Wednesday, July 27, 2016

And He Said, "Babies With Down Syndrome Look Weird."

We took the ferry over to Kingston the other day, walked along the beach, had some ice cream, it was a great day! As we bought our tickets, I asked the cashier if Beth qualified for the 'disabled discount' (that's the way it was written on the paper) and she said yes. I told Beth that her ticket cost less because she had Down Syndrome and then the cashier told her, "You'll have money left over to buy something else you want because you're special." Beth smiled and said, "Yep!"

I know the cashiers comment would have angered some people but I know she wasn't trying to hurt Beth. She was trying to be nice, nothing more. Maybe she hadn't had many encounters with people with Down Syndrome. Maybe she kicked herself after we left, 'Why did I say that?!' (I think we've all been there.) The way we reacted to it set the scene for the rest of the afternoon. We said thank you and went on with our day.

But her comment reminded me of a situation that happened when Beth was born.

We found out that Beth had Down Syndrome after she was born and I had had a full day of doctors and specialists. The next morning I woke up to my roommate talking back and forth with her doctor. There was a curtain pulled between our beds, but I could hear her whisper, "Does my baby have Down Syndrome?" Her doctor laughed, "Does your baby look weird? Downs babies look weird, you'd know it if you had one."

I froze. I literally held by breath for a few seconds. I couldn't believe what I'd just heard! But then I somehow knew that this was just the first in a long line of comments we'd hear over the years. It was like, okay, here we go, and I knew how I responded to this would set the presedence for the rest of our lives.

I didn't move. I wanted my roommate to think I was still asleep and that I hadn't heard what her doctor said. She went home a couple days later but I never said anything about it. As far as I know - wherever she is all these years later - she believes I never heard that conversation. I do remember one of the days I was holding Beth she told me Beth was beautiful. I hope that seeing me and my family love on Beth showed her that children with Down Syndrome weren't weird and were worthy of love.

And I believe Beth's smile and interaction with the cashier at the ferry terminal showed her that Beth - like everyone else on the planet - is special and worthy of love and kindness.



(Beth is in the long black dress with white jacket tied around her waist.)





Wednesday, July 20, 2016

Tolt

Chuck, Kathy and I drove out to the Tolt River today. Oh my gosh it was so gorgeous out! Big, puffy clouds, warm sunshine, such a gorgeous day!




We walked over this suspension bridge. It only moved a little... until you got to the middle, then it began to sway a lot! We stopped and held on for a minute, then walked a little faster the rest of the way. :)






I love the great outdoors! How about you? Where's your favorite place?

Sunday, July 17, 2016

Girls

Diana flew back home on Sunday. We all got up early to be able to say goodbye to her, then Sharaya and Allie drove her to the airport. It was hard to say goodbye but I did get one more picture of my girls! 


Friday, July 15, 2016

Do You Like Purple?

Diana has been going non-stop since she arrived on Tuesday. We all went out to eat her first night here. She has spent time with the bride-to-be, shopped for gifts, hung out with Sharaya and got to see a few former co-workers. Her dress needed to be hemmed so this morning we drove out to Valerie's to drop it off, then we drove back out a few hours later to pick it up. It looks gorgeous on her!



Kathy, Beth and I wandered around Hobby Lobby. 
I love that store!



 Kathy and I sat down by the water and watched a beautiful sunset.




And we visited The Purple Store!
There were purple bathrobes, bread makers and dog collars!
Then we realized the two of them were both wearing purple!
You can shop there too at thepurplestore.com!


 We hope you have a fun, purple weekend!

Saturday, July 9, 2016

New York State of Mind

Sharaya decided to take her first solo trip ever! And it was a big one! She hopped on a plane and spent a full week in New York City. Her main reason for going was one of her favorite bands, Mumford and Sons was playing in Queens so she decided to make a full week of out it! We visited there was she was around 17 so she was excited to see how things had changed, as well as see a few things we didn't get to see in 2004.

She stayed with Diana, then would get up early in the morning and take a bus into NY. On Friday night, they got to stay at a friends house who had a place right in New York City. What a view!!


On the roof of their building.



Empire State Building



She went to The Top of the Rock






Freedom Tower



The Guggenheim




At the Mumford & Sons concert at Forest Hills Stadium in Queens




 She had such a great time and now Chuck and I want to go back again!

Wednesday, July 6, 2016

The Sweet Wall

My sister had an uneventful flight and arrived here Tuesday morning. It's been so good to see her again! I've had the last two days off so we've talked a lot and laughed a lot. Sharaya and Allie came over tonight and we had dinner and played Yahtzee. 

Today we wandered around Seattle and I took her to the Fremont Troll. She was shocked! It's a pretty amazing... creature. He was built in 1989 out of rebar, wire and 2 tons of concrete and yes, he's grabbing a real VW bug.



From there we went to Pikes Market and got to see the Gum Wall! All the times Chuck and I have been there, we've never seen the Wall! People from all over the world have put their gum on that wall, I saw little cards from Japan and Russia... as soon as you stepped into the alley you could smell the sweetness of all that gum! Actually, it was kind of gross. It sure was colorful though!


 


We love everything about Pikes Market. The food and the vendors and so many things to buy, t shirts, flowers, jewelry, coffee mugs, belt buckles and there's just an electricity in the air. We ate lunch overlooking Puget Sound, some apple cinnamon danish things. They were SO good!




  I hope you all have some fun adventures this week!

Thursday, June 30, 2016

They're OURS!

Beth and I just got back from helping at VBA. Well, we helped with the clean up part anyway. The Children's department decided to remove all the offering envelopes and pens and note pads from the Sanctuary so the kids wouldn't write on them and VBA ended today so Beth and I put everything back. It's hard work but she did great! I'm so glad she was there to help me!


 
There are holders on the back of each seat and we filled the entire main floor.
The Children's department will do the balcony tomorrow. 




Chuck and I are in the process of refinancing our house so we're preparing for the inspection next week. It actually happened kind of suddenly, we went to the bank for something totally unrelated but then they showed us how much we could save each month and oh my goodness! The housing market has skyrocketed and our house is worth so much more than it was just a couple years ago. So, we've been scrambling to get a few minor things done around the house this week.

I was telling Beth the other day how my sister is coming for the entire month of July! We might go out on the ferry, go out to dinner, maybe to Pikes Market. It'll be fun to have her here for a while. I've been fixing up Diana's old room with just a few things, I added a small mirror, a clock, I put a rocking chair in there. My sister just needs some peace and quiet so I'm trying to create a space where she can just sit and breathe if she needs to.

Then I told Beth that Diana will be here the middle of July! She's flying out for a few days to be in a friend's wedding and to spend a little time with family! Beth squealed and got so excited! We're already planning to meet her at the airport and then we're all going to go out to dinner. Only 11 more days, can't wait!!!!

That's when Beth said, "OUR sisters are coming!!" 

Wednesday, June 22, 2016

Another Date and More Marriage Talk

A few weeks ago Nick's mom emailed me to ask if Beth could hang out with their family. They were taking the ferry over to Kingston and wanted Beth to go with them. I didn't have to ask her twice. :) They walked on to the ferry, rode it the half hour to Kingston, walked off and had something to eat. Parking your car and walking on is a lot less expensive and is a fun day trip on the water. When they got back, Loren and I talked for a while about what it would be like if the two of them got married.

She told me that Nick has some interesting quirks and she was a little concerned about how Beth would deal with them. I've actually thought the same thing about Beth! How would Nick handle the way Beth brushes her teeth? (She actually spits everywhere, the sink, faucet, shower doors, the walls. I try to get her to wipe everything down as soon as she's done, but she rarely does it. Is that going to gross him out? And her toenails, I trim them now but will he be willing to do it?

She asked me if Beth ever talks and said she was SO quiet all day! Yep, that's Beth. I told her that once she gets to know you she loosens up. But then she said that Nick talks enough for the both of them!

She said that Beth seems to be a better fit than his last girlfriend. And Nick mentioned that "even if she wants to get back together, no way, because Beth is the one he loves."

Some days I just think that they'll work it out the way all married couples do, but then I remember that people with Ds have deep routines that can really affect them if it's changed. I'm trying to let Beth know now, what kind of changes there might be, like Nick might not like the TV shows she likes. Not that they're bad, he just might have different tastes.

When I'm in the bathroom putting her hair in a ponytail, I'll ask her what she'll do if her and Nick get married. Will she ask him to brush her hair or will she just do something different with it. "Different."

Loren and I talked about their housing situation. Where would they live? HOW would they live? Neither of them can pay bills, use an oven. I know Beth wouldn't know what to do if a pipe burst or the toilet overflowed or the electricity went out. There's so much to discuss and even though we know that no one ever has life all figured out, there just seems to be so much more involved here than with a typical couple.

Should we just let them go for it and deal with things as they come or should we take the time to really plan for any possible scenario? It's so hard to know what to do.


Wednesday, June 15, 2016

You Are Cordially Invited...

Beth got an invitation the other day from the elementary school where she volunteers. It was for an event they were having to say thank you to all their volunteers

She goes there every Thursday and the first thing she does is go out to their mailbox and get the mail. Then she brings it into the front office, sorts it and puts it in all the teachers mail slots. Then she does what ever is needed in the office.

She files papers, sharpens pencils, makes copies on the copy machine and even helped out this year with their art show! She's been volunteering there now for 3-4 years and she loves it!

So today Chuck and I picked her up from All Aboard and as I walked in, guess who called my name and came running from across the room?! Nick is so personable and friendly! He talked to me the whole time we waited for Beth to get her things together. Told everyone that I was going to be his mother-in-law. :)



We got to the school and found some seats in the gym. They look fairly normal in this picture but the seats were no wider than my cell phone! The teeniest little seats I've ever seen! 



There was cake and cookies and punch. They had a raffle for all the balloons, plus the flower arrangements. And guess who won some flowers?



Some of the teachers told us how much they enjoy having Beth there and that she's such a huge help to them. The Principal came over and sat down with us for a while. She told us how much they love Beth and how she wants to find more work for her to do next year. Beth was beaming the whole time and said she really likes it there.




Outside the students had drawn hearts and written thank yous to the volunteers.


I'm so thankful the Principal is pushing for inclusion with Beth. She'll talk things over with her and then let Beth's job coach know what they decided rather than always going through the job coach; she engages Beth in activities around the school; she treats her like a person and not a diagnosis. I absolutely love this Principal! The students at this school are blessed to have her!

Monday, June 13, 2016

You're Not Going To Believe This!

The oral surgeon at Harborview Medical Center suggested we go back to Beth's dentist to see if they could save a couple of her teeth.

I just called her dentist. The one about 2 miles from our house. The one we were just at in April.

"I'm sorry, we no longer carry her insurance."

"What?!? We were JUST there!!"

"We haven't carried that insurance in a while but we chose to see Beth that day because it wasn't a recurring visit. You're welcome to call our offices in Kirkland or Redmond." (They're a 20-45 minute drive depending on traffic.)

"Why didn't anyone tell me you no longer carry her insurance? I never got a phone call telling me that had changed. You didn't even tell me when I was there!"

"I'm very sorry ma'am."

Aaarrrggg!! I'm not upset that they made this insurance change, what bothers me is that they never informed their patients. Even when their patients were standing right in front of them, they never said a word!

So now we begin the incredibly fun task of trying to find a dentist that takes Medicaid.

I knew this might be a possibility but I had decided to just go back to Beth's old dentist because she really liked it there. I made the decision and that was that. 

Or so I thought. Oh happy day.