Lily's Life is Great!

ARE YOU MISSING LILY?

2009-08-14T11:53:00.001-06:00

Lily's link has changed so if you are missing her updates, please change your link for her to her new one http://www.lilyslifeisgreat.com/blog

My New Website!

2009-08-01T01:17:00.002-06:00

I have a new website!!! Lily's Life is Great! is full of wonderful new things - check it out!

AND THE WINNERS ARE!

2009-07-27T23:37:00.004-06:00

Everything Lily - Michele
Blankie, Bears & Boys - Kristen
Barbie Holiday - Shannon
Barbie Spring - Lauriann
Compotes - Amy O
Blue Yonder Tee - Lauriann
Vinyl Explanations - Rania
Cards - Adele
Frame - Cheryl
T21 Afghan - Kim
Candlesticks - Ashley
Bracelet - Cathy
SammyTells - Julie
Treasurer Box - Mary
Lisa Leonard - Stephanie
Quilt - Bonnie
Thanksgiving Point - Jeana
Sand Hollow - Carson

Congratulations to all of you! I will be sending you an email and putting these items in the mail. Thank you so much for being part of Lily's 10th Birthday and helping out Jaxson and Parker

HAPPY BIRTHDAY LILY!

2009-07-27T00:05:00.002-06:00

My Dearest Lily Girl!
I remember the day you were born, ten years ago! I got a call from Mark, our adoption worker, and he said you were coming! You were a couple of weeks early, so we were surprised! I asked if I could go and wait in the hospital lobby because I was so excited, but I couldn't. It was for the best, your birth mom, Mommy Alison and her family, needed some time with you. I told him to call back as soon as you arrived I didn't care how late it was!
You arrived at 9:45 pm. You weighed 7 lbs and 8 oz. and you were 20 inches long. You took your first helicopter ride the next day.
Mommy Alison and her family wanted Dad to give you a blessing because you needed surgery right away. We had already been told your intestines were mal-rotated, that means they were all tangled up! I tried all day long to get permission to go up and see you. The word hadn't gotten from where you were born to Primary Childrens. When it did the social worker didn't give the head nurse the okay and went home! Finally a nurse called somebody at their home and we got a call to get up to the hospital as soon as we could because you were going in for surgery at 10:00 p.m. It was after 9:00 pm when we got the call!
Grandma Shirley was here from Arkansas helping your Aunt Wendy because your cousin Easton was born just a month before you. She was waiting at the house with us for the phone call. Dad had called Tom so he could help give you a blessing. We were all just waiting. Grandma and I drove up and Dad drove up with Tom. Once we got to the NICU we had to scrub in. I thought the whole process was taking forever. When we finally walked into your room and saw you we were all overwhelmed by your beauty. You had all this dark hair that stuck straight up on your head, all your brothers and Brittany were bald when they were born!
Dad and Tom had just enough time to give you a blessing before they came in and got you for surgery. On the way down to the operating room the doctor was explaining things to us and kept talking about your esophagus. I finally asked what she was talking about and that was the first time we found out you were missing your esophagus.

After they took you into surgery Tom, Grandma, Dad and I were all standing around talking about you and I was saying how hard it was to hear the blessing over all the noise in the room. It didn't matter that I didn't hear it because Tom said he was overwhelmed by the feeling of the spirit that came from such a tiny little baby. I knew then you were special.
I called GrandMary and left her a message that we had found out about your esophagus. I think she might still have that message saved on her phone!
After we got home Dad and me sat on the floor at the foot of our bed and one of us said "what have we gotten ourselves into" We were tired and overwhelmed by all that had happened in such a short time.
We had no idea how much joy, love, laughter, and hapiness you would bring to so many! I love you so much Lily! I love having you as my sidekick and my daughter. I hope you have a great 10th birthday. LET'S GO SWIM!!

For those of you not joining us at the pool, we hope you take a look at Lily's Birthday Bash one more time. You have until 5:00 p.m. to bid on the items. Please remember that the proceeds of the raffle go to our friends Jaxson and Parker.
This has been a fun way to celebrate Lily! Thank you to everyone that has helped, donated, and supported this cause.

This will be the last post that will be posted on this blog. We are moving to a new website on August 1st. We hope you will join us there! We will list the winners tomorrow and contact them by email.

ONE DAY AWAY FROM 10!

2009-07-26T00:02:00.000-06:00

Just one more day until our baby girl turns 10! It's bittersweet to think about. I have got a cake ordered, the swimming pool party room reserved, now for a gift. She is the hardest one in my family to buy for. She would honestly be happy with a ream of paper, stapler, crayons, tape, and scissors! She wants to go to McDonald's for her birthday dinner - ick!

We have had a great time, picking things out for the Birthday raffle. I think she is tired of taking pictures with them though. I interrupt her Disney watching!

LILY'S FAVORITE THINGS!

2009-07-25T00:04:00.004-06:00

This drawing is now closed

MOVIES!

Lily loves watching movies, especially when we are in the car. She likes old musicals, and Disney movies. We have had to buy two copies of Oklahoma, State Fair, Charlotte's Web, and a few others because she watches them so much. So, we have found three oldies, but goodies for your viewing pleasure.

Another of Lily's favorite things is Cotton Candy (Cotton and Candy according to Lily!) and carmel popcorn balls that you buy at the gas stations. So along with the movies the winner of this drawing will get cotton candy and a carmel popcorn ball.

We want pictures of Jaxson and Parker tasting Cotton Candy, but we don't expect them to eat it all. They can share, if they want ;-)

Leave your comment, link and comment on your blog about us, and leave a comment on Lily's Birthday Bash Post!

THE DOG GOES TO...

2009-07-24T00:35:00.003-06:00

The winner of the dog is My Cool Family

We are headed out of town again!
This time we are camping with Brittany and Gordon!
Tomorrow, if the scheduled post options, work Lily's last giveaway will be posted. If it doesn't post you will see it late Sunday.
In the meantime go check out the raffle items.
There are only 4 more days of Lily's Birthday Bash!

NO GUESSING - IT'S A DOG!

2009-07-23T10:56:00.007-06:00

This drawing is now closed

Which one do you think I (mom) want to giveaway!?!

Grizzly Adams would be on the left and Lil' Snoopy would be on the right.

They both bark, turn their heads, and shake their tails.

One will hold still for pictures, and not give you a look like
"Are you kidding me, you want me to sit!"

Well since there is only one Grizzly Adams I guess you will have to settle for Lil' Snoopy!
Jaxson and Parker we hope you like your new puppy!

You know the drill, comment on this post, link & comment on your blog and leave a comment on Lily's Birthday Bash post, so we know you're seeing all the cool things!

A BIG THANK YOU and the winner is...

2009-07-22T14:49:00.004-06:00

THE WINNER OF THE OWL IS HENRY!

We have two more giveaways until Lily's big day, but today we want to say thank you to several people who have helped make Lily's Birthday Bash Celebration a great event.

In no particular order we want to thank...

Jen even with a brand new baby Jen has been at our beck and call to help with Lily's new website (coming soon!), Lily's Life is Great! products, and she also donated one of her own tee-shirts to the Birthday Bash!

Both of my moms, GrandMary and Grandma Shirley for donating items for the raffle.

We love you!

Mark Whetzel at Vanguard Golf for donating the rounds of golf!

Maybell's Soaps and Candles

Thank you girls for helping to promote Ds awareness!

Kecia at !VinylExplanations!

Kecia's daughter Bree is as cute as a button. Just look at her blog and you will understand why Kecia creates such fun things with vinyl. Thank you Kecia!

Staci at Munchie Me Designs

Staci has two of the cutest girls. They look like twins, but they aren't.

Again I am impressed by the creativity and time all the women that donated have.

Thank you for the fun cards Staci!

Marlene at The Musings of a Mother

Marlene contacted the Utah Down Syndrome Foundation (I am the state president of the UDSF) to do a fundraiser, "Down with Scrapbooking". Marlene has family members who have Ds. She can do amazing things with scrapbooks and other items to show off our beautiful families!

Marlene thank you for making a difference!

The T21 Traveling Afghan Project

I seriously think this is one of the coolest ideas ever.

Chandos thank you so much for being so talented and starting this!

Amy at Bunny Rose Cottage

Amy creates wonderful pieces of art. When I contacted her to donate something her response was anything for Parker! I have asked my mom to bid on the treasure box because I want it for myself. The problem...my mom likes it too!

Thank you Amy!

Lisa Leonard Designs

Lisa blew me away with what she came up with for Lily's raffle. It is everything that Lily is to me. Thank you! Thank you Lisa!

SammyTells

What a creative thinking young man. Sam has created these wonderful Cd's where he has narrated several stories from The Brother's Grimm, Hans Christensen Anderson, and Mother Goose. The money he gets from these Cd's goes towards his LDS mission.

We wish you well on your mission Sam!

Jaxson's Blankies for Babes

Jaxson's Fight

Praying for Parker

5 Minutes for Special Needs

Jaxson & Lacey and Parker & Tammy you are inspirations to so very many people.

If people can't learn how to live life positively after reading your blogs, then I don't think anything can teach them. Thank you for letting us be part of your lives!

The post below didn't post right.

2009-07-21T08:15:00.007-06:00

There were two videos of Lily and her dad doing jokes. Everytime I would upload the second one it would change the first one into the same video. Oh computers!

Don't forget to pause the music at the very bottom of Lily's blog so you can hear the jokes :-)

GO TO THE POST BELOW FOR THE GIVEAWAY!

and

more jokes

IT'S A... WHOOOO!

2009-07-21T00:05:00.005-06:00

This post is now closed

AN OWL!

A little girl needs Daddy
For many, many things
Like holding her high off the ground
Where the sunlight sings!
Like being the deep music
That tells her all is right
When she awakens frantic with
The terrors of the night.

Like being the great mountain
That rises in her heart
And shows her how she might get home
When all else falls apart.

Like giving her the love
That is her sea and air,
So diving deep or soaring high
She'll always find him there.

By Nicholas Gordon

Really need I say more about Lily and her dad.

If you want the owl here's the drill...
comment on this post
comment and post a link on your blog
post a comment on the Birthday Bash post

I WAS WRONG IT WAS A WHITE BUNNY COSTUME!

2009-07-20T12:00:00.002-06:00

This is Gordon in his white Easter Bunny costume!

His mom made it! She's an amazing seamtress!

LILY SINGING AND ANOTHER GIVEAWAY...

2009-07-20T10:14:00.001-06:00

The winner's of the gift cards were Kristen and Pam!

The next giveaway is all about Lily's Dad! This is what Lily thinks of him...
My dad is cute. He's awesome. He's beautiful. He's my dad. He's funny. (Note from mom - I just asked Lily if he said funny jokes, her response "NO") He works. He builds a building. I like to do things with him. We go see Grandma and Aunt Lynne. He's happy. I want him to tell me a funny joke. He's cool dad. I work with him. That's it.

Here is a hint about tomorrow's giveaway...

It's one of Dad's jokes, he got it from his Dad

Dad says - What kind of bird was on Bambi?

Lily says - An Owl

Dad says - Who?

Lily says - An Owl

Dad says - Who?

It just goes on and on and on!

Check back tomorrow to see what we're giving away!

The following is a video of Lily singing her favorite Hannah Montana

Sunday post

2009-07-19T12:00:00.000-06:00

Taken from Balisha's blog

Short post as we are driving back from the family reunion today. Early this month I blogged about Lily being my ladder to heaven. Well this week in the mail I received the jewelry item from Lisa Leonard for Lily's Birthday Bash. I am so tempted to rig the raflle so I can win it, but I won't. I have ordered one for me. I think it is beautiful. Thank you Lisa Leonard.

Wonderful Sunday to you all.

IT'S A...

2009-07-18T00:05:00.002-06:00

This giveaway is now closed

$10.00 WalMart Gift Certificate in honor of Brittany
$10.00 WalMart Gift Certificate in honor of Gordon

we are giving gift certificates because that's what Brittany and Gordon like to get so they can pick out things fr all their different hobbies!

Brittany is a beautiful woman who is amazing with her little sister. She is patience, and kind, she answers ALL of Lily's questions, she braids Lily's hair, and colors with her. Brittany gives her parents good advice when it comes to the brothers of the family.
Gordon is this BIG guy about 6'5", who believe it or not wears a pink bunny costume at his family Easter parties. Now that's what I call a good guy! He has got to be one of the friendliest people I know. Lily adores him.
Together Brittany and Gordon love the outdoor life. There weekends are spent camping, fishing, playing with their dogs, and working on her new house.

Of two sisters one is always the watcher, one the dancer. ~Louise Glück

You know the drill...

comment on this post

comment and link on your blog

comment on Lily's Birthday Bash post, so we know you've seen all the wonderful raffle items!

Hopefully we'll get at least 2 people commenting!

Blogging has been slow :-(

BRITTANY, A GORD, AND A GIVEAWAY

2009-07-17T20:39:00.000-06:00

We are at a family reunion in Colorado Springs, but Lily's Birthday Bash is still happening! Tomorrows giveaway(s) is all about Brittany and Gordon. Brittany is Lily's sister and Gordon is Brittany's fiancee.
Lily tells people she has a sister, three brothers, and A GORD!

Brittany is so awesome cause she loves me cause I'm her sister! she pai nts fingernails. she makes dinner. she lives at her new home. she likes to go camping. she likes to fish.

Gordon is so nice. Way awesome! He works. He's WAY big!

That's it

Check back tomorrow to see what the giveaway is.

Since we are running out of days until Lily's big day we are

giving TWO things away tomorrow!

AND THE WINNER IS...

2009-07-17T09:37:00.003-06:00

CECILIA FROM CECILIA AND TAREK A JOURNEY OF LOVE!

If you visit her page check out this post - Everybody can make a change!

She is also a gluten free kinda gal and has found some great stuff.

Her cute son Tarek has Down syndrome and Autism.

She blogs in both English and Spanish!

She has been a wonderful asset to the Utah Down Syndrome Foundation!

Lily and I are on the road again. Right now in Rifle Colorado, heading to Colorado Springs.

We'll check back when we find more wireless connection!

IT'S A...OH YEAH BABY!

2009-07-16T00:05:00.000-06:00

A $30.00 GIFT CERTIFICATE TO SUKI JEWELRY!

Yep, that's right, if you win, you get to pick anything up $30.00!

And, Suki Jewelry has agreed to do something else to - keep reading!

Sorry Jaxson and Parker but the giveaway today is for mommies, hopefully you will have very happy mommies though!

We want to make sure that everyone remembers why we're having these giveaways, so here's a recap.

Lily is turning 10 on July 27th!

She is very special to her family and has given us so much!

So we are celebrating with Lily's Birthday Bash!

We have put together a wonderful raffle and the proceeds will go to two of Lily's friends, you might have guessed Jaxson and Parker!

Along with that we are randomly giving away 10 items until July 27th!
So far we have given away a swimming pool & towel, a volleyball, a muscle shirt & water bottle, a Beatles CD, and now Suki Jewelry!

What's next... you'll just have to come back and visit!

In order to qualify to get this $30.00 certificate you must to do the following...

post a comment on this post
comment/link on your blog
post a comment on Lily's Birthday Bash post, so we know you've seen all the cool things!

Okay, a little about mom. I was going to be an airline stewardess! I was accepted to Western Airlines school way back when. I fell in love instead.

Jeff and I have been married almost 25 years. Jeff brought his daughter Brittany along into the marriage. I have to admit I was a terrible stepmother! But, both Brittany and I hung in there and I love her like my own, because she is (you'll get too read about her in a few days)! Then came the boys, three boys in six years. I rested for about 8 years, then the search for my other daughter began! You can read the story of how Lily came to be here.

I don't know if Lily made me see how important family is or if was time passing, getting older, losing loved ones and just plain old life. I do know that I wouldn't be blogging if I didn't have Lily in my life. I wouldn't have met so many wonderful individuals that have Down syndrome and their families if Lily wasn't in my life. I would like to think I would be just as charitable and volunteer oriented even if I didn't have Lily, but who knows. I do know this beautiful little girl has made me better and for that I am grateful.

For that I want to give back... And this is how we're (Lily and I) going to do that. We are in the process of setting up Lily's Life is Great website, where she will be selling her brand of items, tee-shirts, bags, and other things. 21% (you get the Trisomy 21) of the profit will go to an individual or organization of our choice. That choice will change monthly; one month it might go to help feed children in Africa, to the local pet shelter, or to individuals just like Jaxson and Parker who are near and dear to our hearts. We hope word will get out about this and that we can help.

NOW for the month of August Suki Jewelry has agreed to give 20% of their profit to Lily's cause. Lily already has two friends that get to split that profit, along with whatever we sell from Lily's items. Of course we will keep you posted!

Happy Birthday to
Jaxson's mommy - December 13
Parker's mommy - July 15
Lily's mommy - July 16

Get posting to win Suki Jewelry certificate!

AND THE WINNER IS... (plus picture day and another giveaway!)

2009-07-15T10:38:00.005-06:00

THE WINNER OF THE BEATLES C.D. IS STEPHANIE FROM DAILY SMILES!

Plus a few pictures from this past weekend...

walking the runway

The birthday girls...

Speaking of the birthday girls WE HAVE ANOTHER GIVEAWAY! It's mom's birthday tomorrow, and it's gonna be a good one!! And it's Parker's mommy's birthday today, HAPPY BIRTHDAY TAMMY! And, it's Jaxson's mommy's birthday in December, HAPPY BIRTHDAY LACEY!

We are so excited about tomorrow's giveaway, mom gets one too! Oh yeah!!! Whoopee! Okay, here is what Lily has to say about mom...

My mom is cute. My mom is beautiful. My mom cleans the house. My mom kisses me. moms zbirthday is tomorrow. (note from mom - we are talking and typing right now and I asked Lily if she remembered what the lady was donating for my birthday tomorrow - the lady is pregnant - Lily stated happily "HER BABY!?!") That's it - Disney channel has priority today

Special Exposure Wednesday

Wordless Wednesday

IT'S A...

2009-07-14T00:02:00.001-06:00

This drawing is now closed

C.D.!

Don't worry it's not one of Tim's, it's one of Lily's favorites.

THE BEATLES

The Beatles "1" 27 No.1 singles

When Lily said Tim is a screamer she really meant, Tim is a screamer. His type of music is called screamo, and from what I understand from the people that listen to this stuff everyday (ouch my ears) Tim is really good at it.

Tim is my sweetheart baby boy, with a funny quick wit about him. But, Tim was always quiet unwilling to step out of his comfort zone. He struggled with reading (and mom didn't have a clue of what an IEP was until after Lily was in preschool - so much for our school!) I think that kept him in his comfort zone a lot, but then he learned to skate and snowboard (until he broke his back) and out of no where he told us he was a singer in a band - yeah right Tim (we didn't believe him) Then he told us his band was competing in Battle of the Bands, would we buy tickets - oh dear.

There he was up on stage in his back brace, the music started, very loudly I might add...and then AAAAGGGGHHHH BAAAAA RRRRAAAAA, obviously I don't know what he was singing/screaming, he says there really is words. But, it was the manner in which he was saying them that made my mouth drop open so that other people noticed (yes I embarrassed my other two sons) From deep in his stomach and the tighting of his throat rose this low toned scream of sounds. I was so impressed! So proud I shouted "that's my baby boy!" although no one heard me over his screaming. I started doing "the pony" then quickly stopped, this was not about me. It was all about my baby boy growing up. They all grow up, don't they.

Move out of your comfort zone. You can only grow if you are willing to feel awkward and uncomfortable when you try something new.
~ Brian Tracy

Lily's 1st concert!

She had two sets of earplugs on! A set that went directly in her ears and then the kind they use at gun clubs.
Tim singing to Lily and trying not to laugh at her rocking out!

After the concert. Lily loved every minute of it. Tim went to kindergarten with the guy in glasses, and Junior High with the guy in green. Who knew!?!

Remember in order to win The Beatles 1 C.D. you need to -

Make a comment on this post
Make a comment/link on your blog
Make a comment Lily's Birthday Bash post

Jaxson and Parker better get your grove on!

GUESS WHO CAUGHT THE BOUQUET AND ANOTHER GIVEAWAY

2009-07-12T21:17:00.000-06:00

We are back from the wedding, fast trip. Guess who caught the bouquet? Yes, that would be Lily, Sklyer will be so excited!

Tomorrow's give away is all about Tim! This is what Lily has to say about her brother Tim.
Tim is cute. I love him. He watches me, then mom and dad go out to dinner together. We went bowling. Tim screams so loud in a band. He makes pizzas, its good. That's it!

Below is a slide show of the wedding.

I'M GOING TO HAVE A BABY!

2009-07-12T00:07:00.001-06:00

taken from Never Enough Time

We are driving back from Boise today. We went there for a wedding of "my other daughter." My dear friend and her family moved away from their home, across the street from us, before we got Lily. Our kids played back and forth and when they moved at the end of a school year her 2 kids lived with us so they could finish up their school year here.

So, it was a very special day that the first time we were driving to Boise to visit them, 10 years ago, was the exact same day we found out that Lily would be ours

I was driving there with 3 little boys in tow. I was trying to get things loaded and ready when I got the call that changed my life. It was our adoption worker, he asked if I would come to his office with the boys. He had already called Jeff who was at work.

...I started to tell the story of how Lily came to be in a past blog. This is a brief summary of what happened next. In June of 1999 I had to write birthmom to tell her why her baby should be ours. My feelings had been long in coming; for almost two years I had been looking for my daughter. My husband agreed to talk with our church leader. Give that man a pat on the back because he told Jeff that usually when impressions were as strong as mine they usually came true! That was fall of 1998.

Here is a timeline of what happened next -

I contacted the adoption agency.
October/November 1998 my feelings got stronger (birth mom conceived Lily)
January 1999 Jeff and I went to a special needs adoption seminar, there was a little girl there with Ds that sat with Jeff all through lunch. I left thinking I could have a baby with Ds.
Last part of March, first part of April I got the feeling that the adoption might not happen (birth mom just found out baby would have Ds and was being counseled of her options)
April got a call from adoption agency. I had left all zip codes off the references. I knew the adoption was back on full force.
Saw a t.v. show about adopting children with special needs and talked with a friend about children with disabilities. I knew then I would be getting a daughter with Ds.
June 2, 1999 had home inspection. Adoption worker told us about birth mom's baby. He wasn't suppose to because we weren't cleared yet; our names are very common. I told him I already knew about Lily and she was ours.
That wonderful day when the adoption worker called - He sat us down in his office and said that he had received this letter and wanted me to read it (can you say nervous!)

This is the beginning, it is dated 7/7/1999 - I am so grateful that I got your family to choose from... I feel very blessed to have you guys as the parents of my child.

After reading the letter they presented us with a basket of cookies. One said "It's a girl!" The boys loved it.

We still had a vacation to go on! So we loaded in the car and I remember stopping at a truck stop trying to call my family. We had a great weekend, but as we were walking by a Carters store at an outlet mall I had a moments panic when I realized I'M GOING TO HAVE A BABY!

I had less than 20 days to get ready (granted she stayed in the hospital for 2 1/2 months, but I didn't know that then).

This is me holding Lily for the very first time 7/31/1999

ALL FOR THE LOVE OF A CHILD

2009-07-11T00:05:00.005-06:00

We are still gone today, so we have decided to highlight a few people that make a difference in the lives of our children. I am touched by what these individuals have done and continue to do all for the love of a child. The love for their child has spread and touched 100's of other children. It is amazing to me what one person can accomplish when they are guided by a power bigger than them self. These individuals, along with Lily, have inspired me to do more.

First we have The T21 Traveling Afghan Project
One blanket. Many states. Many countries. Hundreds of families. One common thread!

This mom made an (one) afghan and she sent it to one child who held it, and loved it, then they sent it on to another child with blessings and prayers. And, it started all over again.

This afghan is powerful at this point.

I think it is fascinating that this mom thought of this and put it into action.

Jaxson and his very own T21 Afghan
Yes, you can order your very own (we are raffling one off!)

Second we have MayBell's Soap and Candles
Now I can understand a parent stepping up, but Maybell's Soap and Candles is run by two girls, two friends, who happen to each have a sister with Down syndrome.
The proceeds from these wonderful soaps and candles go to Down syndrome awareness. Yes, we are raffling off a soap and a candle with the Lily of Valley items.

Thank you Maija and Rylee for being wonderful people!

Third we have Jaxson's Blankies for Babes
Seriously, how much can a mother take on? This is Jaxson's mommy doing this! Do you think she has time to sleep, I don't! She along with some really good friends make blankets, free of charge, and sends them to sick children. In the video below it talks about being able to hold that blanket while your child is in surgery, what a comfort that would bring. Again amazing...

Click on this beautiful little girl to watch a special video.

Jaxsons blankies for babes

This is the one we have to raffle

Fourth is 5 Minutes for Special Needs
Parker's mommy is managing editor at 5 Minutes for Special Needs. Where she finds those 5 minutes I will never know, but I am grateful for her and all of the wonderful, creative people that share their thoughts, insight, lessons, instructions, joys, and sorrows with us each and every day. I am lifted by them, given a different opinion, and viewpoint.I am taught by them. I have cried tears of sadness and tears of joy. Take 5 minutes for yourself to visit.

ALL FOR THE LOVE OF A CHILD

TAKE ANOTHER LOOK! and the winner is...

2009-07-10T00:05:00.004-06:00

Dawn from Mamma Monkmee won the muscle shirt!

Lily and I are enroute to a wedding in Idaho, so we are reposting her Birthday Bash post in hopes that you will all look again at the wonderful items in the raffle.
We still can't believe that some of these things have not been bid on!

If you want to buy a raffle ticket for an item, but don't want to use AlertPay email me at mom24-7@comcast.net I will work something out with you!
Remember the proceeds of thsi raffle go to Jaxson and Parker!

I am turning 10 on July 27th, so I am having a BIRTHDAY BASH!

The proceeds from MY BASH will go to my friends Jaxson and Parker.
I think Jaxson and Parker are cute!

ITEMS are $5.00 each
You can make a contributation for just the items you want!
Or you can make a contribution at the very bottom of the page

Lots of people donated items to make this a great BASH.
If you want to donate an item contact my mom at mom24-7@comcast.net
Check back to see if items have been added - we will also blog about it

The BASH will close at 5:00p.m. on July 27th
We will ship your items to you.

To add to the fun on 10 random days we will be having free give aways!
And, even better, Jaxson and Parker will also get what we are giving away!
We will pick those winners from the people who comment on the item of the day.

1st item - Everything Lily of the Valley!
Crabtree & Evelyn body lotion & bath & shower gel in Lily of the Valley scent
Catherine Lee's book The Language of Flowers
Candle & soap in Lily of the Valley scent from Maybell's Soap & Candles
We have TWO of these!

2nd item - Blankie, Bear & Boys
Jaxson's mom donated a blankie from Jaxson's Blankie's for Babes it's been paired up with a bear and handsome clothes for boys.

clothes are Carter brand size 9 mo.

3rd item - Barbie Holiday Pack
contains XO Valentine Barbie, Easter Magic Barbie,
Enchanted Halloween Barbie, and Christmas Morning Barbie

4th item - Barbie Spring Pack
contains Flower Shop Barbie, Pretty in Plaid Barbie, and Sunshine Day Barbie

5th item - Southern Living at Home Victoria Pressed Glass Compotes
&
Taste of Home Simple & Delicious Cookbook
set of 8 compotes

6th item - Blue Yonder Tee Shirt
you get to choose style and size
donated from Jen at Blue Yonder Girl
Jen designed Lily's blog page!

7th item - $25.00 Gift Certificate to !Vinyl Explanations!
Kecia at K&K Enjoy the Journey creates fun things for your home with vinyl.
She will design a custom piece just for you!

This is our front door - it says Welcome
It comes off very easily with a blow dryer
We've had Happy Thankgiving, Merry Christmas, and Happy Valentines

8th item - Designer Cards
Staci at MunchieMe Designs has donated beautiful handmade cards!
they come with white enevelopes

9th item - Custom Made Frame
Marlene at The Musings of a Mother has donated a custom made frame ready for your family photo!

10th item - T21 Afghan
Afghan in your choice of colors from The T21 Traveling Afghan Project!

This is Jaxson with his Afghan - quiet please

11th item - SC Line Genuine Lead Crystal Candlesticks
made in Italy, approx. 9" tall, bottom emerald green, top rim finished in silver

12th item - Bracelet from Coldwater Creek
Sterling silver and genuine abalone shell

13th item - SammyTells CD's and A Treasury of Children's Literature
SammyTells has created 3 wonderful CD's where he retells the stories of The Brothers Grimm, Hans Christen Anderson, and Mother Goose. Along with the three CD's is the beautifully illustrated book A Treasury of Children's Literature

14th item - Treasure Box
Amy from Bunny Rose Cottage has donated a beautiful Treasure Box!

15th item - Lisa Leonard Item
Lisa Leonard Designs has donated one of her items!

(image coming!)

16th item - Quilt from Grandma Shirley!

Lily's grandma quilts, she made this beautiful navy and yellow quilt, approximately 46" x 55"

17th item - Foursome of Golf
Golf at Thanksgiving Point's championship caliber course!
Valid Sunday - Wednesday after 2p.m.

Lily and her dad, uncles, and lots of friends at the UDSF Golf Tournament at Thanksgiving Point

18th item - Foursome of Golf
Golf the championship course at
Sand Hollow Resort!
In Hurricane, Utah

Valid Sunday - Wednesday after 12p.m.

If you don't see anything you're interested in but would like to contribute to LILY'S BIRTHDAY BASH you can do that here!
Enter the amount you wish to contribute before you hit the "Buy Now" button

THANK YOU!

IT'S A...

2009-07-09T00:05:00.003-06:00

This drawing is now closed

MUSCLE SHIRT AND WATER BOTTLE!

Okay here is the story behind Kenny. First of all, the picture doesn't do him justice on how big those muscles really are. He gets those from his dad, all natural, and lots of hard work in the gym, plus he is working for a paving crew this summer before he goes back to school this fall. Kenny has got to be my most sentative child. He is overly concerned about his friends and family. He would bend over backwards for you, BUT... the name Kenneth means physical beauty and born of fire, both are true! Don't get Kenny mad by messing with his sister! When we brought Lily home the boys were so excited and of course they talked about it in school, Kenny was in 6th grade. The bell had rung everyone was running outside when someone made a comment about Kenny having a retarded sister. Let's just say the boy never said anything like that around Kenny again.

Our brothers and sisters are there with us from the dawn of our personal stories to the inevitable dusk.

~Susan Scarf Merrell

Lily and I had so much fun picking out these shirts!

Hey be glad Kenny took out his gages, both Jaxson and Parker have enough unwanted holes in their little bodies!

We got the boys Jaxson and Parker their size according to mommies.

The shirt for the raffle winner is a 3T.

Remember to win you need to leave a comment here and on the Birthday Bash post
We want to make sure you are seeing all the great things!

And you need to write something on your blog about Lily's Birthday Bash.

ALREADY...YES ANOTHER GIVEAWAY!

2009-07-08T10:23:00.002-06:00

We have so many thing to give away and so little time, so we are having another giveaway tomorrow. This one is based on Lily's brother Kenny. Lily said this about Kenny -

Kenny is cute. I went swimming with Kenny. Kenny is gorgeous. Muscles Awesome! Kenny works hard. Kenny go to the gym. That's it.

So come back tomorrow and see what we are giving away

Remember Jaxson and Parker get one too

And, now enjoy our pictures from the 4th on the farm...

Wordless Wednesday
Special Exposure Wednesday

AND THE WINNER IS....

2009-07-08T00:05:00.000-06:00

LAURIANN

FROM

THE MANY ADVENTURES OF MICKELLI & RILEY!

IT'S A...

2009-07-07T00:05:00.005-06:00

This drawing is now closed!

VOLLEYBALL!

Having never played volleyball before, Henry went to a volleyball camp at his junior high. Some of the BYU players were there helping out. Henry was so awkard! He would jump, land in the net, and bring the net down! The coach wasn't going to pick Henry, he already had his team picked, but one of the BYU players told the coach to give him a chance. He thought Henry had potential. Henry started that year, and has played ever since. He played on a Junior Olympic team, has gone to nationals several times and now plays for the University of Utah. He brought a new activitity into our lives! All the boys play now and we love to watch.

Moral of the story - Everyone has potential, they just need to be given a chance.

Now how to win - make a comment here, post about it on your blog or Facebook, and make a comment on the Birthday Bash post, that way I know people are looking at all the great items!

IT'S FIXED - I hope

2009-07-06T12:07:00.002-06:00

The paytabs are now fixed and working, I hope! If you would prefer to send me a check, email me with the item you are interested in winning. I will put your name in the drawing and I will send you my address, so you can send me a check.

Also, if you are interested in sending Lily a birthday card email me and I will send you the address.

OOPS, GRANDMA SHIRLEY, AND ANOTHER GIVEAWAY!

2009-07-06T00:01:00.000-06:00

OOPS!

Note from Lily's mom - WHAT A DAY! PayPal contacted me and said I could not use them for Lily's raffle because they don't do raffles, after discussing and going back and forth I just decided to go with AlertPay, BUT I have to be verified first! What a pain, but I will not give up that easily, cause this is for JAXSON and PARKER!!!

STAY TUNED in a few days the links should be working so you can have a chance to win your favorite item! Remember this is for Jaxson and Parker!

AND...

GRANDMA SHIRLEY

has donated a beautiful quilt for LILY'S BIRTHDAY BASH

Hopefully, in a few days you should be able to bid on this.

NOW

Another Giveaway!

This one is centered around Lily's brother Henry. This is what Lily has to say about Henry...

Henry is cute!

Henry is so darling. He's my brother. I love Henry.

Henry works at Best Buy. He works at design place.

He goes to college with Brynn. Brynn is Henry's girlfriend.

Henry plays volleyball!

That's it.

WHAT DO YOU THINK WE WILL BE GIVING AWAY TOMORROW!?!

Check back and see!

MY LADDER TO HEAVEN

2009-07-05T01:00:00.002-06:00

This beautiful picture is by Julie Williams

Note from mom - A while ago we shared how Lily got her name (sorry, we linked to it yesterday as well.) Today I want to go into a little more detail about Lily, her name, and what it all means to me.

Lily of the Valley is 'Our Lady's Tears' according to Christian legend Eve's tears turned into Lily of the Valley as she was leaving the Garden of Eden.
Lily of the valley is the symbol of sweetness, happiness, beauty and gaiety.
The meaning of Lily of the Valley is....Return of happiness, purity of heart, sweetness, tears of the Virgin Mary, you've made my life complete, humility, happiness, love's good fortune. It is also believed that this flower protects gardens from evil spirits.
Lily of the Valley is also known as Little Maybells, Fairy Cups, and Ladder to Heaven.

Lily is my Ladder to Heaven. She will get me there. She will teach me all the things that I need to know to return to my Father in Heaven. I believe this to be true for every parent that has a child with a disability. I can't explain the "pure joy" (words I've used to describe Lily forever!) that these children give to the world. Lily has made me love better, care better, do better.

I got permission to use this print from Balisha over at Never Enough Time

HAPPY BIRTHDAY GRANDPA GENE!

2009-07-04T01:00:00.001-06:00

Note from Lily's mom - Today my Grandpa Gene would be 100 years old if he were still alive. He only knew Lily for a very short time. Right after my Granpma Beth died Grandpa Gene gave me some money. He said that Grandma had set aside money for all her grandkids and we were to get something that we wanted. Well I had wanted a dining room table forever, and everyone thought that is what I was going to get. Instead I used the money as part of the adoption fee for Lily.
We don't use a dining room table anyway.

Happy Birthday Grandpa! I love you!

HAPPY 4TH OF JULY EVERYONE!

WORRIED ABOUT COWS

2009-07-03T02:25:00.004-06:00

Note from Lily's mom - okay it is 2:26 A.M. and I am worried that I don't have the real picture of grandpa and grandma real cows (see post below!) I finally found it!

meet Norman and Leroy

Ahhh, much better! Now off to bed to worry about something else. We will be having another giveaway soon!

AND THE WINNER IS...

2009-07-03T00:07:00.003-06:00

REBECCA!

Rebecca's daughter is awesome! She can ride a bike. She wore a helmet, I wear a helmet. Her brother rode with her.
Today we are going to Grandpa and Grandma Shirley's house! They have a dog. They have cows. We are taking our trailer. I hope it doesn't break! That's it!

These aren't Grandpa's cows, my mom lost the picture of them!

Note from Lily's mom - Funny how things work out, I had the article below already written for today's blog and then random.org selected her as the winner...
Rebecca from E is for Everything posted the video below on her Facebook - I had to post it on my FB and here as well. This is what I said on FB...
To me this video is about life and how we chose to live it. These people brought this beautiful baby into the world and loved him. In return he taught them so much. If you have never been around a child with a disability you might not understand the wonderful power they have over you. And, you have missed out on an increbile experience.
In the past few weeks I was asked to talk with a mom who found out she was having a child with Ds and wondered why anyone would want to adopt such a child. In the end she never talked to me or anyone else, I know what that meant. She missed out on two wonderful amazing things 1) a beautiful child 2)giving this child a wonderful life through adoption.

Warning - Beck's videos are not for everyone.
They are beautiful and they are very real.
The Life of Beck

IT'S A SWIMMING POOL!

2009-07-02T01:00:00.005-06:00

THIS DRAWING NOW CLOSED - LILY HAS TO GO TO BED!

Well it's a little swimming pool and a cute beach towel.

If you're interested in winning this leave a comment, and if you think Jaxson and Parker are cute write about them on your blog and send people our way!

Lily will announce the winner first thing tomorrow morning!

BE SURE TO CHECK OUT THE COOL BIRTHDAY BASH ITEMS TOO

REMEMBER IT'S FOR JAXSON AND PARKER!

1st GIVEAWAY TOMORROW!

2009-07-01T17:34:00.004-06:00

So here is how the giveaways will work. On a random day between now and the 27th we will be picking days to give things away. The day before you will get a little hint of what it might be. Then on the day of the giveway we will post a picture of what we are giving away and those that comment under the picture will be included in the bash!

Remember that Parker and Jaxson will also get whatever the giveaway is.

So here are your hints for tomorrow.
I like to do this!
My dad does this!
e're qgoing to do this on my birthbay!
Note from mom - only three hints because it takes Lily sooooo looonnnnggg to type them ;-)

LILY'S BIRTHDAY BASH!

2009-07-01T14:54:00.011-06:00

Valid Sunday - Wednesday after 12p.m.

THANK YOU!

LILYISMS - SEE I TOLD YOU!

2009-06-30T19:01:00.005-06:00

Lily knows she has Down syndrome and if there is someone in the same place as us with Down syndrome she is sure to point them out. It's getting a little out of control, because right now she thinks that every Asian person has Down syndrome. And...

...the other night we were eating out, she was getting her drink, and she came running across the room yelling "look mom he has Down syndrome." Well I look up, and no, this elderly man does not have Ds just a lot of droopy wrinkles and a big smile. His wife was not smiling.

So Jeff and I were trying to convince her that this man did not have Down syndrome and she responded with "Oh, well I was just checking."

You would think this would be the end of it, but no, as the man and his wife walked by carrying their tray Lily shouted out "SEE I TOLD YOU HE WASN'T DOWN SYNDROME!"

Yup - that's my girl.

I'm also sharing a picture that she drew of me today. I hope she's just been watching to much Sponge Bob Square Pants and that's not how she thinks I really look!

We are so excited for tomorrow. I just hope there aren't a lot of problems with it. If so be patient and please email me so I can fix it.

INDIANS AND CAMPERS

2009-06-29T21:08:00.005-06:00

Note from Lily's mom - Saturday we took a quick trip to the Pow Wow up in Heber. Beautiful coustumes and good food.

Today Lily and I spent cleaning (scrubbing) a camper trailer that Jeff decided to buy. It is so old, but everything works. It had bees nests growing inside! We will show you the finished product.

WE THINK WEDNESDAY IS A GOOD DAY FOR
A BIRTHDAY SURPRISE!

I WAS A PRINCESS!

2009-06-28T18:41:00.012-06:00

I got to go to a Princess Festival and be a princess for a day. The princesses were all cute. Most of the pfincesses had Down swyndrome. I was Princess Lily Smith. I was darling! I liked it. I went with my mommy. That's it.

Note from Lily's mom - The Utah County Chapter of the Utah Down Syndrome Foundation got a really special treat, when 25 little girls were sponsored to go to the Princess Festival in Hatfieldadelphia (Lindon, Utah). Ron Hatfield made this princess wonderland, which is truly a wonderland, for a charity that is near and dear to his heart In Our Own Quiet Way . This organization helps feed children in Kenya. The girls learned how to curtsy for the queen, they got to wake Sleeping Beauty, and watch as the princesses and princes danced in the ballroom.

The Birthday Surprise is coming!

So Excited!

2009-06-28T00:02:00.003-06:00

Note from Lily's mom - I have commissioned Michael Jurogue Johnson to do a watercolor of Lily! I have been wanting one for years. I will share with all of you when I receive it.
In the meantime Lily and I are working on the birthday surprise and her birthday party. She has decided to have a swimming party with cake and white ice cream. She could care less about the cake as long as she has her white ice cream she's good.

I'M DEVASTATED!

2009-06-25T14:51:00.002-06:00

Note from Lily's mom - Last week I blogged about talking with a mother who had recently found out that her unborn child had Down syndrome. The counselor just emailed me and said after talking about multiple resources the family has decided not to talk to any families. This is so hard to think about. I just want to cry.

DAWN

2009-06-24T18:38:00.003-06:00

Note from Lily's mom - Dawn is my age now...
Dawn turned 46 on June 22, so she can't say anything about me being older than her, at least until my birthday in July! Dawn is amazing and I can only hope that Lily will be as smart and independent as Dawn. Dawn lives on her own, works, knows the bus system like the back of her hand (she was on one of the UTA's councils for people with disabilities who rode public transit.) Dawn now sits on the Best Buddies committee and the Utah Down Syndrome Foundation as a self-advocate. More importantly Dawn is my friend. We can sing Donna Summers very loudly together in the car and do great disco moves. We don't care that Lily is embarrassed, and tells us we can't sing.
Today we went to Thanksgiving Point for her birthday and out to lunch. Dawn is great to go out with. If I spill on myself it's okay, because she does too. She accepts me with all my faults and problems (I think she thinks Lily is a problem at times!!!) She is polite, gracious, and just fun to be around.

Happy Birthday Dawn!
We love you!

PICTURE DAY - FASHION IN THE WORLD OF DOWN SYNDROME

2009-06-23T22:39:00.006-06:00

Ricki's mom posted a picture of Ricki looking beautiful, but made the comment about Ricki not always looking good. I don't know, but I think there's something kinda cool with be able to pull off any look!

“Style is knowing who you are, what you want to say, and not giving a damn.”
Gore Vidal

Wordless Wednesday
Special Exposure Wednesday

WE DON'T WANT TO MAKE YOU JEALOUS BUT...

2009-06-23T17:08:00.002-06:00

We just went to visit Jaxson! My mom held him. I was nervous at first because of all his tubes. I got used to him. He is so cute. he loves me! he's darling! i liked his brothers too. That's it!

MY DAD'S CUTE!

2009-06-23T13:24:00.004-06:00

For Father's Day we went to my sister's for dinner. On the way there we ran into a bunch of cows! We saw elk and deer. The food was good. I like going to work with my dad. I'm dad's baby girl, not Brittany! My dad is nice I love him! That's it.

Half Full or Half Empty? The Story of the Cracked Pot

2009-06-20T11:21:00.005-06:00

We took this right off Jacob's blog! He took it off His Girl Friday blog. Enjoy!

A Chinese woman had two large pots, each hung on the ends of a pole which she carried across her neck. One of the pots had a crack in it while the other pot was perfect and always delivered a full portion of water. At the end of the long walks from the stream to the house, the cracked pot arrived only half full.For a full two years this went on daily, with the woman bringing home only one and a half pots of water. Of course, the perfect pot was proud of its accomplishments. But the poor cracked pot was ashamed of its own imperfection, and miserable that it could only do half of what it had been made to do.

After two years of what it perceived to be bitter failure, it spoke to the woman one day by the stream. ‘I am ashamed of myself, because this crack in my side causes water to leak out all the way back to your house.’The old woman smiled, ‘Did you notice that there are flowers on your side of the path, but not on the other pot’s side? ‘That’s because I have always known about your flaw, so I planted flower seeds on your side of the path, and every day while we walk back, you water them. For two years I have been able to pick these beautiful flowers to decorate the table. Without you being just the way you are, there would not be this beauty to grace the house.’

Each of us has our own unique flaw. But it’s the cracks and flaws we each have that make our lives together so very interesting and rewarding. You’ve just got to take each person for what they are and look for the good in them.

Note From Lily's Mom - I Am Feeling Overwhelmed!

2009-06-19T20:20:00.004-06:00

Hi all,
Lily and I usually blog about Lily, since this is her blog, her life, her journey, and she is just about as perfect as I can picture a person to be. Lily was sent to me in such a special way. My heart still pounds and my skin tingles when I think about her adoption journey. And when I look at her sometimes I am overwhelmed that she is my girl and I have been given such a gift. What if I mess up?
But, this blog is not about Lily. I guess in a way it is because of Lily...
Okay, I am rambling.
I got a message from a genetic counselor, in another state. She has a mom who is pregnant with a child that has Ds. This mom is "very torn about adopting her child or what action to take..." (I am praying that "action" doesn't mean anything negative)
The counselor has heard Lily's story and wants to get the mom in touch with me.
I am asking for prayers that I might touch this mom and let her know how important she is, how important her baby is, how important her decision will be in making another family complete.
I have never asked for prayers for myself before, but I am asking now.

The Beauty of Life: The Blessings of Blogging - My 300th Post - And a Give-a-Way....

2009-06-19T13:50:00.000-06:00

The Beauty of Life: The Blessings of Blogging - My 300th Post - And a Give-a-Way....
I think I've created a link a new way, just trying something new :-)

The Beauty of Life Give-A-Way

2009-06-19T13:42:00.003-06:00

Shari over at The Beauty of Life is having a giveaway for her 300th post! Go check out her blog and celebrate 300 with her!
Keep checking back here for Lily's birthday surprise!

WORKING ON MY BIRTHDAY SURPRISE!

2009-06-11T13:11:00.004-06:00

MOM anbd i have busy getting my birthday blog surprise ready! Keep chdecking bzack.

note from mom - Lily is practicing her typing, so please disregard the typos!

PICTURE DAY - HELLO SISTER, HELLO BROTHER

2009-06-10T10:26:00.004-06:00

Lily and her brother Tim have a wonderful relationship. Whenever they see each other it's always Tim that starts out by saying "Hello sister!" and then Lily will follow with "Hello brother!" Tim then asks about her day. I love it.

Wordless Wednesday

Special Exposure Wednesday

THE 5TH DAY JESUS PUT FISH IN THE WATER

2009-06-09T12:03:00.005-06:00

Last night we had Family Home Evening. We talked about Jesus creating the world. He created the moon, the sun, the trees, the animals, and he created Adam and Eve. For dinner mom made fish sticks and we had apple pie for dessert! We went to The Living Planet Aquarium and saw lots of fish. I liked it. The fish were cool. We saw eels. The button shocked you! (note from mom - next to the eel there is a display set up and when you touch it you get shocked, like you would from an eel)
I touched the tail of a stingray! I liked it. We saw seahorses. We saw jellyfish. We saw clown fish like in Nemo. That was cute! That's it.

LILYISMS - WHOSE JOB IS IT ANYWAY!

2009-06-08T19:50:00.003-06:00

Tonight Jeff, Lily, and I were driving to the aquarium (Lily will blog about tomorrow). There is a lot of road construction going on in our area right now, so I was telling Jeff what I thought about going through a really torn up part. I thought I was discussing things nicely, but Lily must have heard a certain tone in my voice. From the back seat she yelled at me "MOM, LET DAD DO HIS JOB HERE!"

LAST DAY OF SCHOOL!

2009-06-05T13:30:00.005-06:00

Today was the last day of school. I hung out with Annie. We played baseball. We played football. People wrote on my arm! My friend Annie gave me candy. Cierra gave me bubbles and candy. I got the most helpful award! I liked school this year. I liked reading, playing basketball. I'm going to sleep over at GrandMary's house now! I'm going to swim! I'm gonna have a birthday party! We'll have cake. I'm going to the movies. I'm going to watch the Disney Chanel. That's it.

Note from mom - Lily's school participates in "Meet the Masters" art program. She brought home her art work and her brother, Henry, who is in graphic design knew most of the artists by her art work. Let's see how many you can guess!

2
3

4

IT'S BEEN GOOD!

2009-06-03T21:59:00.008-06:00

The Jazz Bear made a special stop in Miss Ralph's classroom!
Lily's class was part of the gold medal activities

On field day the fire trucks came to play water games!

Notice the Jazz ball, Miss Ralph is a BIG FAN!

Christmas ornament

I think one of the biggest lessons I have learned from having a child with a disability is to do what is best for your own child and not give in to what society says you should do. As the state president of the Utah Down Syndrome Foundation I have heard horror stories from parents regarding their child's IEP and school situation. I have always counseled parents to know their rights and stand up for their child.
When Lily started kindergarten, in a mainstreamed classroom, I was ready for "the fight" well there was no fight, things went well, Lily had a great teacher who told me that in kindergarten children start to read, so Lily would start to read and sure enough that is when she started reading. 1st grade went well and 2nd grade went well. ~~But~~ BUT along came third grade, that didn't go so well at first. She started off in a mainstream classroom, but it was obvious that the other students were passing her by socially, physically, and academically and it didn't help that the new special ed teacher (3rd one in 3 years) didn't want to take the time to modify Lily's work and asked all the aides too write down everything Lily did wrong. She kept pushing for self-contained. For that I am truly grateful. I'm just not grateful for the way she handled it. Long story short we put Lily into a self-contained classroom at the first part of October, her 3rd grade year. I could have fought with the teacher, the school, and the system and won, but what would I be winning? Lily was not happy.
Moving schools was probably one of the best things we could have done for Lily. I went against everything I had ever told another parent! I didn't know differently, that is what our society (the world of disabilities) teaches and shouts, mainstream, mainstream, mainstream! I still believe that a child with disabilities benefits tremendously from being in a mainstreamed classroom the first few years of school, but now I believe a parent needs to stand back, observe,and listen. Observe you child, Lily went from happy to sad. Listen to your child, Lily told me she didn't feel well and didn't want to go to school.
She flourished when we moved her. The kids in her classroom opened her with welcome arms! They are beautiful kids with trachs, wheelchairs, hearing aids, Autism, Down syndrome, sign language, leg braces, and on and on. They accepted Lily for who she was. It was a teary eyed day for me when she walked into that classroom for the first time and all the children came up to her and asked if she was staying and would she stay for lunch, instead of being shunned from the typical students that I had also witnessed. I was shocked that the teachers allowed her to actually touch the computer! I was thrilled when she came home with math papers and understood! I was happy that she was excited to go to school again.
4th grade found her in a new school again, still in a self-contained classroom. Again, she has soared. Her teacher believes in teaching both academically and socially. They have done oral reports, learned about and wrote reports on the holidays, the new president, and even eating right. They talk about how to treat others and how to act in certain situations. The school itself has been good to this classroom. Lily is known by everyone, even the custodian! There are buddies that come into the classroom and help out. This is a big deal to the typical kids, something they look forward too.
Lily came home from school today with a CD full of pictures. A mom had come in and taken pictures throughout the year of everything. What a great thing to do. I love to see the smiles on the faces of these kids.
It's been a good year, it's actually been a good 4 years. And, I'm really glad that I listened to my child instead of going with society on this one.

Summer Ideas

2009-05-31T17:38:00.005-06:00

Note from Lily's mom - Summer's coming and I have got to keep Lily busy! I sat down today and put together a list for each day of the week. Monday through Friday we will have school time for 1 hour a day. This will keep her from forgetting what she had learned throughout the year. The school is going to send home a packet that will be full of school work. We will also have P.E. because I have noticed that Miss Lily has been eating a lot more and watching T.V. more, she's taking after me!!! Then Monday through Friday there will be a theme for the day. It's not going to be an all day thing, but I have to devote a few hours a few hours a day to Lily.
Monday will be devoted to getting ready for family home evening.
Tuesday will be devoted to a longer school day, to include arts, computer, and maybe practicing typing on her blog.
Wednesday will be devoted to Lily's Faith in God requirements
Thursday will be field trip day. I get all the local magazines and papers and look for free or inexpensive places to go.
Friday I'm not sure about yet...any ideas!
She will also be taking swimming lessons, so some of the days may be shifting around, but I have to start somewhere!
I have never had a structured summer with any of my children, but I feel like I really need to start this simmer with Lily. I don't want to fail, so I am keeping things small. Wish me luck!

***Keep reading, we are making big plans for Lily's 10th birthday!!!***

WE WON!!!!!

2009-05-29T17:32:00.004-06:00

picture taken off the Dreyer's Grand Ice Cream website

We won the ice cream give away at Twofer Thumbs Up!!!!!!

As promised we are sending the ice cream Parker's way.

Thank you Twofer Thumbs Up!!

Thank you Edy's/Dreyer's Ice Cream

Happy Eating Parker!!!

LILYISMS - I WARNED YOU!

2009-05-28T10:55:00.005-06:00

I have told my boys thousands of times they had better be careful about what they say and do around Lily because she will repeat, SAY, and do what they say and do.

So last night we were at one of Henry's volleyball games. He plays for the University of Utah.

Lily quickly latched on to the two cutest girls there and had them in her trance for the rest of the evening telling them all about herself, her animals, and her brothers, especially Henry because he was right there.

While Henry was bent over waiting for the next play, Lily remembered something he had done in those shorts one day. He had mooned her...

She told the girls in full detail about the incident and she went on to tell them how disgusting and gross it was! She used her expressive rolling eyes and flipping of the head and hair to tell the story, and she used her expressive hands, throwing them up in the air - "like duh whats a girl to do!"

Maybe he'll think next time, but then again maybe not.

You Scream, We Scream!

2009-05-27T16:39:00.002-06:00

Check out this fun giveaway!

As much as we like ice cream we are hoping that Parker get's a years supply!

But that shouldn't stop any of you from entering the contest.

Good Luck!

Wordless Wednesday - A Great Day to Golf!

2009-05-27T08:45:00.005-06:00

Resolve never to quit, never to give up, no matter what the situation.

Jack Nicklaus

Wordless Wednesday

I LIKE MYSELF!

2009-05-25T19:42:00.005-06:00

I'm cute! I'm darling! I love me! I like myself!

It was a good weekend. I golfed by the hotel. Skyler was there too. Skyler likes me and going to marry me. We stayed at the hotel. Skyler's room was close to ours. We went swimming. We went to the museum and saw a movie.

We went to Aunt Lynne's. We ate dinner. It was good.

We went to Grandpa Frank's grave. I love him.

That's it

Skyler & me getting a ride from Kari (Skyler's sister)

Skyler & me in the cave at the museum

Sarah, me, & Skyler at muesum (Sarah is Skyler's sister)

Deer by Aunt Lynne's house

Helping dad put flowers on Grandpa Frank's grave!

LILYISMS - THE SEARCH BEGINS!

2009-05-14T21:17:00.002-06:00

Guess we'll have to start searching Lily's backpack from here on out. This morning she got on the bus with a tee-shirt and jeans on. This afternoon she came home with her pajama bottoms on! When I asked her why she changed her response was she wanted to relax!!!!! Seriously though do you think the teachers even noticed she had changed.

Magic Marker Monday- Lambs

2009-05-11T15:18:00.002-06:00

Mom's Nice

2009-05-10T13:28:00.005-06:00

Today is Mother's Day. My mom is awesome, she's nice, she's pretty. We're going to dinner for Mother's Day and going for a ride in the car. I went shopping with my brother Kenny. He got mom a candle. I told mom all about it. Mom's so gorgeous. mom is so cute. love me. i like snuggling and watching tv with mom. mom loves me so much! mom helps me. she lets me get diet coke and mcdonalds. we go to the movies. i gave mom a cookie cookbook for mother's day. i made it at school. mom went to the zoo with my class.

That's it.

(note from Lily's mom - I let Lily type the last half of this. She must be practicing at school because she did really well! I'll have to let her type more, even if it takes a little longer)

Lilyisms - The Truth Prevails

2009-05-07T00:27:00.005-06:00

Oh my Lily, how I love her!

Last week we went to see her orthodontist. We had missed her last appointment because of all the accidents we had. As I was telling the doctor what had happened he noticed the bruise on my leg. Lily just had to get in n the conversation - her remark... "My mom has hair on her legs!" At least I didn't have a booger in my nose like last time!

Sunday Lily had her Special Needs Primary Program. She was on the stage and every time she saw someone walk in that she knew she would run off the stage and give them a hug. But, going back up on the stage there was a ritual she would do. Her hands started waving around her body, then her hands would come down in front of her like she was in prayer. I thought okay, she's calming herself. It was my nephew, Grant, that caught on that she was doing what Sharpay, from High School Musical, does before a performance!

Sunday was also the day that Tim had his Eagle Court of Honor. Lily got upset with one person because he was not at her program which was right before. He told her he hadn't been invited (he had been) but, anyway... Lily's old primary president spoke up and said "I wasn't invited either" Lily looked right at her and said "well, I didn't want you there" I should tell you that Lily and her primary president have always had a fun, teasing relationship, but I was still just a little embarrassed, and maybe a little jealous that I can't be so forward sometimes ;-)

Want a FREE strand of Freshwater Pearls!!!

2009-05-01T13:46:00.002-06:00

Parker and his mom are totally awesome! They along with Goldsmith Co. Jewelers have made it possible to get a FREE strand of Freshwater Pearls just in time for Mother's Day! Head over to Praying for Parker to get the coupon!!!

EASTER BUNNY and CAR WRECK

2009-04-19T00:02:00.016-06:00

Easter Bunny

We went to a hotel for Easter. Easter is good I like it. Before the Easter Bunny came we went on a ride. I liked that. We see fish. We see a deer, he had his bones out (to mom -"where's his head") We saw a dead moose too (to mom - "whys it dead?) We looked at a building and took all your stuff out of your pockets. I liked that, it was fun. I saw horses. We went swimming! I like it when I swim. I tried to push off and my dad catched me. The next day the Easter Bunny come and got me a shirt, and I got a pants, and I got candies, and I got more candies. My basket was in the closet and I saw it there and I was so happy and so excited! I gave my sister, Brittany her basket. When I came home I got two more baskets from my grandpa & grandma and GrandMary. Dad ate my candy cause he liked it. That's probably it.

(note from mom - Jeff came home Friday night and said let's get out of here, so the closest place we could get was Vernal, UT. Vernal is home to Dinosaurs! We used to take Brittany and the boys there when they were little, so off we went. On Saturday, we headed to Flaming Gorge. On the way we stopped and took little hikes, we saw a decaying deer without it's head and a dead moose, of all the things to remember!!! We toured the dam, inside and out, very interesting. That is where we had to empty everything out of our pockets, since 9/11 they have got tight security. Once we got to the bottom of the dam we fed fish. It was a lot of fun! After leaving Vernal we stopped at Brittany and Gordon's who live on the way to Vernal and gave them their Easter baskets that the bunny had left. Fun, fast, get away!)

Car Wreck

Mom and I were driving. We spin around, oh I hate that! Mom got hurt. I don't like that. We were going grocery shopping. A car hit us, no a girl hit us. My dad come and I'm scared. I sat by mom cause I love her and I was scared. I could put her in a wheelchair, but she's too heavy. Fireman came, they talked about mom. They talked to me. I told them my birthday, July 27. Mom went in a big chair. The fireman gave me a bear. I was happy. I gave him a hug. Dad picked me up. The officer took mom to the hospital in ambulance. GrandMary came to the hospital and took me to Aunt Michele's. We watched Bolt!

"Mom try not to get into accident again" The car is broken. That's it.

(note from mom - On Friday, April 17, Lily and I had just gone to get the mail for the Utah Down Syndrome Foundation and were heading to Costco. We were going through a green light, with the rest of the traffic, when I caught a glimpse of a white car coming at us. I knew we were going to be hit. The woman went through the red light and hit us. We spun around and ended up in the opposite direction from where we started and her car slammed into a light pole. Lily was terrified! She asked what I had done. She had no clue of what a car accident was. I asked her if she was okay, she looked and sounded alright. I was dazed, but alert enough (or panicked enough) to think the car might blow up or catch on fire as it was smoking and making popping noises, so I yelled at her to get out of the car. Once I saw how fast she unbuckled her seat belt and got out of the car I knew she was all right. In fact she didn't have a scratch on her. Heavenly Father was watching out for her, I know it. Several people stopped to help us and make sure we were alright. Lily would cry for a minute and then some one would say something and she would be okay for a minute. She kept asking for her dad as I had called him. She was going to watch out for him because she knew I was hurt. All the emergency crews came, she answered all the questions she was asked, her name, birthday. A fireman gave her a teddy bear and after that she was fine. She gave him a big hug and waited for Jeff. The woman that hit us probably won't make it. She had an older car without airbags and wasn't wearing a seat belt. Jeff said he couldn't see any skid marks from the direction of her car, she never saw us. He saw my skid marks where I tried to stop. If I hadn't of seen her she would have hit my door or right behind and got both Lily and I. We were being watched over. I am very thankful to my Heavenly Father that we are okay. By the way I may be to heavy for Lily, but I wasn't for the cute firemen that "hefted" me onto the gurney. I ended up with a concussion, bruises and bumps. I am very sore and very blessed. In the ambulance ride one of the guys talked about Lily and how amazing she was. Today, I was talking to the Sergeant on the case and he too was very impressed with the spirit around Lily - that's my girl!)

WHAT'S THIS???

2009-04-04T13:46:00.005-06:00

Lily's joke for the day...

Mom, what's this?

MY FINGERS!!!!!!

MY INTERVIEW HAS AIRED!!!!!

2009-03-22T20:56:00.002-06:00

I'm so excited my interview is here! It's cool! I like it! My dad was funny, he's cute. I liked seeing myself in the movie! I'm excited for the movie to come out. That's it.

Celebrating World Down Syndrome Day!

2009-03-21T10:31:00.005-06:00

Don't tell me I can't

when I've already proven to so many that I can and have

Don't tell me I shouldn't be here

when so many people would not have learned the things I have taught them

Don't tell me I have no value

when I have given so much joy, laughter, and love to so many

Don't tell me I'm different

when everyone in the world is their own unique person

Don't tell me how to live my life

when there are so many possibilities for me to try

I CAN do things!

I was put HERE on this earth because of my VALUE and DIFFERENCE.

Possibly to even teach you how to live a better life.

Suzie Smith

Lily's mom

3.21.09

SARAH IS AMAZING!!!!!

2009-03-20T20:15:00.002-06:00

We want everyone to go over to Sarah's page. Sarah is amazing!

My New Photos!

2009-03-09T17:07:00.003-06:00

Julie Williams took my pictures again!

The T21 Traveling Afghan Project

2009-03-06T14:02:00.003-07:00

The T21 Traveling Afghan Project is a wonderful project and we are very excited to have our turn and celebrate the wonderful lives of individuals with Down syndrome!

Thanks Miss Emmalee for being the wonderful you you are!

Lily's Talent Show

2009-03-04T17:26:00.001-07:00

This is Lily at her talent show.

MY STUFF

2009-03-04T16:07:00.003-07:00

I saw the Jazz Bear at school. It was so much fun!

I went to Skyler's birthday party. I love Skyler. I want to marry him. His party was at bowling. I win! We played games at his party. We ate pizza at his party and had a drink. We had cake.

I was in a talent show. The talent show was so great! I sang. I sing "I am a Child of God" I did good. I didn't want mom to help. The talent show was for Special Needs Primary and Mutual. I like Special Needs Primary. Eliza played the piano for me. Eliza is nice and cute. She likes me. I like singing. I like to dance. I like to play.

That's it.

Note from Lily's mom - Coming up with the title was a little difficult today. I asked Lily what she wanted to call this and gave her several options. She said "My Stuff" so I repeated her to confirm asking "My Stuff?" Lily came back with a "No my stuff, not your stuff!"

LILYISMS - "OH MAN A BUM"

2009-02-19T23:38:00.002-07:00

Tim, Lily and I (mom) were in the car talking about President Obama. Lily is determined that there is no other president in the world except President Monson, prophet of the LDS Church, so upon hearing the words 'President Obama' Lily shouted "It's President Monson not President Ohmanabum!"

Our Flames Should Burn Bright!

2009-02-15T10:15:00.002-07:00

We're sending you here for this post. Don't let our kids flames go out!

We like Jacob

2009-02-12T14:59:00.002-07:00

We like Jacob and his Dad's blog.

FILMING SOMETHING

2009-02-12T11:55:00.005-07:00

Yesterday mom and I were filming. I don't know what we were making. It was fun there. I switched names with a girl. My name is Lois now. I got to play myself. There was a camera and a microphone and a light. The man was so cool, he was my dad. That's it.

Note from mom - Lily and I were asked by the Utah Parent Center to take part in updating their IEP training video. This video is about 30 - 40 minutes long, helping to educate parents in the IEP process, and is used in both Utah and New Mexico. Marty Blair is the head of the project and also played the part of Lily's dad and my hubby. Lily wasn't to sure about Marty at first, she already has a dad. I did talk her into letting him put his arm around the back of her chair though. Fun day!

DO YOU FACEBOOK?

2009-02-09T17:25:00.006-07:00

I have a Fan page, Lily Alison Smith, on Facebook - check it out!

Georgia's Smile

2009-02-08T14:31:00.001-07:00

Lily We Have A Problem!

2009-01-30T21:27:00.005-07:00

I talked to Lily a little more about her calling me today. I asked her when it happened, she said during lunch. I asked, did the teacher know, she said yes and she said she got in trouble. Then Lily went on to tell me how her teacher was not the boss of her and could not tell her what to do! And Lily was going to tell her that.

Then tonight we went to a birthday party. Okay this is big, because Lily as well as most kids with disabilities don't get invited to birthday parties. So we walk in and the majority of her class is there (her class consists of 4th - 6th grade, Lily being the youngest) Almost all of them shouted "Oh Lily!" and shook their heads. Then a few of the girls, who shall remain nameless, went on to tell me how much trouble Lily had gotten herself into today. One shouted "she got an X!" and another shouted "no, she got all the way to red!"

I asked Lily...yes, she got all the way to red.

I guess I'd better call the school...

Did I tell you on the phone today the secretary told me I was "a good woman" I am now wondering what she meant.

Lilyisms

2009-01-30T14:58:00.007-07:00

Over the past few weeks Lily has had some doozie Lilyisms!

She asked her dad to spank me for singing to Hannah Montana (he was thrilled!)

She saw the new president on T.V. and shouted there is President "Barakalli"

When her brother later asked her who the new president was she quickly replied "President Monson" He is the prophet and president of the LDS church!

Not a good one, but hey musical chairs is serious in elementary school - The class got to play musical chairs as a reward for the class being good. When Lily didn't get to a chair when the music stopped, she promptly slapped the other little girl that made it! So much for the reward :-(

Another one that I was not thrilled with - while in the middle of talking with her orthodontist my darling daughter looked up at me with loving eyes and said "mom, you have a booger, in your nose."

On that same visit while the orthodonist was in mid sentence she stood up, said "thanks" and "good-bye" grabbed her file and left the room. Yep, she was done and so was he.

She called me out of the blue today - from school!!!! She just wanted to say hello and that she loved me. Do you think she can work the office staff!?!

Man I love this girl!

HIGH SCHOOL MUSICAL 3!

2009-01-16T18:11:00.003-07:00

Josh, mom and me went to High School Muscial 3 today. It was good! It was fun! I kept standing up, because I liked it and I wanted to sing and dance. It was cool! It's awesome. My favorite part was them kissing together! The singing and dancing was cool! The next part I liked was the dancing. I like to dance. I made up a song on the way home, I sound just like them! I want to buy the video. I've been in East High before. I knew where they were dancing on the red stairs! That's it.

ICE SKATING!

2009-01-09T20:31:00.005-07:00

Today my friends and moms went ice skating. These friends are from my neighborhood and church. At first I didn't like it. Then my friends took me around and I liked it! Ice skating is fun. I kinda liked the food, it was a little creepy (note from mom - carrots, broccoli, orange slices, you know - good things). I got cold. I would go again.

(Note from mom - This was a mother and daughter church activity. The first time going around it was Lily and myself with Lily holding on to the sides of the wall. One of our friends came around and asked Lily if she was having fun... Lily's response "Yes, I hate ice skating!" Once the girls grabbed her and took her around she had a great time!)

FAMILY PHOTO

2009-01-02T20:03:00.004-07:00

We got new pictures this year!

Julie Williams of Impressions Studio & Gallery took our pictures. She did a fantastic job! Julie also volunteers at Now I Lay Me Down to Sleep, check her photos for nilmdts at Impressions of the Heart.

Beautiful Print

2008-12-29T17:47:00.007-07:00

We were given this card -

Click here and here to see the whole picture.

CHRISTMAS BREAK

2008-12-29T16:35:00.004-07:00

The hamsters are hiding

I had a good Christmas. I got a baby doll, big coloring book, a hat, two hamsters, they are so cute, their names are Dusty and Ray. I got a telephone! I got some shirts and two movies and some clothes and cowboy boots. I've had a good Christmas break. I went to the movies with my mom and dad. I've been watching a lot of Hannah Montana and drawing and coloring. I need to do that right now. We've had breakfast in the morning, pancakes and syrup. I love all my grandparents, they gave me good gifts. That's probably it.

GOOD TIDINGS OF GREAT JOY

2008-12-10T14:13:00.006-07:00

And, lo, the angel of the Lord came upon them, and the glory of the Lord shone round about them: and they were sore afraid. And the angel said unto them, Fear not: for, behold, I bring you good tidings of great joy, which shall be to all people.

Luke 2:9-10

Wordless Wednesday

This kind of stuff gets me boiling!

2008-12-08T19:12:00.002-07:00

Note from Lily's mom - I saw this article through a blog that I follow from Ireland. I need to learn to stay away because I get SO ANGRY!

STUFF

2008-12-05T10:42:00.002-07:00

These are some random pictures of Lily's life recently. The flat wet hair look at the end...Josh had just wet and pulled his hair back for work. Naturally she had to try it ;-)

**Just a note, if you are thinking of a gift for your child get them a digital camera! Lily has an inexpensive one from Disney that you can add characters to your pictures, but she also uses mine. You should see some of the pictures she has taken! We let Skyler use the camera during Lily's church program; he loves taking picture too!!!

Thanksgiving 2005

2008-11-14T14:33:00.001-07:00

I just found this among my files of pictures. It is Thanksiving 2005. The day after we buried my sister Angie.
Everyone including cousins play with Lily's ears! They are so soft. She tells people she got them at Target!

Lily and the dentist office...not a good match

2008-11-13T10:07:00.006-07:00

Happy Autumn!

Lily in 2000

Okay, I've never had a child get as nervous as Lily when it comes time to go to the dentist. She loves the people in the office it's just what ends up happening to her while she is there.

Tuesday we went to get two small cavities filled (her first ones). We knew (Lily did to) they would give her oral sedation because the last time they did anything besides look in her mouth, it took 4 of us to hold her down. Granted they did pull out 4 teeth, 2 of which had roots about a 1/2" long and were curved because there were no permanent teeth underneath.

Okay enough graphics... the oral sedation had the reverse affect on Lily. It made here hyper, not sleepy, and the laughing gas made her out right giggle and then giggle some more and then promptly gave her a stomach ache. The numbing gel they put on before giving the numbing shot tasted icky and didn't help her already upset stomach. And then the shot, she freaked. She couldn't see it or feel it, but I think she felt the pressure, smelled and tasted it. Yeah, we were done. No sealants, no cavities filled, just an upset stomach and a numbed left side.

I never thought I would have to put a child out to fill a cavity, but in a few weeks we will try an IV sedation. Oh joy, I can't wait.

BTW, Lily's mouth expander is doing amazing things! Her upper jaw has moved in front of and outside her lower jaw click here. They think it is helping her sleep apnea! She has something a lot like restless leg syndrome when she sleeps. That is partially due to iron deficiency, so she takes iron 3 times a day now. Amazing what a sleep study test can tell you!

Bonneville - Part Two

2008-11-10T20:40:00.001-07:00

Bonneville - Part One

2008-11-10T20:30:00.001-07:00

This is the story Ability TV came to Utah to do when they found Lily and did her interview! Lily's interview will be out in 2009!!!

JOSH

2008-11-10T16:44:00.003-07:00

I like Josh. It was his birthday yesterday. He is my friend. I love him. He is Kenny's friend. Josh is nice to me. He helps me read and do homework. He came to my Halloween parade. He works at a restaurant. He lives with us. He eats dinner with us. He shares a room with Kenny. Josh is a good guy. That's it.

Note from Lily's mom - Josh has been friends with my son Kenny for about 6 months. Recently Josh had a prompting from his angels that he acted on and because of it he saved my son's life. I will forever be grateful to Josh. I have learned much from Josh. I see how others look at him and judge much too quickly. His appreance might scare off others, but not me. His "tatts" and piercing stand for something that is important to him, so it is important to me to respect those things, just as he respects me. Josh is real, he tells you what he thinks, he's a bit quick to act, but is working on it. Josh would give you the shirt off his back and is thankful for things that a lot of us take for granted. Josh is going on 7 months being clean and sober. His life has not been easy. He lost his dad at a young age and his mom struggles with her own issues. He doesn't make excuses, if he messes up he admits it. Josh is learning a new way of life and I am grateful that I can be part of that new life. Thank you Josh.

HAPPY HALLOWEEN!

2008-10-31T11:59:00.001-06:00

GET IT DOWN - DAY 29

2008-10-29T13:18:00.007-06:00

This is an article from when Lily and I went to the special Mass. It was reprinted with permission. To see the article on the Salt Lake Tribune website click here.

Lily Smith, 9, who has Down syndrome, is held by her mother Suzie Smith of Holladay, during the Mass.
(Jim Urquhart / The Salt Lake Tribune )

'Together . . . we are truly gifted'
Special Mass celebrates the contributions of people with disabilities

By Jessica Ravitz
The Salt Lake Tribune
Article Last Updated: 10/27/2008

Draper - Cindi Vega sat near the front of the church, her guide dog, Romy, curled at her feet. Around her, a handful of churchgoers signed back and forth in a flurry of silent conversation. Nearby, several people in wheelchairs found their places along the aisle, moving past Scott "Scotty" Bonn, 23, who rocked in his seat and threw his head back to take in something higher.

About 50 people came out to St. John the Baptist Catholic Church last Friday evening for a special disabilities awareness Mass, the first of its kind for the Catholic Diocese of Salt Lake City. Hosted by the Diocesan Commission for People with Disabilities, the Mass loosely coincided with the 30th anniversary of the United States Conference of Catholic Bishops' statement on people with disabilities, a document that emphasizes the dignity of all in a unified church - "one flock that follows a single shepherd," a diocese statement read.

"It's not the disabilities but the abilities that make you who you are," Utah's Catholic Bishop John C. Wester said to the congregants, most of whom bore no visible disabilities. "We have gifts God gives us. . . . But there are other gifts that are far more important, and they're gifts you can't buy in a store."

Wester spoke of "gifts of the heart," of the ability to learn from, love and forgive one another. "You already know that which is superficial and that which is profound. . . . Together, as the body of Christ, we are truly gifted."

As he addressed the audience, others read and hymns rang out, a sign-language interpreter stood front and center sharing the words and spirit.

Vega, 37, of Taylorsville, was helped to the stage, and with Romy peeking from behind the podium, her fingers traced the Braille of her reading. John Lipsey, a 23-year-old Westminster College student, sang with a small group of performers, his BrailleNote - a laptop computer of sorts - serving as his songsheet.

When the time came for the Eucharist service, Scotty, who has Down syndrome, his 13-year-old brother, Trevor, and two others walked their way down the center aisle to present the bread and wine for consecration.

Some who showed up were there less for Mass, per se, and more for the evening's message.

Suzie Smith, president of the Utah Down Syndrome Foundation, is a member of The Church of Jesus Christ of Latter-day Saints. As her 9-year-old daughter, Lily, who has Down syndrome, cozied up for cuddles when she wasn't climbing around the pews, Smith explained that the lesson of the evening - one that reminded us to focus on what people can do vs. what they can't do - is universal, one that crosses all faith lines.

It was an experience that moved Angelica Robles of West Valley City to tears. As her 16-year-old daughter, Franceli, who is deaf, and two others signed after Mass their enthusiasm about the service, exclaiming - with the help of an interpreter - "Wow" and calling the evening "beautiful" and "full of spirit," Robles stood by, her eyes welled with gratitude.

"I feel good that they would do this for us, for our special families," she said.

The goal of this special Mass, one that commission members hope to host annually, was, in part, to highlight the importance of "making it possible for people with disabilities to feel welcome within the church," said Debbie Adams, who serves on the commission.

The desire to feel welcome is something the Bonn family can relate to, said Scotty's dad, Bill. "A lot of times, we feel left out." he said during a reception after the service. "And it hurts to be left out of something."

But the Farmington family, which attends St. Olaf Parish in Bountiful, has made inroads when it comes to church. Scotty "was the first altar server at the parish to have a noticeable disability," the proud father said. "I think the parish is stronger because of it."

Jessica Ravitz writes about religion and spirituality. Contact her at jravitz@sltrib.com or 801-257-8776.

Just Sitting in a Box of Rice

2008-10-28T18:34:00.002-06:00

This was something we used to help Lily with sitting and sensory issues. We would hide toys in the rice and she would have to find them.