Tuesday, June 30, 2009

LILYISMS - SEE I TOLD YOU!

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.

Monday, June 29, 2009

INDIANS AND CAMPERS









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!

Sunday, June 28, 2009

I WAS A PRINCESS!

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!

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.

Thursday, June 25, 2009

I'M DEVASTATED!

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.

Wednesday, June 24, 2009

DAWN

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!


Tuesday, June 23, 2009

PICTURE DAY - FASHION IN THE WORLD OF DOWN SYNDROME

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...

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!









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.

Saturday, June 20, 2009

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

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.

Friday, June 19, 2009

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

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....

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

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!

Thursday, June 11, 2009

WORKING ON MY BIRTHDAY SURPRISE!


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!

Wednesday, June 10, 2009

PICTURE DAY - HELLO SISTER, HELLO BROTHER



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.

Tuesday, June 9, 2009

THE 5TH DAY JESUS PUT FISH IN THE WATER








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.

Monday, June 8, 2009

LILYISMS - WHOSE JOB IS IT ANYWAY!


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!"

Friday, June 5, 2009

LAST DAY OF SCHOOL!




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!
1

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Wednesday, June 3, 2009

IT'S BEEN GOOD!

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.