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!!

Aaahhhhhhh!!!!! 

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, but...it 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!

Tuesday, April 25, 2017

Flip Flops, Well, Because

On some of our trips we can drive up to 12-13 hours in a day depending on where we're traveling, what the destination is and how long it's gonna take us to get there.

One of our best friends on a road trip is the truck stop. Now, before you call me crazy, hear me out.

Truck stops today are a lot different than they were 30-40 years ago. My dad was a long-haul truck driver and I rode with him a couple times when I was in high school and believe me, truck stops are different today. They're not the small, dark, smoke filled places they used to be.

One of our favorites is the Flying J. This thing is like coming home.

(All pictures are compliments of Google.)


We've been driving a while, everyone's acclimated to the air conditioning in the car. We pull up to the pump (we've learned over the years to wear sandals or flip flops in the car, easy on and easy off) begin to move our muscles as we find our flip flops, unbuckle our seat belts and open our doors. 

Then usually a blast of heat hits you as you step out into the sunlight and s-t-r-e-t-c-h!!

Now the Flying J Truck Stops are huge inside. The bathrooms are always so clean, they have full showers for all the truck drivers, and there are usually a couple restaurants attached like Subway, KFC, etc.




They have everything you could want. From motor oil to movies, from flashlights to clothing. Anything a trucker might need out on the road, they carry it. Which means they probably have everything you'd need while out on the road too!



And the snacks! Oh my, we've spent a long time inside the Flying J trying to decide what to buy! The girls and I use the bathroom while Chuck fills the tank and washes the windows. Then we all meet inside to get a snack and something to drink. 

Then you get that blast of heat again as you walk out the door (just thinking about it has me smiling!) and head back to the car.

Everyone shuffles their stuff around trying to figure out what they're gonna want with them for the next part of the trip.  The flip flops come off and the head phones go on.

Then we buckle up and settle in for a relaxing, stress-free ride on the open road.

Friday, April 21, 2017

More Than Yep (A Detour From Road Trips For A Minute)

Beth has never been much of a conversationalist but often she wouldn't talk at all. In fact, for most of her life she'd cry when something didn't go right. Or when something didn't work the way she wanted it to. 

Or she got her feelings hurt.

Or someone cut in line in front of her.

Or someone got a bigger piece.

For 99% of the things in her life she would just stand there and cry. Or she'd put her head down, walk away and cry.

I've told her, our whole family has told her, "Beth you need to talk. What's wrong?" "Beth, use your words." 

We've tried encouraging her, "Beth, we can't help you if you don't talk to us." "Beth if you want some help, you have to ask. Use your words."

Finally, after years and years, I gave up. When something happened and she would start to cry, I'd look the other way. Or I'd walk away. 

Or I'd just stare at her. 

She knew what I was gonna say anyway.

Eventually she stopped crying but she still wouldn't use her words. Even if she just wanted to say Hi to someone, she'd walk up to them and just stand there. Often they wouldn't see her and they would talk to someone else or they'd walk away but she never said a word!

But lately...

I saw her the other day at church - I so wished I had taken a picture but I was talking with someone else and didn't want to be rude - but I heard some women laughing and I glanced over to see Beth standing there with 3 other women, she had her phone out and she was showing them pictures! I heard her tell them about our trip to Snoqualmie Falls the weekend before! And these women were all facing Beth, she was leading the conversation!

Then last night at the grocery store, she was paying for her groceries and I was helping the bagger (he has special needs) with some special food items and as I finished and looked up, I heard Beth say something that I couldn't quite make out but then the checker laughed and said, "Oh you're right, I'm so sorry!" and he handed her some cash back. Beth said thank you and we were on our way.

Before we headed to the parking lot I stopped and told her how proud I was of her for speaking up. I told her she talked and everything worked out great; that she didn't cry and she got what she needed. "That's excellent Beth!"

She smiled and said, "Yep."

Wednesday, April 19, 2017

A Pool Slide on Steroids!

It was 17 years ago today - April 19 - that we pulled back into our driveway after an eight-day seven-state road trip. We headed to Colorado to see Chuck's mom and sister but planned a few stops along the way.

In April of 2003 Diana was 12, Sharaya was 16 and Beth was 18. They were Road Trip Masters by this point. We booked a night at the Econo Lodge in Rapid City South Dakota for one reason and one reason only.

The pool.

Not only was it an indoor pool, but it had a slide. And this wasn't just any slide!


This was a slide to beat all motel pool slides!


I don't think Diana went on it but Sharaya and Beth had so much fun! We wish every hotel had a pool like this one!!

The next day we got up and headed to Mount Rushmore. Now I've heard people complain about it because technically it's only a bunch of rocks. But it really is fascinating, the enormous size of those faces, the passion Gutzon Borglum put in to all that work, as well as the beautiful scenery.

There is an interactive area with videos and models of the mountain, history, artifacts, and the gift shop. 


But once you head out to see the mountain and carvings themselves, everything changes. Behind a large amphitheater you follow a trail that takes you around the mountain, kind of winds back and forth giving you different perspectives of the carvings.





 I love a good zoom lens!


 They've even cut a path through the mountain.





One of my all-time favorite photos of my girls is of them at Mount Rushmore. I took it while they were trying to look through one of those tourist telescopes. I've been typing, then deleting, then typing and deleting, trying to explain why I like it so much. It's the three of them together, it's spontaneous, we're on a road trip, we're at a National Monument... I don't know, I just really love it!




Have you ever been to Mount Rushmore? Have you been to other National Parks or Monuments? Do you have a favorite?

Saturday, April 15, 2017

Our Very First Was With Our Second

Our very first road trip was in 1986 and was actually from San Diego to Seattle. Chuck had an aunt and cousin that lived here and we decided that year to visit them for Thanksgiving.

 Beth was 2 and Sharaya was just 1 month old.

 Home from the hospital

I remember they both slept almost the entire way. Well, not really but they sure slept a lot and we couldn't believe how easy it was! To be honest, I don't remember a whole lot about the road trip itself.
Beth - the hood of the car was warm!



Chuck and Sharaya 



I do remember we stayed at a Motel 6 in Weed, CA and we were at the base of Mount Shasta. We didn't have mountains like that in San Diego and waking up in the morning, seeing this majestic, snow-covered mountain was just spectacular!

It's been more than 30 years but I've never forgotten the sight of that mountain on that cold, November morning. (Wouldn't you know it, I've spent 3 days looking for the picture I took of our car at the motel with Mount Shasta in the background and I can't find it anywhere.)

These pictures will give you some perspective of the mountain in relation to the geography around it. (These next 3 pics are courtesy of Google.)



This is Mt Shasta, taken from the parking lot of the motel we stayed in.
 

But this is what it was like when we were there. In fact, it had snowed the night we stayed at the motel and even though there was no snow on the roads (thank you Lord!) the air was cold and there was snow on the trees when we woke up. It was a spectacular site!


Thanksgiving was wonderful. It was so much fun being in Washington and with Chuck's family, they told a lot of stories about him growing up!

Mary Ellen and Aunt Virginia



The 4 of us all slept in one room, the girls were in the playpen (Beth was 2, but small so they both fit) and Chuck and I in the bed. It was pouring rain and the thunder was so loud I thought it was gonna wake up the girls but thankfully they slept through it. Chuck and I laid in bed and listened to the pounding rain, the thunder and lightning, the sound was deafening and I was so scared! It shook the entire house! I'd never experienced anything like that and I told Chuck I never wanted to come back!

Despite the rain though, we did have a great time. Our very first road trip was one to be remembered and it began a passion that has lasted many years!

By the way, two years after that trip to WA State, we moved here. Never say never! :)