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

Tuesday, October 7, 2008

Lilyisms - Don't Let Me Down

Okay, this is to good not too share. We are watching the presidential debates right now. The lady just got up and asked why should we trust either one of you, both parties are responsible for where we are at right now...
Out of the blue Lily starts belting out "Don't Let Me Down" by the Beatles. Don't tell me our kids aren't smart!!!!

GET IT DOWN - DAY 7 (School Assembly Stuff)


Today I am going to share my teaching tools that I have used with both grade school kids and high schoolers when talking about disabilities.
When Lily was in kindergarten I wrote a letter, explaining that it was Ds Awareness Month and it would be a great time to have a family discussion not only about Ds, but acceptance in general. It had the characteristics of someone with Ds and also what Lily went through, but it was done very simply. The letter was sent home to all the students. I can't find the letter right now, but if I do I will post it.
Then in 1st grade I was PTA president and I held a back to school assembly. I had all the children that could speak a different language open the assembly by saying hello in their native tongue,then I had picked out random students and asked them to fill out a sheet about themselves, i.e. favorite color, food, music, books, different language. I had all the students stand up and I told them if I said something that they didn't relate to or like to sit down, but to keep standing if it did relate to them or they liked what I was talking about. In the end the last person standing was the one I had read the list about and the students got to see what they all had in common with this person. Sometimes it got down to the name! Of course I had Lily and a young man with MD who was in a wheel chair be spotlighted so the kids could see that they liked the same things.
The mother of the 6th grader with MD had given me a folder with exercises in it for other children to realize what it is like to have low muscle tone. So in this assembly I had all the students stand on one leg while holding the other up with their hand and see how long they could just stand there. Of course some could do it for hours, but others including teachers and other faculty got the idea that Lily and this young man might have a harder time with coordination and doing certain things. I also had them hold there tongue tight while repeating the ABC,s. I told them that their tongue was also a muscle and that some people such as Lily might be hard to understand at times and this was part of the reason.
I always, always talk about People First Language. Lily is Lily first and always. She is 9 in the 4th grade, loves her family and animals, loves to dance, loves mac 'n cheese, chicken nuggets, french fries and a diet coke, she likes to read, play school, work on the computer, has been in a movie, and oh by the way she has Down syndrome.

Monday, October 6, 2008

GET IT DOWN - DAY 6

Elizabeth
Rose


I know the meaning of all my children's name and all of my children are named after family members. When I was able to actually bear children I thought if I ever had a girl I would name her after my two grandmothers (Elizabeth and Rose) whom I loved dearly, admired and respected very much. But, I had three sons, Henry, Kenneth, and Timothy. So much for my girl or so I thought.

Even though I could no longer bear children I knew there was one still missing. The wonderful, spiritual journey through adoption brought me my beautiful daughter. So it was easy I just had to decide if she would be Elizabeth Rose or Rosalia Elizabeth, but that name didn't fit this baby girl. One day I looked up the meaning of my name (Suzanne), it means Lily of the Valley. That was it, she was sent to me, she was mine, she was Lily. She had to have a middle name though, so again the toss up of which grandmother, but it was neither. Lily's birth mother had given us such a special gift in this little girl that the only thing that would work for a middle name was to give Lily her birth mommy's name, Alison.

Lily Alison is named after her two moms that love her more than words will ever be able to express.

Life With My Special Ks: TODAY'S THE DAY!!!!

Life With My Special Ks: TODAY'S THE DAY!!!!

Something has happened!

Something very exciting has happened over at Life with My special Ks Go check it out!

I have got to tell you how fun and amazing the blogging world has been. It is so much fun to read about all these neat people, find friends across the world that are sharing same experiences, and get new resources to help your local family and friends. Please keep posting your receipes!!!

Sunday, October 5, 2008

Win a bedroom set!

Hey I'm trying for this one! I saw the post on Rhett's blog, so then I went to 5 Minutes (which by the way I really enjoy) and now I have entered the contest! Besides I think my daughter needs a bedroom set with her name on it!

The photo is from this old blog.

GET IT DOWN - DAY 5

Lily just realized she was double jointed. She was trying to teach Tim!


Lily loves to work on the computer, so when our friends at Riley's Gift sent us a link to Starfall we were thrilled! This is a great interactive website for kids! I had to pull Lily away from the computer yesterday!

I was pulling Lily away from the computer yesterday so we could go see Beverly Hills Chihuahua. My mom and I were very surprised at now much we laughed and enjoyed it!

Saturday, October 4, 2008

GET IT DOWN - DAY 4

My dreams for Lily are simple. I want her to be happy, healthy, successful in what she wants to accomplish.


sorry for the quality, taken with a cell phone camera

Sklyer is nice. He likes me. I like him. (Do you like him to mama?) He's a goofy. He's a good date. We went to Noodles. I like Noodles. We ate Mac N Cheese. He likes it too. He does dance. I like to play with him. That's probably it.


Friday, October 3, 2008

Lilyisms - Guess what I caught Lily doing...

I went downstairs to dry my hair, finally at 2:00 in the afternoon and I walked upstairs to find this...

Making a shake!

She got out the blender, set it up, got my frozen yogurt that I make myself smoothies with in the morning, way to much milk and whipped it up! When I asked her what she thought she was doing she looked at me and said get the chocolate. Ha! We were out!

GET IT DOWN - DAY 3


I need to explain that knowing that we had to adopt a child with "special needs" was not that big a deal for us, even Jeff surprisingly. Mind you at that time the definition for "special needs" to the LDS Adoption Agency was any child over the age of one, bi-racial, sets of siblings from the same family, and then a whole gamut of disabilities, blind, deaf, all syndromes, HIV, learning disabilities, mental illness, all of it.
We were totally clueless, but we went through a sheet of paper checking the boxes of what we would and would not accept in our child.
I did no investigating except for going to my trusty pediatrician and asking his advice on what disability was the easiest to take care of. He said to stay away from adopting from certain countries because of the high risk of Fetal Alcohol syndrome and he said that Autism was hard to deal with, but you wouldn't know at birth if a child had it or not. That was the case with several of the disabilities listed; you wouldn't know if your child had these disabilities until after they were sometimes several years old. He said he had dealt with individuals with Ds before and out of all the disabilities he would choose to treat someone that had Ds. Sounded good to me!
I will say it again, I knew in my heart we would be getting a girl with Down syndrome. This still brings tears to my eyes!

Thursday, October 2, 2008

GET IT DOWN - DAY 2

Lily - day 2 of her great life!
Have you ever been stopped in your tracks and known that something or someone was missing? That's how it was with Lily. Jeff and I already had 4 children, Brittany (from Jeff's 1st marriage), Henry, Kenny, and Tim, but for me one was still missing. Jeff is ten years older, he thought I was crazy. I started having spiritual dreams of my child trying to get to me. It was a strange time because nothing like this had ever happened to me before. A few years after I had Tim I had to have a hysterectomy, so I was at a loss on how I was going to find this other child of mine.

Adoption, now there was an option. A long shot from Jeff's view. Okay, simple you just walk into some adoption agency right. No, not for me, I needed to do it the right way for me which was going through LDS Family Services. Big problem, Jeff and I had not gone through the LDS Temple and received our endowments; if you want to adopt through LDS Family Services you have to be endowed. Jeff and I were not on the same spiritual page at the time, so to get married for time and all eternity was, well not something that excited both of us at the same time.

So, here I was missing a child, having dreams that I know were Heaven sent and I was stuck. I didn't stay stuck for long though... I went through the Temple without my husband. I received my endowments without the man I loved. When I walked out of the Temple that day Jeff was there waiting. He promised me he would be there in a year. Having that promise from him we went forward. We were sealed with our sons on our wedding anniversary January 5, 1999.

Then the whirlwind started! We had an adoption seminar, just a few days later. We were told that since we had "normal" children we would have to adopt a child with special needs. No problem for me. Jeff was still leery of the whole situation but he kept moving forward with me.

Now here is where I stop! The rest of Lily's adoption story is going to be included in a book called "Windows into Heaven" by Stacy Tetschner. I will tell you this much I knew I was going to be sent a little girl with Down syndrome...

And the whirlwind, Lily was born July 27, 1999. No adoption that I know of through an agency has ever gone as fast as this one did.

Lily was meant to be.

Wednesday, October 1, 2008

GET IT DOWN - DAY 1 (also photo day)

Lily was in my heart long before she was ever born...


Her birth mother brought her to me...