids her age are starting to ride little bikes and wearing these little helmets.

SO I expanded the 'purpose' of Ella's helmet...

We went outside, I put her on her sisters bike (holding her up and on of course)

and we rode around the yard.

She LOVED it, she laughed, she smiled, I got kisses.

I learned today that maybe the best way to keep your child safe is to provide them as much normalcy as you possibly can...

Hold on tight Ella, you can do it.

Precious lives we are entrusted with...

Today, my 2 1/2 year old daughter (who has Rett's Syndrome) put her arms around my neck and squeezed. Then she put her lips on my cheek, and laid her head on my shoulder.

THIS...from a baby that can't walk, can't talk, can't use her hands.

I learned today with certainty that... despite all of the things that she can't do, she CAN love. (and express her love)

YES- the things that she can't do make me terribly sad, (for her) because I know that her life would be much easier if she could do all of those things.

BUT...

I am thinking that honestly, would you rather have a child who couldn't do those vital things that they should be able to do but could express love?

or a child who could do all the things that they are supposed to but couldn't express love?

I know it's kind of late for such deep thoughts but I do have to say...

weeks and weeks of prayers and novenas were answered to me today,

When Ella showed me how much she loved me.

Thank you Ella...

(Thank you God...)

: )

And sweet, sweet, beautiful Ella...Mama loves you soooooooo much too...