Monday, November 12, 2018

They Were Happy He Didn't Have Down Syndrome

Beth is our oldest and when I got pregnant with Sharaya a lot of people asked me if that was the wisest choice since we had Beth to take care of. What if this baby has Down Syndrome too? I had never really thought it but but we just told them that if this baby had Down Syndrome, then we'd know what to expect. We really weren't concerned about it either way. 



Now, I will admit that when Sharaya was born, the first thing I asked Chuck was, "Does she have Down Syndrome?" When he said no, it was such a huge relief. But we didn't live our lives like that, thinking Beth was a burden and she made our lives so hard... she was just Beth. One of our three girls. (How Chuck survived all those years I'll never know!)







Beth was Beth and that was that. We lived our lives. We've never been easily offended, or hurt when someone said an insensitive comment. We've just never taken that stuff personally.

So I was really surprised the other night when I heard a testimony at church from J who said a friend had been told her unborn baby had Down Syndrome and 2 holes in his heart. But after family and friends prayed, the baby was born perfectly healthy. No holes and no Down Syndrome!

The church exploded in praise and cheers. And I sat there thinking, "Wait a second." I was clapping too but something just wasn't right. For the first time in over 34 years, I felt... Well I don't exactly know what I felt. It was this odd feeling down in my heart.

It was such a real feeling too, kind of a mixture of sadness and isolation and shock. It's really hard to explain it.

Like you've just heard your best friends taking bad about you behind your back.

"Is this what you've thought all this time? Is this how you all really feel?!" 

It was like they were so excited he wasn't gonna be like Beth. But all these years I thought you all liked Beth?!

She's grown up there, attended for 30 years and all that time she's been the only person with Down Syndrome. And at that moment, when everyone cheered because he wouldn't be like Beth, I suddenly felt so isolated.  

But I was telling Chuck it wasn't so much about their reaction to the news about the little baby, but that feeling I had. That very real, first-time-in-my-life isolating feeling.

What was that? And why would I feel that way now, after all these years? Stuff like this has never bothered me before, why now?

Thursday, November 8, 2018

Yay!! We Have Internet Again!!

Just before Chuck left for work Monday morning our power went out. I'm SO glad it happened when it did cause just a few minutes later and he would have already gone to work. 

Thankfully he came in and woke me up and when we both went out to the living room we realize it was awfully bright for us having no power! Well there were two utility trucks parked by our house and they were actually blocking our driveway.



 Beth is afraid of the dark so in just a matter of seconds she was coming up the stairs, with a scared, frustrated tone in her voice, "My light went off!" "Yeah, Beth they're working on the power pole out front."


 Chuck headed to work and I got out some candles. Even though it wasn't even 5:00 yet, I knew we were up for the day! Beth crawled into Chuck's chair and ended up falling back asleep while I ate breakfast and got ready for work.

 
By the time I got ready to leave the sun was coming up. I woke Beth up to tell her goodbye and I know she doesn't like to be home alone in the dark so I opened the blinds to the backyard so she could see it was actually morning. She said a very surprised "Oh!"  so I knew it was okay to leave her.

By the time we got home, a new power pole had been put in and our electricity was back on, but we had no cable or internet. I was kinda shocked that PUD would just cut all those lines, restore their own and then drive away!

When Chuck called to get our internet and cable restored he was told we could make an appointment and they could come out later in the week. Seriously?! So Wednesday the Xfinity tech came out and sat in his truck for the longest time. I had a meeting to go to at work and when I went out to my car, that's when he got out and told me they probably wouldn't restore it that day because our street is just too busy to string lines across. I brought him inside to talk with Chuck and I went to work.

He promised they would come out at 2AM and restore everything then. I happened to wake up at 3:45 (this morning) and they still hadn't been here. Chuck called again and they finally came out this afternoon.

In the meantime, I called PUD and asked them why on earth they would just replace a power pole at 5:00 in the morning with no warning?! She assured me they would never do that and when I told her I had pictures to prove it, she put me on hold. When she came back on she told me that there had been an accident in front of our house early Monday morning and a car had run into the pole. So in an emergency situation, they just replace the pole without any notice.

I accepted her answer, you know of course these things happen but I realize now, they still should have put a note on our door AND let us know all the lines they had disconnected so we knew exactly who we needed to call to get everything restored.

And then this afternoon, while Xfinity was here, the guy insisted our land line was not with them, it had to be with a different carrier, the line hanging down in front of our big picture window was not theirs... when in fact, it IS theirs!! Grrr! Chuck even confirmed it when he got home so I know I wasn't going crazy trying to convince this guy! 

So now we have to call them back out... what a bizarre week this has been!    

Sunday, November 4, 2018

We Voted, Did You?

Whenever there's an election, we always sit down with Beth and help her fill out her ballot.

Now, we don't tell her how to vote, we just help her understand the issues. This week her and I sat down at the kitchen table and she watched me as I opened my envelope, then she copied me exactly. We tore off the tab at the top and I got the Voting Pamphlet. 

I read the issues out loud, then explain it to her in a way she'll understand. Which honestly helps me too! Some of those propositions can be really complicated, "Vote No if you want it to pass, Vote Yes if you want it to fail." Wait, what?! So I read them carefully and try my best to help her understand exactly what's being said.

We were glad to see the new way they have us vote here in WA State, by filling in the circle instead of just making a line. Beth loves to color!

   
I read the paragraph, then fill in my ballot and she fills in hers, then we move on to the next one. It takes a long time but we want to make sure she really understands what she's voting for or against.


Then we sign our ballots and put them in the envelope! Chuck and I always sign hers as witnesses because one time they let us know hers wouldn't be accepted because her signature wasn't exactly the same as it was the time before. So now we just sign them too and it's always counted. Then we lick the envelopes (Eewww gross! Why can't they make those things taste a little better?) and we're good to go!


And in case you're wondering, she did vote differently than I did on a few issues. 😲 😊 

Wednesday, October 31, 2018

You've Heard of Five Golden Rings?

Beth first started with Special Olympics back in 1994. She was on a swim team and ended up getting bronze at the State games that year. She was only 9.


Since then she's been part of Special Olympics off and on over the years. She's done basketball, swimming, track...  

These are the medals she's won throughout the years. Three gold, four silver and four bronze.



That large medal was the very first one she got. She's holding it in the first picture and you can see it's as big as her hand. They were huge back then but have gotten smaller over the years as more and more athletes participate. But this year, the medal was bigger. Not as big as the first one, but a pretty good size.

Being a part of basketball, we knew she wouldn't be able to keep up with the fast pace of a regular game so she was on an adapted team. They dribbled the ball, shot baskets from various places on the court, it was more like testing their skills rather than playing an actual game.



She loved it! One of the tournaments was held in Leavenworth, it's a small Bavarian-type town up in the mountains near here. So we got a hotel and had such a great time seeing the area and watching all the athletes. I think they won gold that time. (At least I think so because her medal looks gold in the picture!) 😁


Beth's on the far right


We suggested track to her one year and she did the fast walk, the shot put and I think one other thing but I can't remember now.  She seemed to like it but didn't get a call the following year. Not that you have to be invited but she struggled a little with her weight, would get out of breath easily and just couldn't be very competitive. So we decided to not to push it.


Then came bowling. She absolutely loves to bowl! Please don't say anything to her but she's not very good at it. After more than 10 years of bowling every single week with All Aboard and on Saturdays during Special Olympics, she still only gets a 56 or a 72. Every once in a while she'll text us from the bowling alley, "I got 114 on my first game!" It's a huge deal when she breaks a hundred! But she likes being there with her friends and the sounds and just everything about being at the bowling alley.

This year she was asked to be on a doubles team. There really wasn't anything different as far as qualifying went. Her and E bowled their own games as usual every week, but at the tournament their scores were combined. That was the only difference.


  
When it was all over, they won silver! They give them their medals right there on the lanes and everyone cheers and claps! It can be kind of emotional!










So now make that 5 silver medals! 

Saturday, October 27, 2018

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!!


Wednesday, October 24, 2018

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. 

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?