Thursday, June 22, 2017

Last Saturday While Beth Was At Work...

Last Saturday while Beth was at work...

Chuck and I moved her furniture downstairs. 

When she got home she walked into her old room and just stopped. I followed her downstairs and she was just beaming! 

She immediately began hanging up her crosses and her calendar. She plugged in her nightlight and set her alarm. 
She did all those things that make the place exclusively hers.


She's so glad to be back in her own apartment!

Friday, June 16, 2017

It Was Like She Was Right There

Some friends and I were talking at work this past week and while one of them spoke, I got so excited because I wanted to tell them that Diana had come over... but then I caught myself. (One of the few times I actually thought before I spoke.) 😇

What actually happened was Sharaya came over and we were gonna look at some pictures (old negatives) she had just put on CD's and while she was here, she FaceTimed Diana. The three of us (Chuck and Beth were both at work) sat at the table 'together' and looked at photos! We talked and laughed and reminisced... it was so much fun! I felt like I had actually spent the day with the two of them. 

These are a few of the pics we were looking at:

They're from our East Coast trip back in 2004. Man that was fun! Flew into New York, then rented a van and drove from Massachusetts to Florida, sightseeing all the way!

My back continues to improve every day. Mornings are the worst because my muscles and spine are so stiff and it takes me a while to get out of bed. The first thing I do is fix a cup of tea and put the electric heating pad on my back. It only takes a half hour or so for everything to relax and then I'm fine the rest of the day. The good thing is I haven't had any more pain. As long as I don't over do it.


We're making progress on Beth's apartment. Today I took her microwave downstairs and just cleaned up a few things. She has a bookshelf in the upstairs bedroom and one downstairs so she's been transferring some of that. Plus clothes from her closet, her movies, books...

Her and Nick keep making plans for him to come over but it just hasn't worked out. She keeps putting it on the calendar, then crossing it out. We're hoping we'll have her all moved in by next weekend! Then he can come over and see her 'new' place.

Do any of you have a favorite FaceTime story? 
I hope you have a wonderful weekend!

Monday, June 12, 2017

Have You Ever Had A Reason To Sleep Sitting Up?

We still haven't moved Beth downstairs to her apartment. I recently spent a lot of time on my feet at work, then came home and painted the daylight basement.

My back was not happy.
(I was hit by a car when I was 12 and injured my spine.)

I've been in so much pain lately, not able to sit, stand, walk, lie down. The pain has been excruciating. 

It started about 3 weeks ago and I went to the doctor and was told that my spine is very stiff and the surrounding muscles are "white knuckled" they're so tight. I'm now seeing a physical therapist and am using heating pads to relax the muscles.

I've spent the last two weeks trying to sleep sitting up on the couch. When I couldn't sit up on the couch any more, I'd try sitting up in Chuck's recliner. Chuck even brought in one of our lawn chairs to see if that was any better. It helped temporarily.

I haven't been able to move without intense pain. I've had back pain my entire life but it usually subsides after 2 or 3 days but we're going on three weeks now. And this has been the worst back pain I've ever had. 

Chuck's been doing the cooking and grocery shopping and Beth's been doing a few extra chores.

Three weeks!

But last night I think I turned a corner. I was able to sleep in our bed and woke up without too much pain! I'll continue to see the physical therapist for a few more weeks but I think I'm on the mend. Hallelujah! 

Friday, June 2, 2017

It Works Every Time!

We've taken more than 35 road trips to San Diego over the last 28 years.

We would leave Seattle very early in the morning, sometimes the girls would still be in their pajamas, Chuck and I would fill our travel mugs with hot tea or coffee and we'd head out before the sun came up.

We'd drive from Seattle to Redding, California the first day, then from Redding to San Diego the next. That equals out to about 10 hours of driving each day.

We would stay at a hotel that served breakfast and that would save us money and time. We'd all go down to eat together, then after breakfast Chuck would take the van to fill it with gas while the girls and I would go back to the room to brush our teeth, braid hair, repack suitcases and check under the beds for lost toys.

After a while on the road, it would be time for lunch so we'd try to find a McDonalds that had a play place.

(Thanks Google.)

 Chuck or I would stand in line to order lunch for just the two of us while the other one took the girls right to the play area. They would play and play while we ate our lunch.

"Mom, look at me!" "Dad, watch this!" We were both able to focus on them while we casually ate, sort of like a date. Sort of. 😉

They would eventually come over, hot, sweaty and tired and we'd tell them, "Only 10 more minutes!" and they'd laugh and dash back out to play some more.

When it was finally time to go, I'd take them to use the bathroom and wash and wash our hands while Chuck ordered their lunch. Fries, chicken nuggets, apple slices, no wait. They didn't have apple slices back then. Well, we only got finger foods that wouldn't make too much of a mess in the car, then we get them all buckled in and hand them their lunch.

After playing hard and having a full tummy, they would read or quietly play and eventually...

  It worked every time!

Tuesday, May 30, 2017

So We Let Her Go With The Bright Pink... With One Stipulation

Remember when I said we tried to talk Beth out of painting her room a very bright pink? Well, we decided it is her room after all so we told her she could paint one wall the bright pink but the other walls would need to be a softer shade and she agreed. 👍 

This is what the room looked like before we started painting. Diana painted it this way when it was her room and she did it completely by herself, all in just one weekend! (And she painted two other rooms as well that weekend!)

In this picture I'm standing by the door looking back toward the bedroom. She doesn't like sleeping in the actual bedroom so that will become her kitchen. We'll put her dining room table in there and her refrigerator and kitchen cabinets. This large room will be her bedroom on one side and her living room on the other.

This is after I had put on the primer. When the guy at Home Depot heard what colors we were trying to cover, he suggested I use a gray primer rather than white. It was a great idea, but the color he gave me was way too dark of a gray. We ended up having to do two coats of the pink to cover the gray. But I love doing a gray primer! It covered the original paint really well.

 She chose such a light pink for the rest of the room that it really compliments the bright pink. I like the way it turned out!

Now we just need to clean everything up and bring her furniture back downstairs. I'm so ready to have my house back and she's ready to have hers! 

Monday, May 22, 2017

A Recent Shock in the Rear View Mirror!

Sharaya sent me a text saying her car broke down and she had to have it towed and she was having a reeeeaaally long day and... could her and Allie come over for dinner?

Absolutely! I asked her what she wanted and went home after work prepared for her and Allie to hang out.

The loaner car she was given was a Ford Exhibition, the thing was huge compared to her car! I stood on the porch as they got out and Allie wanted me to come see their car. She wanted to keep it! 

I looked around the outside for few seconds and then climbed into the front seat. It was so nice inside! I looked in the rear view mirror and there was Diana sitting in the back seat!!


I jumped out of the car - I think I was still screaming - "Oh my gosh!! Oh my gosh!!" I gave her a huge hug and asked her what she was doing here!

"It's Mother's Day."

She had flown all the way from Pennsylvania to spend this weekend with me! Makes me cry all over again!

Sharaya had known for a couple of weeks and was able to keep it a secret from me. They also didn't tell Allie and surprised her at school just before coming to our house. Actually, no one knew! Diana surprised Chuck and Beth as well!

This is me and Diana in front of the loaner car. It's a re-creation because we were too excited to take pictures the first time! 💖

We spent time at the beach, went to Revelation Yogurt, it was SO good to hang out with her!

Allie loves to climb!

Downtown Edmonds.

 We went out to eat on Mother's Day, then came back here to open gifts, play board games and of course take some family photos!

I hope your Mother's Day was filled with fun surprises too!

Saturday, May 13, 2017

A Sibling's Perspective

When Beth was born in October of 1984, we didn't know that she had Down Syndrome. They told Chuck that night, while she was being measured and weighed, and they told me the following morning. What a roller coaster ride that was!

Two years later (almost to the day!) I gave birth to Sharaya. This girl is the most sweet-spirited, gentle soul you will ever meet.

I still remember the day that Sharaya surpassed Beth in life. Beth was 6 and Sharaya was only 4.

Since that day, Sharaya has coaxed Beth out from under a desk at school, been her partner in numerous kids choir concerts and defended her against bullies. So many things went on that I didn't find out about until the girls were adults. Even the other day, after reading Sharaya's blog post Chuck asked me, "Did you know about that?" Neither one of us did.

With permission, I'd like to share with you one siblings perspective about growing up with a sister who has Down Syndrome.

what could have been

Whenever someone asks me if I have any older siblings, I always say "Yes, but my older sister has Down syndrome." And there's a lot that's held in that "Yes, but" that people don't necessarily realize. "Yes, but I didn't grow up with an older sister who showed me the ropes or gave me advice about boys. Yes, but I didn't have an older sister who taught me about make up and hair or helped me learn from her mistakes. Yes, but I didn't get all the things that come with an older sibling. Yes, wasn't what it could have been." I love my sister but I have always longed for that older sister I never got. The older sister I had to become in place of the one I often needed. Who knows where my life would be right now if I had someone ahead of me, guiding me and showing me what NOT to do - what roads to take and which to avoid. 

The dedication to normalizing special needs kids is awesome and the mantra of "their lives are just like yours" is great and all but my life growing up (and still often now) is quite unique and challenging and that was always obvious to me even at a young age. As a kid who was bullied in elementary school for being the sister of a "retarded kid," it was MADE obvious. Thankfully we've come along way but growing up 30 years ago with a sibling with Downs was not a walk in the park. It was a life filled with bullies, loneliness and isolation. 

I didn't grow up with a big sister. I grew up past my older sister. I did all of the huge milestones that come with adolescents like getting my license and moving out of the house, all the while having this constant guilt-filled sorrow knowing I wasn't the one supposed to be doing these things first and the one who was, was just as heartbroken. When I announced my pregnancy 8 years ago, she didn't talk to me for 4 months and we both knew why. It wasn't supposed to be me. 

So when you ask if I have any older siblings and I reply, "Yes, but..." I really mean, "You have absolutely no idea."

Saturday, May 6, 2017

This Whole Marriage Thing - Should They Or Shouldn't They??

I keep going back and forth about Beth and Nick getting married. I sat on the couch the other day thinking about what would need to happen if they really do get married. I think it came down to just 4 or 5 things.

The number one thing is birth control. Beth does not want kids. Nick does. I know Beth is not capable of raising a child. From what I know about Nick, he isn't either. This is something we would need to sit down and talk about, and maybe talk about this over the course of many months. I would want Beth to have a hysterectomy or have him get a vasectomy. I know whether or not to have children is ultimately their decision but this terrifies me.

Beth absolutely, positively doesn't want to move out so that would mean Nick would move in here and they would live in the apartment downstairs. Okay, that could work.

We'd need to put in a bathroom downstairs, toilet, sink and at least a shower. That would take a little time to save up for, maybe his folks would be willing to help a little with the cost?

He would need to get a job coach to help him get a job or a volunteer position somewhere. Right now he lives with his parents and they're retired. He goes out twice a week, the rest of the time he hangs out with his parents. Beth is gone 6 days a week. Chuck and I still work. Would he just hang out in their apartment all day? I think he would be bored to death! So we'd have to find something for him to do.

Maybe I should quit my job? Become a caretaker of sorts. Who would take them to the doctor if they got really sick? Who would help them pay their bills, buy their groceries, call in their prescriptions? I know they can do most things on their own but who would help them with the rest? Maybe I could help them and continue to work.

So I sat down with Chuck and told him that I really thought we could make this work. Maybe they really could get married! But then he brought some things I hadn't thought of before.

Yes, Beth and Nick love being boyfriend and girlfriend but could they really live with one another? Twenty-four hours a day, seven days a week for the rest of their lives? Marriage is hard!

Beth is quiet and needs her alone time. 

Nick is very talkative and loves to be around people.

Beth is shy and is learning to even just look at Nick, look at his face when he talks to her.  

Nick often forgets about personal space.

They both have their daily routines and I know Beth doesn't like it when her routine is disrupted. 

Beth is very passive and Nick can be controlling. That may seem like a perfect fit except that Beth does not like to be told what to do. She's an adult and can make her own decisions, thank you very much. Although she won't tell you that. She'll just stomp her foot or begin to cry or sit and pout (yes she still sometimes pouts, although it's rare nowadays.)

Nick has grand ideas - he and Beth will get married and drive to Los Angeles and he'll be in the movies. And be a fireman. And they'll buy a big house. And they'll have lots of kids...

Beth doesn't want anything to change. She likes her life just the way it is. 

I know she doesn't understand what marriage would require of her and I know she doesn't know how to argue or stand up for herself.

Would getting married be the best thing for these two?

Would Beth be able to live so close with someone else? Would Nick? 

Even if we could figure out all the 'simple' things like putting in the bathroom, what about the emotional aspects of marriage. Marriage is hard and it takes compromise and trust and teamwork and selflessness and commitment... Are they truly capable of making the decisions and choices that come with marriage? Do they have the mental and emotional stamina? 

Beth told me the other day that Nick is planning to buy the engagement ring.

Saturday, April 29, 2017

Well You Don't See THAT In Seattle

On one of our many trips to San Diego, we took a detour through Colorado and stopped to see Chuck's mom and sister. Then we continued south to see my sister in a teeny, tiny town called Walsenburg.

We followed my sister and brother-in-law in their truck because we'd never have found their property on our own. We turned off the main road and onto a dirt road.

And we drove.

And we drove.

Eventually a herd of cattle began to run along side the truck! We couldn't believe it! You know you're in Colorado when you share the road with the cattle!

You can see we aren't driving in the ruts because there were 7 people in our 7-person van and we kept hitting bottom! Not fun for the people riding in the back. After more than 20 miles, we finally arrived at their property.

Me and my sister Kathy

My sister showed us around the property, where they're planning to build their home, where they've built the well. It really is a gorgeous place and you can see forever!

As we walked around we could see the clouds were getting thicker so we decided to head back. Chuck is a walking GPS so we made it back okay but not before driving smack into the middle of the rainstorm.

It POURED! Then, as fast as it came, it was gone! It was crazy!

By the time we got back to civilization, our van was barely recognizable! Wow! We've driven a lot of miles over the years but it's never been that dirty before!

Welcome to Walsenburg!