Wednesday, March 30, 2011

Our Lake Wobegon

It's been a quiet week in Lake Wobegon. Oh wait, nope. Wrong story.

Chuck and I have been in and out of the hospital this week (out patient) undergoing various tests and procedures. I had a physical a couple weeks ago and the doctor found a lump on my thyroid. So today I'm doing an iodine scan. I went in this morning and took the iodine pill (still not glowing green though) and I'll go back this afternoon for the scan. Hoping and praying that it's nothing. That the lump is benign. Don't even want to think about the other option.

Chucks... just routine 'over 50' stuff.

Diana and I took Beth to Athletics on Saturday. She had such a bad attitude! Beth acted like she didn't want us there. Kept hiding her face. Wouldn't participate. Everyone walked, jogged around the track and Beth... meandered. So Diana and I went and sat in the van. Thinking that would encourage her to work harder and she did! Her attitude changed and she began pushing herself.

So we got back out of the van. We wanted to cheer her on and watch her practice. She did okay after that. We tried to pretend like we were ignoring her and she tried to pretend like we weren't watching her. Ahhh, can you feel the love?!

Beth is taking part in the youth choir dinner theatre this weekend. It's to help raise money for their ministry trip to London in 2012. (Not sure if she's going yet.) Because she's just joined (and they've been working on this for months) she just has a small part, helping to gather tickets one of the nights. The show takes place in the 20's. Yep, the 20's. Have you ever tried to find a dress and hat from the 20's?! We found a hat and plan to go out again tonight or tomorrow for an outfit. It'll be interesting. But, she's so excited about it! And you know how it is, when your kids are happy, you're happy!

Well, that's all the news from our Lake Wobegon, where the men are strong, the women are good looking and the children... all have a little something extra!

Sunday, March 27, 2011

Forever in Neverland

Beth is 26, Sharaya is 24 and Diana is 20. You may remember in the post Birth Order that in our family Beth is the oldest, but she's not the big sister. Sharaya became the big sister when she was four. The girls grew up with Down Syndrome, but it came into my life unexpectantly. I chose it, they did not.

The below post is from Sharaya's blog The Broken Anthem. It's from a siblings perspective that I didn't see as a parent. The book is very different from the Disney version and it's the book they're using for the comparison.

I never really thought about Beth knowing reality from fantasy. I started to write, 'she is only that way with TV' but where else is there really? Where fantasy and reality might become intertwined? Books, sure. But it is mainly TV. (We don't play video games. Just never really got into 'em.) And now that the girls have mentioned it, I'm not sure she does know the difference. I'll definitely be watching for that now. Every time I read it, I think of something else to write. I'll never look at Peter Pan the same way again!

I was at my parents' the other day and saw my sister, Diana's book lying around. She had been reading J.M. Barrie's Peter Pan. I picked it up and skimmed a few chapters, it's such a classic! I was talking to Diana about it a little later and she gave me quite the realization.

Beth is our Peter.

She's stuck in Neverland, where she never grows up. Where reality and pretend intertwine to the point of distortion. Diana and I play Wendy in this story where we are in the real world - we grow up and live our lives while still taking care of Peter as she continues her childhood. In J.M. Barrie's novel, Peter and the lost boys enjoy a hardy "make believe" meal where Peter actually feels full because he can't distinguish the difference between real and fantasy. It's just the same with Beth. For example, she feels the people on tv and in movies are real and involved in her life. She has the biggest crush on Nick Jonas and cries her eyes out whenever he kisses another girl on tv. It's kind of funny and cute, but at the same time, we get a little worried because we're not sure if she even knows it's all pretend and that there are scripts and lights and cameras. She's just stuck in the illusion.

So while our Peter is still chasing after fairies and swimming with the mermaids, Diana and I are getting married and traveling the world. The most difficult part is trying to explain to Peter why she's stuck in Neverland...forever.

Some people may envy the life of Peter. Never having to grow old and experience all the rough deals life throws at you, and yet, I know Peter is envious of us. For growing up can be the best adventure of all.

But no matter where we are in our lives, I'm extremely grateful that we can join Peter and reclaim our childhood again. That we can forget all the cares and worries of our world and go play indians and pirates. We have such a connection and bond with Peter that it only takes a couple steps (...and just a little bit of pixie dust).

"second star to the right and straight on till morning..."

Wednesday, March 23, 2011

A Tough Lesson

Beth gets paid three times a month, but she seems to be out of money a lot. She loves to buy CD's and DVD's and batteries and headbands and notebooks.... it's hard to get her to spend her money on things that last. Diana likes to take her to the zoo or the movies, but too often her money is already spent. We're working on this.

Last week the girls went shopping. Beth, Sharaya, Diana and Allison all spent the day at the mall. We told Beth how much she had to spend in order to have money left over for Sunday and Tuesday. (Church and bowling.) She didn't care. She spent her last little bit on lunch and later, a soda. Sharaya and Diana told her that she had only enough left for breakfast on Sunday (she likes to get a drink and a muffin at the coffee shop at church) OR to go bowling on Tuesday. She was gonna have to choose.

Sunday came and Beth came to our classroom with her drink and in her purse she had a Sprite and two small candy bars. (For later that afternoon.) She had already eaten a muffin.

"Beth you spent your money on breakfast today?"


"What do you mean, No?"

She pulled out her $10 bill.

"Beth how did you pay for that?"

"I dunno."

Diana tells me that she only gave the cashier $1 yet walked away with all this stuff!!

So we gathered it all up and back upstairs we went. When I spoke with the cashier she said someone in line behind Beth had paid for it. When I asked who, she said they wanted to remain anonymous. I understand the giving heart but this was one time I wished no one had paid.

I took Beth aside and told her that the Lord had provided this for her, but she was not going bowling on Tuesday. I said that she needed to choose between bowling and breakfast and she chose breakfast. It didn't matter how it was paid, she made her choice. I also told her that she wasn't in trouble, I was just trying to explain that she chose breakfast and breakfast was okay. Breakfast was a good choice. But she needed to remember that she chose that over bowling.

I gave her back her stuff and she took off, walking very fast back to the classroom. She wasn't very happy.

Tuesday came... and she was fine! She even did a bunch of chores around the house, with a good attitude! I hope it was a tough lesson.... learned!

Monday, March 21, 2011

New Kid on the Block

I had a meeting on Saturday so Chuck and Sharaya took Beth to Athletics. They said that Beth was the newest one to join because the coach introduced her to everyone! Sharaya brought her camera and took lots of pcitures for me! Well, and for you too when you think about it! :)

Everyone gathered for instructions.

Stretching. We need to work on technique.
Plus her clothes weren't appropriate. I had seen some sweat pants at the store and had the girls pick some up when they took Beth shopping. Unfortunately the store was out of them so they got some that looked the same. We'll need to find something different before next Saturday.

The 100 yard dash.

Getting her instructions for the softball throw.

You can see the ball between the trees just above her hand.

Papa's pen!!

Allison running like Aunt Bethy!

On the 500 meter walk.

Saturday, March 19, 2011

Down Syndrome - 24 Years Ago

I was looking through some old books the other day and found one titled Elizabeth Joy. It caught our eye in the store 24 years ago because of the title. My middle name is Joy and our Beth, well her official name is Elizabeth.

Elizabeth Joy is the story of a 2 year old (at the time) girl with Down Syndrome. Beth was two when Chuck bought the book for me for Christmas. I couldn't wait to read it! To read about someone else who was going through the exact same thing as we were?! Amazing!

Remember, no cell phones, no computers, no blogs, email... it was very isolating.

I flipped through the pages the other day and had forgotten that I had highlighted paragraphs that explained exactly what I was going through. The author is from England so her speech is slightly different from American English, plus it was written 26 years ago, before 'people first' language. It surprised me to re-read some of the chapters:

"Strangely, I had never felt I could ask God for a normal baby. I'd always felt He was asking me to be prepared to accept whatever He sent us, as if we were being prepared.... "

"I had really wanted to explain to my friend how I felt about it all. I think she expected me to be devestated. I told her how God had prepared us for Elizabeth... the sense of preparation while I was pregnant. I never felt that He deserted me. He was more real in hospital than at many other times in my life. I had certaintly learnt things I could never have learnt without losing the very thing I'd set my heart on: a normal child."

"It was good to explain to my friend that she didn't need to feel sad for me. It's been hardest for me when people have not reacted at all. Maybe they don't understand and perhaps they are afraid of saying very much. But to have people react as if I'd said my daughter has a cold makes me feel like I must be imagining the pain I feel."

This part I underlined and put a star next to it. Talking about comparing your child to others -

"It could create a lot of guilt if you felt the child's progress depended entirely on your own efforts."

I remember feeling guilty. If Beth wasn't doing the same things as other kids, even kids with Ds that I probably wasn't working with her enough. Wasn't doing enough for her. I remember the guilt was intense. I knew I shouldn't compare her with others, but it's hard not to.

Oh my gosh! When I read this this week, it brought back so many memories!

"It had been so difficult at first when friends arrived with their babies. I had felt as if I had nothing in common with them. It had surprised me when they had mentioned diapers or feeding and I had realized I was doing similar things. But I still felt unlike all other mothers, as if I'd never 'made it'. This feeling took a long time to disappear."

Oh my gosh yes! I remember feeling like this! Sitting in a room filled with moms and their 'typical' kids, I felt so isolated and alone. No one knew what to say. It was like I wasn't a 'real' mom. So gut wrenching.

Then she talks about going on vacation and seeing a bus full of passengers:

I began to realize that the passengers were all handicapped. I couldn't take my eyes off them. I knew I shouldn't stare yet I felt compared to keep looking. Was it to see if any of them looked like Elizabeth or what Elizabeth would look like in twenty years? There were several with Down Syndrome. It seemed as if I was looking at people quite familiar to me, no longer strangers. Elizabeth had brought us a special link with these unknown people. Although they would never know it, I had my own reason for especially loving them."

Isn't that the truth?? I'll see someone at the mall who has Ds and I feel like we're best friends! I want to just go up to them and give them a big hug and yell Hi! Like we're long lost friends! I know I'd probably spend the night in jail so I refrain, but you know what I mean!

Re-reading this book has been interesting this week. Brought me back to the days of so much fear. Mainly fear of the unknown. But now that we're here, now that we're living 'in the future' I was so afraid of, I can tell you.... it's not that bad. As I'm typing this, Beth has come upstairs for a snack. She's in the pantry, going through the cupboards seeing what we have to eat. She's about the level of a 12 year old. She loves The Jonas Brothers and is getting out of the Disney Princess craze. She uses the microwave a lot but only uses the stove with supervision. It's a pretty normal, basic life. Devoid of all that fear I had all those years ago.

Sunday, March 13, 2011

Did You Ever Spit Wash a Smudge?

Yesterday was the first day of Athletics! We were so excited! Even Sharaya and Allison decided to come watch Beth practice. (Diana had to work so couldn't come with us.) The pounding rain should have been our first clue. We hopped in the car and drove to the school. No one was there. The place was empty except for two people running on the track. We thought they were absolutely out of their minds. It was pouring!!

We decided to drive over to a far corner of the parkinglot where two guys were standing out in the rain next to their cars. I opened the door (our windows don't always roll down. Sometimes they do. But our windows don't always roll up) and asked if they knew where the Special Olympics were practicing. Turns out he was the coach! Given the pouring rain, they decided to cancel for today. We'll all meet again next week. Same bat time. Same bat channel. (Does anybody else get that?) Anyway, at least the seagulls were having a great time!

Today was youth choir rehearsal. I had a meeting after church for work (I work at our church) so Chuck brought Beth to choir. I waited in the foyer for her then walked her down. I should know better. She's grown up here. Why on earth would I think she wouldn't know where the room was?! As we're walking down the stairs she asked me, "Same room?" Um... yea. I felt like I was treating her like a 7 year old. Cause I was.

The door way was filled with kids in and out, lots of noise. I asked her if she wanted me to come in. She shook her head no and kept walking. I sort of yelled after her, "Remember to turn off your cell phone!" She looked back at me like I had just spit washed a smudge off her face in front of Nick Jonas.

Friday, March 11, 2011

You Will Dream New Dreams

Wednesday was a great day. I grabbed my fuzzy blanket, my chocolate bar, climbed up into the chair and watched.... okay, I'm not afraid to admit it.... Bambi. One of my all time favorite movies. I guess it's out of the vault and I see commercials for it so I've been wanting to watch it again. I cried when Bambi's mom got shot. Gets me every time. But I also laughed at Thumper. When Bambi calls the skunk Flower and Thumper is rolling on the ground he's laughing so hard. My favorite part! Makes me smile just thinking about it!

Have you read this book?

It's really good. It's a bunch of short stories (63) from parents of children with special needs. It was written 10 years ago so some of the language may not be current, but it's still good. Some of the titles:

How To Be My Daughters Friend
Beyond the Diagnosis
What To Say
Getting to Know My Son
A Change of Plans
Different Dreams
You Are Not Alone

I read this years ago and it encouraged me so much. Reading about what others were going through showed me I wasn't alone. Everything I was feeling, experiencing, learning was absolutely normal and I was going to be okay. Some days I can feel so isolated on this journey but this book opened my eyes to so many other parents, siblings and friends that are walking this same path. You Will Dream New Dreams. Not just a great book. It's a true statement. A promise.

Wednesday, March 9, 2011

She's Coming Out of Her Shell

Beth's alarm went off at 8 this morning. Her second alarm went off at 8:30. (She has a new alarm clock, but we're trying it out to see if she can work it. It doesn't look like it's gonna work for her.) I went down at 9:00 and she was still alseep. I woke her up, turned on the light, took off her covers. At 9:15 she was STILL asleep. Sure enough, her bus came right at 9:29. She scrambled, well... she moved around while grumbling, but she made it out on time. Whew.

And now, the house is quiet. I'm alone and will be for the next oh, 5-6 hours. That doesn't happen very often. Chuck's at work. Wednesday is Beth's long day. She goes to karaoke and art with All Aboard and it's about 20 minutes north of us. Beth is usually the first to be picked up and then they pick up others along the way. Karaoke doesn't start until 11, but Beth is picked up at 9:30. Then art class ends at 4:00 and by the time Beth gets home, it's sometimes close to 6:00. She loves it though! Diana and Sharaya have gone to Canada for the day. Just to do some shopping and hang out together. The border is a 2 hour drive from here so they'll be gone a while.

Beth had her first choir rehearsal on Sunday. She was so nervous. She wanted me to stay with her, but I'm too shy! There was no way I was going to be the only parent sitting in a room of high schoolers! But I went in with her. She took her choir application (she filled out the whole thing by herself!) to Miss Terri and she found a seat in the Alto section. I stayed until rehearsal started then went upstairs to wait. She came out with the music to Step In Time from Mary Poppins! She was so excited! I asked if Miss Terri had given it just to her and she said, "They passed 'em down to everybody." I asked her if they were singing it on Sunday (highly unlikely) but she said, "I dunno." I asked what Miss Terri said when they passed them out. "I dunno." (Beth doesn't have good recall skills. She can answer the phone, talk with the person, but even as soon as she hangs up, you'll ask her what they said, "I dunno." Then we play 20 questions trying to figure out who it was and what they wanted.) I haven't told Beth this but I think they're singing that song in their big fundraiser coming up in a few weeks. They've been working on it for months and Beth won't be doing it since she just joined. So we'll cross that bridge when we come to it.

I've been trying to get Beth to open up more and talk to people. Which is really hard for me because I'm more shy than she is! I told her to say hi to the person who sits next to her. "All you have to say is, 'Hi I'm Beth.' But she said no one sat next to her. Sniff. :(

BUT, on Tuesday we were on our way to the grocery store and she says, "I told Tammi about choir." After a little investigation, "Who's Tammi?" She told one of her teammates at bowling, that she has joined the youth choir!! She said Tammi said "Cool" and gave her a high 5!! I understand her not talking to anyone at choir cause she doesn't know them yet, but she took the initiative to talk to someone she is comfortable with. I'm so glad! She was too! You could tell. She had the look of, 'I talked to someone and it worked!'

And this Saturday starts Athletics with Special Olympics. It's Track and Field but for some reason they call it Athletics. I'm a little concerned because we need to bring a copy of her sports physical but she didn't get one this year. I know, I know. Bad parenting. I called to make an appointment for one but their next opening isn't until April. So I scheduled it, but I hope they still let her participate.

But for today, I'm all alone. In the quiet. Can you see me smiling right now? :) Sigh. No deadlines. No meetings. No requests. Just.... quiet. (I even bought some chocolate at the grocery store last night! Didn't tell anyone!) So now I'm going to go put in a movie, grab a big fuzzy blanket, hop into Chuck's recliner (best seat in the house!) and open that chocolate!!

Wanna join me?

Friday, March 4, 2011

Fun Photo Friday - Fakin' It

On our trips back and forth to San Diego, we almost always stop at the Randolph Collier rest area just inside the California border from Oregon. It's right on the Clamath River. For years I'd take the girls pictures by the large sign and it was fun to see how much the girls had grown. 

We stopped one year and the sign was gone!
I told 'em we should take the picture anyway. They could just pretend. It'll be fun!!
They were so embarrassed! "People are watching!"
"No they're not. Come on! Pleeeeaase!!"


Wednesday, March 2, 2011

Hi! This is Beth!