Sunday, December 30, 2012

We Thought of You

Christmas morning we had The Christmas Carol on the TV while we opened presents. The noise in the room would usually follow the noise on the TV, louder, then softer.

We were at a break in the gift opening when the part came on TV where Scrooge is with The Ghost of Christmas Future and they are watching Bob Cratchit's house. We all got quiet as they showed the empty chair of little Timmy.

I said, "This makes me think of the children from the elementary school in Connecticut. I wonder what kind of Christmas their families are having."

The living room got quiet.

We talked about what the parents would do with all those unopened presents. Some of us mentioned, if it was us, that maybe we'd give them to a shelter.

Ryan said he'd probably keep them all.

The tears were flowing now.

Sharaya said she heard that one of the kids was into horses and that her parents had bought her new cowboy boots for Christmas this year. She said if it was her daughter, she'd definitely keep those.

We talked about maybe keeping a few special gifts. Putting them in a special place somewhere in the house. I mentioned Kristen's mom and how she's kept Kristen's room the same.

The kids agreed they'd probably do the same.

By now we were passing around the kleenex.

I thought of Carly and Brad's mom and dad. I thought of everything they've gone through in the last couple of years. I wondered what kind of Christmas they had this year.

My heart aches for all of them.

I pray you were able to find a little piece of joy at Christmas this year.

Friday, December 28, 2012

Our Turn

Our turn to post all those Christmas pictures! :)

While the girls were growing up, Chuck's mom would buy them pajamas and a stuffed animal and that was the one gift they opened every Christmas Eve. I'm now continuing that tradition with Allie!



We had Christmas at Ryan and Sharaya's this year. 
It was fun to go to their house and see the way they do Christmas. 



 
 Cinnamon rolls for breakfast!

 

 




  
 

 


After we opened presents, Ryan and Sharaya went over to Ryan's folks and the 4 of us went to see Les Miserables. We've seen it live on stage 3 times and were so excited to see the movie! If you haven't seen it, we highly recommend it! It is such a great story about redemption and the amazing things God can do when you turn your life over to Him.

We hope you all had a very Merry Christmas!

Monday, December 24, 2012

It Only Comes But Once a Year

Merry Christmas and Happy Holidays to all my blogging friends! 
We hope you have a very happy New Year!


Saturday, December 22, 2012

Tis the Season...!

I may have used that same title last year when describing a certain someone in our house who CAN'T KEEP A SECRET!!

I won't name names.

(But it's her!! She did it!!)


This girl cannot, I repeat, can NOT keep quiet about Christmas gifts! We've gotten to the point where we just don't even include her in our, "Guess what I got Sharaya!" conversations.

She happened to be in the room when such a conversation took place and I immediately looked at her, "Do NOT tell dad. Don't even tell him we were talking about a gift. Don't even mention Christmas!!"

A few minutes later Chuck walks in the door and Beth says, "Don't tell HIM about it? About the gift?" 

Arrgg!!!! Then what happens is this:

"What?? Don't tell me what about what gift??"

"Nothing! Elizabeth, I told you not to say a-n-y-t-h-i-n-g!"

"No, no you can tell me. Really!"

"No, let's just change the subject."

"ELIZABETH MEIGAN!!"

Only 3 more days....

Wednesday, December 19, 2012

Full Circle

When I was in high school, I'd sometimes find my mom just sitting at the table looking out the window. She usually had a cup of coffee in front of her and she'd just sit there.

"What are you doing?" I'd ask condescendingly. Being in high school, most of my words came out that way.

Her sweet voice would answer back, "Just thinking about life."

'Weird!' I'd think. 'She's so strange and so old.' I'd only think this of course, I'd never say it out loud! I knew better than that!

"I'm going out." Out to live my life, not just sit there and think about it. I wondered what on earth she had to think about. She went to work every day, she was old, her kids were grown. What on earth was she doing??

Well, now I'm in my 50s. My kids are grown. I work outside the home. And I occasionally find myself sitting at my kitchen table looking out the window.

Thinking about life.

I usually have a cup of tea in front of me. What on earth do I think about??

Usually these guys:


That's my mom with the girls in downtown Edmonds.

 


Beth

 

Sharaya



Diana

 




Chuck's mom


 

Sunday, December 16, 2012

Twenty One Years Ago

21 years ago, Diana was turning one.
Beth and Sharaya were both c-sections so we scheduled Diana's birth date.
They gave us a choice of anytime between December 19 and January 6, I think.
Chuck's mom was turning 60 on December 27 and we knew it would create a bond between the two. And we were right. :)
So our third daughter, Diana Lynn was born on December 27, 1990.


Wednesday, December 12, 2012

Also...

Another thing that happened about 25 years ago...

Sharaya had just turned one. 

If we had a boy we'd name him Charles William III.
If she was a girl, we'd name her Sarah Dawn. 
Then we heard the Unguarded album by Amy Grant. 
(Yes, it was an actual record album, 33rpm!)
On it she sings a song to a friend named Sharayah.
(Pronounced Shuh-ray-uh.)
We fell in love with that name!
We dropped the h and named her Sharaya Dawn!


Wednesday, December 5, 2012

Where Has The Time Gone?

The time has flown by. I'm sorry I haven't written.

The three days of Beth's treatment went very well. Every time I'd go down to check on her she'd be smiling, singing, watching TV... it really wasn't difficult at all. Over the weekend we washed her bedding and her clothes. I also scrubbed the bathroom she used. I don't know how much I was supposed to do so I washed the walls and the floors and everything in between. :) She sees the doctor at the first of next month for lab work so he can make sure this radioactive iodine treatment worked. Then they'll prescribe her new medicine. I'm hoping and praying it's better then what she's been taking. She's been eating healthier plus has been off this medicine for over a month and she's lost 20 pounds already!!

Diana was at the European premier of Les Miserables today. (Her reason for going to London.) I watched it live on Yahoo Movies and got to see her in the crowd. Helena Bonham Carter was walking the red carpet signing autographs and passed right in front of Diana. The cameras were there to capture it all! A short time later I got a text saying she received a free ticket and was in the theater waiting for the movie to start! I guess you could say she had a pretty good day today.

We bought our Christmas tree. It's not decorated and there are no lights on it, but it's up!

This Sunday we're going to Ryan and Sharaya's to celebrate Allison's 3rd birthday! Sharaya has been working for weeks to create a Rapunzel party theme. She even painted this:



I still can't believe Allie is three. Time is going way too fast.
 
I've been working on our Christmas card but it just doesn't look right. I think I need to start over. We haven't taken a family photo this year so I've been trying to get pictures from our facebook pages. It hasn't been as easy as it sounds.

There will be some changes coming at work in the new year. It's something I've expected for a few months, but we're still gonna have to make some changes here at home to accommodate. 

So that's what we've been up to this week. I hope you're doing well!

Friday, November 30, 2012

Tradition

We woke up earlier than usual this morning so we could take Diana to the airport. Beth decided to stay home but she did come upstairs to tell her goodbye. (Isolation ended this morning!)

SeaTac Airport is about 40 minutes from our house and Diana needed to be there 3 hours early because it's an international flight. Traffic was heavy but we were able to use the carpool lanes, I'm so glad Chuck was driving!

He dropped us off, then went to get gas. I always like to get out and walk with her into the airport. We went up to the counter and she printed her own tickets from the kiosk. She had a small bag but decided to check it. She didn't want to carry it through the airports and I can't say I blame her. It only weighed 16 pounds, but it felt more like 30!

We stopped at a store to look at some magazines. She didn't bring anything to read but ended up not buying a magazine either. It's so hard to get her to spend money. She'll find something that she likes, something that's she's wanted for a long time and has saved enough money to buy, but then goes home and thinks about it for a week or two. Finally decides to buy it; goes back to the store and will ask me, "Do you think I should?"

Just before we got to the security check point, I took her aside and we prayed. For safety, for peace of mind and for God's protection to be around her. We found the entrance to the line, and I stood back and watched as she got closer to the metal detectors.

She took off her coat, took her laptop out of her purse, removed her shoes... you know the drill. She stepped through the detector... and it was quiet. She went to the conveyor belt to get her shoes, purse and jacket, then turned around to look at me. I was quite a few yards behind her, behind all the people in line, behind the security guards directing the long line of people, but we had a straight view of each other.

She raised her hand and waved. I waved back... and that's when I started to cry.

Have you seen the movie Ever After with Drew Barrymore? (It's a retelling of Cinderella.) There's a scene at the beginning where her dad is leaving and he gets to the end of the driveway. Everyone else is going back inside but Danielle says, "Wait! It's tradition! He always waves at the gate." Danielle continues the tradition as she grows up.

And that's what I thought of this morning as she turned around and found me through that crowd. It wasn't the official gate to her plane, but it was close enough. This is her 5th trip by herself and it really has become tradition for us. 

She always waves at the gate.

Wednesday, November 28, 2012

Day Two of Radiation Treatment

We walked into the medical clinic yesterday and Beth handed her picture ID and insurance card to the receptionist. We no sooner sat down in the waiting room when they called her name. Chuck stayed there while Beth and I followed the doctor.

Through long halls and two more waiting rooms, he pointed to a door on the left. Beth sat down in the chair and I was able to stand right by the open door. These signs were everywhere. There was a big one on the door, plus smaller signs on the cupboards and the equipment. They certainly got my attention.


On the counter there was a small barrier, maybe a foot in diameter that, if you were standing in front of it, would protect your chest from contamination. There was a clear sneeze guard type thing on top of it, sort of at an angle so you could look over the barrier and see what was on the other side.

Doctor T put on some gloves and stood in front of the barrier. He picked up some long handled tongs and picked something up from behind the barrier. When he turned around I could see it was a small vial. He told Beth not to touch the pill inside, but to put it directly into her mouth. Still having gloves on his hands and holding the vial with the tongs, he handed the vial to Beth. She took it, bare handed. As he turned back around to put the vial down, I watched her begin to pour the pill into her hand.

"No Beth! Not in your hand! Just put the pill directly into your mouth." Doctor T spun back around just in time to see her do it the right way. Whew! Not sure what would have happened if she had put it directly on her bare hand, but I didn't want to know!

She drank a small cup of water and that was it. She got up and Doctor T lead us back down the halls, through the two waiting rooms to where Chuck was. He looked up, "Wow, that was fast!"

Beth sat in the very back of the van on the way home. She put on her headphones and sang most of the way home. She's been downstairs ever since, only coming up to use the bathroom. We've gone down a few times to check on her (besides bringing her meals) and she's always doing well. They said she could have neck pain because the thyroid sometimes is swollen during this treatment, but she hasn't had any side effects. 

On the ride home yesterday she asked if we could buy her The Little Mermaid. Her copy of the movie is so old it doesn't work well anymore. As she begins day two of isolation, Chuck and I are gonna go buy it for her.

Monday, November 26, 2012

Trips And Trials

Beth begins her thyroid treatment tomorrow. The closer it gets, the more I realize how many details have to be worked out. I'm so glad we have two bathrooms because we can't use the same bathroom as Beth this week. We have a big bathroom and a little bathroom. Beth prefers the big bathroom for various reasons so we'll be moving our stuff to the little bathroom. We're planning how to do meals and drinks, dishes and trash. I think at this point, I'm more nervous than she is!

And early Friday morning Diana flies out to London! This will be her 4th visit, she loves that city. She'll be going to the premier of Les Miserables. She is beyond excited and actually screamed when she found out they might get snow next week!!

Saturday, November 24, 2012

This Little Town

Thanksgiving Day was awesome. We served about 1000 people, a little less than usual, but that's okay. The day was so much fun.

Ryan, Sharaya and Allison came to our house for Thanksgiving dinner last night. We don't have an actual dining room, more like a breakfast nook so we rarely eat dinner at the dining room table. Except on holidays. We bring in extra chairs and squeeze in around the table. I love it. I'm looking forward to the day we can have an entire room just for our dining room table. :)

Anyway, as we're finishing dinner, Allie says she has to go to the bathroom. As I get up to take her, Beth leans over and says her stomach hurts. You could see the pain on her face. Chuck got her to the bathroom then I went in to check on her. She was hot and sweating. I got a cool towel and laid it on her back. She told me it 'felt so good' so I put it on the back of her neck and her forehead. I was surprised she was so hot and actually sweating. I gave her the trash can thinking she might throw up but she never did. 

After a little while she said she wanted to come out to the living room and lay down on the couch. I went downstairs and got her pillow and blanket. After a few minutes I asked her how she was doing and she said she was cold. I got her a second blanket. I have no idea why this came on so fast. One minute she was eating happily and the next, she was doubled over in pain. And so warm! I can't get over how fast she went from normal to hot and sweating.

She had color in her cheeks and I kept telling her to breathe through her nose, to make sure she was getting good oxygen. She just laid on the couch snuggled up with the blanket. After a few minutes she sort of laughed at the TV. (We put on iCarly for her.) Then she laughed more. And more. About an hour later, she got up, said she felt better and went downstairs.

I have no idea what caused it. Maybe it was an allergic reaction to something she ate? We were trying to list everything she had but there was really nothing that she hadn't had before.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Tonight was the tree lighting in downtown Edmonds. We've lived here off and on for 24 years but have only attended the tree lighting once before. Shame on us. 


Allison on Sharaya's shoulders




A choir from North Sound Church.
There were some people from our church singing as well.

 

 


 Santa rode up in a vintage fire truck.
Then the countdown to the tree lighting!
10, 9, 8, 7...!!!!

 


Some of the shops gave out free hot chocolate.
There was popcorn and Christmas music.
We do love this little town.  

Wednesday, November 21, 2012

The Day Before

It's the day before Thanksgiving and Beth and I just got back from working at the church. Each Thanksgiving we serve a free dinner to the community. I'm the team leader for the condiments area; we prepare the black olives, pickles and cranberry sauce, plus dish up all the pies. It's exhausting but fun.

Today Beth and I prepared the room where I'll be working tomorrow. We laid down heavy mats, moved tables, hauled the big Costco size containers of olives and pickles... then we went out for frozen yogurt. :)

Tomorrow Beth will be working in the childcare area, helping with the kids all day. Diana is helping me in condiments and Chuck will be in the transportation department. If someone doesn't have a ride, we go pick them up and then take them home after dinner.

We do this three times. There are dinners at 11:00, 1:30 and 3:30. There is entertainment during the meal plus door prizes and a raffle for an IPad. We have a professional photographer taking family photos and a reception room with coffee and snacks while you wait for your seating. It's a pretty involved event with more than 400 volunteers to make it all happen. I guess you could say this is our 18th Annual Community Thanksgiving Dinner!


Tomorrow is Thanksgiving (I can't believe it's the end of November already!) and I just want to say how thankful I am for some of the basic necessities. A hot shower, my bed, a roof over my head. I know so many in this country, due to the weather or house fires don't have even these basic things and I know how precious they are. I'm thankful for my husband. He has been so faithful and such a calming influence in my life. I feel safe when he's around. I'm thankful for our three girls, Beth, Sharaya, Diana and for Ryan and Allison. They bring joy into my life. I'm so proud of each of them and am blessed that they all love the Lord.

From our family to yours, we hope you have a very Happy Thanksgiving!



 

Sunday, November 18, 2012

It Didn't Used To Be Like This

I read a post a few days ago and haven't been able to stop thinking about it. It was on Got Down Syndrome's Blog and it was about new research being done at the University of Washington, or U-Dub as we call it here in Seattle. I had seen the article somewhere recently and told myself I was going to look into it more, but never did. I was glad to see it on her blog. Thank you Qadoshyah!

It's about scientists who, in the lab, succeeded in removing the extra copy of chromosome 21 in cell cultures derived from a person with Down Syndrome.

Dr. David Russel said, "We are not proposing that this method will lead to treatment of Down Syndrome but for the possibility that scientists could create cell therapies for some of the blood forming disorders that accompany Down Syndrome. For example, people with Down Syndrome who are diagnosed with leukemia could have stem cells derived from their own cells, then have the trisomy removed from those cells. They could then receive a transplant with the cells without the trisomy (their own cells - that don't promote leukemia) as part of their treatment."

This is just amazing to me. Did they just reach in to that petrie dish and remove that extra piece of chromosome? Did the original chromosome remain intact? Unchanged? There's so much about this that I don't understand. I know this could be taken to the extreme by some people and used as a 'cure', as a way to make sure their babies aren't born with Down Syndrome. But to be able to help those who have leukemia? I'm all for that!! If this can truly, honestly, safely be used as treatment or even a cure for leukemia for kids who have Down Syndrome... what a breakthrough!

But that's not really what this post is about. It's about the percentage of kids who have Down Syndrome who are diagnosed with leukemia.

That wasn't even heard of when Beth was born. Granted, we didn't know a huge amount of people who had kids with Ds, but we did know of enough people. And none of them, not one, was ever diagnosed with leukemia.

It makes me wonder what's changed. Why are there so many kids being diagnosed today? I know some parents refuse to get their kids immunized because they just know that is the cause. I don't know if that's the cause - all three of our girls were immunized up to 5th grade - but I sometimes wonder about it. As our girls got older, it seemed more and more were needed. Every time we'd go to the doctor for a cold or... whatever, it seemed they were telling me another immunization was needed. At about 5th grade I just told my doctor 'no thank you'.

I got my last immunization in 2nd grade. Is it true that kids nowadays get them well into middle school? Maybe it's my age, but that's just crazy to me.

I don't know why so many kids are being diagnosed with leukemia. It didn't used to be like this.

Thursday, November 15, 2012

Radiation Treatment

I got home from work, put dinner in the oven, started a load of laundry and now I have just a few minutes before everyone else arrives home.

Let's see, what have we been up to?

Yesterday I painted 'phase 2' of the kitchen. I'm hoping to get it done before the end of the year. No guarantees.

Diana leaves for London in just two weeks! She's going to the premier of Les Miserables. She'll be going alone but plans to meet some friends there. I'm a little jealous.

On the 27th of this month, Beth starts her radiation treatment for Graves Disease. Chuck has taken that whole week off so we'll both get to be there with her. I'm glad Chuck is coming. We always feel stronger and more brave when he's around.

I don't know if I told you that I was asking a lot of questions in the doctors office about side affects, things we should watch for, etc. when he told me that the government looks at this the same way they look at a nuclear reactor. To them, it's all radiation so a lot of the same rules have to be followed. But he said there's such a small amount of radiation in this pill, it's not gonna hurt any of us. It's just a tiny amount to kill her thyroid. But because it's r-a-d-i-a-t-i-o-n, the government puts all these restrictions and guidelines in place. He said by law, we have to follow the rules he gives us, but medically there's not enough radiation to do any harm.

I felt so much better after that! It was like, "Okay. We can do this."

Saturday, November 10, 2012

She Hugged A Pastor!

Chuck, Diana and I had a Children's Ministry meeting last night. While that was going on, Beth had a Hospitality party. Everyone in the church who is an usher, greeter, parking lot attendant, etc. got together and hung out. They're so busy on Sunday mornings that they don't really get to spend time with one another so the Pastor who heads up the Hospitality team - Pastor K - had a party.

I was a little nervous about Beth going because I knew she would only go for the food. She's too shy to talk to anyone and all she would do is eat. I talked to her about it a few days ahead of time and explained who would be there and what would happen.  I encouraged her to talk to people, to ask them how they're week was, ask them what they'll be doing this weekend. I really tried to do as much prep work as I could.

Our meeting started before hers so Chuck was willing to leave our meeting early, he went home and got her (we live about 4 minutes from church) and came back to our meeting. I admit I was a little nervous about how she would do.

Well, when we went to pick her up she jumped up from her seat to show us her 'gift'. Everyone got to choose between a candle and some chocolate. She chose a cute glass container with a few pieces of chocolate in it. Then she said, "They have a chocolate fountain!"

As we got ready to leave, she turned around to everyone, waved and said (loudly for everyone to hear!) "Goodbye!"

I was shocked.

I suggested she go over to the host and thank her personally and M said she loved having Beth come. Beth smiled, looked at her and said thanks. Then they talked about the chocolate fountain, M said Beth had asked her for help... again, I was shocked.

As we turn to go, she giggled, waved and said, "Bye Pastor K!"

Wha...??  Beth?? Talking to a pastor without any prompting?!?

He was talking to someone else and didn't hear her so I told her she might want to say it again. When she did, he came over and gave her a big hug. "Thanks for coming, Beth!" She hugged him and smiled so big!

As we left she was smiling, her head was up; she was a different girl walking out of that church. It was awesome!

Wednesday, November 7, 2012

What Would You Have Done?

I try to treat Beth the same way I treat my other daughters. But let's face it, Beth isn't like my other daughters. Here's what happened:

We came home from church last night and I made hot tea for everyone. I took Beth's downstairs and saw a large cookie that she had bought at the coffee stand. I checked the nutrition label and it was packed with calories and sugar. I told her that she shouldn't eat it, that it was very unhealthy but that she was an adult. She was smart enough to make her own choice about it and that I wasn't going to tell her what to do. I put the cookie down and went back upstairs.

Our middle daughter is married with a daughter of her own. I certainly don't tell her what she can and can't eat. Our youngest will be 22 next month and I don't tell her what she can and can't eat. But Beth isn't like my other daughters.

Beth has Down Syndrome and it can impair her judgement. It can cause confusion about right and wrong. The 'I want it' urge is sometimes much stronger than the 'what is healthier for me'. The 'I'm an adult and can do what I want' sometimes beats out the, 'I need to make better choices for my life'.

But my other daughters make poor decisions. As much as I want to tell them, "DON'T DO IT!!" I have to allow them to learn from their choices, good or bad. As all moms know, we sometimes bite our tongues, we look the other way. We have to, in order for our kids to grow up to be independent and contributing members of society.

But Beth isn't like my other daughters. That little extra sometimes keeps her from seeing the consequences of her actions. So do I keep 'teaching, instructing, deciding for Beth? Is that what I signed up for when we brought her home from the hospital? Do we, for the rest of her life, tell her what to eat, what not to eat, what to wear, what not to wear, what to do, what not to do?

But Beth is 28. When do I let her make poor choices? What do I do when she doesn't understand the consequences of those choices?

You'd think that after all these years I'd have it all figured out. But I don't.

After the cookie situation last night, I crawled into bed and wondered if I had done the right thing. Should I have just taken it away? Should I have just said, "No you're not eating this?" She's 28! If my other daughters eat things that aren't healthy, I don't say anything. If they do something that might risk their health, I don't say anything.

But Beth isn't like my other daughters.

Saturday, November 3, 2012

Wow. I'm humbled and overwhelmed at your comments on my last post. I truly thought I was 'preaching to the choir' all these years. Thank you all for reading! I feel so loved! :)


Beth and I went shopping today. The first of every month she gets SSI (supplemental income) from the state. It's deposited directly into her account but it immediately begins to burn a hole in her pocket! On Tuesday she reminded me to flip my calendar. Then she asked if we could go shopping. We've been busy all week so I told her we'd go today. When I asked her where she wanted to go she said, "Bartells, Fred Meyer and Target."

So I asked her what she planned to buy and she said her CD player wasn't working. She has an ipod but prefers her CD player. So we started at Freddy's and she found one right away. We then went to Bartells for batteries.

They had batteries at Fred Meyer but she knows right where they are at Bartells. She likes routine, consistency and things that are familiar. It's hard for her to buy new shoes or new clothes for that very reason.


I fixed everyone some hot tea a little while ago and when I brought hers downstairs, she looked up at me and pointed to her new CD player, "It's working!" Ahhh, things are right in her world again. :)

Wednesday, October 31, 2012

31 For 21 - If I Had A Chance To Say One Thing

October 31st. The last day of Down Syndrome Awareness month. I feel like I failed. I don't believe I brought awareness to anyone outside the Ds community. I posted (almost) every day... to other parents who are already aware of Down Syndrome. But if I had an opportunity, say a commercial spot that would be broadcast to the world, or maybe my state, or city, what would I tell them?


Just say Hi. When you walk by, just say hi to her. She's a person. She has hopes, dreams and goals, just like you. She has hobbies, just like you. She laughs, she gets her feelings hurt, she loves, she cries. She wants people to like her, just like you. She likes to hang out with friends, just like you. She's compassionate. She doesn't judge. Give her a chance. Just say Hi. You may find that she's more like you than you know. You may find that you have more in common than you expect. You may find that she's the lifelong friend you've been looking for. Just say Hi.


I've been thinking about this for a few days now but still don't feel like I could say anything that would change the world. Plain words aren't going to do it. People have to want to change. People have to begin to think differently. But what if my words change just one person? What if it did bring awareness to someone, just one, who could then change the world of someone who has Down Syndrome?

Tuesday, October 30, 2012

31 For 21 - Two Kinds Of People

We are snooze alarm people. We all hit our snooze alarm numerous times before actually getting up. Chuck probably hits his the least, maybe once or twice before sitting up on the side of the bed for a few minutes.

My alarm clock is across the room so I have to get out of bed to turn it off. But that doesn't deter me. I usually hit my snooze alarm 4-6 times every morning! I groggily head back to bed mumbling, "Jus' 5 more minutes."

Diana hits her snooze alarm so many times, her alarm stops going off. Then she falls back asleep and flies out of bed just moments before she needs to head out the door. She always manages to look amazing though.

Beth usually hits her snooze alarm 3-4 times before she sits up on the side of her bed. (Like father like daughter... in so many ways!) She moves slow in the morning, slower than usual.

Except this morning. This morning she got up right away. She was dressed and upstairs just 10 minutes after her alarm went off.

Then I remembered. They had a Halloween party at the bowling alley today. Beth decided not to dress up this year but she was excited to go!! And she scored a 112 for her first game!  

Monday, October 29, 2012

31 For 21 - Constantly Progressing

Beth has been talking so much lately. For many years she's been quiet, not saying much. Not giving her opinion about things. Not engaging in conversation.

But lately she's been talking a lot. About her life, about her wants and her opinions. She's engaging us in conversation. She's spending more time upstairs instead of alone in her apartment downstairs.

I plan to write more about this another day, but that's what I've been noticing about Beth lately. She's talking a lot. And I like it.

Sunday, October 28, 2012

31 For 21 - As Hard As I thought

This blogging every day for an entire month is as hard as I thought it was going to be. I got on the computer for a few minutes just to check email and as I'm getting ready to close it down I remembered I hadn't posted yet today!

We went to church this morning. As we were leaving Beth went over to Common Grounds, our coffee stand. I was afraid she was gonna order another drink but we were in a hurry cause Chuck was called into work.

I dashed over to her and asked what she was getting. She said she was just getting a can of soda. She takes one with her when she goes bowling on Tuesdays. I said okay and told her to get out her money.

That's when the barista said, "She already paid. She's on top of it!" Beth grabbed her soda and looked at me, "Uh, yea!!"


Saturday, October 27, 2012

31 For 21 - An Old Photo

We have a large wardrobe downstairs that's filled with photo albums, wrapping paper, etc. I've been trying to clean it out, sort through stuff and get rid of things we don't need. Today I found this picture of Beth. It's her 11th grade photo. I love this picture of her, she looks so happy and confident.



Friday, October 26, 2012

31 For 21 - Busses

Beth began riding the school bus when she was about 2 1/2. She rode it every weekday until she was 21. Except for the two years we home schooled. And the one year she attended the elementary school in our neighborhood. So for about 15 years, Beth rode a school bus.


 



 After she graduated from high school she entered VOICE, a great program run by the schools, to help kids and their families transition from the school district to the state run programs. One of the things we had to do was sign her up for DART. Our Community Transit system called Dial A Ride Transportation. It's for people who are unable to ride the regular transit buses and they go door to door. It's perfect for Beth because it allows her independence, but insures her safety. They pull into our driveway and drop her off at the door to the bowling alley. Or the mall or wherever she wants to go. Then they drop her back off at our front door. 

We call at least two days ahead of time (it's no good for last minute excursions) and let them know where she's going, when she needs to arrive and what time she wants to come home. They do all the rest! And the drivers are basic community transit employees who volunteer to drive the DART buses. No easy job, let me tell ya.




Every few years we have to fill out a new application for DART. We have to explain why Beth needs to ride DART; why she isn't able to ride the regular CT bus. It sort of shocks you, reminds you once again that your daughter has special needs. You know how, after a while you just kind of forget? You know, she's just.... Beth. Well, every time I fill out this application, it's like I have to accept the Down Syndrome all over again. Every question reminds me that she is different. 

Please clarify how your health condition or disability prevents you from getting to or using the regular fixed-route system.Then your choices:
1. I have difficulty knowing where to get on and off the bus because...
2. I am unable to figure out how to get from here to there in the desired time because...
3. I cannot transfer between buses because...
4. I cannot understand instructions from the bus driver because...
And on it goes.

Developmental, mental and behavioral conditions:
Autism - Mild, Moderate or Severe
Bipolar Disorder - Mild, Moderate or Severe
Down Syndrome - Mild, Moderate or Severe
You circle the condition and what level your child is. There are 13 to choose from.

Do you need the DART driver to assist you from your door to the bus?
At your destination, do you know where you are and can you enter by yourself?
Please explain in detail, any other considerations about your disability that will help us determine you eligibility.

It's 11 pages long.

Don't get me wrong, I'm so absolutely grateful for DART! It's been such a blessing for Beth. I can't imagine what her life would be like without DART. I pray for the drivers, it's a job I couldn't do, that's for sure! 

It's just hard to read through this application. It's hard to write down the answers. It puts in black and white, all of Beth's shortcomings and disabilities. It screams at me, 'Your child has special needs! Your child is different!'

Thursday, October 25, 2012

31 For 21 - Doing It Again

Yep, I'm gonna cheat again. Just too tired for a long post. 



Allison Lucy. 
She'll be 3 the first week in December. 
I adore this girl!

 



Wednesday, October 24, 2012

31 For 21 - Lessons We Learned

Lessons We Learned While Raising Beth

Explain Everything.
      We didn't used to explain transitions to Beth. Looking back now I wonder how we could have missed this important issue. When I say transitions, I mean like vacations, moving, changing schools. I don't ever remember sitting down with her and explaining, in detail, what was going to happen. I think we just told her the same way we told Sharaya and Diana. We realized this when we took a vacation to the East Coast. The first 4 days Beth was just a bear. She wouldn't talk to us. She was angry. At one point we were walking around New York and she just sat down. On the sidewalk. She finally opened up to us and we realized she thought this was our new life now. That we had left everything back in Seattle and this was home. We hadn't told her it was only a vacation!! Now we tell her in advance, mark it on her calendar and we talk about it a lot. She's able to ask questions, express her fears. It makes her a part of the entire experience instead of just going along for the ride.

Puberty
      Beth was 9 1/2 when we began to see physical changes, hair under her arms, etc. At 13 we bought her first bra and she started her period. A few months before Beth started her period, she would itch... down there. And so she would scratch. (It wasn't until Sharaya was going through this that we realized it was a sign of things to come.) I had been praying for some time about this day. I was so afraid that it would happen while Beth was at school. But, thankfully it happened on a quiet Saturday morning. She got up to go to the bathroom and yelled, "Mom!!" I knew instantly. :) I showed her how to put on a pad and talked to her about being a young woman now. I monitored her throughout the day, making sure she was changing it regularly. The next day she went to the bathroom and called me again. She showed me the spot on her pad and said, "Not again!" Maybe I didn't explain the whole '35 years of this' quite well enough. Now all I have to do is ask her if there's enough in the cupboard. If not, she writes it on the grocery list.

 Style
     It was hard to find shoes and clothes that fit Beth and reflected her age. At 14 she was 5'9" and weighed barely 100 pounds. People thought she was a 4th grader. But naturally, she wanted adult clothes and shoes. We had the hardest time finding size 4 shoes that didn't have the Lion King on them! I remember going from store to store looking for shoes she liked. I think we finally found some at payless. We still shop there today.

Guardianship
     As Beth got closer to her high school graduation, we had the school tell us that we had to submit paperwork to become her legal guardian. They told us all kinds of scary stories of kids being sold cars they couldn't afford and people stealing from them. Being the compliant parents we are, we filled out the paperwork, hired a lawyer and began the process. The lawyer was a friend of ours from church and he began to ask us questions. Did Beth often go places by herself? Was Beth interested in having a car? Would Beth open a checking account without us? We began to realize that it probably wasn't necessary to become her guardian that year. Well it's been 10 years and we're still not her legal guardians. At her job service, Beth signed a form saying they can talk directly to us and that that we're able to make decisions with her. Companies have been very accommodating when it comes to talking with us and with Beth. We include Beth in decisions: does she want a checking account or not; does she want to learn to drive a car; is she interested in moving out on her own. Now, every family is different and you may choose to become your child's legal guardian. But just know it's not a requirement.

Monday, October 22, 2012

31 For 21 - October is More Than Just Ds Awareness Month

At our house, it's also birthday month!!

Beth was born on October 10, 1984. Sharaya was born on October 6, 1986. We always wanted our kids to be 2 years apart, but we weren't figuring on them being just 4 days apart. Beth was more than two weeks late; my original due date, the one the doctor gave me the first time I saw him was September 21. Then further along in the pregnancy, he changed it to September 29. Beth didn't care. She didn't want to come out no matter what date it was!! She was an emergency c-section because my water broke yet she hadn't moved into the birth canal.

Two years later I chose to try a vaginal birth (sorry if that's too much information!) Sharaya tried to come out. I was in labor for a week, every night from midnight to 8 AM. I'm not exaggerating. At 8 AM, the contractions would stop. I'd spend my day taking care of Beth, then as I was crawling back into bed, they'd start again. A week later the contractions continued throughout the day, but my water never broke. After 31 straight hours of labor, they took her by c-section. Looking back now, Chuck and I realize they never broke my water. Why didn't they break my water?!?

Anyway, with two birthdays so close together, we celebrated them together. Two little girls, one party.


 

 

 


But then one day Sharaya came to us and asked if they could have separate parties. I think she was turning 10. It was definitely time. Why didn't we think of it first? We're the parents, we should have thought of that! (Sharaya has always been one of the sensible ones in the family.) So that year we began having two parties. Two older girls. Two cakes.


 

 





 On October 6, we'd buy a cake and invite people over. Then 4 days later, we'd buy a different cake and invite different people over.






 There were big parties.

 




And there were small parties.




One year Beth got her ears pierced. She wore the earrings for the recommended 6 weeks but when she changed them, the holes closed over almost instantly. I think she was without earrings for 24 hours, but the holes were already closed. She got them pierced again about 6 months later and the same thing happened. She decided she didn't want them done again.

 



This year they turned 28 and 26 and we didn't even take pictures. We're becoming more relaxed as they (we!) get older. :) But we do love October in our house!

Sunday, October 21, 2012

31 For 21 - Double Prizes!!

Beth took part in the Special Olympics bowling tournament today. 
She brought home a 4th place ribbon. 
(Thank you Diana for the pictures!)

 






And Diana bought a bike! 
She rode around the neighborhood then rode out to her old elementary school.
Now that she's working 3 jobs, she's glad to have some transportation!