For Heaven's Sake Live Life BIG!!

The value of a friend... prayers please

2012-02-13T22:33:00.003-06:00

I am taking a break in our vacation recaps,

instead taking time to acknowledge the value of a friend.

And to ask for prayers.

Rosie joined our family almost 5 years ago. Oh how she loved to play!

and you probably know someone else in our family who loves to play :)

She joined our nest about the same time that "others" (namely Hannah and Nolan) were leaving the nest and spreading their wings....... and while that was an exciting time for them. It was a time of adjustment for this mama...... and also for Nevin.

Rosie helped Nevin adjust.

(sorry the video is sideways... couldn't figure out how to rotate it)

While Rosie is my "baby" (huh, think she helped me adjust, too?

.....hmm, hadn't thought of that before!)

.... she has been a companion for Nevin.

Buddies

homeschooled together

played together

Shoveled snow together.

Hannah moved back home for a couple of years while she went back to school.

Sooo, she's Hannah's baby, too.

In fact, Hannah has been helping me SO much while Rosie has been sick.

Taking care of her while we were on vacation.

Supporting me both emotionally
and helping me take care of Rosie.

but now..... Rosie is sick....... very sick. *tears here*

We don't know exactly what's wrong,

we have had multiple vet visits in the last 4 weeks.

She seems to have an infection that we can't find

....and that antibiotics won't take care of.

Tonight, Rosie is in the hospital

Our house feels so very empty!

Please pray for us all!!

We are all hurting in our own ways.

We have tough decisions to make about "how far we go"

and not everyone in our house agrees on the answer to that question.

I don't believe we go beyond our limits, beyond quality of life for Rosie,

.......... but I am willing to go far for her........ for her unconditional love.....

for her companionship........ for her.

I would like to be able to know what is actually going on

and then be able to make an informed decision about the future.

......... my heart hurts.......

please pray for Rosie's comfort and healing,

for vet's wisdom,

for clear answers,

for our hurting hearts.

Thank you

Vacation: Tuesday- Golf

2012-02-11T19:57:00.003-06:00

After a couple BIG days..... we took it easy on Tuesday, slept in, low key day

... walked the beach and then

went Miniature golfing with Uncle Craig, Aunt Renee and Aunt Son.

oh, yeah........ forgot....... Nev doesn't really do anything "low key" :)

The miniature golf place was a Pirate Ship Theme!!

Alligators at the miniature golf.

Then out to eat at a waterfront cafe.

And since Nevin is a full fleged Pirate now,

he felt free to stand up in the restaurant and wave to his fellow pirates! :)

Vacation Monday- Universal

2012-02-09T23:14:00.001-06:00

The "BIG EVENT"!! Universal: Islands of Adventure

Nevin was SO SO excited to meet the villians

and the heroes!!

And he was anxious to see Jurassic Park,

sadly the Jurassic Park River Ride was down for repairs,

but Nevin always makes fun wherever he goes!

"come'on, Mom., follow me

..... I NOT scared!"

oh, what parents do for their beloved children!!

Kevin and I donned our motion sickness patches

and bravely tackled "most" of the rides.

post-adrenalin explanation!!

and nope, you're not talking me into going on the Fear Fall

one of Nevin's other goals was to take us on a ride,

so that MOM and DAD would get wet!

Mission accomplished!

LOVE this picture.... and yes, I was hiding.... trying to stay dry!

and......... the MAIN event!!

Harry Potter's castle.

We got to Universal early and then "rushed"

(it felt like the running of the bulls)

to the castle as soon as the gates opened.

Only had to wait about 10 minutes.

Wish I would have gotten some better pictures

.... was having some trouble with my camera settings

after the "run" to the castle then the wild broomstick ride.

Nevin got a wand at the wand shop.....

and I was able to "talk him down" from the $100 Harry Potter robe

..... but it is now on my "to do" list to make one.

Nevin has a picture on his phone of him with his wand..... haven't uploaded it yet. You'll have to check it out on his photoblog later.

(ummm... maybe tomorrow night)

It was a wonderful, exhausting, wet day.

Nevin loved it!!

The Pirate Ship

2012-02-08T21:18:00.003-06:00

Ahhh....... the ocean...... the beach!!

Love the look on Nevin's face in this picture.

His first time time seeing the ocean.

Yup, the bunny ears are in Florida, too!

"Tenderfoot", heading back to our condo.

Not the usual smile, huh?

I think it was shock.

He couldn't believe it.

The shock is wearing off, he's back to himself!

There are definitely advantages to being both

"forever young at heart"and an adult.

When you're "young at heart"

you can get your face painted

..... you get to wear pirate hats

and raid the treasure chest for a gold necklace.

you get to "get down" with the pirate trainers

and dance with other pirates in training.

But being an adult means you get to have a beer with your dad while cruising on the pirate ship.

Yo Ho Ho and a can of beer?

..... and you can stand on the upper deck with you beer

and wave at passing ships!

and best of all, if you older than 18 years old

you get to go up on the Captain's deck

and meet the CAPTAIN!!

And if the Captain considers you a worthy pirate,

he lets you STEER THE SHIP!!

Yup..... it's Pirate Bunny Ears

and a big day tomorrow........

Vacation......

2012-02-07T21:59:00.005-06:00

Vacation..... finally, we did it!! we took Nevin and flew to Florida.

Can you say EXCITED!!

It all started at Christmas time, when Nevin got his carry-on bag.

of course, in his favorite color..... red.

Inside the bag was a book.

A book about a very big surprise.

Vacation to Florida!!!

some sample pages from the book

This was a first for us. Not a first vacation, but it was a first BIG vacation with just Nevin..... to a state other than Colorado (Kevin's family) or Wisconsin (Uncle Jeff and Aunt Kerry, of course!). Nevin's second plane trip. And it was mine and Nevin's first time to Florida.

Nevin's excitement is so very contagious!! The people around us enjoyed his "thrill".

Another surprise after we "booked" our vacation......

Uncle Craig, Aunt Renee and Aunt Sondra happened to also be going

to the SAME area, the SAME flights, and staying about 5 miles up the coast from us.

So we got to share some fun times with them in Florida, too.

yup!! we're here!! .... Palm trees!!

tomorrow... a Pirate Ship!!

be sure and check out Nevin's Photoblog for more pictures!

"She makes us better"

2012-01-03T19:48:00.002-06:00

He makes us better!!

who needs a trash compactor?

2011-12-27T23:02:00.000-06:00

I love that Nevin is always willing to help out! he doesn't complain and always seems to find a way to make it fun. ... and just to explain, he brings in the big blue recycle box, empties the purple "recycler" from in the pantry and then stands in it to BE the compactor. :)

Thanks, Reagan!!

2011-12-21T23:30:00.000-06:00

Nevin got his first Christmas gift today from his friend, Reagan.

A Nerf Gun.

Really cool !!

lot's of bullets

his idea!!

yup, still his idea!

"who, me?"

"it's ok, Rosie, I put it away!"

Nevin photoblog post

2011-12-14T08:14:00.002-06:00

Nevin posted about the HADSA Christmas party. Lot's of fun and a special girl.

You can link to his photoblog about the party

here and here

here is a couple of my favorite picts

Open the eyes!!

2011-12-06T09:46:00.001-06:00

oh, my Lord, thank you for blessing my heart today!

Oh, what fun.....

2011-12-01T06:58:00.001-06:00

Nevin and his friend, Chris went to a Hawkeye Game last night Tuesday night. Oh. My. Goodness. can you say EXCITED!! When Nevin got home, he was still in his "post-adrenalin" high (even though it was late... about 11:00 pm and they had a 45 minute drive home). He was still bubbling, talking, doing his modified cartwheels while he talked, .... whew.......

Nevin has been blessed beyond measure by his friend, Chris!! Chris and Nevin started working together about 6? years ago. Nevin has learned SO much from his friend! Chris has been a wonderful teacher, mentor, friend.

Nevin posted all of his pictures and his "stories" from the evening on HIS photoblog.

I am Thankful for......

2011-11-23T12:25:00.001-06:00

I am so very thankful for the children that God blessed me with.

They bless me beyond measure.

Their love for each other makes my heart full.

How each so very different from the other,

was designed specifically by God to fill my heart perfectly.

Different, yet one..... one family..... one love.

oh, my heart!! is so very, very blessed!

our BIG.... BUSY life!

2011-11-14T00:27:00.001-06:00

Oh, my...... our BIG life has almost been too big to handle lately!! but not in a fun way. My work has changed a bit as my assignment has increased to cover some "vacant" positions. This has been quite a scheduling nightmare as I've tried to keep up with both home and work.

It seems our "BIGness" has had both upsides and downsides lately.

Upside: Nevin got his new iPad,
Downside: I am scrambling to learn faster than him so that I can keep him safe on it. He LOVES to search youtube for "clips" from all his favorite movies, however the youtube environment...... ESPECIALLY on an iPad is not a safe environment. And the YouTube App doesn't allow for any "safesearch" like the website does. So I've been experimenting with adding "shortcut to webpage" to give him access to youtube with safesearch on..... FAIL!! YouTube iPad browser is still "accessible". Sooo...... removed shortcut. Much to "someone's" dismay :( Now we also can't use some of our educational videos from the WatchKnow App. sooo.... still a FAIL.

Upside: I got a new iPad for work (even more upside..... they bought it for me!)
Downside: Wow, what a learning curve!! as someone who hasn't had a smartphone, I am STRUGGLING with my calendars. Synching work email, work calendars, home calendar, home email, etc. etc. I am not able to keep my paper calendar and my "digital calendar" both up to date. FORCING myself to "let go" of my paper calendar, but my visual learner brain..... is really struggling with not being able to flip open my "calendar" and "SEE" it.

Upside: Nevin has two special people who are starting to do respite with him. Upside: this has the potential to assist me in my current scheduling nightmares Upside: Nevin gets to spend more time with two people who are very important to him..... his brother, Nolan (because he is currently laid off work) and his friend, Reagan.
Downside: Since we are doing CCO (Consumer Choice Option) to manage Nevin's services...This has meant extra time on my part in getting them "hired","set-up", "scheduled", etc.

Upside: I am meeting new precious children and their families.... as my work time expands..
Downside: As I negotiate this transition, I feel like I'm not meeting everyone's needs.

Upside: I'm getting the chance to work with older kids..... and that has meant even some of the ones that I worked with when they were babies..... What fun!

Downside: I have been working in Early Intervention with little ones/families and I haven't worked in the schools for many years..... it is a very different setting, requires a different mindset, has a different paperwork process (IEP's) that has been changed multiple since I last wrote one...... and mostly doesn't allow for lots of the parent connection that I crave and need to feel like I'm serving children the best I can.

Upside: We bought a travel trailer and are planning a trip south for a couple weeks this winter.!! Yippee.
Downside: This has meant a learning curve for us, mostly my hubbie, as we learn to winterize, get our almost 20 year old Suburban ready to pull a 15 year old trailer. While he's been awesome about assuming responsibility of his new role...... he also would like to spend lot's of time talking about it...... and my time and energy has not allowed me to be a very good listener/active participant in this endeavor. :(
Downside: We just figured out that SeaWorld in San Antonio is closed in January and February. It was our planned "Main Attraction" :( So now hubbie would like to spend lot's of time researching/discussing/planning where else we can go. ....... and again I say "my time and energy has not allowed me to be a very good listener/active participant in this endeavor". :(

Upside in general: God is showing me A.G.A.I.N., that only in my broken-ness and surrender can he use me for his glory. Upside: sermon at church today..... reminded me of that :)
Downside in general: don't feel like I'm keeping all the balls in the air. And the stress has taken a toll on my immune system.
Upside: God has gifted us with caring doctors who prescribe antibiotics for ear infection, prednisone for inflammation....... and today, finally after 9 days of my ear hurting and ringing, headaches, neck soreness and swollen lymph nodes..... I am feeling better! physically, emotionally and spiritually.
At least until tomorrow..... (actually, 1:30 in the morning now..... so later today....) when I forget all the upsides...... and can only think of the downsides!

Nevin and I spent some time on the computer together yesterday....... and he was so proud of our "artwork", guiding me through pictures to find one of him with short hair like Curly, goofy look like Curly, making sure I "noted" that they are twins ....... thought I'd share! Think I'll print it and take it with me today!!

Uncle Jeff

2011-10-23T23:52:00.001-05:00

Some things are just so very special that there aren't words.

That would be what this relationship is. I kept putting off posting, because I couldn't find words to describe..... sooo, instead....... Nevin posted. :)

Who needs words? Pictures are worth 1000.

Nevin has a new post on his photoblog.

Uncle Jeff (part 1) and More Uncle Jeff (part 2)

2011-10-21T21:14:00.000-05:00

October is Down Syndrome Awareness month!

We want to support all those that rock that extra chromosome with a blog hop on the 21st!
p.s. adding that.... I don't exactly know what I'm doing, but hope to make some new bloggin' friends! join me on my first blog hop! :)

New iPad & Double Trouble!! :)

2011-10-12T01:48:00.001-05:00

So Nevin finally got his new iPad. Actually, he and I are sharing. But today was the first day, so it was his today. I didn't put many apps on it yet, but he still was very excited to check it out. This evening I sat down with it to do my own playing...... and when I opened it up. This is what I saw!!

I'm not sure how he did it, but even by himself with a new iPad....

he is Livin' Life BIG!!

Cuteness continued!

2011-10-11T00:00:00.000-05:00

Buddy WALK!!

2011-10-10T00:10:00.000-05:00

We had absolutely beautiful weather!! and had a great time. Nevin was a "star".... and announced to the whole crowd that now that he is 21 he can drink beer! (thank you Erin, for that little "prompt" :) I tried to post the video, but it must be too big to post on blogger..... cause it keeps giving me error messages. So you're gonna have to settle for just pictures ;)

Boys!! we're supposed to be setting up!!

Ta Daa!! our table

and our special guests!!

The DeLlanos family.

Timothy has been HOME for almost a year now.

I love this picture.... Nevin got to draw the name of who won the iPad2 raffle.

I love both these boys!!

Nevin is 21 and Daniel is 1. :)

and my very special friend, Isabel came to share our day, too.

What a wonderful day to celebrate with people who "get it"!!

People who understand the blessing of that extra chromosome. :)

Nevin's Card !!

2011-10-06T22:02:00.000-05:00

We ordered some business cards to give out at the Buddy walk primarily so that they could order bumper stickers or other "future" Live Life BIG items "hint hint" :) and maybe some give-aways.

Oh, my.....you should have seen Nevin's face when we picked them up.

He definitely felt important!!

I'm thinking you better come to the buddy walk so he can give you one of his cards!!

The Blog.....

2011-10-05T23:30:00.002-05:00

oh, my goodness....... all I needed to do was figure out how to add tabs! My friend, Amy, gave me a short tutorial..... so I felt ready to tackle it. And before I knew it...... I had completely lost my old template and was deep in a "re-design" whether I wanted to do it or not!!
Whew, then finally...... I have tabs...... clicked on Nevin's photoblog tab..... and realized that this week they have done a huge change in formatting there! yikes.... at first I thought I had somehow messed it up, too.
So for now, I have tabs. and a new color and a new picture..... but the picture is bigger than I wanted it to be..... but I can't figure that out either. I need a blogger for dummies book.

Next a new chip-in!

**ok, update...... got the picture smaller, not can't figure out how to center it! I give up!! goin' to bed.

2011-10-04T09:12:00.000-05:00

Come join us for the Buddy Walk!!

Check out Nevin's Buddy Walk Page.

Nevin has been invited to speak as a self-advocate and also to talk a little about Reece's Rainbow. Yikes!! don't they know it makes me terribly nervous when people give Nevin license to speak to a large group :) You never know what he is going to say. AND...... this is a large group of people (expecting 700 people!!) who will probably understand what he says!! :D

and....... guess where we went this last weekend!!

the Omaha Zoo and the Strategic Air and Space Museum! what fun!

here is few teaser pictures........... more to come!

Bumper Stickers!!

2011-10-01T00:39:00.000-05:00

We have a new bumper sticker!! we will be selling both of them to benefit Reece's Rainbow at our Buddy Walk on Saturday, October 8th!! I will also be adding a chip-in so that you can get bumper stickers via a direct online donation.
however......... I'm currently in process of trying to figure out how to add tabs, do a new chip-in, etc. for the bumper stickers. Soooo........ coming soon!! or maybe we'll see you at the buddy walk!!

James Bond

2011-09-30T15:35:00.001-05:00

Here is Nevin after his garage sale leftover find.

He is thrilled to have a James Bond briefcase

WITH it's very own secret code!!
(thanks Russ!)

Too bad he didn't have his "James Bond briefcase"

on the day that he looked like James Bond!

(at his friend, Chris's wedding)

but I guarantee you that next time he rents a tux....

he will have the perfect accessory.

A family grieves, Heavens rejoice......

2011-09-26T14:30:00.004-05:00

A sweet family from our church suddenly and unexpectedly lost their sweet 3 yr old girl. While the heavens rejoice at Vivian's arrival, her precious family grieves their loss, while knowing she is fully healed and able to be a happy, skipping toddler in heaven.

Please join me in prayer for Vivian's family.

FUN on your way to work?

2011-09-26T11:25:00.003-05:00

Seriously, how many of you GET to have this much fun transporting your son to work?

Me, I prefer quiet. I like music, but not loud rock'n roll music.

Nevin, however, seems to need it to "wake up his brain".

So this is our routine trip to his work in the morning.

Clutters my brain, but gets his going!

(and yes, I was driving... but I wasn't looking at my camera,

just taking a chance it would turn out)

sometimes, we trade off parts.....

air guitar, air drums and air piano

"bye Nev, work hard, make me proud!!"

(he always does.... but likes to know how proud I am)

"bye mom!! "

oh, my,......thank you God for this blessing!!

Quarry Quest: Part 2

2011-09-24T20:56:00.001-05:00

Yaba Daba Doo!!

Some of us need to practice our salute a little bit! :)

Salute!!

Nevin has a very deep respect for military,

and always wants his picture with soldiers.

Yes, sir!!

"I'm in the Army now!!"

..... and next..... the BIG crane!!

He loves that this picture looks like he's operating the crane himself!

The voluteers were all wonderful. She is congratulating him

for his expert crane operation.

Then..... Nevin climbed the sand mountain......

He stood at the top for a long time,

I was worried that he couldn't figure out how to get down.

(he really does struggle with depth perception and going down stairs...

so it was a legitimate concern.)

.......then........

I figured out he was just waiting for kids to clear out and make way.

He came rolling down, arms and legs flyin'.

this was the first "dumping" of sand .....

but we kept finding it in pockets for days.

lastly..... Nevin's very favorite!!

The Lift (or cherry picker, depending on who is talking)

.....can you tell that Nevin is anxious to do the lift? :)

He was REALLY proud of the fact that he talked ME into doing the lift.

He knows I hate heights......

This was the best I could do with one hand white knuckled on the rail

and one hand to run the camera!!

It was a wonderful day!! We are definitely going back next September!

Commercial break.....

2011-09-21T17:23:00.001-05:00

I know I promised more pictures from Quarry Quest...... I promise..... I will post them later this evening. But want to do a quick post to support Perfect Lily and her mom, Patti as they work hard to help raise money for the Quinn family. They are working hard to bring home their daughter from an orphanage in Eastern Europe. Please join in supporting them with prayer and with money if the Lord so leads you. They are sponsoring an iPad2 giveaway to raise money.

Help get Autumn home!! (known as Donna on Reece's Rainbow)

Quarry Quest: Part 1

2011-09-20T22:12:00.006-05:00

My cousin, Karyn and I took "the boys" to Wisconsin to visit Uncle Jeff (my brother) AND to go to Quarry Quest!! WOW, what a day!! (click here for news article..... reportedly 15,000 people shared the day with us!!) I highly recommend it!! especially if you have any young people who have a special interest in diggers, cranes and dump trucks.

Or if you have someone who makes everything fun :)

Oh, the excitement as we arrived, got our complimentary safety vests.

We reviewed the rules and headed down into the quarry.

The first line we got in, was for the "diggers". ....... and we waited........

but Nevin helped with entertainment of the "restless" :)

then.......... finally.......... our turn!!!

(and despite the "lapful", Nevin's enthusiasm always lends itself to acceptance)

Then the post adrenalin "strut"! :)

***stay tuned for the lift, the crane, the sand mountain........

Blue Man!!!

2011-09-10T09:06:00.002-05:00

We went to see a Blue Man Group show in Cedar Falls last night.

It was as much fun to watch Nevin's excitement as it was to watch the show!
We splurged, our seats were in the 6th row!

oh, my.... it was fun to watch his reactions!

It was definitely Nevin's kind of show!!

No talking, all visual.

(I didn't take this video of the balls,
someone in the upper balcony took it and posted it on youtube.)
Wow, did Nevin ever enjoy this part! The balls were about 6 foot in diameter and Nevin got to hit them several times. I got lot's of "look out mom!!" and then giggles.

Even more excitement after the show, when he got to pose with the band.

and the band member on the right.........

blessed him with drumsticks from the show!!

WITH PAINT on them!!

Can you say EXCITED!!

(a hood of the car pic... think I need a little tripod)

The adrenalin rush kept him talking, drumming, singing

..... all the way home.

ugliness.........

2011-08-29T20:45:00.001-05:00

I had another post planned....... but then I read this post written by a hurt, angry mama bear. A search engine searching for words "ugly", "r&tarded", "baby girl", "toddler"...... Imagine their surprise when what came up was a picture of absolute PURE BEAUTY. A picture of the face of God, in his image.

While I know we live in a broken world, it still makes my heart hurt to know this ugliness exists and is directed at our children. It makes me angry,... it makes me sad, ....it makes me want to work harder to change the world and at the same time it disheartens me.

The internet has been a wonderful place to connect and become part of the "larger" down syndrome family, but it has also proven to be another vehicle to spread ugliness. This type of hate, this type of ignorance is why I do frequent searches using Nevin's name, or other combinations of descriptors such as ds adult, ds teen, r&tard, etc. .......to try and protect him as best I can. I have had several instances of his picture being used inappropriately, but at least by people willing to take it down (for e.g. his picture in an article that promoted prenatal testing to avoid ds.) I haven't been sucker punched by "hate driven" searches yet. But I've also avoided using the words down syndrome and his name together very often...... is that me just being chicken?...... am I failing at advocating? ...... I know that I may not be connecting with as many people as I could because I've been "timid". Not like I'm a powerful blogger or anything..... but it does make me think?

If you get a chance go over to this mama bear's blog and let her know what a beautiful daughter she has (even though she knows that..... a little extra lovin' can't hurt!!) tell I sent you. ummm..... tell her Nevin sent you :)

a walk........

2011-08-28T21:36:00.002-05:00

I've been quiet lately. I just haven't had words that were organized enough in my brain to write them down. There has been much happening........ much to think about ........ much to pray about.

In the meantime, the weather has been wonderful. My foot is finally better enough that we can get out for a walk. But Nevin and Rosie were more interested in a "run" :)

It was a little reminiscent of the "runner" days. :) But they stopped and waited when we called and told them to wait for us. THAT was different than the "runner" days.

When Nevin was little and would "go missing", the joke was that we would first check the perimeter to see if we could see his dust, before we wasted time checking the house and yard, etc. The above picture made me think of that.

Nevin loves Rosie. It bothers him when she gets "tangled" in the leash..... I tried to tell him that she doesn't mind...... but he continued to insist on "helping her".

Nevin was just a "little" perturbed with our slow pace.

He was glad when we got to the water so that Rosie could swim!

He really got a kick out of watching her jump in the water and paddle away.

And Nevin was proud of HIS photography skills, too.
I'm thinking we need to get him a camera. :)

It was a good day!

........ Special Connection ............

2011-07-21T23:39:00.002-05:00

Nevin loves babies. all babies.

When he was little, he moved through the house like a little tornado, oft times leaving destruction in his path....... and when a baby visited, that little "Nevin tornado" would cause that baby's mama to brace herself as he approached..... but then, .... just a few steps before arrival....... calm, no tornado, no wind and then the gentlest approach you can imagine. For those of you who are boaters, it reminds me of when we would be speeding along in the boat, moving fast up on top of the water and then we would stop and the boat's motor would go quiet, slowing glide forward and "sink" comfortably into the water. That was Nevin as he approached babies.

But Nevin also seems to have a special connection
to babies with that something special.

You can just see the connection.

with our very, very special friend..... Daniel

And with our friend, Shelby...... when she was little

and then consoling her after she fell and bumped her nose

at the children's museum, when she was older.......

and a few from when we did childcare for a very special little girl.

sorry, we don't have permission for any full-face pictures of her

...... but you can certainly tell from the pictures what Nevin thought of her.

he was even willing to be her pillow when she wasn't feeling good.

He laid there for a long time and let her sleep.

can't find the picture of Nevin with Andrew when he was a baby

but here he is when he's bigger.

It is a special connection,

that doesn't take words,

that doesn't need to be explained,

it just is.

And it is oh, so special to see.

The Parade!! VIP treatment

2011-07-19T09:33:00.003-05:00

Nevin was invited to ride on the firetruck in the parade in a nearby town. I think the firemen remembered his glee when they let him help at the Barn Burner and knew he would enjoy riding in a firetruck. YUP, got that right!!

He was SO excited!! When asked what his job was "Wave at the people and throw candy to kids". And he did a great job!

(I love the above picture)

Again, I say, Nevin makes friends wherever he goes.

Thank you, Adam, for the invitation.

Post-parade, post-adrenalin, Rock star dance. :)

You can check out more pictures on Nevin's Photoblog.

FREE for a prayer..... GIVE-AWAY

2011-07-17T12:24:00.000-05:00

I am doing a Give-away for "Live Life BIG" Bumper Stickers. Nevin will randomly draw 5 followers who leave a comment on this post to receive a Nevin inspired Bumper sticker. (bumper sticker doesn't have watermark)

All I ask is that you say a prayer for Cyril.... that his forever family will find him soon..... Nevin and I want desperately to help bring him home to that family!! Remember how Nevin picked Cyril K, from all the children at Reece's Rainbow, to advocate for because of his smile? because he seems to have a "live life BIG" attitude?

Well a new picture has been posted of Cyril and this poor baby is tired of waiting.... he has lost his smile. Maybe he's been transferred already, maybe that's why his smile is gone. He needs a miracle, he needs a family, he needs love, he needs prayers. Are you his family? Is God whispering to you that he is your son? He needs you to come get him! We will help you raise the money and do whatever we can to help you bring him home!

look at this picture...........Breaks my heart!!

So, today...... spread the word....... Cyril needs a family..... his smile is gone.....

For the Bumper Sticker Give-away.....
1. Sign up as a follower on my blog
2. Say a prayer for Cyril today.... and leave me a message on this post.

bonus chance: Extra chances at for a bumper sticker if you post to facebook or twitter (leave me a comment that you did)

bonus chance: post about this give-away on your blog and leave me a comment on this post.

(If you have trouble with leaving a comment..... just email me: lakesmit AT gmail DOT com)

**** Drawing will be Monday (July 20) at 6:00 Central daylight savings time!

*** stay tuned, as we will be having more fun FREE give-aways this week!

Letting Go, whether I want to or not!! .....The Tattoo

2011-07-12T20:44:00.003-05:00

Nevin is 21. yeah, I know..... you probably already know that. I'm just reminding myself, he's 21. If I want others to treat him with respect and give him choices he deserves........ ahemmm, I guess I need to as well.

When my other kids turned 18, they made choices that no longer needed my approval and promptly proved their independence by getting a tattoo. Nevin is 21 !! yes, I surrendered and "let" my baby have a beer on his birthday. But this was different, it was a decision that wasn't what I would choose, this was permanent. There had been some talk of a "sibling tattoo" ....... ok, okay..... maybe...... maybe, that would be ok with me. They had decided on a shamrock.... three leaves..... each sibling's initial in each leaf. Okay, ok..... he can get the shamrock. I mean, it's a sibling love thing, right?

Sooo....... fast forward to my daughter's birthday. She's 27. She was planning to use birthday money for a new tatto. So, while discussing tattoo's over her birthday dinner, the snowball got rolling and before I knew it.... even hubby was getting a tattoo the next day (he's no help!!).

Soooo........ tattoo appointment day..... Nevin was excited, until he learned that the plan was to get a shamrock. "NO SHAMROCK!!" "I want dragon". Said with enough conviction, that I knew there was no shamrock happening..... so I searched and found a celtic-like, shamrock-like, three headed dragon that could have initials put into it. When I showed Nevin the picture, he was game. I mean his choice seemed to be shamrock or three headed dragon, right?

However, once we arrived at the tattoo parlor, Nevin became acutely aware of his choices!! (much to this mama's chagrin). But at least, he wasn't choosing totally inappropriate stuff...... he got a book and went to the dragon section. And landed on a full color, very detailed, large dragon that was out of the question. I mean, we weren't sure how he'd tolerate it, plus it would be way more expensive that the original plan. Each family member/friend tried to "trick" him by expressing their approval of the three headed dragon. Wasn't gonna happen. Stalemate.

Dad had even landed on a shamrock (design name: bad-*ss shamrock)... go figure. But Nevin was determined NOT to get a shamrock or a 3 headed dragon. So he vacillated between silent pouts, pleading looks, angry-talk (which typically doesn't even apply to the situation.... because he can't process fast enough, with that much adrenaline .... so instead he just gives voice to "angry talk".... often excerpts from movies, etc.). We did hear the word "loser" come out a couple of times.

Me on the other hand....... just wanted to cry...... see!! see!! everyone, see what you caused...... now we have a mess, we have hurt feelings, we have angry talking and no apparent solution. But as I sat and looked at my 21 year old son....... I realized, his anguish was partly my fault...... I was trying hard to be in control... I don't want to let him grow up... .. didn't work for my other kids when they were 18....... why doesn't Nevin have the same right to prove his independence as they did.

Sooo..... I took a deep breath..... sat down compassionately beside Nevin and asked him to tell me what he liked about HIS dragon and what he didn't like about MY dragon. Together we made a list of what HIS dragon needed to have..... ONE head, a tail, a body, wings, horns, red eye and red wings. After consultation with the tattoo artist, he assured Nevin he would draw him a "one of a kind" dragon.

So, there you have it....... it's hard work letting go!

My baby...... my son....... is a young man......... with a dragon tattoo!

oh, and as you can see he "tolerated" getting his tattoo just fine.

Dad, however, wasn't fond of getting his first tattoo.

And of course, Hannah had no problem with hers, and I didn't have time to "fuss" about what she was getting...... :) like it would have made any difference, anyways! and it's ok, cause she's beautiful with or without a new tattoo.

And, Nevin makes friends where ever he goes!! :)

Birthday Blessings!!

2011-06-13T21:10:00.010-05:00

As Nevin maps out all the upcoming movies and their release dates on his calendar, he is starting to take more notice of other important dates....... like birthdays. It has been fun, because it means you get to have happy birthday sung to you many times before the actual day! And gives him lots of time to plan. Nevin planned a date to celebrate my birthday last week.

He took me to see KungFu Panda 2.

Then he took me to Chuck E. Cheese's.

And he ordered me his favorite sausage pizza.

And he bought me some tokens and helped me use them.

We had a great time!! I felt very special.

Since Nevin monopolized my time........ my other lovies had a hard time finding me. Hannah left me some beautiful flowers and Nolan had to come for a late night birthday hug and a wonderful candle.

Birthday gifts!! each one of them...... each child gifted to me by God...... each one fitting perfectly into their place in my life. Hannah bringing beauty and compassion that only a daughter can, Nolan bringing a calm strength that needs no words and Nevin bringing love beyond measure. I am truly blessed!

pizza anyone?

2011-06-07T22:19:00.004-05:00

Soooo, this evening we "learn a lesson" as Nevin would say. He learned that there is a significant difference between cooking your pizza in the microwave for 2 min 22 seconds and cooking it for 22 minutes and 22 seconds. The difference, you ask......... smoke!! and lot's of it.

The "lesson" I learned is: 1.) that I must re-evaluate whether I think Nevin can be home by himself...... and I need to do some praying about this...... while I need to ensure his safety, we must also figure out how to identify "acceptable risk" in pursuit of his desired independence. 2.) Time to start figuring out ways to help him increase his skills in this area.

We also learned that our smoke alarms never came on, despite a huge amount of smoke. They are hard wired and cover the bedrooms and basement....... but not the living areas! hmm, guess we'll be adding a couple smoke alarms.

Nevin's eyes were watering and his nose was running. My eyes were burning like crazy. We went to the basement to bring up fans and Nevin was rattled enough that while hurrying up the stairs with the large fan, fell and scraped up both shins and the fan went flying.

So, lessons learned and more importantly..... I see some "learning" in the near future.

It is difficult to figure out how and what to teach him to do..... especially if it is different than what we did. i.e. we didn't leave the house, we didn't call the fire department, hmmm....... how to teach, how to teach........ always a puzzle.

Garage Sale........ results/feelings.......

2011-06-06T01:03:00.013-05:00

I have struggled all day with a post about the garage sale. The basic things are easy to say..... #1. THANK YOU!! to everyone who helped #2. It was a huge success, currently stand at $850 income, with some craiglist, ebay and consignment yet to do with the "leftovers"...... hoping to be able to bring the grand total to over $1000.

What I'm struggling with is describing how I'm feeling. Yes, I'm bone tired, I ran several nights on little sleep and then the night before the opening of the garage sale...... I actually didn't quite make it to bed. I lost track of time as I was working in the garage and I knew I was in trouble when I started to hear the birds chirping, telling me that the sun was coming up.

But the part I'm having trouble putting words to, is the emotional toll, the emotional weariness. Selling things that were "special" (.... yes, I kept some special things).... watching people carry around my "memories" in their hands, having absolutely no idea the love and heartache that was "connected" to some of those things. And even more than memories, many things also had "dreams" attached to them...... dreams that I need to let go of... dreams that I spent the day "letting go of" piece by piece as I helped load the crib into the back of someone's pick-up, as I stuffed bargain priced baby clothes into grocery bags that had previously been folded neatly in drawers in the "spare" room, ........ dreams of bringing home an angel through Reece's Rainbow. It takes a unified commitment to do that, and while i would "in a heartbeat" .... God has not placed that same desire on my husband's heart. And never in a million years would I want to do it without him having the same desire. Only God could convince a logically thinking man with valid human fears/concerns to traverse the ocean and bring home a child with special needs.

And somehow, because my heart's desire would be to adopt one or two with Down syndrome..... I've somehow lost sight of how else I can make a difference for these precious orphans. I feel inadequate in my attempts........ and despite the success of this garage sale, and knowing that Cyril is WORTH what was accomplished and the amount of work that was involved. I am overwhelmed with a sense of it not being enough...... that I need to do more.......

I read blogs of many powerful advocates whom have a way of giving voice to these orphans in a way that is making a huge difference. A few of my favorites are Lily's Mom, Patti and Adeye's blog No Greater Joy Mom and Aaron's Mom, Julia Please go check out their blogs!!

And pray that I will be able to let go of MY dreams, MY plans, MY selfishness and let God guide my path. While I cling to MY path, I am not able to see how God can use me, if only I would let him lead to that path HE would have me travel. Even as I pray and try to listen to God's will....... I want SO much to bring things with me to HIS path.... I grieve the shattered dreams that I must leave as God says.... "come"...... leave those plans.......

oh, my goodness....... Lord, please.......... have mercy on me........ help me get to the end of my pitiful self!! then and only then....... can it be truly for YOUR glory.

ok....... good thing I've only got about two followers!! and they already love me ;) I'd scare anyone else away! :) and because there is only a couple of you........ I'm gonna be brave and hit "post".

Yes, Cyril.......... I have not given up ....... I will continue to pray, that your forever family finds you!! and that when they do....... we will have LOT's of money in your account to help them get you home!!!! We will keep fundraising!! just gotta figure out what to do next. :)

***oh, and also.......... SOMEBODY (nevin) was very excited to find a JAMES BOND briefcase at our garage sale!! complete with "secret code locks" to keep bad guys out of it.

iheartfaces: From a distance

2011-06-06T00:20:00.012-05:00

This week's iheartfaces challenge is focusing on a photo taken at more of a distance. Examples of this would be: a photo with the people way off in the distance in a beautiful location, a photo that features many people rather than focusing on a single face, a silhouette photo taken from afar, a photo with the subjects walking away from the camera, etc.

This photo was taken the day of the "barn burner", which of course if you've read the post you know what a very special day it was. One of my favorite pictures was this one, it shows the intensity of the heat. Obviously, I am not an experienced photographer...... but, I do enjoy using my camera to help us keep our memories "visual". One of the things that surprised us was the intense heat........ even "at a distance".

wonderful video! well done!

2011-05-29T20:14:00.000-05:00

Oh, my heart!!!

2011-05-24T09:32:00.002-05:00

Praise God!! the doors have opened....... Kirill is free and he is coming home!!

Iheartfaces PhotoChallenge: Yellow

2011-05-23T22:07:00.005-05:00

A Star!!!

and a smile that says it all!

picture posted in challenge on: www.iheartfaces.com

We had such fun the year Nevin was a "star" and had his picture up on the Times Square Megatron for Down Syndrome Awareness Month. It was an incredible trip to New York City that we will never forget. This was a picture of Nevin the day we left for NY, think he was excited?

blogger? me? or satan?

2011-05-13T12:28:00.003-05:00

whew.... I've been working hard to figure out how to start a fundraiser for Cyril K., in that process I posted about the bumper stickers we are selling to raise money for Cyril K. ..... poof..... post gone. fine!! reposted. I figured out how to post a chipin widget to allow for the donation/purchases of the bumper stickers, after a couple of trials..... got it!! ...... today...... poof.... gone! FINE!! reposted. Cyril, honey....... really, we are going to get some money in your account.

Sooooo....... let me know if you ordered during that time and had any issues. Just drop me and email: lakesmit AT gmail DOT com

Bumper Stickers for Cyril's Sake!

2011-05-13T12:24:00.002-05:00

We are selling "Live Life Big" bumper stickers to raise funds for Cyril K. at Reece's Rainbow. We are taking a $5 donation for one, $8 for two, $10 for three, $12 for four ($3 each after that). Contribute via the chip-in and be sure to include your address so that we can send your bumper stickers to you. Your bumper sticker will not have the watermark on it and it measures 4"X4" THANKS!

**also, since I'm new at this.... if you order, would you also leave a comment that you did or email me: lakesmit at gmail dot com so that i can make sure and not miss any orders. thanks

5/5/5 Warrior Project

2011-05-05T22:43:00.008-05:00

Raising $5000 for 5 year old orphans with special needs in honor of Reece's Rainbow 5th year anniversary and in honor of 500+ children with special needs who are no longer orphans........

Although I feel inadequate in this challenge, Nevin and I have committed to be 5/5/5 warriors for Cyril K.

Nevin was taken by Cyril's smile as he chose who we would be warriors for. By God's grace we will rise to the challenge and raise $5000 to help Cyril's forever family find him and bring him home.

5 years old..... while in the USA, marks the exciting transition to kindergarten ....... but for Cyril, it marks that his time is running out. He will be aging out of the orphanage and because he has Down Syndrome, he will be transferred to an institution. He won't understand what has happened, he will be more alone than he has ever been. He will soon become ineligible to be adopted. Many, many of these children die in the first 1-2 years after they are transferred.

His country believes he has no worth....... no value........ the doctors most likely counseled his parents to leave him at the hospital after he was born....... typically telling them that their life would be ruined if they took him home.

We know different. Especially those of us whom have been blessed by loving and being loved by someone with Down Syndrome.

God has burdened my heart for these children............ for little Cyril...... whom, despite not having a mother's love still had a smile for the camera.

Please pray for Cyril K., pray for his forever family, pray that they find him before he is transferred. He's ready.......... he's waiting........... he's almost 5.

iheartfaces: Pets

2011-04-25T20:28:00.006-05:00

T his photo was entered into the I Heart Faces photo challenge – http://iheartfaces.com

It WAS a Barn Burner

2011-04-18T21:15:00.069-05:00

** title comes from one of Kevin's sayings that often perplexed friends of the kids.... as he would say that a particular movie that he recently saw "wasn't a barnburner" meaning is wasn't great. We would question..... where does that saying come from? why is barnburning a good thing? to which we never knew the reason........... before now. :)

What a special day! Nevin had the opportunity to be a fireman. He was SO excited he couldn't stand himself !! We were invited to a "barn burning". In some ways it was actually kind of sad as we watched a piece of history go up in flames, but from Nevin's standpoint it was an incredibly exciting day. There was much anticipation as several local volunteer fire departments arrived.

Nevin and his dad walked around, excitedly checking out the "cool" equipment, while I admired the "history" and the beauty of the barn with my camera.

As I returned to the group, I found Nevin with the firemen, proclaiming himself the "chief" since he had been gifted the opportunity to wear the Chief's helmet. It always amazes me the intricacy of God's plan as he gifted the world with Down syndrome. It pulls grace from within each of us........ from the chief as he allowed Nevin to don his helmet. Then from that grace, we are blessed by the chance to view pure unabashed joy returned.

Next, the fire began. Within minutes the power and heat of the flames caused us to retreat to the field behind the barn.

Nevin belly laughed as the firemen decided that they would use the fire background for a group photo, but the heat caused them to flee before a "proper" group photo could be taken.

Nevin watched closely as the firefighters began their work of keeping the surrounding areas safe, hosing down the cement foundation around the barn and surrounding buildings.

And then................

again, a hand extended ..............

a gesture the giver could hardly anticipate the extent .................

to which boundless joy would be revealed................

"Standing Together"

(the above picture brings tears to my eyes)

And I dare anyone standing nearby.............. to not feel their heart smile as Nevin completed his duties and began whooping and squealing with all the pent-up energy.

Thank you Lord, for blessing our family with an extra chromosome. Thank you for giving us daily reminders (via Nevin's Down syndrome) of how to enjoy each moment of this life you've given us.

Crafty? not so much :)

2011-04-11T20:08:00.004-05:00

So, if you've been around me lately, you know that I've been working on some "ideas" to raise some money for Reece's Rainbow. I have big plans :) but maybe after you see my first attempt you may suggest abandoning ship.

I've been thinking that Nevin and I will start a "table" of some simple, low-cost jewelry type things that we could sell at garage sales...... and if we can find some willing hosts, maybe follow some of the neighborhood sales.

I have figured out a few things today.

*that online tutorials give you the false impression that it's easy

*that cheap tools are worth the money saved..... NOT!!

*that there is much thought that goes into the "prototype", especially if being crafty doesn't come naturally!

*that I hate being a beginner! I'd really rather be good at it without having to practice. :)

*that even though the "first" isn't exactly perfect..... it is rather endearing. LOL

Notice any "problems" with my first attempt?

Turning Blue... very scary!

2011-04-08T01:17:00.008-05:00

So, I've been "slightly" concerned the last couple of days...... especially after Nevin's recent issues with his "heart pounding"/chest pain and the monitor, etc., because I noticed that his hands were kind of blue....... but no other signs.... so note to self to keep an eye on him. Then later, hands AND feet are blueish. :( but he's adamantly rebuffing my concern..... and off he trotted (literally trotted) down the stairs, with a couple of high karate-style kicks as he swung around the banister at the bottom of the stairs. Sooo, he seems to be doing ok? what's a mom to do? run to the doctor? My fear is that the last time he complained about his heart pounding and hurting, I took him to the doctor and he ended up with a heart monitor on for two days........ which compared to my concerns was no big deal. NOT SO for mister "no-tags in my shirt" Nevin.... oh my, if looks could kill...... I'd of been pronounced dead when I broke the news he would be wearing the monitor to bed!! I watched as the horror on his face slowly changed to resolve (i.e. "I am NEVER telling mom my heart has a pain again!!)". Really, I'm not sure he'll complain about it next time. So I just kept non-chalantly walking through, "hey, Nev.... how ya doing?" THEN, i stopped..... ok, that's it!! now he's looking a little blue around his mouth.......... NO MORE rebuffing my concern........ we are getting to the bottom of this!! So amidst complaints that his movie was almost over, I turn the overhead lights on and have him stand up...... where the light is better.

Hmm...... I know I'm supposed to feel his hands, squeeze his fingertips..... check for "cap refill", but it doesn't seem like they're blanching like they should. Look at his face, his eyes, ...... looks ok. Then ever so slowly....... slowly, it is starting to make sense.

I look down to where he was sitting, yup....... a dark blue cast is all around beige carpet in front of the TV where he was sitting.

I'm now regretting my decision to let him wear his new blue jeans before I wash them, but I am oh, so relieved that is all that it is. Thank you, Jesus!

Oh, and also......... we are very, very excited that we have tickets to go see this group in September at the Gallagher Bluedorn Theatre in Cedar Falls!! seems appropriate today doesn't it? :)

Did you hear? The Judge said Yes!!

2011-04-01T10:37:00.008-05:00

Evan (click here to go to her family's blog)

Evan is now part of the Hook Family!! This is the same judge that denied Kirill his family. So now, our prayer is that she will reverse her ruling. The Davis family has appealed to the Supreme Court, which won't likely hear the case until mid-April...... but there is a chance the the judge can reverse her ruling before it gets there. PRAY!!

I Am Loved (In Russian)

2011-03-31T01:38:00.004-05:00

This is a video that was put together in hopes that a certain judge in a certain country, (who told Kirill's family "No", "because he has Down syndrome, he is better off in an institution" ) will see this video, hear the pleas of many, ..... have a change of heart..... Right now, as I type....... on the other side of the world, another family sits in front of the same judge, pleading that the judge will allow little Evan to have a forever family. Evan, like Kirill, has Down syndrome, too. Meet her and her family here. There have been many prayers and much work that has happened. Please pray that Evan is given the chance to bloom.

The English version: (without music)

This is where Kirill belongs!!

2011-03-26T11:43:00.003-05:00

Dear Russia,

2011-03-26T00:49:00.011-05:00

Kirill........ a little orphan boy with Down syndrome, in Russia. His family found him, WANT him..... (go see the video of when he first met them)...... but the judge said "NO"..... because he should stay in an institution...... This folks, is a tragedy!! an injustice!! We must fight for Kirill, and in so doing..... fight for all those other little ones deemed unworthy of a family... alone, an orphan.

But......It's just me, what can I do? others whom are much better with words have been posting on their blogs, passing the message through facebook friends, ......... I've been reading blogs, staying updated through different groups that support adoption, that support Reece's Rainbow, and that love and support people with Down syndrome. But what more can I do? I contribute to families in process to bringing little ones home...... but what can I do to help Kirill? I think I have maybe 4 followers on my blog, and I'm still trying to figure out facebook ....... and at the current time I'm going to leave "tweeting" up to birds (which by the way...... hasn't it been wonderful to "hear" spring coming? stand outside on these warm days and listen to the birds excitedly talking about the arrival of spring) oops... sorry, i got sidetracked...

Sooo........ tonight, I decided to write to Russia. To Russia, where when a baby with Down syndrome is born, the parents are told to leave the baby there. Sometimes they aren't even allowed to see the baby. They are told that this baby has nothing to offer them, to offer anyone. That this baby will bring them grief and be a burden that will destroy their family. And so, they do..... not feeling they have a choice, schools won't take them, no daycare would take them, no doctors will provide services, ....... they convince themselves that it is for the best. These babies are taken to orphanages where underpaid, over-worked staff can not meet their needs. If they are lucky, they get their diaper changed once a day, they are only allowed a minute or two to eat what they can..... they are left to lie in their cribs... without toys.... they don't even cry..... they have learned that no one will come. Some of the lucky ones will go to "baby orphanages" where they may get a little more attention........ and thanks to the Reece's Rainbow ministry...... some will be rescued/adopted by families who understand that they DO have value, they are worthy of love, of a family. BUT, if they aren't found by their forever family by the time they turn 4 or 5 they will be transferred to the mental institution...... no longer available for adoption..... hopeless ...... little tiny children transferred to a mental institution with adults..... most don't live longer than a couple of years...... and die alone, in a crib.........

Kirill is one of those little boys........ but his family FOUND HIM!! and the judge said, "no". It breaks my heart.

I found an online website of a group in Moscow, that is trying to change old attitudes, prejudices and misconceptions about Down syndrome. They are trying to empty the orphanages by supporting families in taking their babies home from the hospital. Helping support them as they live in a country that has never considered a person with Down syndrome worthy of love, of a family. They are fighting hard. So I decided to write to them....... not because they need convincing, and maybe they already know and are doing all they can...... but if not........ maybe if I email them....... they will be able to incite some "local outrage" and make a difference. Their website, Downside Up, is in both english and in russian, so I am praying they will be able to read the email.

Hello Downside Up member,

My son has down syndrome. His name is Nevin, he is 21 years old. He has blessed our family beyond all expectations. He is a caring, compassionate young man with a great sense of humor. He works at the grocery store 2 days per week and he has volunteered at the local hospital and therapy center for young children with disabilities. He also volunteers in a program the prepares and delivers meals to elderly people who are lonely and need help. He loves books and movies and having fun with family. He loves and is LOVED by his brother and sister and his extended family and friends, as well. Once you know and love someone with down syndrome you realize the potential and the richness that they have to offer to all of those around them. You also become passionate about teaching others about their potential and all that people with down sydnrome have to offer to the world. Which is why I am writing to you.

I know that as a group, YOU understand. You share in that passion to support people with down syndrome and their families.

I wanted to write to you and THANK you for working in Russia to change attitudes in your country and support families whom are choosing to raise their children with down syndrome.

We continue to advocate here in the USA for rights of people with disabilities and of course because of our family experience, especially those with Down syndrome. I know on your website you speak of some of the old prejudices and misconceptions that continue to exist in Russia and that your mission is to change that, so that families will not encounter unfriendliness and lack of understanding as they raise their children and help them grow and learn. I was so excited to find your website and read about all the work that you are doing!!

I assume you are aware of the current injustice that is occurring with a little boy named Kirill, who is an orphan with Down syndrome in Russia, whom has an adoptive family from the USA who wants to help him reach his best potential. They want to take care of him, love him, teach him and raise him. But a judge in Pskov has denied his opportunity for a family "BECAUSE he has down syndrome". Because she continues to believe some of those old prejudices, misconceptions and myths that continue to be common in many areas of Russia.

I don't know what I can do....... what one person, one family in Iowa, USA, can do...... so we pray, we spread the word .......... and I write to YOU, because I know you understand, because I know you believe in the potential of people with down syndrome, because YOU are in Russia, because maybe you haven't heard, because maybe you WOULD be able to do something.......

I am including links to two articles written by people who are better with words than I am......... I hope you will pass this email on to everyone on your advisory board, your patrons, your families, your trustees, your staff, your Early Intervention centre, your resource centre, your news staff, the media, the medical consultants that you work with, the therapists and teachers who support you, the journalists who have helped you, your Charity sports team, .......... maybe together we can make a difference in the life of one little boy........... and by helping him....... we will help change attitudes, change prejudices, change people and give hope to all the children with down syndrome in Russia. There is another family that will be standing in front of the same judge next week, pleading for the chance to give a child with Down syndrome a family........... PLEASE HELP....... if there is anything you can think of to do....... please do it.

Again, I thank you for all you are doing to help decrease the numbers in the orphanages by changing attitudes and helping families take their babies with down syndrome home from the hospital and support them as they raise those children.

I pray that together we can also give hope to the ones currently in need of families. That Judges will begin to understand WHY a family would want to adopt one of these special kids. And maybe even come to know that we feel PRIVILEGED not BURDENED to have the opportunity to be a "family BLESSED by down syndrome".

Together we CAN change the world!!

Thank you,

Laurie Smith

Iowa, USA

http://tinyurl.com/family4kirill

http://tinyurl.com/ReecesRainbow-kirill

A Celebration........

2011-03-12T22:27:00.008-06:00

A celebration of love and marriage.......... but also a celebration of friendship. Chris and Vanessa were married today.

It was also a celebration of friendship........ Chris has worked with Nevin for six years. They have become true friends...... Nevin was an usher in his wedding today. He was SO excited!!

**Check out Nevin's Photoblog if you'd like to see more pictures........ we'll hopefully get them uploaded in the next couple of days.

I'm done!!!

2011-03-09T01:44:00.004-06:00

I'm done!! I'm tired of this. 4 weeks should be long enough, don't ya think? oh, poor pitiful me, huh? It's healing, the steri-strips are now off. I can take a shower without a bag on my foot. So it's progress, right? yup... just being impatient.

And......... already out of words....... hmmm.........

I have enjoyed this chance to read lots of blogs. The internet is quite the amazing thing, isn't it. A friend recently asked me what forums (related to Down Syndrome) did I like and which ones had I found helpful, especially when Nevin was little. I didn't really have an answer.... and in fact, chided myself and my tendency to "isolate". And then........ I realized........... the world wide web started in 1990! that was the year that Nevin was born. There was no internet support that I had access to. I knew of a few other families in our area with a child with Down syndrome....... but beyond that my world was much smaller than what the internet currently provides to people.

And it really wasn't until I started homeschooling Nevin, in 2001, that I actually joined any forums, and even then I was afraid to post, in fact, I signed up with an obviously cryptic user name, address, email, etc. because I was afraid some bad guys were gonna find me!? but I was immediately "booted" with a nice email stating that I wouldn't be allowed to join the forum without providing accurate information. And it seemed to be an email from a real live person, not just a robotic type "boot" from the forum. Soooo, I sent an apology email and explained that I had never provided that kind of personal information on the "web" before. She assured me it was safe and that they maintained security by not allowing obviously fictitious members to join. And so began my exposure to finding support from people around the world. It is still amazing to me how connected you can become with people you have never met.

And while the internet can be a venue for evil intentions/misuse........ it has proven to be invaluable in many ways. Allowing families who felt isolated to "connect" with other families in similar situations.

I still find the technology completely amazing............. and I am grateful for it.

Progress.......

2011-02-28T17:14:00.000-06:00

So, surgery Feb 7th.

Achilles tendon was detached, huge bone spurs removed, heel bone "re-sculpted" (I don't even want to know what kind of tools they used!!), and then tendon screwed back on.

New cast Feb 16th

Cast off and stitches out (i'll spare you the picture that my friend Amy took of the incision). New boot set at 20 degrees of plantarflexion (meaning my toes point down from horizontal 20 degrees). Two more weeks and we move it up to 10 degrees plantarflexion.

Still not allowed to put any weight on it....... but still...... progress.

You'd think I would be a blogging maniac, huh? All this time sitting in the recliner with my foot up on pillows. Well, I am...... but a blog reading maniac instead of blog writing. A person needs to be careful about writing things while under the influence of pain pills. So, now that I only average about 1 pain pill a day...... maybe I can start doing some writing. :)

But I truly have enjoyed having time to read and follow blogs, so many families who are bringing home little ones through Reece's Rainbow. And I have to post about my heart for these orphans when I can FINALLY find a way to capture the feelings about these precious children. ...... it's coming....... i have a partial draft.....

Nevin's Photoblog

2011-02-25T00:08:00.002-06:00

Well, Nevin and I have decided to start doing his photoblog again. And of course, it seemed only right that our first post would be about his birthday celebration.

Check it out. He is very excited to share. IamNevin Photoblog.

Just the way you are!! Love this.

2011-02-23T18:20:00.000-06:00

My Baby!! 21

2011-01-23T15:49:00.012-06:00

My "baby" turned 21 last week. (hmm, my baby with an extra 21, is now 21).

We bustled through the festivities, but today ....... my emotions have arrived.

What a journey it has been ....... and continues to be ....... how BLESSED we are!!

1-19-1990

The Miracle Factory

Once upon a time, three angels were busily working in the miracle factory. They were responsible for wrapping up all the little miracles and sending them on their way. Normally, they wrapped each one in bright, sturdy paper with big, shiny ribbons. They stamped it with a delivery date and away it would go to the parents who eagerly awaited its arrival. Things usually ran pretty smoothly. One day, however, down the conveyer belt came a little miracle that made the angels pause.

"Oh my," said the first angel "this one's uhm.. well, different."

"Yes, his is unique" said the second angel.

"Well I think he is quite special," said the first angel "but I don't think he will quite fit our standard wrapping procedures."

And the second angel added, "And we know he's special, but will everyone else?"

"Not a problem," said the third angel "obviously a special miracle deserves extra special wrapping; and of course we'll send him off with our most heartfelt blessings. Then everyone will see how special his is."

"What a wonderful idea!" replied the others.

So they searched the shelves high and low for the finest paper, and their most delicate ribbons. When they were done, they stood back and admired their work. "Beautiful!" they all agreed.

"Now for our blessings," said the third angel "for it is time for him to go."

"I will bless him with innocence and happiness," said the first angel.

" And I will bless him with strength to face the many challenges that lie ahead" said the second angel.

"And I will bless him with an inner beauty that will shine on all who look upon him" said the third angel.

Before sending him off the third angel, who was very wise, gently tucked a note inside. And it said:

Dear Parents,

Today you have received a very special gift.

It may not be what you were expecting,

And you may be disappointed, angry and hurt.

But please know that he comes with many blessings,

And while there may be pain, he will bring you much joy,

He will take you in a very difficult journey,

But you will meet many wonderful people.

He will teach you patience and understanding

And make you reach deep inside yourselves to find a source

of strength and faith you never knew you had.

He will enrich your lives,

And will touch the hearts of all who meet him.

He may be fragile,

But he has a great inner strength.

So please handle him with care,

Give him lots of attention,

Shower him with hugs and kisses,

Love him with all your heart,

And he will blossom before your eyes.

His spirit will shine like the brightest star for all to see,

And you will know that you are truly blessed.

Author Unknown

Thank you, dear son, you have changed who I am.

God is Good, and You are perfectly God's plan!

oh my, really??

2011-01-11T00:00:00.003-06:00

wow...... what a long time since I've posted. Going on two years........

There is no way to catch anyone up. So very full........ working very hard to ..."Count it all Joy"..... James 1:2

Much has happened, much has changed.............. mostly we have grown. And most importantly, grown in faith. We have had to lean hard on the Lord for understanding.

We have had job lay-offs, new job stresses, health issues, loss, love, celebrations, more love, new friends, money blessings, money challenges ..... and FAITH....... and everpresent, powerful, awesome love of our Lord, Jesus Christ.

We have been blessed.

God is good and God is patient (thankfully), even with slow learners.

Please pray for little Charity

2009-04-04T14:13:00.002-05:00

Please pray for little Charity. She has Down Syndrome and is critically ill right now. Please pray for her and her family.
For more info and updates go the her family's blog: House Full of Joy

2009-02-04T19:57:00.002-06:00

I've been trying to find a way to "come back" to blogging........ this was such a wonderful video..... it was enough to get me "postin' again!

*thank you Amy from On a Joyful Journey for passing this on!

Praying for Julie

2008-11-07T08:57:00.002-06:00

I have had the blessing of being able to babysit for a very special little girl. She will be having heart surgery this month. I am helping her family start a blog so that family/friends can follow along. She's actually in the hospital now with a "bug". Please join us in prayers.

Julie's Heart

Praying for Adelynn

2008-10-23T20:08:00.007-05:00

Addie is a little one from our church (and the youngest member of our HADSA group) who had heart surgery today. Please join me in prayers for a quick and complete recovery!! You can check out her mama's website here for pictures and updates.

Inspiring! Meet Adam Bender

2008-09-06T10:14:00.003-05:00

here's a link to his story. I also enjoyed the second video at this link, where his mom is interviewed.

Take a guess!

2008-07-25T01:19:00.007-05:00

Fun pictures from our vacation at a cabin (at Backbone State Park) with extended family. It was so wonderful to spend a week with my parents and my brothers and their families (we missed you this year, sis!)....... just havin' fun and relaxing.

Sweet Kennedy in her halo

2008-07-03T11:07:00.001-05:00

Please continue to pray for sweet Kennedy. Her surgery went well and now she moves into the recovery phase. Please pray that her pain can be well managed. Here is a picture of her in her halo.

Kennedy is in surgery today

2008-07-02T08:50:00.002-05:00

Kennedy is having surgery today (she's in surgery as I post this) for neck instability often associated with Down syndrome. She will be having a halo placed. PTL that her daddy was able to come home from Afghanistan for her surgery. Please keep her and her family in your prayers. Click on the button to go to her mom's blog and follow Kennedy's progress.

2008-07-02T08:38:00.008-05:00

Flood 2008

2008-06-15T16:18:00.002-05:00

My heart has been so heavy. I've been wanting to post about the floods. But I struggle with trying to find the words. The devastation is so widespread. Homes, businesses and jobs lost. I have worked with many families in the flooded areas. I have friends whom have lost their home. I cry as I watch elderly people not wanting to evacuate because they won't leave their beloved pet. I can't imagine having a loved one in the hospital, possibly in critical/serious condition and need to be evacuated in the middle of the night. The weariness of the first responders is evident in their faces as I watch them heroically work 72 hour shifts and patiently deal with the intense emotions of distressed people.

The flood waters have not touched our home directly, although Kevin (my husband) is now unemployed due to the flood of the quarry. Since Kevin was self employed he does not qualify for unemployment benefits, although we've been blessed to find out today, that he DOES qualify via FEMA unemployment benefits. PTL!

I was searching for a picture that would capture the devastation....... then Amy posted this video.

I did it again. I let him go.

2008-06-10T12:09:00.004-05:00

I let Nevin go to Camp Courageous for the week. This is his third year. The first year was torture, the second year much easier.

This year...... a little harder. I'm not sure why.

Maybe because it was such a hubbub getting ready this year. At the same time I was packing him, I was getting ready to leave for a long weekend to Indiana with dd (she was in a wedding)............ so I left Friday morning before he was up......... and then wasn't going to be able to see him before dh took him to camp on Sunday. However, we ran a little ahead of schedule so I was able to "show up" and get a couple hugs and drop him off at camp.

Maybe it was because I spent a couple days before I left doing some "crisis management" with dd..... and Nevin didn't get much attention.

Maybe it was because last year, I knew he had an outstanding counselor (from some inside information). And this year, it appeared he had a counselor in her first year and first week. And I lost my "insider info source" this year.

Maybe it was because we dropped him off at the very end of the "window of time" to register campers (because they were waiting for me to get home from Indiana) and so we didn't have any "hanging around" time before we left him.

and maybe it's just because....... like...... "just because"

Can you tell I miss him today? Boy, it's hard letting him grow up!

I won!!

2008-06-02T23:44:00.003-05:00

Actually, I didn't win....... well, actually I did win, just not officially. I'm a "weeener" (said in Kevin's best hillbilly accent) because my dear friend Amy won a contest on A is for Aiden and decided to have it sent on to me (because she loves me!). It is a beautiful Down Syndrome Awareness bracelet. Thanks, Amy! luv ya!! Now Nevin and I can watch excitedly for the mailman together (he... waiting for his Blockbuster DVD's and me.... for my bracelet.)

Nevin's blog

2008-06-02T14:30:00.003-05:00

Just last week, I was thinking.......... I have to find a way to "keep" all the work that we have done on Nevin's blog for him. I'm still pondering just how to do that. Can I back it up? Can I print it? Should I just make Monthly books of the daily stories and print them ....... i.e. use the pictures we posted and just "re-create" the story to print, etc.

He loves to look at the monthly summaries (the calendar made of thumbnails of his daily stories......... you can see it by clicking on the name of the month just above the calendar at the left side of the blog). "hundreds of stories" he says.

Then, Saturday.......... we couldn't get on the photoblog to post. Hmmm..... maybe they're updating. Sunday..... we couldn't get on the blog..... Hmmm...... this is scary. Sure hope they're not down for good.

Then, ....... I got this: :( Thank the Lord, it appears that non of the data was lost. Praise be!! This has become a very important thing in our lives. I guess once it's up and running, we'll be figuring out how to "back it up" soon.

June 01, 2008 - 9:10pm PST

Dear Photoblog.com members,

Yesterday evening at 4:55pm, the datacenter that houses Photoblog's servers experienced a significant disaster, but luckily none of the servers in the datacenter were damaged and no data was lost. Here is the email we received from them:
This evening at 4:55 in our H1 data center, electrical gear shorted, creating an explosion and fire that knocked down three walls surrounding our electrical equipment room Thankfully, no one was injured. In addition, no customer servers were damaged or lost. We have just been allowed into the building to physically inspect the damage. Early indications are that the short was in a high-volume wire conduit. We were not allowed to activate our backup generator plan based on instructions from the fire department. This is a significant outage, impacting approximately 9,000 servers and 7,500 customers. All members of our support team are in, and all vendors who supply us with data center equipment are on site. Our initial assessment, although early, points to being able to have some service restored by mid-afternoon on Sunday. Rest assured we are working around the clock. We are in the process of communicating with all affected customers. we are planning to post updates every hour via our forum and in our customer portal. Our interactive voice response system is updating customers as well. There is no impact in any of our other five data centers. I am sorry that this accident has occurred and apologize for the impact.
Sincerely,
Douglas J. Erwin
Chairman & Chief Executive Officer

Dancing!

2008-05-30T21:12:00.004-05:00

Nevin would LOVE a group like this. Sure wish there was one within driving distance. If I knew anything about dance I would start one. Hmmm......... I think I'll start praying about this. I bet I'd have a couple volunteer teachers (a.k.a. Hannah and Nolan... ex-show choir kids)

"Dancing with the feet is one thing, but dancing with the heart is another." -anonymous

Wordless Wednesday

2008-05-28T17:03:00.004-05:00

My new favorite blog

2008-05-23T14:00:00.007-05:00

Thank you Leah for sharing the link to your new hero. It has become my new favorite blog to read/view. I was just sharing that with Amy and it made me think I should share the wealth. Daniel Drinker and his brother Will are making a documentary about his life. It's been wonderful to view all the video clips. While I have a huge list of fellow bloggers who share in the blessing of living with someone with Down Syndrome....... most of them are families with children younger than Nevin. Dan is a little older than Nevin and it's been a delight to watch all of his videos and his interaction with his friends/family. I'm sure you'll enjoy it, too. And if I get permission, maybe I'll include a video from his site sometime........ until then, you'll just have to go to Dan's Blog to experience it.

Seems Like Just the Other Day

2008-05-14T15:10:00.003-05:00

Wordless Wednesday

Mother's Day

2008-05-11T21:40:00.003-05:00

I AM THE CHILD

2008-05-11T18:44:00.003-05:00

My friend Teresa posted this on her blog. I just had to pass it on. I love it.

I AM THE CHILD

I am the child who cannot talk. You often pity me, I see it in your eyes. You wonder how much I am aware of -- I see that as well. I am aware of much -- whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do.
You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world about me. I do not give you rewards as defined by the world's standards -- great strides in development that you can credit yourself; I do not give you understanding as you know it.

What I give you is so much more valuable -- I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers. I am the child who cannot talk.

I am the child who cannot walk. The world seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again. I am dependant on you in these ways. My gift to you is to make you more aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness. I am the child who cannot walk.

I am the child who is mentally impaired. I don't learn easily, if you judge me by the world's measuring stick, what I do know is infinite joy in simple things. I am not burdened as you are with the strifes and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the child who is mentally impaired.

I am the disabled child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith. I am the disabled child.

Author Unknown

Swappie Blog Theme Day/ Charm bracelet

2008-05-09T23:19:00.014-05:00

The Swap is a place online that I call home. It is a wonderful group of christian homeschoolers whom I call friends.

Anyways..... I could go on and on, but I better save that for a later post, because today Amy, suggested we have a Swappie theme blogging day........ and today the theme is Charm bracelet. But I have to hurry, because there is only 40 minutes left of today.

So here you go!!

I actually can't believe I found my jewelry box. I don't remember when I got it, but I think maybe I was in junior high.

I also don't remember when I got my charm bracelet, but I know that there is a bear charm from Yellowstone park, a whale from SeaWorld in CA and Tinkerbell from Disneyland. These were all from a vacation that we took when I was in 2nd grade. Then there are several from my trip to France, which was when I was a senior in high school...... including an Eiffel Tower!! Quite a gap between those two vacations, huh? There is also a Huck Finn charm from St. Louis, MO that I got when I was there playing (my accordian) in a music contest.

Be sure and check out the other Swappie Charm bracelets

Sportsmanship

2008-05-07T23:25:00.003-05:00

This is so inspiring. I just had to share.

Tagged

2008-04-30T18:50:00.004-05:00

Renee over at Life with My Special K's has tagged me. I am supposed to share 6 little known facts about myself. Soo.... here you go.

1. I can't sleep unless I'm covered with at least a sheet.

2. Dh and I lived in 11 different places in the first 6 years of our marriage.

3. My favorite TV series when I was in college was Little House on the Prairie.

4. My first experience with special needs kids was when I volunteered for a week at Jerry Lewis Muscular Dystrophy Camp when I was 18.

5. When I was in high school, I helped build (did volunteer hours finishing woodwork, etc.) Camp Courageous (camp for special needs children and adults)...... which is where Nevin goes for a week during the summer. See his blog...where he recently gave Grandma and Grandpa a tour of camp.

6. My beautician keeps me from being mistaken as Lily Munster.

I tag:

Kelly at The Grey-Haired Geek

Amy at A Redeemed Sheep

Renna at Finding my Knitch

Marilyn at Mixed Bouquet

Many Hats

2008-04-24T22:07:00.006-05:00

I am at a state conference today and tomorrow. Today we had a speaker from North Carolina. She spoke about "Natural Learning Environments: Roles of Therapist and Caregivers". Sometimes it is hard to hold my head up, because I have so many different hats on at the same time. I know we all wear many hats as mothers, daughters, sisters, friends, teachers, etc. But sometimes it seems I'm wearing the team hats of opposing teams.

Hmmm....... let's see if I can explain it better.

I work with special needs children ------ I am a parent of a child with Down Syndrome.

I work in the public school system ------ I homeschool my child.

So, I find as I listen........ I juggle my hats.

Today we seemed to spend a lot of time reviewing research and proving that children learn best in natural environments and if the learning is child directed, interest driven and parent mediated. Hello? ....... that's called homeschooling.

I truly, truly feel privileged be able to homeschool Nevin. We have the freedom to pursue his interests. We can learn in the natural environment. And all learning is parent mediated. And EVERYTHING is individually designed specifically for Nevin.

Not only that, but it's fun! hard work....... but fun! Nevin lives life with gusto, so we homeschool with gusto!

Wordless Wednesday

2008-04-23T14:48:00.004-05:00

the extra measure.........

2008-04-22T22:27:00.004-05:00

I am touched when people take extra time with Nevin..... when they give him a little extra compassion, a little extra attention. When they make him feel valued and important.

Tonight we were planning on going to a band concert. It was going to happen at a local bar and we had heard that if we got there early and ordered food........ and kept the food on the table....... we'd be able to bring Nevin in and stay through the first set. He was SO excited...... a "Rock'n Roll" concert.

But, tonight we found out that rules had changed and NO one under 21 would be admitted. Nevin was disappointed...... but Jon (the lead singer of Midnight to Twelve) met us outside the bar as they were unloading and gave Nevin some extra special treatment!! He got to watch them unload their equipment, got a tour of their bus, got an autographed CD, pictures with the band and with Jon. Definitely a night to remember.

Jon is the son of a friend of mine (they live in CA)....... but doesn't really "know" Nevin....... yet he was WONDERFUL with him...... actually the whole band was great with him. It just warms my heart!!

Be sure and check out Nevin's blog for more pictures.

30 years ago today.........

2008-04-15T15:07:00.005-05:00

30 years ago today, I married the man of my dreams.

*we were high school sweethearts

*We were young and had no idea that it was "tax day"

*it was spring break of my junior year in college

*I had just finished a week of finals

*Kevin worked at the Anamosa Reformatory as a guard.

* He had just finished his AA degree in law enforcement and THEN was told he could never work in law enforcement because he was color blind.

*we had an apartment rented for the summer, but had no idea where we were going from there.

*we were anxiously waiting to see if I had been accepted into PT school at Iowa, Duluth or St. Louis. If none of those accepted me as an undergrad, my plan was to return to Wartburg College and finish my Biology degree and then reapply.

*we had a two day honeymoon in Iowa City (30 miles away) and then returned to spend the rest of spring break moving into the apartment before I went back to school for a month.

*we were young and in love and none of the above things seemed like that big of a deal. :) We'd "figure it out", no worries.

*We did find out two days later that I had been accepted to Iowa, so amid great celebration, we started looking for apartments in Iowa City, where we would live for the next two years.

Back to "normal"

2008-04-13T23:50:00.002-05:00

We are feeling better! Praise the Lord! Nevin seems to be back to normal, although he's been sneezing a lot today. I'm hoping he is not coming down with what I had. After a 4 hour nap yesterday and 10 hours of sleep last night...... I finally felt better today. Whew, it feels good to have some energy.

I was actually able to get some grocery shopping done, some wash done, have a decent meal cooked when my hubby got home from work and begin to get caught up on my blog reads.

But, it's midnight and I better get to bed......... good night!

Sometimes a blessing.....

2008-04-12T12:08:00.002-05:00

Nevin doesn't seem to "own" his calendar. He is able to identify the month, day, year........ but he doesn't own it. He hasn't learned to "use" it, rather he still relies on me. So I've been thinking about ways to make it more usable for him, like moving his calendar to his room, so it could become more of his "wake-up routine" to figure out what day it is and what the plans are. Maybe changing our "bingo stamping" method to something that would be a little easier to correct if any over eager stamping happened.

But today, it's actually kind of a blessing that he doesn't know that he's missing Special Olympics track and field day. The doctor recommended no running after our visit yesterday. After a sleepless night Thursday night, we figured out that he needed to go to the doctor for pain and swelling in one of his testicles. Doctor thinks ..... maybe just bruised or slight torsion, .... who knows... he gave us a script for antibiotics if it gets worse and said to rest ........... anyways....... no special olympics today. And Nevin didn't notice...... that he missed it. The weather wasn't good (cold and rainy/snow flurries) so I don't feel too bad about missing it (especially since I'm still feeling so yucky with my cold).

I just talked with Nevin about it and he's a little disappointed, but okay with it. There's always next year!

Sick

2008-04-12T11:37:00.007-05:00

I've had a nasty head/chest cold for a week. I felt a little better Thursday and yet a little better Friday. I went to bed last night with the assumption of being "all better" today. NOT! :( Sooo...... I guess I'm not going to be able to convert my "to do" list to a "taa daa" list. Bummer. Hmmm....... chicken noodle soup, I haven't tried that yet. That's probably what's missing, I'm not going to be all better until I've had chicken noodle soup. ......off to put the chicken out to thaw and go take a nap.

Chicken Dance

2008-04-04T23:49:00.002-05:00

Make video montages at www.OneTrueMedia.com

My Motorcycle Man

2008-04-03T23:46:00.003-05:00

Research

2008-04-03T22:30:00.009-05:00

Nevin and I are participating in a Research Study on Communication Skills in adolescents with Down Syndrome, being done at the Waisman Center in Madison, WI. This was our fourth year (and last.... he aged out of it, now that he's 18). So we got to travel to Madison and stay at the motel and then go through some different assessments. This year we were blessed to have my friend, Amy accompany us..... so the whole trip was fun..... even the drive. Except for a minor detail (we got lost on the way home)..... not really...... we just missed a turn in the fog, and because of the fog it took us until Maquoketa before the fog started to clear and the scenery did NOT look familiar. We then figured out that we were going the wrong direction! It only added about 30-45 minutes to our drive, but we were still glad to get home!

It is very interesting to watch the assessments that they perform. And Nevin works very hard for them. We get to listen/watch through a one way mirror from an adjacent room, where they are taping the session.

Soooooo..... do you think he knows we're on the other side of the mirror? :)

He was very serious about work time..... but would get his "sillies" out when she allowed him to take a break.

Either matching tattoos or matching purses

2008-03-16T12:43:00.007-05:00

My friend Amy volunteered to help me find some girl time and escape my "Tyrannosaurus Rex" mood. So we "got away" to a nearby city for an overnight, with lot's of shopping and giggling fun.

We've been friends for 23 years. We've been through "life" together. Many times sharing tears and laughter together as we "grew up" and learned to become women. Never have I doubted that if I needed her, she'd be there. Soooo........ when she heard that I was desperate for some "girl time" she came to my rescue.

There just isn't anything as healing as laughing 'til ya cry and as we age...... the "other" saying makes more sense..... i.e. meaning we do more cross-legged laughing these days. :)

Since we've been through everything together...... we decided it was time. Time to do something to honor our "sisterhood". Sooo...... it was either a matching tattoo or matching purses.

After much thought we decided to get matching ............

Tyrannosaurus Rex

2008-03-11T09:20:00.006-05:00

Nevin called me a Tyrannosaurus Rex yesterday. Now, I don't really think he was "calling me names", as he often assigns "parts" to people around him in his plays. So I don't think he meant it personal...... but I took it personal, because I've been a bit ...... hmmmm....... shall we say..... grumpy..... lately. So I think it was an assignment well deserved. :( After I got over having my feelings hurt, we went on to have some very productive school time. In fact, school has been going very well lately. It's been fun.

As I went to my bible for some guidance with my "attitude", I decided to go to the book of Jonah. My bible study group is studying Jonah right now..... so I planned to "review and process" some of what we've been covering. Nevin joined me, so I read it outloud to him. He was very engaged! So we went on to "school" and processed the story of Jonah together. Nevin was very tickled that all the letters of his name are in Nineveh and that he was able to "I Spy" that fact. You might also note in the picture that Nevin usually wants to "re-process" the story with him in it....... thus, Nevin helping Jonah from the dry land to get to Nineveh. :)

I do think that I need to look inward and take better care of myself. I need to sit at the feet of Jesus for a while and surrender some things that I've been carrying. No big secrets..... just life..... it gets real heavy when you try to carry it on your own. I think some of my issues are a combination of cabin fever, and lack of "girl time". Soooo....... girls..... we got some "planning" to do. :)

Dinosaur Bones in my dining room!

2008-03-05T00:00:00.007-06:00

Nevin worked hard digging up dinosaur bones in my dining room. We used the Usborne Dinosaur Kids Kit. It was great, Nevin loved it. It was also very good for eye hand coordination (as you can see in the video). Nevin posted lot's more pictures on his photoblog and also a story he wrote using Pixwriter. He wanted me to post this video, so y'all could see how hard he worked. :)

Photo and video editing at www.OneTrueMedia.com

Upside of Down

2008-03-04T18:56:00.002-06:00

I just HAD to post this. I love it. Thank you Tara from EmmaSage Blog for posting this.

This wonderful song and video created for the 2006 World Down syndrome Congress by Fred Penner.

Enjoy!

Blessed by health

2008-03-01T21:40:00.005-06:00

As I've joined the world of blogging, I'm enjoying reading blogs written by others. I have especially enjoyed the stories of other families who've been blessed by something extra (i.e. an extra chromosome, T21, a.k.a. Down syndrome.

I am reminded of how blessed we were when Nevin was born healthy. His heart defect was minor and did not require any surgery. He latched on and nursed as well as my previous two babies (and although he couldn't handle too much flow..... pumping first to avoid "drowning" seemed to solve this problem .... and after several months, he did fine). His immune system was easily compromised, requiring frequent hospitalizations that first year, but nothing compared to what some families must deal with.

Sooo..... we were spared some of the extra "worries" that can sometimes come with "extra chromosomes". Please join me in praying for families who have to deal with significant health issues related to DS. I've added links to a few of these families. Brianna is dealing with leukemia, she is part of our local Down syndrome support group. Kennedy's daddy is in Afghanistan, she has had multiple health issues including Leukemia and now faces surgery and a halo for severe neck instability. I'll let you meet Chelsea and Parker via their blogs. Princess Mya doesn't have Down Syndrome...... but she does have a brain tumor (her grandpa and my dad are cousins).

Thank you for your prayers.

My dream: The Dreamstation

2008-02-28T12:47:00.018-06:00

This is a dream that I've had for a LONG time. I often drive by buildings that are for lease (like the old grocery story that's been vacated or the vacated exercise center that moved to a larger facility) and think..... oh, my....... that would work nice for my "Dreamstation".

My Dreamstation:

*** a "club", a "playstation", a "rec center" that is accessible to kids and adults who have been unable to access a playground, who have been unable to play in the McDonald's playland, who in no way can get on the typical exercise equipment you see at the "exercise club". With track lifts in the ceiling that would allow EVERYONE to go down the slide...... even if they are too big for a parent or friend to get them to the top of the slide without hurting their backs.

** a special place........ for a special person to bring a "regular" person/friend as a guest, a "privileged place" to be.

* a place where kids/adults can attend "classes" that are specially designed to be accessible....... like regular kids/adults who take classes at the YMCA or cooking or art classes at the community recreation center or community college. With switches, modified jigs, etc. to allow them to participate; for example switch operated blenders, TV's, talking books, a switch operated nerf gun. Computer classes that have the latest technology to allow kids to color, paint, write, talk...............

* a place where the closet is full all kinds of adapted bikes and trikes that could be ridden around the indoor track. And maybe checked out to families for their weekend bike ride. And of course the ceiling track lifts would be above the track, just in case someone needs help getting on/off the bike, or might want to use it with a "walking harness" so they can walk around the track.

*a place where a person could practice on our track, the skills needed to be safe as they venture into the world of power mobility (power wheelchairs, scooters, etc).

*a place that provides special rooms (SNOEZELEN)that would quiet the mind of someone who is stressed and over-stimulated by our world and other rooms that would be designed to awaken and engage the mind of someone who has difficulty relating to our "ho-hum"(by their definition) world.

* there would be a room where kids/adults who have been limited in their ability to be "vestibularly stimulated" like all the young people you see, who are lined up for the rollercoasters and other carnival rides. This room would have all kinds of swings, and hammocks and special lounge chairs on bungee cords, and...... and...... and...... maybe even a flying purple people eater (can you tell I've thought about this often.

* place where kids/adults/families could practice the things they learn in all the therapies that they have worked so hard to obtain. Maybe the therapists would meet them at the Dreamstation and help them design the perfect individualized routine.

* it would be a place where SCL (supported community living) workers or respite workers could take their clients for a fun time...... at the same time giving parents, the much needed break they deserve.

*we would have a volunteer club........ that would help us keep going. Like some retired engineers from Rockwell who would help us design new ways for our "club members" to do things not possible before an engineering type brain was put to the test. oh, oh, oh........ and some of those wonderful creative teachers and therapists that I've worked with who have a passion for these special people........ they would help us keep the "classes" new, exciting and inspiring. We would use a flyer like I received in the mail today (from our local community college) to stay current with "what's popular"...... like photography classes, ballroom dancing classes, scrapbooking classes, candle making classes....... adapting them to the needs of our "club members".

*and of course, a class near and dear to my heart: Reading! for all those previously labeled as non-readers. And I'm sure there would be the Dreamstation Book Club. Where each month there'll be a new book debuted........ maybe even some published by the newly discovered talent of our own club members!

* we would have "shows" to exhibit the talents of our new artists, musicians, actors, authors, etc.

* a place where being different would be celebrated
* a place where being different would be normal
* a place where being different would be unifying
* a place where being different would not be different

****A place where we ALL realize that it is being different that truly makes us all the same.

And of course, Nevin will be the manager of the "Pizza Shop" where everyone can have a bite to eat and a "green pop" while they take a break from all their activities.

There you have it: My dream................ The Dreamstation.

Of course, then I hit the reality of money :( So if any of you know of someone with lots of money, that they don't know what to do with........... have them give me a call. :)

*I can't stop........ I keep thinking of more things...... I keep editing my post! feel free to add ideas in the comments section!

*we'd have overnight camp-outs!

*look out paintball courses....... we'll have our own nerf gun tournaments.

New Strategy (& a "young Nevin" story)

2008-02-26T14:35:00.008-06:00

As important as the curriculum, as important as learning style, as important as teaching style........ ultimately...... we often crash into motivation! Soooo...... we have started a new strategy that will hopefully tap one of Nevin's most motivating things. Movies/cartoons.

Now....... you need to keep this under your hat....... we have cable tv. We have the Disney channel, we have the cartoon network and Nickelodeon. But........ Nevin doesn't know it. Shhh...... we've had it for a few weeks. I have carefully taken those channels off of our TV's so that no one will accidently scan past those channels and let the cat out of the bag (because if Nevin knew we had them..... all he'd have to do is enter the channel numbers on his remote).

In the negotiation phase of deciding to get extended cable, Kevin swore on his life that we would never tell Nevin we have it. In the past, those channels became a huge source of conflict. Nevin would grow roots into the floor in front of the TV and it would take nothing less than a chainsaw to remove him! Plus, he of course, wants to watch all of the cartoons that are not "approved" by current "ruling authority" of this house. (And believe me...... there are many, so many, it was hard to keep the "not approved" list current.) Thus it was easiest to just not subscribe.

So, on to our new strategy!! We now have a DVD recorder with a hard drive....... so I have it set to record the approved things from the "non-existent" channels. ;) Then I copy them to DVD's (I found a GREAT deal on 100 DVD's...... with an instant rebate at OfficeMax). If Nevin were to watch them from the hard drive, I think he might figure out that we have those cable channels.

So we now have a huge stack of 30 minute DVD's that Nevin can only earn by doing school! (I'm so proud of myself, I can hardly stand it). The number of DVD's he earns are dependent on the number of "sessions" of school we have in a day.

Today was our first day. So cool. Before this new strategy, I had to be very creative in transitioning to school work and then keeping him engaged, in order to get lot's done. Sometimes it felt like our time was just too long, but I knew I'd have a hard time getting him back, if I gave him a break....... because he would consider school "finished".

But now....... he earns a DVD and gets to take a 3o minute break watching the cartoon. Then he comes back and wants to do another session of school so that can earn another DVD break! WooHoo........ we got so much done today!

Hopefully he doesn't figure out a "work-around". Like when he was little, when I thought I was so smart and foiled his "escapes".

alert: ** young Nevin story**

First, a little background. When Nevin was little, he was a RUNNER. Anyone who knew Nevin when he was little, knows exactly what I mean. He never stopped and would frequently escape from the house. Everyone (especially all the kids) in the neighborhood, knew that if we put out a "Nevin alert" it meant we couldn't find him and we needed to search. The neighborhood was wonderful, everyone would drop everything and head different directions to find Nevin. We learned to not search the house first, because he was so fast....... we needed to get outside and search the perimeter to see if we could catch a glimpse of his "dust" so to speak....... because if we spent any extra minutes in the house looking...... he would be long gone (and experience proved he was not usually in the house). In Nevin's mind there were no limits...... he would run, enter strangers houses, garages, etc. He didn't usually have a destination in mind, it was the "journey", the "run" that mattered. In fact, that's how we knew he could hear, because if you saw him "on the run" and called to him, he would speed up.

So on to my foiled "smartness" :) We owned every childproofing device available at the time. And we had resorted to installing locks (the drop hook latch type) at the top of each exit door (and interior door, for that matter). But with two older siblings playing inside/outside...... it meant I was spending my whole day answering the door...... "I need my doll..... I need my toys..... I need to go to the bathroom...... I need a drink..... etc. etc.). Sooo, I got my brain working and I had a brilliant idea! We had Nolan.... the next shortest person to Nevin..... come to the front door and had him stretch on tiptoes and reach as far up as he could...... and THAT is where we installed the doorknob on the screen door. Now, I knew that Nevin could figure out how to move a chair to something out of his reach (that's how he got the car keys and tried to start the car at three in the morning..... but that's a story for another day), but we lived in a split foyer and I knew he wouldn't be able to get a chair moved to the landing to get to the high door knob. I was SO proud of myself....... dilemma solved! I watched smugly as Nevin went to the front door and tried to reach the knob. He showed every resemblance to an olympic jumper..... except..... thank goodness his feet didn't leave the floor yet (and I duly noted..... NOT to work on jumping). Then, he "gave up" and came back up the stairs. I was actually quite surprised that I didn't hear any fussing about it. .................Then, I noticed him coming down the hall............. with his sister's baton in his hand......... still confused, I watched as he went down the stairs, used the baton to push up the latch and wave at me as he went out the door!! Sooo...... for a few years, all "long" things were outlawed in the house. No batons, no tennis racquets, no baseball bats, no yardsticks, etc.

So..... I wait..... and hope that Nevin doesn't figure out a "work around" for our latest strategy.

p.s. I'm sure there were many people; mailmen, salesmen, etc. who puzzled over a front door knob that was installed two feet from the top of the door! (in fact, if you visit, you'll see the remnant of filled holes where it used to be installed.)

Beautiful Video

2008-02-24T11:22:00.002-06:00

I Have a Voice