We Did It! The Sleep Study Is Over

A few days before Beth was supposed to have the study done, I took her to the clinic to get a look at the rooms and talk a little about what was gonna happen. She asked how long we'd be there, what day we'd be home... We've learned it helps her when we explain things ahead of time and give her the timeline. 

(We went to New York in 2004 and Beth was so mad the whole time. Until we figured out that she thought this was our life now. Once she learned it was temporary and we'd be back home soon, she perked right up!)

Just one of a few pictures we have like this:

So now we always plan ahead. 👍 

On Thursday we got to the clinic at about 8:30 and they took us to the room. We immediately felt like we were on vacation, it was so much like a hotel room. We loved it and made ourselves right at home!

 

The tech came in and started hooking Beth up to all the wires, gosh there were so many! Beth watched Madagascar 3 while the tech and I (why can't I remember her name?!) talked about traveling. 

(Sharaya and Diana are actually in New Orleans right now and the tech - I'll call her T - took her husband there for his birthday a couple years ago.)

We sat and watched TV for a while before climbing into bed. T brought in a cot, basically it was a roll-away bed for me to sleep on, and turned out most of the lights. When we were finally ready for bed, I think it was about 10:30, we called T and she came in to help Beth get into bed.

That large pad with all the wires coming out of it actually attached to the wall and transmitted all the data so she didn't have to sleep with that but there was still a lot of stuff! After she got into bed, we had to straighten all the wires out and then we turned out the lights and went to sleep.

I woke up at about 3:30 and just watched Beth for a few minutes. She hadn't moved at all since we crawled into bed and I saw her reach up and scratch her neck. But it was very controlled and methodical, like she was awake. I of course laid there wondering if the lamp we left on was keeping her awake but she didn't want to wake me to tell me. 

So I got up to check on her and she looked like she was asleep. I turned the lamp off and they had a pretty bright night light built into the wall so I quietly went back to bed.

T came in at about 6:00 to wake us up and the first thing Beth said was, "I did it!!" 

She had told me before we got there that she was a little nervous, but she really did great! We got up and T took all the equipment and the stuff off of her and told us there was a survey we needed to fill out on the computer. I sat back and let Beth do the whole thing. She read the questions out loud and then clicked on the appropriate answer. 'How well did you sleep?' 'Did you have heartburn?' One of the questions asked if anything had woken her up during the night. "Yeah. When you turned off the lamp." Oh. 😀 Whoops!! So she wrote, "When my mom trun off the lamp." (Yes, trun!)

T said they got some good data and that Beth did really well. We went home, took a shower and got all that waxy goo stuff out of her hair, then decided to go to breakfast to celebrate!

 

Strawberry crepes with a side of hash browns for the win!!

Child-Like Or Childish? And Where Do You Draw The Line?

I've read some blogs and Facebook posts from parents who are angry that someone said their son or daughter with special needs was like a child. Some of the phrases I've read - and heard, "They will always be like a child" "Perpetual children" and "So child-like."

But I wonder if some parents think it means their child is childish. 

When I hear phrases like that said about Beth, I try to remember the heart of the person saying it and 99% of the time, they're not being mean or facetious. They just notice a child-like innocence about Beth that honestly, most adults no longer have.

Beth isn't cynical
She doesn't look for the bad in every situation
She looks at the heart of a person
Doesn't care what clothes you wear
Won't judge you by your shoes
She forgives easily (when she understands the situation)

But you know what, Beth also has a lot of childish qualities. 

She still eats garlic bread by taking a huge bite right out of the middle. When I suggested she cut the second piece, she did but she wasn't thrilled about her mom telling her how to eat.

She eats too many sweets. Her idea of a snack is a half a bag of marshmallows. And when I suggest to her that those are not healthy and she shouldn't eat them, she gets mad at me. 

Then I have to remember, "How did I feel when I was in my 30's and my mom would tell me how to live my life?" Course, now I realize my mom was right, but at that time, those poor decisions were mine to make and I was gonna make them if I wanted to!

That's one of the privileges of finally becoming an adult. We get to make our own decisions! Good or bad. No more mom and dad telling me what to do, I get to choose for myself!

So where do I draw the line with Beth? When do I let her make those poor decisions like a real adult and when do I step in and tell her how to live her life?
 
That is the age old question for every parent of a child with special needs.

I remember when she was a teenager and still wanting to watch kids shows, like Dora the Explorer. I would occasionally let her, thinking she knew all the answers and maybe it made her feel smart. I don't know. But I also remember finally saying no. I would turn on something a little older like iCarly. And I noticed those were the shows she really liked and she never went back to the younger ones. 

I will always step in when I see Beth being childish, but I believe she will always be child-like. And I'm okay with that. 

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!

"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?

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!!)

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!

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!

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.