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Welcome to Lily's Journal 
www.thelilyfoundation.org"Say that blessings come because we let them..." - Karen Harryman Leo in a spider hat that Lily made in school last year...or as Leo would say, "SPIDEN!"“Nothing worth doing is completed in our lifetime; therefore we must be saved by hope. Nothing true or beautiful makes complete sense in any immediate context of history; therefore we must be saved by faith. Nothing we do, however virtuous, can be accomplished alone; therefore, we are saved by love.” - Reinhold Niebuhr "Consider it joy my brothers whenever you face trials of many kinds because you know the testing of your faith, develops perserverance." James 1:2-4
 "Not all of us are here to be saints in the eyes of a religious authority, but we are all saintly in that we have the God force within us. our bodies are nothing more than the curriculum that we are taking to reach God. If your body cannot see or hear, or is missing a limb, or immobilized, this is not an indication that your life mission is canceled.You can do your work from a wheelchair as well as a pulpit...from a bed in a quiet room or from behind a piano..." - Wayne Dyer, A Promise is a Promise. On Facebook and MySpace? Join the group "Newborn Screening Awareness" and these pages on MySpace:
http://www.myspace.com/savebabiesthruscreening
http://www.myspace.com/thelilyfoundationCOLORADO RESIDENTS PLEASE READ!
Vote Yes on Amendment 51!www.endcoloradowaitlist.org
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Assist in Helping Children and Adults with Developmental Disabilities - end their long wait for resources that are much needed!
Journal
Saturday, October 11, 2008 9:00 AM MST I have some more cute stories to share...
On Friday, Leo and I went to Lily's school for their scholastic book fair. He was so cute - he really loves books so he wanted me to get quite a few of them. We picked out one about Trains, one called "Hug" and a few others. Lily wanted "Giraffes Can't Dance" but they didn't have it, so I ordered it for later. There was a woman working in the book fair who kept looking at Leo and smiling. When we went to buy our books, she said
"I could listen to him talk all day! I love voices at that age."
I said thank you and smiled, and Leo came over to me, being a little shy. She found one book that I had purchased for Lily's classroom (they have slips in an area that states the classes and what books parents can donate if they'd like).
She said "You have a child in Mrs. Micheners class? Who is it?" and I replied, "Lily."
Her reaction was so sweet, I'll never forget it. She said "Oh really?! Lily's YOURS?!"
I smiled, quite big.
She told me who her daughter was and I apologized, stating that I didn't know all the kids in the class yet but I would because I hoped to volunteer there soon.
She said, "Well I don't know all the kids either, but EVERYONE knows Lily!"
Can I tell you how good that makes me feel? Words cannot do justice to that joy. Lily is a little different, yes...But, most everyone sees that in a good way - a good difference. Even kids! Oh, I love that. I really do.
That morning I got Lily on the bus, and her bus driver and aide were dancing when they were getting her wheelchair strapped in. Guess what they were dancing too? Rock music! (Not innappropriate rock :))
Her aide said, "I'm a rockin' Grandma and I always wanted to be one!"
Now I know why Lily squeals, smiles and laughs when she gets on the bus. She gets to listen to fun music, and see some "Grandma's" dance, and I don't even have to get them to do it!!! LOL.
Leo has been saying super cute things lately that have added to the fun of the day. My friend Renee was over for lunch on Thursday, and we were praying (reminding Leo to say his blessing - he loves to do it). So, we had our eyes closed and our heads bent with our hands together, and halfway through the prayer, Leo yells "Wake up guys!" LOL.
There's a list of funny things from him...I'll have to write them out and share more.
Love and hugs, have a good weekend!
Sarah
Thursday, October 9, 2008 9:55 AM MST
Sorry for the delay on journaling. I was at a really cool training in Denver on Monday and Tuesday, that will help with Lily's communication a WHOLE LOT. I'll let you know more about it as Lily's Grandma and I begin to implement it.
Just a few fun things to share. On Saturday, I asked Leo to say goodbye to Lily before he left for his Dad's house. His Dad and I watched Leo walk over to Lily in her recliner, and we started to talk. We heard him kiss her cheeck, and then he surprised us! He said "Bye Lily, I Love You." My mouth dropped open and I smiled. He had never said that to anyone out of his own initiative. Sure we've asked him how he says it - but this was the first time I'd heard him say it on his own, with understanding of what it meant. Lily looked at him and gave him a great big smile. It was a moment I won't ever forget!
Also, Lily had school pictures on Thursday last week. I've been a bit hesitant about them this year because I didn't think last year's were all that great. Of course, Lily was cute...that wasn't of issue. The problem was that the photographer chose a shot where Lily's head was all the way back in her headrest and she was practically looking down to the camera. We got more of her neck in the pic than her eyes! LOL. So - I am a picky woman and didn't give the pics out to anyone, until recently (at Luis' request). This year, I asked Lily's ASP teacher to help out. She DID! She said that she started singing "Skid-a-ma-rink" to make Lily smile, and she made sure her straps weren't over her clothes, and that she was facing the camera. She had the camera guy take quite a few pictures just to be sure. The cute part about all this was, she said the entire fifth grade was waiting behind her as she sang to Lily. So - all the fifth graders decided to sing with her for Lily and I guess Lily had a BIG smile. LOL!! I love it. I got goosebumps.
In school, Lily is very loved. Her para, Laura, said that the kids love having turns doing different activities with Lily. When she drools, they reach in her backpack for a kleenex and they clean it themselves! They love to play with her on the playground, and will take turns jumping on a moveable bridge with her on the swingset, because Lily just laughs and laughs when they do it. Oh - I just love that these kids see her as a person - a kid like them. That does my heart so much good.
Yesterday, Luis and I were reading through Lily's commmunication notebook (for school and home) and in there, they wrote that the class played a game during music and they were all a train. We laughed when we read "And Lily was the engine!" I could picture her in the front of the class, with them all in a line behind her, and she was probably smiling ear to ear!
Life is good.
Sarah
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Links: http://www.elisangels.org Eli's Angels
http://www.hopeinone.org Hope In One
http://www.sarahgracehasga1.com Our new friend, Sarah (GA1)
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