Our Lonnng Valentine's Day

We had a really fun, though long, day today, and I wanted to write it down so that I can have it when I turn this blog into a book. The day started for me at 3:30 AM, when I woke up to check on Lance. I then tossed and turned until 4:30, when he woke up to eat. And then tossed and turned again until 5:30, when I got up and left to register Lily for preschool. Apparently last year their were lots of people there, so the reccomendation was to get there early! It's not that I feel like she HAS to go to preschool next year, but it's a great price and would be fun for her and nice for me. I got there at 5:45 and was first there, so I left and got some bagels to keep me company, and then went running about 8 miles, to pass the time. When I got back it was about 8:00, and then Robby brought the kids by on his way to work. So we waited together and ate bagels until 9:00, when I could go in and register. The 3 year old class was already full (from kids who are already in the 2 year old class, and parish members), but we're first on the waiting list!
So then we went and got some food at Sun Harvest-their produce is SO much better than HEB. Along with some steaks to grill for dinner and flowers for Lily. We had fun this afternoon hanging out, and then Lily took a 2 hour nap! I'm pretty sure it was because she got to wear her monkey pajamas (thanks, Terrie). I took a little nap, and was woken up by my visiting teacher dropping off chocolate! That's the best way to wake up from a nap! Then after piano lessons I made chocolate covered strawberries-just dark and semi-sweet chocolate chips, melted, but it was VERY tasty.
Robby surprised me with a dozen beautiful roses. He's also taking us to West Side Story on Broadway. And got some chocolate fudge from Costco. I went to Coscto on Saturday and then sent him back to buy some for me!
We gave Lily and Lance their presents. Robby made Lily a Valentine's card, which she was very excited about and put on her door. I got her a dress and the DVD Beauty and the Beast- She was much more excited when she thought it was a book!

The funniest part was tonight when we had family night. We talked about love and being kind, and then she wanted me to play Head, Shoulders, Knees, and Toes on the piano. So I did, and then at the end she did a perfect summersalt! I don't know how many times I played it so that she could do the actions and then do a summersalt at the end. We were laughing pretty hard. And then she took all my piano books out of the piano bench and got her baby and put her baby to bed. By putting her in the BLACK piano bench and shutting the lid. If you use your imagination just a little bit you can imagine what it looked like she was putting her baby in! We got it on the video camera-it felt much more like Halloween than Valentine's Day. Seriously a little morbid. But of course she was clueless. She calls Lance "Baby Lancey." We think that's what our friends must call him, because we've never called him that! She sure makes us laugh.

Deak's Run for Hope

This is my little guy Deakon. Deakon is an amazing boy (as you can tell by that smile!) who happens to have Ring 18, like my little Emily. He and his family live in Davis County, Utah and his mom is putting on a 5K (3 mile) race in Deakon's name, where all the procedes will go to the Chromosome 18 Registry and Research Society. And I don't know if everyone knows, but the headquarters, the only Chromosome 18 Research Society in the world, just happens to be here in San Antonio, TX! It was what brought us to Texas-when Robby was offered a job my sister reminded us that the Registry was here, and that was enough for us to say yes! They are the only center that conducts research for the Chromosome 18 (other than Trisomy 18) So, I'm writing this post to encourage EVERYBODY to click here http://deaksrunforhope.blogspot.com/ and read more about Deakon and the 5K race they are doing over Deak's 5th birthday. If you live in Utah, go run this race for Deakon and Emily! And if you like to run, but don't live in Utah, you can be a Spirit Runner http://deaksrunforhope.blogspot.com/2011/01/spirit-runners.html Which is what I am doing. And if you don't live in Utah, and don't like to run, but would like to donate to the Chromosome 18 Registry and Research Society, click here https://www.chromosome18.org/Support/MakeaDonation/tabid/150/Default.aspx
This picture was taken last March, when we went to Utah for my grandpa's funeral. It was so fun having Lily and Deakon meet!

This was July 2008, 6 months before Em passed away, at the Chromsome 18 conference here in San Antonio. We brought Lily to meet the other kids there with Ring 18, and she was so alert, awake and happy. It was like she was meeting her best friends for the first time!

Lily.

Lily is just sometimes more energy than I can handle. At least patiently handle. She has had a few adventures the past few days that I just have to laugh at. I need to write them down so that I can have them when we turn this blog into a book again-I was really happy with how it turned out last time. So, back to the adventures. We'll start with church.

We've been potty training Lily, so we tend to have to leave sacrament meeting a few times to go to the bathroom. We've also been sitting in the back of the chapel because though we get to church on time, it's not before everyone else gets there and saves benches for their families. So last Sunday when we were coming back in from the bathroom Lily ran in front of me, and I thought she was just grabbing her Elmo toy she had dropped. Oh no. She saw her little friend up front and took off running. Clear up to the front row. Luckily she stopped there, and I didn't have to chase her unto the stand. We went outside and had timeout after that. Then today there was a little girl sitting behind us, and so through the whole meeting Lily kept yelling "MINE!" Though the little girl was not even trying to touch Lily's things. "Mine," and "I do it!" are her two favorite things to say.

Next, potty training. So, a few weeks ago I decided to potty train Lily. We spent an hour in the bathroom drinking juice and singing songs until she went, and then the next few days stayed home doing pretty much nothing but going potty and getting stickers and M&M's. She's now doing really well.

However...#2 is a different story. We're running a 30% success rate I would say at making it to the toilet. That 70% is NOT FUN! Especially 2 nights ago when she decided to "clean it herself." I was feeding Lance and realized Lily wasn't in the play room. But I could smell something! I went into the bathroom and she had taken off her pants and underware, making a mess on the floor, toilet, cabinets, shoes, etc. in the process. So we had a talk about getting Mommy when we have an accident, not "doing it herself." My friend suggested throwing away the underware when it happens, but when we tried that tonight Lily didn't seem to care.

Last night Lily woke up at about 5:30 saying she wanted a quesadilla. Seriously. I told her I'd get her milk instead. And then she wanted the milk, "Nice and warm," so I had to warm up her milk.

About a week ago Lily tried to drink cinnamon and sugar that we had in bowl. It got in her eye and really irritated it. So now if you tell her to stop doing something, or if she gets hurt, she's tell you "I got cinnamon in my eye." It's pretty funny.

We've been trying to read scriptures as a family before Lily goes to bed. Just the Book of Mormon stories with the pictures. Lily would not sit still, so last Sunday I told her her Elmo blanket was her scripture blanket, and we'd get it to read scriptures and cuddle on the couch. I was so proud of myself for thinking of this, and then she lost the blanket on Wednesday. We looked and looked and looked for it. Our house doesn't have too many hiding places. Then yesterday I was trying to find a cookie cutter and looked under her kitchen in the cuboard, and there it was. I thought I had looked there, but I guess it was the one place I missed. She was so excited.

Her favorite toy these days is a box that had her carseat. I showed her how its a house and she can play in it, and she loves it. She'll get in it and then say, "Come in, come in, " until you come in with her.

My favorite thing that Lily's done lately happened this morning before church. Lily figured out how to get water out of the fridge door. And our water dispencer doesn't have a lock on it. So I was making dinner before church, Robby was out home teaching, and Lily was filling up her cup with water from the fridge and then dumping it in the sink. I decided, after I'd told her once to stop, to just ignore her since she wasn't making a mess and see if she could just get it out of her system. After a few minutes of her doing this, I turned around to see the cup was somehow stuck in the water dispencer, pushing on the water button. Lily pulled on the cup, and a waterfall sprayed her in the face. The water had somehow got backed up and came rushing out, and so she was soaked. Her hair, face, and shirt were drenched. And she was crying, "I got water in my eyes!" I was laughing so hard I couldn't talk to her for a minute. I told her that's what happens when she does it herself instead of having mommy help her. We'll see if it did any good, but I sure got a good laugh out of it. Am I awful?

Lance is my little angel kid. Lily was too at this age though. Super easy, though he it totally against bottles, and just plays with sippy cups. He likes his mommy! He's nine months old, and Robby and I would really like to be able to go someplace for a night or two in May without the kids, so he needs to be done by then. I'm glad he's at least a healthy kid!

Robby's Poem-Emily's Experience on Earth

This is the poem Robby wrote that he shared at Emily's funeral. I try to post it on her anniversary of her death. Last year I made it into a book with pictures and we read it as a family today. Lily actually sat and looked at all the pictures and listened. Robby told her that Emily had lots of owies in the picture of her after heart surgery, and in looking at the book afterward Lily told me that "they were mean," (because Emily had owies-someone had to have been mean!) and leaned her cheek against the picture to give Emily a hug.

Emily’s Experience on Earth

Before I was born and I still lived in Heaven,
Heavenly Father explained how life would be.
He said that it would be full of challenges and trials,
But that I would have a family who loves me.

I would have friends and loved ones who would do all that they could,
To make sure I was joyful and happy.
And when I asked him what my purpose on earth would be,
He smiled, with a tear in his eye, and simply said “You’ll see.”

My life on earth had a difficult start,
I could no longer see nor hear.
But it didn’t take long to understand,
That my parents loved me so dear.

They stayed at the hospital for the first seven weeks,
And had faith that I could breathe on my own.
And eventually the wonderful day came,
They were able to take me home.

I made so many friends along the way,
I was able to learn so many things.
And although I had my share of pain and struggles,
I felt the joy and the love that the Gospel brings.

I have a Mother, who sacrificed everything she could,
Who did her best to keep me healthy and strong.
I have a Father, who provided me safety and peace,
Who’s whistling and roaring helped me as my life moved along.

I have a Sister, who loves and cares for me,
Even though she liked to pull my hair.
Who when the time came for me to die in their arms,
Gave my parents peace with her happy stare.

I have grandparents, aunts, uncles, and cousins,
Who always treated me as one of their own.
I have classmates, friends, and fellow 18th Chromosome family,
Who reminded me that I’m never alone.

Through all of my challenges and obstacles overcome,
I began to realize my mission.
There would be so many people whose lives I could touch,
Even without hearing and vision.

And now I can tell them at the end of my earthly life,
That God has a plan for everyone.
That because of the sacrifice of his Son, Jesus Christ,
We can return to him in glory and perfection.

Now I can run, and see, and hear,
I can talk, and help, and serve.
I can help others know that the Gospel of Christ,
Will lead them to the happiness they deserve.

As a final request to all who know me,
As we part, at least for a while:
That when they think of Emily Hammond,
They share with me a laugh and a smile.

Emily's Sunbeam Class!

My friend sent us these pictures today, and I'd never seen them! It was a perfect thing to see on the 2 year anniversary of Em passing away. This was Emily's Sunbeam class. She had 8 boys (one's missing) and 2 girls in it-her and Nellie, who's not in this picture. Robby and I were their teachers. It was a tough crowd-8 three year olds! But we loved those kids. Emily went to a little preschool co-op twice a week. She had her own preschool, so she and I would try to go for the last hour, after her regular preschool class. You can see her sucking her thumb in this picture.

I just love all these kids. This pic was in May, 2008. Alice and Nellie still talk about Emily, and little Cael, who's next to Em, would look after Em-he'd push her in her wheelchair and help her talk in Sunbeams, and in September they were in the same preschool class, and he'd push her to class each day. It has always done my heart good to know she had so many friends! Their parents were all great about helping them accept little Emily.

Emily's Favorites

Em rolling when she was 3, August 2007 Rolling when she was 4-September 2008.

Swimming with Dad. July 2008 age 4

Dad roaring and whistling at Emily.

More rolling, January 2008 3 1/2.

Tomorrow will be 2 years from when Emily passed away. I'll repost Robby's poem probably tomorrow, but instead of dwelling on sad stuff I thought I'd post Emily's favorite's. I went through her box of "stuff" today which made me remember some fun things. Like her potty charts of when she would go potty. And her hearing aid, her Redland Raccoon, the fuzzy blanket she slept with, etc. So here's some of Em's favorites. We'll start with food, because food was a big part of her life, even after she got a feeding tube, and a lot of my life was spent feeding her!

Favorite Breakfast Food: Eggs-she LOVED eggs for breakfast, and for a bit I think was getting so she could even sign eggs. She would eat them with ketchup, and then when we put her on a low-carb diet for her seizures she ate them with salsa. This is what she had pretty much every morning.

Favorite Snack: bananas and peanut butter. She got this one a lot,too. We were always trying to find ways to put more weight on her. She would make a huge mess when she would sign finished and wipe peanut butter all over her face.

Favorite Dinner: Sweet and sour meatballs. I'd grind it up in the baby food grinder and she quite Favorite Dessert: It's a tossup between cupcakes and snickerdoodles. At my brother John's wedding when she was 3 she ate 2 cupcakes and would sign more. She LOVED snickerdoodles.

Favorite Drink: Milk. She didn't drink much else. Juice was almost too thin for her-she'd choke on it. She wasn't a huge fan of Daddy's Dr. Pepper, either.

Favorite Person: Her daddy. She loved Robby. She loved me, too, and Lily, but not in the same way. She was a big time Daddy's Girl. She would sign for him or say Da if I was giving her a bath or making her do therapy. In the middle of the night if she woke up crying she'd want him. She'd cry and cry until Robby came and rocked her. He could rock her back to sleep when I couldn't. From when she was a few months old Robby would do this thing where he'd roar and whistle at her when he'd get home and say, "Emily, it's Dad." He started doing it because we didn't know how much she could hear, but her eyes would get all big when he'd do it, even at 3 months old. She loved it! Before she passed away she got so she would laugh when he'd do it. And a few times over the course of her life she'd roar back it him.

She did like eating for me :) I was always the person who could get her to drink her bottle when she was a baby, and then to eat regular food later.

Favorite Activity: Rolling! Emily LOVED to move and roll. She would roll from side to side and kick her legs super fast. When she was eighteen months she learned to roll over and would roll across the room until she hit something and got herself turned around. And then she'd roll back. When she was 3 1/2 she got so she would roll and get up on her knees and rock back and forth. Her head control was always the best if she was walking (with help) or bouncing on a ball or something. She just loved movement.

Favorite Toy: This was tricky-she didn't respond to too many toys. She did have switch button though that had Robby roaring and me talking to her, and she would hit it over and over again.

Favorite Animal: Dogs. She always responded to dogs. And had no fear, just like her little sister. I remember when she was in vision school a seeing eye dog coming and she would just hold still and touch it. One of her favorite babysitters, Cindy, has a dog and Emily would roll around on the floor while he'd play with her. We always talked about someday getting her a dog or a cat. She liked cats, too.

Favorite Texas Place: Six Flags: Fiesta Texas. The summer she turned 3 she and I had season passes there, and it was great-we could get her a disability bracelet every time we went, and with the bracelet she was able to go on all the rides that kids her size who could walk could go on. She went on the carousel, swings, ferris wheel, scooby doo ride, tea cups, train, cars. It was so fun for me to have her participating in such "normal" activities. Sometimes she was pretty sleepy through them-she didn't really like the bright lights outside. But she did pretty well.

Favorite Texas Activity: Swimming. We swam a lot. That's about all you can do in Texas in the summer. It always seemed to relax her, and she always had a great tan! (Her mom DOES NOT tan)

Favorite Song: Called To Serve. She liked other songs, too, like I am a Child of God, but if I played Called to Serve, or if we sang it in church, she would get super excited and kick her legs and move her arms. It was always fun to see! She loved music in general, and would roll around while I played the piano and taught piano lessons. I'll add more to this list as I think of things.

Favorite Sign: Finished. She learned how to sign lots of words, especially since she was blind and partially deaf (she heard pretty well with her hearing aid-the white band in all the pictures). She learned food, milk, more, finished, hearing aid, mom, dad, eggs. But the one she did the most consistantly was Finished. She'd sign it by swiping by her eye with her right hand. But it was definitly Finished. She'd do it if she didn't want to eat something, if she was done eating, if she didn't want to be in the car, if she wanted out of her stander or was done with therapy, or after surgery when she was not happy and just done!

Potty Training Emily (Yes, Emily!)

Emily with her vision teacher, Wendy Drezek, on the last day of school.

Today marked the start of potty training Lily. Officially. We've tried sitting on the toilet before, but today I was determined. She sat on it for an hour while we sang songs before she went, but since then she's gone 3 other times. We also had 3 accidents. But hopefully we're on our way. It's brought back a lot of memories of potty training Emily. Yes, Emily. I don't know how many people knew that she was actually very good at going on the potty, especially from ages 2 1/2-3 1/2. My dad asked me tonight if I'd ever written about it and I said no, and he said I should for other families to know it's possible.

Just before Emily turned 2 she started going to a vision "school" class twice a week. The class had kids ages eighteen months to 3 years old who had vision loss. They ranged from kids who just had vision loss to kids with cerbral palsy with cortical vision loss to kids like Emily who had multiple issues going on at once. Wendy Drezek, the teacher, is AMAZING, and has been teaching for years and years (she could retire but hasn't yet because she loves it). One of the things they would do is every day they would put all the kids (5-7 kids) on the potty. They had a little potty for each kid and they'd hold them from behind and sing a potty song. When I first saw it I really thought they (Wendy and the aides) were crazy.

"There's no way these kids can go on the potty!"I thought.

Not only were they all visually impaired, but most have other developmental and mental challenges, too. Wendy said that they could and do learn. When Emily had been going to the class 3 days a week for few months, after she turned two, I noticed Emily would wake up in the morning with a dry diaper. And shortly after that, I think it was around Febuary or March, when Em was 2 1/2, Wendy told me she'd gone on the potty during class. I was shocked! She was very consistent and by the end of the year would go almost every day on the potty. She was the best in the class! One time she was being evaluated for pre-k and Wendy said she was super fussy, and kept saying "Hold on Emily, we'll go potty in a minute." And then when she got her on the potty she pooped and peed like crazy. Wendy said it was the biggest mess to clean up but she was so proud of Emily for showing off for the evaluation!

We got a potty for the house and Emily got so she would go 3-4 times a day. If she didn't go it was my fault for forgetting to put her on. I would sit on the ground and hold her from behind while she'd go. And then afterwards I'd say, "Good job, Emily!" And she'd get so excited and smile and start talking (Emily talk). We had the most success the summer of Emily's 3rd birthday. She still went to school, but it was with Ms. Rebecca, who was also her vision therapist at home (she taught for Wendy for summer school). She would go to the potty at school, and then at home, too. She'd even go in the middle of the night when she'd wake up. I was always so proud of her. I still have the charts where I kept track of when she'd go. She would also go for my friend Jessica. She'd also go sometimes when therapists were over at our house. I was always so proud every time she would go, I just can't even say how much. She'd go both #1 and #2. When she started pre-K I don't think they quite believed that she would go on the potty, and they also didn't have the time to devote to waiting to hold her on it (more kids, less aides), so she wasn't quite as successful after that. But she'd still go for me at home.

I think Lily is smart for figuring it out, but I also expect her to. I will always be grateful for a teacher who expected things out of Emily that I (who really tried to have high expectations for her) never thought possible!