Sunday, October 21, 2018

Finally Did It

Growing up in San Diego, you just get used to seeing palm trees. They're everywhere. Especially at the beach.


Not long after we moved to Washington State, we took a road trip back down to visit family and as we got closer to the city, Sharaya asks from the back seat, "What's that?" She was maybe 4 or 5 years old.

"What's what?"

"That thing with the funny leaves on top."

What?!? We were horrified that she didn't know what a palm tree was! We had failed as parents.

We decided then and there we wanted to have a palm tree in Seattle!

When we bought our second home, Chuck did some research and found a certain kind that actually grows here! So one year for Mother's Day he surprised me with my very own palm tree!

It's a Trachycarpus Wagnerianus or Windmill Palm and I absolutely love it! 

This was in 2003, right after we planted it. You can see we hadn't even buried the edging yet.

  

2009


 I've planted succulents around it, thinking cactus-type plants would be perfect with it but I found the fronds got really tiny, I mean really small! So I took the plants out and the fronds got big again.


2015
 


My dad has lived most of his life (almost 94 years!) in San Diego and absolutely loves the idea of us having a palm tree in our backyard. Every time I talk to him, he asks about it; how it's doing, how tall it's gotten, so now every year I take a picture and send it to him. 

April 2016

 
July 2018
 

I've tried to figure out what I could plant underneath it. I've had flowers and all kinds of things over the years, and even though it looks so nice when everything is blooming, it's been so hard to keep up with it. I'm constantly pulling weeds and watering and I finally decided that I was done.



The one thing I've always wanted to put under it was sand. Just plain ol' sand. That's one of my favorite memories about being at the beach: the crashing waves, all those palm trees and the sand under my feet! So after all these years I went to Home Depot and picked up 9 bags of sand. What a difference! No more weeds, just beautiful, soft sand.




If feels more tropical now, like it's finally finished. I know Allie's gonna love playing in it, and now I go out in the morning to see what kind of critters have been walking around in it during the night!


Friday, October 19, 2018

"It Doesn't Define Her" - What Exactly Does That Mean?

Many years ago someone complimented me on how we had raised Beth and said that "You can tell you didn't let Down Syndrome define her." I said thank you but I've always wondered what exactly that means. Even before she said it, I've thought about that phrase over the years and tried to figure out what exactly people mean by it.

And please know my heart here, I'm being genuine. I just want to think out loud for a few minutes so feel free to interject at anytime. :)

Sometimes I think Down Syndrome does define Beth. It causes low muscle tone and slower reflexes and for that reason, Beth isn't able to drive a car.

She never learned to balance a bike and never rode again after we took off the training wheels. (We took them off once but she struggled for such a long time, we put them back on and she eventually got so big for the bike that they broke. And they didn't make training wheels any bigger.)

Having Down Syndrome causes her tongue to be larger than normal and that affects her speech. And when she got old enough to realize people couldn't understand her she became withdrawn and shy.

Would she be shy if she didn't have Down Syndrome? I don't think so because when she was young, about 7, 8, 9 years old she was outgoing and friendly, even to strangers.

In the dictionary the word 'define' has this definition:
-To be what characterizes something
-To describe precisely
-To mark the limits of
-To outline clearly

A few posts back I wrote about the day both Beth and Sharaya were born. To be honest, it was really hard to not mention Beth having Down Syndrome. I kept going there, and then would delete what I had just written because I really wanted it to just be about her birth and not her diagnosis. But it was really hard.

So is Beth defined by Down Syndrome?

-- Or --

Does the term "It doesn't define her" mean that she has hobbies? Like she goes swimming or horseback riding? That having Down Syndrome doesn't stop her from doing the things she likes? Is that what it means?

Is it that she tries new things that people think she isn't able to do? That people think having Down Syndrome would limit her abilities? But I think the phrase "Down Syndrome doesn't limit me" would apply better. (Apply better. Is that a real term?)

Anyway, what are your thoughts on this? What do you think it means?

Sunday, October 14, 2018

Celebrations

Sharaya's birthday was first and she decided she wanted to go to Ivars - Acres of Clams in downtown Seattle. We all went in Chuck's car to help with the parking situation and even though their website said they had Valet Parking we never found it. But we found a spot pretty close so it was okay.

(Thanks Google!)


This was taken (thanks again Google) from almost the exact spot where we ate. We had a beautiful view of the sunset!


Waiting for our seats



We got her a one-year membership to MoPOP, the Museum of Pop Culture. Her and Allie love it there so now they can go whenever they want!

(Wow Google, you're being so helpful tonight!)






Beth wanted to go to Olive Garden for her birthday dinner. We love that place!



 After dinner we came back here for cake and ice cream... and presents. Sharaya got her the cutest bag for her to carry her stuff back and forth to All Aboard each week. Isn't this the cutest idea?!






We got her tickets to go see The Lion King but it's not until January. She was pretty excited about it though! I printed off this picture for her to open and she squealed when I told her we were going!


After Beth opened her presents, we played a few rounds of Mexican Train and then had cake and ice cream. We had to let all that pasta settle a little bit!






It's been a fun-filled week!
 (We missed you Diana!!)

Wednesday, October 10, 2018

Happy Birthday Beth!

Like this year, October 10, 1984 was a Wednesday and Beth was born at exactly 10:00 at night. 10/10 at 10.

She was an emergency c-section and when Chuck held her for the first time, he brought her over for me to see (I was behind that blue 'wall' they put up so you don't see the procedure) and I remember thinking she was the most beautiful baby!!

Beth began sleeping through the night while we were still in the hospital... first Beth did, then Sharaya. I was spoiled!

(Our camera didn't work in the hospital although we didn't know it until days later when we developed the film.) 😞



One of her first car rides.


Beth was an easy baby. She slept well, although she couldn't nurse. As hard as she tried she just couldn't latch on but she ate well from a bottle!

   
I wouldn't say she was easy to raise but Beth is a gentle soul who keeps to herself and loves everyone she meets.


Two years old


I love you Beth! 

Happy Birthday!

Saturday, October 6, 2018

Sweety Bear

October 6, 1986 was a Monday and she was born at 9:45am.


She was a c-section so I had 4 days in the hospital with her. It was such a sweet time of bonding. I remember absolutely loving that time with her, feeding her, changing her clothes and just talking to her!

She slept through the night from the very beginning, even in the hospital! I remember getting 6 hours of sleep one night and the nurses were very impressed with her!

 
She was so easy going.
And was always happy.
Well, okay, not always happy, but pretty close!








As a toddler I played a record for her - a 45 - that I'd had since I was little girl called Sweety Bear and I'd play it throughout the day. She loved it! We started calling her Sweety Bear and she'd raise her shoulder and sort of turn her head and look at you all cute. She was adorable! 
 
  And now as an adult she has a bold determination to the way she lives her life. Raising her daughter to to be a strong woman and to      fight for what she believes in.

You're an incredible woman Sharaya!

I love you and I hope you have an amazing birthday!

Wednesday, October 3, 2018

Getting Nervous About Beth Having A New Sleep Study Done

Earlier this year we got notice that Beth's Primary Care doctor - Dr T - would no longer accept her insurance. We could get new insurance or find a new doctor and since Beth has been seeing her for decades, we decided to get new insurance.

It took a few months, lots of phone calls and paperwork to get everything transferred over but we finally did it. And while all of this was going on, Dr T referred her to a Sleep Medicine doctor - Dr M - because I was hearing her gasping for air during the night. We were able to do a home study and Dr M got enough info to give her an official diagnosis of sleep apnea.

Well, a couple months after starting the Cpap machine, we got a call saying Dr. M doesn't take the new insurance. 

Sigh.

So I found a new sleep doctor, Dr G. Then I sent Dr T all of his information and set up an appointment with him. 

Dr T sent them Beth's records and the results of her sleep test. Dr G's office mailed us paperwork to fill out and I had to go on-line to fill out more paperwork that took almost 30 minutes. After already doing all this for Dr M!

Beth had her first appointment earlier this week.

It was pouring rain when we got there.





They took her vitals and then Dr. G came in. He asked a few questions then said he wanted her to have a full sleep test. In the lab.

(Beth had a sleep test done in the lab before she had her tonsils out and it was a disaster. Granted it was a long time ago, but I'm still nervous about doing it again.)

Beth usually doesn't go to bed until midnight or later but we have to be there at 8:30. 

The more I think about this the less I like it. Were the other tests inconclusive? Why are they having her do another one?

One good thing is that I get to be in the room with her this time. But she rarely talks when she needs something. Will she tell me if she needs to go to the bathroom? Here at home she uses 2 night lights, but the room in the lab needs to be dark... I don't know, the closer it gets the more nervous I get.   

Saturday, September 29, 2018

What Beth Has Been Up To

I snapped this picture of Beth and Allie when we were driving home from the airport after our trip to San Diego.

 

We went to the mall the other day and did some shopping at JC Penney. I parked in the parking garage like usual and then realized we had to go up stairs to get socks and other things she needed.

After we had everything, I suggested she look for a new shirt. She rarely buys clothes, usually only when I encourage her to buy something. So we headed back down the escalator and looked and looked for her size, only to find out they were back upstairs! :) 

  
She's drawn to bright colors and found a really cute shirt that she wanted to try on. We were so excited when it fit her around the waist and in the shoulders! (I find most of the shirts she tries on are too tight at her waist or really baggy up top.) But this was just right! I guess I should have taken a picture of her in it! She's worn it a couple times already, I'll try to get one next time.

After we bought everything, it was back downstairs to the car!


I was walking through the foyer last Tuesday evening and spotted her sitting in a chair.


Sound asleep!! She's been sleeping a lot: if we're in the car for just a few minutes, when we're in the waiting room at the doctor's office... I know she hasn't been using her CPAP machine a lot so I had her watch a video on 'how to gain confidence' when using it. We went on line and looked at her results. I showed her how many hours a night she wore it, how many times she took the mask off and on during the night, they keep track of all that for you.

  
She did really well the night after we watched the video but is struggling again to wear it more than a couple hours each night. Thankfully we see the sleep doctor on Monday. 

So what have you been up to lately?

Wednesday, September 26, 2018

Lifeguard Rescue

We had been at the beach for a little while and Chuck and I were up on our 'spot' in the sand and our girls, plus The Cousins, their spouses and kids were all playing in the sand or out in the water.

The weather was gorgeous: blue skies, temps around 80 and the water wasn't as cold as we expected. It really was as close to perfect as you could get.

 


All of the sudden we heard the sound of the lifeguard jet ski as it splashed through the waves heading out to get someone. It happened a couple times while were there and just about everyone on the beach stops what they're doing and watches.

 
As we see it go close to a couple people Chuck asks, "Is that Sharaya?"  I asked him why he thought it would be her and he said it was about the same area where she and Jess had been before. (Jess is my nieces husband.) I stood up to get a better look. 

The person grabbed onto the board on the back of the jet ski and they started bringing them back in. Chuck says, "That really looks like Sharaya!" By now I recognize the black bathing suit and I'm walking faster to the area where they're bringing her closer to shore. I realize at that moment that the rest of our family has left the water and they're coming over too.

The lifeguard stops in about 2 feet of water and Sharaya gets off the board. It IS her!! I could just feel my heart pounding, I knew she was okay but oh my word!! We all gathered around her and just bombarded her with questions: "What happened?! Are you okay?! Did you motion for the lifeguard?!" "Did they just see you?!"

Looking back now I could tell she was absolutely exhausted and we should have let her get back to the sand and sit down but I think we were all just so concerned and scared!

She said that her and Jess had been out far enough that they couldn't touch the bottom and they just were treading water for a while. But then she started to get really tired and as hard as she tried to swim in, she wasn't going anywhere. She thought about trying to swim again when the lifeguard showed up. She figured she could make it on her own, but decided to go with him instead.

And we're so thankful she did!

Of course her cousins couldn't let it go by without getting in a few jabs, "Yeah Sharaya, we know. You just wanted to meet the lifeguard!" "Did you get his number?!"

I will forever be grateful to the lifeguards at La Jolla Shores for seeing my daughter way out there in the water, noticing she was getting tired, and keeping their eyes on her as she tried so hard to swim in to shore.


And especially to Lifeguard Tower 31 for getting on the jet ski to go get her.




 That day could have ended much differently but they saved her life and I will be forever grateful.