Monday, December 29, 2008

Beautiful Print

We were given this card -

Click here and here to see the whole picture.

CHRISTMAS BREAK

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.

Wednesday, December 10, 2008

GOOD TIDINGS OF GREAT JOY



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


5 Minutes for Special Needs

Wordless Wednesday

Monday, December 8, 2008

This kind of stuff gets me boiling!

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!

Friday, December 5, 2008

STUFF

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!!!

Friday, November 14, 2008

Thanksgiving 2005

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!

Thursday, November 13, 2008

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

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!

Monday, November 10, 2008

Bonneville - Part Two

Bonneville - Part One

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




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.

Friday, October 31, 2008

HAPPY HALLOWEEN!

Wednesday, October 29, 2008

GET IT DOWN - DAY 29

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.

Tuesday, October 28, 2008

Just Sitting in a Box of Rice


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.

Monday, October 27, 2008

GET IT DOWN - DAY 28

I've been tagged by Kim at Blessed With Girls I'm suppose to share six things you might not know about me. Mom's going to do it too. Her answers will be in a different color.

1. I eat mac and cheese. Moms eats everything.

2. I like putting puzzles together. Mom likes word searches.

3. White ice cream is my favorite. Mom - yes ice cream.

4. I like my stomach. Mom does not like her stomach!

5. I play with my dog. Mom cleans up after the dog.

6. I do like my bird. I love Calvin my cat. I like my animals. I like George, George is my favorite kitty, he likes me a lot. Mom thinks we have too many animals, oops forgot to feed the fish!

We are tagging The Hulets, My Cool Family, Wendy and Jerry Strebel, K&K, Areian & Anthony, and Riley's Gift. Have fun, we look forward to learning more about you!

Sunday, October 26, 2008

GET IT DOWN - DAY 23 - 26

Well I gave the "Get it Down" a good effort, but family emergencies come before blogging. My family needs me more than ever right now, so I will try and get to Lily's blog when I can. Lily received an award and was tagged while we were away so I will deal with those now.

Tracey from 4 My 3 Suns gave Lily an award.
I looked up proximidade and it means "neighborhood" so I will pass this on to my neighborhood of bloggers who have someone in their life with Down syndrome. If you receive this award you need to post the following:
Post the following message on your blog:

These blogs are exceedingly charming. These kind bloggers aim to find and be friends. They are not interested in prizes or self-aggrandizement. Our hope is that when the ribbons of these prizes are cut, even more friendships are propagated.

Please give more attention to these writers!

Deliver this award to eight bloggers who must choose eight more and include this cleverly-written text into the body of their award.
Because I want to bring attention to the fact that October is Down Syndrome Awareness Month, I am nominating all Blogs that love someone with Down Syndrome.
Please visit their blogs. Each person has a unique life just as we "typical" folks do.
Enjoy...
Nominees are:

K&K - Enjoy the Journey

The Armantrout Family Blog

Life and Times with Staci and Jethro

Ryley's Gift

My Cool Family

Justin and Karen Gundry

Joe Miller "Pete"

The Seal Bark

Wednesday, October 22, 2008

GET IT DOWN - DAY 22 & Photo Day

1st time Lily was fed with a bottle at 2-1/2 months

Lily's first time at church - notice the matching outfits!

To An Adopted

Carolyn Lynn Pearson

I
Did not plant you,
True,
But when
The season is done -
When the alternate
Prayers to sun
And rain
Are counted -
When the pain
Of weeding
And the pride
Of watching
Are through -

Then
I will hold you
High,
A shining sheaf
Above the thousand
Seeds grown wild.
Not my planting,
But by heaven
My harvest -
My own child.


5 Minutes for Special Needs

Wordless Wednesday

Tuesday, October 21, 2008

GET IT DOWN - DAY 21

This is the thank you that Tim wrote to mommy Alsion...

Monday, October 20, 2008

Leaf needs your help!



Leaf is a family member. His Grandpa Ray and my dad, Jeff, are cousins. He needs lots of prayers and well wishes.

GET IT DOWN - DAY 20

This is the thank you that Kenny wrote to mommy Alison...

Sunday, October 19, 2008

GET IT DOWN - DAY 19

This is a poem that Henry, at 13 years old, wrote to mommy Alison - thanking her for Lily...

Lily was sent from you to me,
A glorious gift as anyone can see.
someone I will always treasure,
I will give her love beyond measure.

As the first few years may be tough,
We'll overcome it, sure enough.
With stinky diapers and her first few words
She'll look so cute with clothes and Big Birds.

So, thank you for my new little Sis,
A brand new sister to hug and kiss.
I know I'll love her to the end,
thank you for my new best friend.

Saturday, October 18, 2008

GET IT DOWN - DAY 18

This is Khai

This morning we went to a race. There were lots of people there. I played. I handed out prizes to the winners. It was fun. Mom and I are going to be in the race next year. Khai is a little bit cute, not a lot, maybe a couple. Skyler is still my favorite boy. I'm done!

(note from Lily's mom - this morning Lily and I went to the 1st Annual Fitness with a Cause 5K Race. Marcum and Lorian Bouche' organized this race in honor of their son, Khai, and Down Syndrome Awareness Month. It was a great event!)

Friday, October 17, 2008

GET IT DOWN - DAY 17

Being state president of the UDSF Lily and I get to do some really nice things. The Diocesan Commission for People with Disabilities invited the UDSF to send a representative to a special Mass celebrating the many gifts and contributions made by people with disabilities.
It was a lovely evening and an honor to attend.

Thursday, October 16, 2008

GET IT DOWN - DAY 16

I have been going through Lily's baby albums.
I have only looked through October to December, but I have found something interesting...




Jeff and Lily have this wonderful bond (even when they are awake!). It is so fun to watch them in action.

Wednesday, October 15, 2008

HENRY



Today is a very special day at our house. Henry turned 22 today. He is our oldest son, a graphic design major in college, an amazing artist, an all around nice guy, a great son, and a fun brother.

Something special happened back in October 1999. We were suppose to bring Lily home and of course told everyone. Well we were shattered when we found out that Lily had an infection and wouldn't be coming home. So the next go round we didn't tell anyone. It turned out that they released Lily on the day of Henry's birthday party! We had planned it for a while and invited several young teenage boys over. The party would not be cancelled. So when Henry came home with all these boys they were greeted by large signs and balloons in the yard saying "Happy Birthday Henry!" and "Lily's Home!" Henry was thrilled.

James wants to go to Kindergarten

Tuesday, October 14, 2008

THE BOOK IS HERE!

A new book arrived at my house today! Windows into Heaven - Stories Celebrating Down Syndrome by Stacy and Michelle Tetschner.


“Windows Into Heaven is a collection of stories
of inspiration, love, and acceptance
from those families and individuals
who have been positively touched
by Down Syndrome.”

The story of Lily's adoption is in there! Plus a lot of stories from bloggers that I follow!

GET IT DOWN - DAY 14







Lily used to ride horses. I would love to get her into it again. It was just so far away! She loved it.

Monday, October 13, 2008

GET IT DOWN - DAY 13

In fourteen hundred ninety-two Columbus sailed the ocean blue.


I learned in school today. I learned math. I did reading. We went to recess. We ate lunch, but I didn't eat. Mom - why? Because I wanted to hang out with my friends. Mom- Lily did you eat lunch? Yes I did. Mom- So what did you eat? Hotdog, salad and dressing, apple and a cookie. We made a ship. Columbus is cool. We read books about him, we watched a movie. I got all green on my home note. That's it.


Photobucket

Sunday, October 12, 2008

GET IT DOWN - DAY 12

Lily and Dad

It's Sunday and I'm reading lots of blogs of what people are grateful for. So I will write why I am grateful for Down syndrome.

1. Ds has opened my world to learning.
2. Ds has opened my world to acceptance.
3. Ds has opened my world to patience.
4. Ds has opened my world to new friends.
5. Ds has opened my world to exploring.
6. Ds has opened my world to getting out of my box.
7. Ds has opened my world to understanding.
8. Ds has opened my world to trying just a little harder.
9. Ds has opened my world into pure joy.
10. If it weren't for Ds I wouldn't have Lily.

Saturday, October 11, 2008

GET IT DOWN - DAY 11

4th of July neighborhood parade - 2006

Okay 10 more days of posting everyday! What to write... It's rainy and cold here with a chance of snow so I will post a summer picture I came across that made me smile.

I love my daughter and the way her creative mind works.

Friday, October 10, 2008

GET IT DOWN - DAY 10

Lily on her baptism day with Grandpa Pat & Dad

I have found this amazing place that I love to take Lily, it is her Special Needs Primary. She goes every Tuesday. The spirit in that room is amazing. It is so relaxing to me. I sit in the back of the room and watch these beautiful individuals, with all different disabilities, ranging in age from 8 on up and I just soak up their goodness. Of course Lily doesn't want me to be there, it is her time, so I try to stay for just opening exercises. Just to fill my cup a little.

Thursday, October 9, 2008

GET IT DOWN - DAY 9

More self portraits!


Lily is not feeling well today. This is one of the harder things I deal with. You see Lily was born without her esophagus, so they took part of her colon and made her an esophagus. When they did that they give her a nissen (which is a tight ring at the top part of the stomach that doesn't allow stomach acid to come back up into her man-made esophagus and destroy it).

The problem is that when she needs to throw up she can't, it hurts her and there is nothing I can do to help her!

I have been posting everyday on the UDSF blog. Peek at that for some extra reading.

Exciting news we got an email from Dan at Disability TV ( they did Lily's T.V. interview) and they are in the final stages of editing! I think it would be great if they got it done for Down Syndrome Awareness Month!

Wednesday, October 8, 2008

GET IT DOWN - DAY 8 PHOTO DAY & LILYISMS

Sunday morning Jeff was in the kitchen making breakfast and cleaning up. He grabbed the garbage and headed outside with it. He yelled at Lily to put a new liner in the trash can. Lily who was dressed as Hannah Montana at the time responded to Jeff by saying "Hannah doesn't do that" Jeff responded back by saying "Well Hannah better talk to Lily!"



Oh, the golf club. Lily has decided to take up golf. She has been hitting golf balls in our front yard. I will keep you posted as to how long it takes to break out someones window.

P.S. I put the liner in the trash can.

5 Minutes for Special Needs

WORDLESS WEDNESDAY