Lucky Me

If you would please indulge me for a moment, I'd like to brag on my sweet husband.

Ryan and I facilitate a special needs support group at church and we met last Wednesday night.  The topic of this meeting was marriage so Ryan and I had to do a little "prep work" to get ready.

Namely, talk about our marriage.  Now this can be a dangerous subject depending on what we are addressing about our marriage.

For example, if we are discussing my extreme need to be the "Ultimate Victor" in any argument, er... I mean, discussion we may be having, this will more than likely not be a pleasant conversation.

But if we're discussing, say, how glad Ryan is that he gets to go to work everyday because he knows he could never do my job and would run out of the house screaming at the top of his lungs and and how he knows he could never replace me.... well, that discussion would go very well.

I think you understand what I'm saying.

Anyway, marriage is tough enough in the best of situations.  But add a special needs child to the mix and tough doesn't even begin to describe it.

But instead of "checking out", Ryan jumped right into the mix with me.  

We read books, did online research, visited with countless doctors and therapists, changed Lily's diet, spent thousands of dollars on special needs products, collected poop and urine samples for wacky tests, and mixed nutritional supplement "cocktails" on a daily basis.

A nurse even called us "Barnes & Noble" instead of Ryan and Lana! 

Granted, Ryan typically reads the portions of books I've highlighted for him and I'm pretty much responsible for dietary interventions, but he has been involved from Day One.  

He takes Lily to therapy almost as often as I do.  

He is more than willing to get down on the floor and play with Lily or take her out to the trampoline.  

He takes her for walks up and down our street and sits on the front porch rocking chairs with her.  

He goes to parent training meetings with me and actually participates.  

He wrote Lily's first Task Analysis sheet himself and got her to pick up toys in her room when prompted.  Amazing!

For a man who hates to grocery shop, he has taken many trips to downtown Austin Whole Foods Market for special dietary items - a store that can give even the most dedicated "foodie" a migraine.

In short, my husband is my partner.  And as we continue to navigate our way through the world of special needs, I know beyond a shadow of a doubt, that I can count on him to be right there with me through it all, no matter what.

I am one lucky lady.

  

A Not So Small Victory

It was a good day.

When you have a child with autism, statements like that can be few and far between.

You learn to measure success in very different ways.  At day's end, you learn to think back over how it went and pick out the big and little things that happened.  You learn not to take anything for granted.  And, you learn to celebrate things like you never did before.

When I picked Lily up from her school today, the therapists were very excited to share something with me.

Every day after lunch is finished, the kiddos are supposed to wipe their mouths with a napkin and then throw it in the trash can.

This is a multi-step direction, something that can be very difficult for children on the spectrum, especially considering you have to walk to the trash can - it's not right in front of you.  It's also hard for Lily because she has a significant receptive speech delay, meaning she doesn't understand everything she is being told.

Lily always needs to be reminded and more often than not, has to have help wiping her mouth, walking to the trash can, and dropping it in.

Well, today was different.

One of her therapists said, "Lily, throw the napkin in the trash."

And I want you to know, my baby stood up from her chair, wiped her mouth with the napkin, walked it over to the trash can, and threw it in!!!

Like she'd been doing it all her life.

Whoop Whoop!  Woohooo!  YAY!  Go Lily.... Go Lily!

This was no small victory and it was celebrated!

Now, does that mean we can assume she has mastered that skill and will do it every day after lunch from now on?

No.

She may not do it again for weeks.  That's another hallmark of autism - carry over of skills is fleeting.  It's also a hallmark of teenagers, but that's another story!

But we don't think about that.  It's one day at a time around here, and today, we celebrate!

"Give your entire attention to what God is doing right now, and don't get worked up about what may or may not happen tomorrow.  God will help you deal with whatever hard things come up when the time comes."  (Matthew 6:34, The Message)

Correction

I'd like to begin by pointing out a couple things from yesterday's post.  It was kindly brought to my attention that I cannot count to 6 - see comments for further explanation.

Now, I find this quite ironic for a couple of reasons.

One, I was bragging about how I like to be the teacher.  In fact, I was a teacher waaaaaaay back before I had my daughters.  After reading the previous post, it seems scary now that people trusted me with the education of future generations.

I would now like to issue an apology to those students.

To the best of my recollection, I don't believe I taught any of you to count... 1, 2, 3, 4, 5, 5, 6.... but I am over 40 now and my memory is shaky, I admit.

Two, I was also making sure my dad felt like the money he paid for my college education was well spent.  I feel certain he's having second thoughts about that now.

I would now like to issue an apology to my dad.  And no, you cannot have your money back.

I am going to resist the urge to go back and edit yesterday's post.  I would like to lead all of you to believe that I have it all together and make you daily wonder how I do it all.  But that is not true.  And as a pastor's wife, I guess I have to be honest.

So I am putting a little post-it note to myself on my computer that simply says:

"9/26"

It will just be a sweet little reminder to always be willing to laugh at myself - and believe me, there will be plenty of opportunities for that here!

And next Sunday, the post just might be titled "Seven Things I've Learned About...."  But we'll see....

Six Things I've Learned About.... Water

I believe children can be our greatest teachers.  Since Lily Bird entered my life, I have learned a few things.

And since I'm a firm believer in life-long learning, I thought I would pass this knowledge along to you.  No need to thank me - I'm just here to help!  Plus, I like being the teacher.

It's also a chance for me to show my dad his hard earned money spent on my college education was not wasted.  Thanks, Dad!

Each Sunday, I will list six things I've learned about something.  There won't be any quizzes or anything like that, but I really do think this information will take you far in life.

Maybe.  Or maybe not.

I guess it all comes down to how you choose to apply what I'm teaching.  So, the ball is in your court.  Use it wisely.

Six Things I've Learned About.... Water

1.     Water served in a sippie cup is not good.

2.     Water served in a cup with lots of ice and a straw is good.

3.     Even better, just skip the water and go straight for the ice.

4.     Restaurant water is much better than home water.

5.     Plain ice is the best snow cone flavor.

5.     Water that comes from the shower is tasty.

6.     Water hose water is good, too.  Just don't put it in a sippie cup.

No She Doesn't..... But She Does.....

Tests..... Paperwork.... Forms.... Evaluations.... Meetings.... Online research.... Therapy....  and endless, endless questions.

This is the world of special needs kids.  Well, I guess it's only a portion of the world, but it's a big ol' piece.

One thing that always drives me crazy is sitting across from some evaluator and having to answer hundreds of questions about Lily.  Most parents don't mind talking about their children and I certainly count myself as one of them.

But these aren't fun "tell me about your child and show me some cute photos" kinds of questions.  These are hard questions and most times, the answer is no... no... no... no... no.....

Here are some examples:

"Can Lily purposefully kick a ball?"
"Can Lily fill a bucket with sand or water?"
"Can Lily imitate facial expressions?"
"Can Lily engage in back and forth play?"
"Can Lily imitate your verbalizations?"

Yuck, yuck, and more yuck.

After meetings like this, I feel the need to turn the tables and give a little lecture on all the things Lily can do that never came up during the evaluation.

So, for all those times I didn't get to say what I wanted, I give you the "No She Doesn't.... But She Does.... List".

No, she doesn't roll a ball back and forth but she does dismantle a childproof lock faster than I can install it.
No, she doesn't put two words together but she does latch all the straps on her carseat, booster chair, and grocery store carts.
No, she doesn't engage in pretend play but she does know the way to our neighbor's house with the swimming pool and yellow Lab.
No, she doesn't ride a tricycle but she does know if she empties her toy tub, puts it upside down and stands on it, then she can reach the sound machine on the top of the bookshelf.
No, she doesn't scoop sand into a bucket, but she does know how to turn on the bathtub faucet even if you remove the handles.
No, she doesn't initiate play with other children but she does destroy a book series called "Indestructibles".
No, she doesn't play with toys appropriately but she does have the amazing ability to create ladders out of anything.  Give her some gum, a few toothpicks, and a paper clip and she's better than MacGyver ever was.

I could go on and on but I think you get the point.

Now I would like to take this opportunity and send a message to all those evaluators with all their questions and this is it:

HA!

There - I feel so much better now.

The Big "04"

Admiring a flower

A close-up view 

Looking like a model.  Lily is rarely this still so we have to capture those moments on camera!

Pretty in pink

Enjoying a swim

Working out on the trampoline

Enjoying some R&R with Dad

As of Tuesday, September 21, Lily Bird is now 4 years old!  Just wanted to share some fun pictures of our sweet girl with you. 

80's Flashback

Lily's latest toy of choice takes me right back to the good ol' days.... the days of sparkly blue eye shadow, legwarmers, stirrup pants, Swatch watches, Reebok hightops, add-a-bead necklaces, Thriller, and teased bangs so stiff with hairspray they could take an eye out.

You got it... I'm "like totally" talking about the 80's!

Despite the fact that many of these and more hideous fashions are making a comeback, I remember another trend that just makes me laugh out loud.

This trend would be the boom box.

Today, every gadget boasts of being the smallest and the most lighweight.  Well, in the 80's, bigger was boss.

If you didn't have a dual cassette player with enormous speakers and all kinds of buttons and dials to adjust the bass and treble, well.... you were probably one of those poor kids, riding in the back of your parents enormous Oldsmobile, listening to Conway Twitty sing "Tight Fittin' Jeans" - a completely inappropriate song for young ears.... or any ears for that matter!

But the best thing about the boom box - it was totally portable.  Of course, you couldn't just carry it with the convenient pop-up handle, like a suitcase.  No, that wouldn't be cool at all.  You had to carry it up on one shoulder, with your arm wrapped around it to keep it up there.  Then you just strutted down the street, sharing your tunes with anyone and everyone, and lookin' fine.

Or so you thought.

I just wonder how many 40 year olds now suffer significant hearing loss in one ear, as well as an arthritic shoulder.

The boom box on the shoulder trend was something I thought I'd never see again.  But this week, I saw it.

Lily's favorite toy right now is one of those fake fish aquariums with lights and music that is supposed to hook onto the side of a baby crib.  Lily prefers to just have hers loose, so she can always have it with her.

Lo and behold, she came walking out of her bedroom the other day with that aquarium up on her shoulder and an arm wrapped around it and the music just blaring.  Now, this was a little different in that fake fish are swimming around in a softly lit box and the music was classical, but still....

My heart just swelled with pride knowing my daughter is doing her part to keep the 80's alive.

The First Ellie Sponsorship Update

Hello Everyone!

I wanted to send you an update on Ellie.

First of all, last week was simply amazing.  I still am just blown away by how quickly this whole process happened.  Each and every one of you played a significant role in saving the life of a little girl - I was simply the means to connect all of you wonderful people.  The only word to describe it - MIRACLE!  Thanks to all of you who contributed through money, prayer and spreading the word.

We have now raised above and beyond our $10,000 goal.  Through online donations, World Help collected $7,665.  This morning, I sent several checks to World Help totaling $5,009.75.  That brings the grand total in our "Ellie Fund" to a whopping $12,674.75!!!  Can you believe it???

There are still some donations continuing to come in so I want to let you know what we are planning to do with that "extra" money.  I'm sure all of you are familiar with child sponsorship programs, where you can send a monthly amount which is put in a fund for one specific child that you sponsor.  Medical bills, education, food, clothing, and those types of things come out of that fund.  

Well, all of you are now official "Ellie Sponsors"! 

And you don't even need to send a monthly amount - unless of course, you want to!  

$10,000 will be used for Ellie's immediate heart surgery.  The extra money in her fund will be used for medications, follow-up visits, and things of that nature as well as be available if there are any unforeseen complications during surgery.  Any money left over from her medical bills will be used for clothing, food and other needs she has. 

I will send updates as I receive them so you can keep up with how our sweet Ellie is doing.  

The first "Official Ellie Sponsorship Update" I'd like to share with you right now is that I'm going to Guatemala to be with Ellie during her surgery!  I cannot even begin to tell you what an answer to prayer this is.  One of my precious friends forwarded my email to her sweet parents, whom I had never met.  The next thing I know, I'm on the phone and this wonderful couple is not only donating to Ellie's medical fund but is paying for a round trip ticket for me to go to Guatemala!  God is so good to communicate in His way my heart's cry to this family. 

I will let you know when the actual date of surgery is and when I will be leaving so that all of you can be praying.  I'll send word on how the surgery went as soon as I'm able to, as well as send you more pictures of our girl.

Please forward this email along so that everyone gets the great news and we can all share in the glory of the Lord!

Thank you again!

Lana Rush

A List

Just wanted to share some great news.... in list form....


1.          It has been an awesome week, to say the least.  I have seen God's people move mountains to save the life of a little girl.  We have raised the entire $10,000 needed for her heart surgery in just 4 days.  INCREDIBLE!


2.          I have a very sweet friend who has an amazing father.  He called me yesterday and is paying for a round-trip airline ticket for me to go be with Ellie in Guatemala while she has her heart surgery.  I have been praying for a way to go be with her and this wonderful man is the answer to my prayers!


3.          I am now anxiously awaiting news of when the surgery will take place so that I can make plans for my trip.   It's going to be an amazing adventure!  Especially for this "gringa" who doesn't know enough Spanish to save her life!  But love communicates in any language and I've got plenty of that to go around.


4.          I know a fabulous, awesome, sweet, amazing, incredible Christian couple who would love to adopt Ellie.  So we are praying for God to just open door after door after door to make this possible.  I am so excited!


5.          My same sweet friend with the amazing father.... she just passed her boards yesterday and is an official nurse practitioner.  Congratulations to her!


6.          That same amazing father has offered to pay for my sweet friend (his daughter) to go along with me to Guatemala.  Her nursing experience will be a huge blessing - not to mention just getting to spend some time with my friend and sharing the wonder of Ellie together.


7.          My super husband just finished a 2 day radio campaign to raise money for a water well in Pueblo Modelo, our adopted village in Guatemala.  He raised $13,0000 - woohoo!


8.          He will continue the water well effort this Sunday morning at Bannockburn, as well as numerous other churches throughout the city of Austin.  And I just have this feeling we're going to have that $65,000 by Monday morning!  A city-wide offering.... how cool is that?


9.          And last but not least... Praise God from whom all blessings flow!  I am standing directly under the showers of His blessings and I am getting drenched!  How about you?

Update on Ellie

Dear Friends -

I have some amazing news to share!

First of all, I want to thank each and everyone of you for participating in this special endeavor.  I am simply amazed at the incredible response from all of you!  And how quickly each of you spread the word.  I have heard from people all over the US and seen my email linked on Facebook, Twitter, blogs, and all kinds of networking sites.  There have been days that I have cursed the Internet and what a time-waster it can be but right now, I love it!  It's just been astounding to watch word spread.

I hope you're sitting down because you're not going to believe what I'm about to tell you!

In just two short but incredibly exciting days, we have raised $7000 for Ellie!  Woo-Hoo & Praise the Lord!!!

Ryan and I are planning to have the money wired to Guatemala today.  We are trusting that the Lord will continue to move in the hearts of people and the remainder will come in as the day goes on.   I am still hearing from many people and just know that God has brought us this far, and He will not let us down now!

Again, I am so grateful to all of you.  Words simply cannot express how humbled I am once again to see God's people at work.  We don't all go to the same church, we're not all the same denomination, we have different ways of worshipping Jesus on Sunday morning but one thing we all agree on - God is still in the miracle business and His people can come together to make a difference.

In choosing to save the life of one little girl, you have blessed me beyond measure.  I am thankful for each and every one of you and pray God's richest blessings for you and your families.

Habakkuk 1:5  "Look among the nations and see; wonder and be astounded.  For I am doing a work in your days that you would not believe if told."

Believing God for Even More,
Lana Rush

By the way - I will continue to send emails to let you know when we have reached the grand total of $10,000 and will then continue to keep you updated on Ellie's date of surgery and her progress afterwards.

Ellie

Dear Friends -

I would like to introduce you to someone very special to me.  Her name is Elvira (pronounced "L - veer - ah") and here is a picture of us together.

The Rush Family calls her Ellie.

I met Ellie when I went to Guatemala on a mission trip this past August with my oldest daughter Ryley. We stayed at Hope of Life, a mission that does many, many charitable things for the people of Zacapa, Guatemala.

On the campus of Hope of Life, there is a Baby Rescue Center.  This is a safe haven where babies who have been abandoned are brought to be nourished back to health. Sometimes, the babies are brought to the Rescue Center by a mother who can no longer care for her child but more commonly, these babies have been left to die.

I spent much of my time in the Baby Rescue Center - snuggling, holding, tickling, and feeding these precious little ones.

On my second day in the Center, I found her.

A skinny little baby with huge eyes had just arrived, rescued from a dumpster the night before.  I took one look at her sitting in a crib and scooped her up in my arms.  She literally wrapped herself around my neck, her tiny feet by one of my ears and her sweet face by my other.  I whispered in her ear and called her my little "monkey baby" because even though I was cradling her in my arms, I could've let go and she would've held on to me.  She couldn't have weighed much more than the bulky scarf my daughter Reagan knitted me last Christmas.

While it was hot and many of the babies (and myself) were sweaty, my Ellie was drenched and she had a very slight, almost greenish-yellow tint to her skin.  Milk was brought to me and I began to feed Ellie.  Watching her struggle to drink her bottle, seeing beads of sweat form on her face, and feeling her skin get clammy, I was struck by the familiar scene.

Almost 4 years ago, I watched my own daughter struggle to feed in this exact same way.

And sitting in that Baby Rescue Center in Zacapa, Guatemala, holding sweet baby Ellie, my heart shattered.  Because I knew.

You see, my daughter Lily was born with a ventricular septal defect, or VSD.  She had a hole in her little strawberry sized heart, a hole about the size of a dime.  She would need surgery to repair it and time was of the essence.

One of the difficulties that babies with heart conditions have is gaining weight.  Drinking a bottle of milk is like sprinting a mile.  The calories in the milk ingested to help a baby grow and develop are burned off in the simple act of feeding.  These babies burn calories just by breathing.    The natural body processes that keep them alive are like a never ending workout.  Simply stated, being alive is physical exertion.

This is why babies with heart conditions are often sweaty.  And sweat even more when they are feeding.

The Rush family temporarily moved to Houston, TX so that our precious baby Lily could undergo open heart surgery at 4 months of age.  While Lily still has some issues, today her heart is perfect!  She will never need another heart surgery and only sees her cardiologist every two years.  For that, we give much thanks and praise to the Lord.

But what about Ellie?  Since she is a new arrival to the Rescue Center, she is still being checked out by the doctor.  I start asking lots of questions and discover that Ellie is around 2 years old and yes, she does need heart surgery.

From that moment on, I was a woman on a mission!

I spent as much time as I could with Ellie and anytime I wasn't with her, I was trying to solve the how, when, and where of her heart surgery.

I started asking about adoption, temporary medical visas; anything and everything I could possibly think of.  But those things take too long and Ellie doesn't have the luxury of unlimited time.  I called Ryan in a panic and he suggested getting Ellie's surgery done at the best hospital close to the Rescue Center.  I talked with Carlos, the owner of Hope of Life and we decided that the surgery would be done in Guatemala City.  Ellie would need a more thorough evaluation by a cardiologist to determine the extent of her surgery, how quickly it would need to be done, and how much the cost would be.

My trip was coming to a close and Ryley and I had to return home to Austin.  Leaving Ellie was very hard for me.  Carlos promised to let me know as soon as he had all the information.

Last week, I finally got that information.  Ellie's total cost for surgery will be $10,000 and needs to be done as soon as possible.  While that amount is miniscule compared to the cost of Lily's surgery, it is still an amount I cannot simply write a check for and solve the problem.

This is where you come in.

WorldHelp, a wonderful missions organization, is helping me coordinate this effort so that anyone who wants to can receive a tax deduction.  Also, they are able to get the funds to Hope of Life very quickly.  So you can give online at WorldHelp.net specifically for Ellie.  Here is the  link to make it easy for you. 

If you prefer, you can send a check to me and I'll get it to them immediately.  My address is below.  

Time is of the essence, as you can imagine.  There's a part of me that believes God put me in Ellie's life - with all that we've had to go through with Lily - for such a time as this.  The Rush family is scrambling right now to find ways to give as much as we possibly can, and we are praying that some friends will consider doing the same.  Please feel free to forward this email along to whoever you think might like to contribute.  

Those who know me well are aware that I've never sent out anything like this before.  I just feel such a special connection to Ellie and our family is praying that we can make a difference in the life of this little girl.  If nothing else, I'm attaching another picture at the bottom of this message.  If you could print it out and keep it with you so that it reminds you to pray for her, we'd be very grateful.  And again, please spread the word to everyone you know!  Every little bit helps.  

Thank you so much for being a part of this miracle!

Lana Rush

A Full Moon

This morning, I woke up to a full moon.

Now you say, "How did you wake up to a full moon, Lana?  Hello!  You only see full moons at night.  I'm seriously starting to doubt your sanity!"

To which I reply, "There was a full moon this morning, I tell you!  And let's please leave the state of my mental health out of this discussion."

Let's start at the beginning...

Scene One:

Once upon a time, very, very late, in the dark middle of the night,  I heard a little voice.  And since my sanity has already been questioned, no - this was not a little voice inside my head!  This was the sweet, precious voice of my baby girl, babbling away in her bed.  Not crying or unhappy, mind you.  Just a pleasant little conversation between her and herself.

Not wanting to intrude on her private moment, I rolled over and promptly fell back asleep.

Now you say, "That Lana is such a good mom - so considerate!"

To which I reply, "Oh, please stop.  You're making me blush!"

Scene Two:


After hitting the snooze button several times, I finally haul myself out of my cozy bed to begin fixing breakfast and lunches for all three daughters.

Now you say, "What???  Aren't your big girls 16 and 14 years old?  What are you doing still fixing their lunches???"

To which I reply, "I am a sucker."

I hear Lily and realize that she is awake.  I enter her bedroom to help her get out of bed and what do I see?

You guessed it - a full moon!

My lovely daughter has removed not just her pajama bottoms, but her diaper as well.  She is sitting in her bed, happy as a clam, naked as the day she was born.  Well, almost - she was still wearing her pajama top.  But still....

My mind flashes back to that sweet little babbling I heard in the dark middle of the night.  It strikes me that maybe I didn't quite catch the conversation like I thought I had.  Now I'm imagining it went a little something like this:

Lily (as Her) - "My diaper is soaking wet!"

Lily (as Herself) - "I know!  My bum is totally damp and uncomfortable."

Lily (as Her) - "How is a kid supposed to sleep with a wet behind???"

Lily (as Herself) - "Maybe Mom will come change this disgusting diaper."

Lily (as Her) - "Good idea.  Let's talk a little louder and surely she'll come to the rescue."

Tick, Tock.... Tick, Tock.... Tick, Tock.... (minutes passing here)

Lily (as Herself) - "I don't think she's coming."

Lily (as Her) - "I think we're going to have to take matters into our own hands."

Lily (as Herself) - "You're right.  Off with the pants, off with the diaper."

Lily (as Her) - "A little breezy, but much better."

Lily (as Herself) - "Mom is a lazy bum."

While I prefer my version in which I play the role of "Considerate Mom", I'm afraid last night I played the part of "Lazy Bum".  So, instead of flowers and applause, my reward is washing sheets.

I just hope there's no encore performance.