Wednesday, October 22, 2014

It's Hard to Recognize it Anymore

Diana and I were at the mall a while back and we saw a mom with a stroller and the little girl inside looked like she had Down Syndrome. The moment we saw her, we both looked at each other with huge smiles and got so excited!

Course, we felt like we had to be cool around the mom, we didn't want to seem creepy. We were in a store, so we went around a few displays and came back to them again. She was with 2 other women and they were on a mission, you could tell. They were shopping for something specific and kept talking and looking at things, anxious to find what they were looking for.

It's so exciting to meet someone who has that little something extra! Diana and I kept trying to find a way to introduce ourselves without being overwhelming and then I got a little nervous. Her daughter was maybe 2 years old, maybe mom wasn't thrilled to have a baby with Ds? Maybe she was in that stage of anger or denial? How could we approach her, when mom maybe didn't even want to talk about it? I really wanted to be sensitive to her situation.

We decided to just leave the store cause we felt like we were being stalkers. There was another store Diana needed to go to and after being there a few minutes we turned around and wouldn't you know it, there was the mom again! Diana and I looked at each other, KNOWING we had to say something, but what? What should we say??

As she walked by, I smiled at her little girl, she smiled back at me (mom was so focused she didn't even see me) and I wondered, 'Wait a second, does she have Down Syndrome?' Her face was SO familiar, I began to wonder. How do you say, "I have a daughter with Ds too!" when this little girl actually might not have Ds.

I tried to focus on her eyes, 'Were her eyes almond shaped? Was that really the face of a little girl who has Ds?' I started to get so nervous, I wasn't sure anymore! And then they left the store.

We wandered down the mall in the direction we thought they had gone but never saw them again. I truly wonder if she really did have Ds. That face has become such a familiar part of our lives that it's hard for me to recognize it anymore.

It's no longer the face of Down Syndrome. It's the face of Beth.

Wednesday, October 15, 2014

Birthday Pictures


Beth's birthday was on Friday, October 10th, but the big celebration was on Sunday.

Beth's boss gave her the 10th off, so we asked her what she wanted to do. "Bowling!" Of course, we should have known. Sharaya and Diana had to work, but Chuck, Beth, me and Allie all went bowling. It was at the same bowling alley where she plays on a league during the week and they greeted her by name when we got to the counter! Considering there are 150 bowlers on the league, we thought it was kinda cool that they knew her personally.

Usually on the kids birthdays they get to choose the menu. We started this when they were kids and even though they're all adults now, the tradition continues. Considering this was the big 3-0 we decided to go out to eat and a couple months ago she said she wanted to go to Olive Garden.

Really?? We rarely go to Olive Garden. We figured she had heard it from one of her friends and since she was 30 now, a real adult well, okay! We can go there. Then as her birthday got closer she changed her mind to Red Robin. We asked her a few times just to make sure and she definitely wanted Red Robin.

We invited a couple of friends from church who Beth has been texted and becoming close with and were so glad they could both make it!  After we left the restaurant we headed home and she opened a couple more gifts too big to bring to the restaurant. I finally finished her scrapbook from when she was in school (I don't know what took me so long!) and Diana bought her a huge karaoke machine! It shows the words on the tv screen, has a place to plug in her microphone, and a camera so she can watch herself!

What a weekend she had! I think Beth is thrilled to be 30, although she's using that phrase again...

"I'm an adult and I can do what I want."

Uh oh.



 

 

 

 

 


 

Friday, October 10, 2014

The Day She's Been Looking Forward to All Year

I've been sitting here a long time trying to figure out what to write. I've been thinking about all the things that have happened since Beth was born.

Should I write about her birth? She was an emergency C-section, our first child. I was only 23, didn't drink or smoke and at the time, went against all the statistics that proved most babies with Ds were born when mom was much older. They told us she might not live past her teens. My doctor secretly dropped the visiting hour rules and our family came and went all hours of the day. When he saw how much Beth was held and was the focus of every visit, he ordered the rules be reinstated. He just wanted to make sure she would be loved.

Should I write about what she was like growing up? Beth was healthy, with no heart issues and only an occasional bout of upper respiratory issues. We didn't have blogs, or the Buddy Walk or Down Syndrome Awareness month... no one knew she existed except her family and friends. She was just another kid in the neighborhood jumping on the trampoline, waving sparklers on the 4th of July, playing on the slip 'n' slide we made in the front yard.

Should I write about where we are 30 years later? That she graduated from high school, got a job, does her laundry, takes out the trash, enjoys art and music. Just everyday stuff like the rest of us.

Or should I write about where we go from here? Now they say she may live into her 50's, but who knows where science and technology will be 20 years from now and how long her life will be extended at that point? Is she at the peak of her life? If the timeline is correct, Beth is middle aged. We're beginning to watch for all that entails.

Or maybe I should just post pictures and let them tell the story. :)

 
 
My mom
 
 

 
 
 


 


 

 

 
 
 
 
Happy 30th birthday Beth!
It's a journey we didn't expect, but we're so thankful we get to travel it with you!

Monday, October 6, 2014

Sacrifice

On October 6, 1986 I gave birth to a beautiful baby girl.
The moment she was born, she became a baby sister. So small and new.
Her big sister was so excited!

 
 
 
And she was gorgeous. The minute I looked at her I fell head over heals in love. She was an easy baby, sleeping through the night even in the hospital!
 
She was such a sweet spirited little girl. Always thinking of others, wanting to please whoever she was with. She was kind hearted and gentle.
 
We nicknamed her Sweety Bear.
 
 

 
 
And with that kindhearted spirit, she sacrificed herself for her big sister.
 
Sharaya was the one who shared her birthday parties with Beth.
She was the one who stood next to Beth for choir concerts.
She was the one Beth went to for help.
She was the one they called out of class when Beth struggled at school.
 
She sacrificed more times than I ever knew about while she was growing up.

 
 
Sharaya, the Lord put you in our family specifically to teach us how to love, how to serve and how to give. You have been God's heart in our family.
 
 
I love you!
Happy Birthday!!

Friday, October 3, 2014

Last Day

It's just been a busy week.

Tuesday was Chuck's last day at Centurylink. After 19 years. I picked him up around noon and we went to lunch to mark the occasion. I asked him how he was doing and he said, "I'm really doing okay. Now on to the next thing." I wish I handled change as easily as he does.

Wednesday I filled in for a friend at work. It's a different position from my own and it was really fun to sit in her chair for the day! While I was there, Diana drove Chuck down to Starline and he left for Oregon with 20 other drivers. (He's driven part time for them for a couple years now.) They dead-headed down to Eugene, spent the night, then spent Thursday shuttling fans back and forth to the Ducks football game. They spent the night in Salem last night, then drove home today. The Ducks lost to Arizona. :(

Allie helped me a little at work today - I just had a few things to finish from the week - then we went to the park. The weather this week has been surprisingly good! Sunny skies and warm temps. We saw H at the park and her daughter L is in Allie's class in preschool. The two of them played while H and I caught up, we hadn't seen each other in a while. About the time we got home, Chuck texted me to say he was almost back to the yard. Allie and I hopped back in the car and - after spending more than an hour in traffic, oh happy day! - we arrived at Starline. It was SO good to see him again! He was only gone for three days but I sure missed him.

Now for the next 7 days we have our Special Connections class, Special Olympics bowling practice, two birthdays and I'm hoping to attend a forum on aging for people with Ds. I'll write when I can!

Friday, September 26, 2014

This is Our Life Now

As Beth approaches 30, I'm reminded of all the things our future might hold.

I go to Facebook and read blogs about the milestones of children who have Down Syndrome, those who are struggling to find their place in school, the issues parents have with their child's IEP, who to invite to the birthday party, tying shoes, riding bikes, making friends... all those things that used to be SO important to us.

But that was many years ago.

It almost seems like a different life. A different family.

Now my thoughts are on aging and everything that comes with it. What issues will we face? What will Beth's 'senior years' look like?

I'm part of a group on fb called IDSC - Parents/Caregivers of Teens/Adults. IDSC stands for International Down Syndrome Coalition. It deals with all the things that come with having - or caring for - an older child with Ds.

I find this is where I spend a lot of my time. This is where were are now. We're past puberty, past all the school drama and fighting for Beth's rights, past all the growing up years.

This is our life now. From here on out, we deal with employment, health, social services.

And aging.

As nervous as all of you are about the growing up years, I'm just as nervous about the aging process for Beth. And I'm a little shocked at how fast it arrived.

Sunday, September 21, 2014

If You Read This Post, The Words Might Get Stuck in Your Head! But it'll be Worth It

Saturday was the big day, Beth played Frenchie in a production of Grease Lightening. (I guess, due to copyright laws, they couldn't officially call it Grease, but that's what it was.) :)

Beth did great! All the kids were wonderful! Kids. They're all adults but they'll always be our kids.
Sometimes it was hard to hear them because there was no microphone but we all know Grease by heart anyway.

The musical numbers were the best! Everyone sang, including the audience! The kids all had a great time, they laughed and danced, such a great way to spend the afternoon!

I have SO many pictures, but I'll just share a few.


Sonny getting stopped in the hallway by Principal McGee
"Yes ma'am, I mean no ma'am, I mean yes ma'am."
 
 
 
"Go Greased Lightening, you're burnin' up the heat lamp trials!"
 
 
 
The sleep over at Frenchies:
"Have you ever had a drink, Sandy?"
 
 
 
 
Everyone in the malt shop
"My parents want to invite you over for tea."
"I don't drink tea."
 
 
 
Frenchie's guardian angel
"Beauty school drop out, go back to high school."
(Yes that's Beth.)

 
 
"Doin' the hand jive!!"
 
 
 
The final school announcements
"Oh Blanche, stop blubbering!"
 
 
 
The big finale
"We go together like rama lama lama ka dinga dinga dong.
Remembered forever as
shoobop shoo wadda wadda yippity boom de boom..."

 

 
 
And if you now have the words to that song stuck in your head,
you're welcome. :)
 
Grease is the Word!
 

Saturday, September 13, 2014

Trying to Navigate Change with Someone Who Thrives on Consistancy

I've been looking at this blank page for a few minutes, knowing I need to write something but honestly, I got nothin'. Let me go back to the beginning of the week and see if anything develops. :)

Beth and I did our usual grocery shopping. I don't know if I've ever told you what she buys. It's usually the same thing each week. Two frozen dinners, (she has certain days of the week that she eats these for lunch) fat free fig newtons, raisins, syrup, one lunchable and a Sprite (for Wednesdays when she's gone all day) the chips... that's new. I really didn't notice them when I took the picture. Hmm. I wonder why she bought those?

 
 
 
 
There is a rhyme and reason for everything in Beth's life. When she was born, they told us that we'd need to be consistent with our teaching and discipline but they never said anything about the rituals and patterns she would create over time. Course, 30 years ago they didn't know nearly the amount they know now about people with Down Syndrome. It amazes me the advances they've made.
 
(Beth just came upstairs so I asked her why she bought the chips. "My sister. They're her favorite." Now, Beth hasn't had these before that I'm aware of and she said she hasn't tried them yet, but that would explain it. Diana must have told her as they walked past them in the store one day. Beth rarely changes her routine. There really is reason for everything.)
 
Her weekly schedule is what it is and should remain that way forever. If Beth has her way, that is. But we all know life doesn't stay the same. Changes come, we adapt, okay sometimes we rebel, but we try to adapt because change is a part of life. Trying to navigate that change with someone who doesn't adapt is very tricky. It takes planning and patience. Have you ever tried to plan for change before it happens? Usually all we can do is reassure her and list the steps of events about to happen.
 
I don't know how many of you watch Dora the Explorer but that program presents a challenge "We must get the baby bird back to it's mother!" then lists the steps to achieve that goal: "We have to go over the bridge, through the forest and across the river! Bridge, forest, river! Bridge, forest, river!" Can I just say, this works brilliantly for my adult daughter who has Down Syndrome! The simple steps, the rhythm of repetition and the glorious goal at the end!  
 
A problem arises when you come out of the other end of the forest and there is a huge mountain between you and the river. A mountain that clearly wasn't on the map! When was this map made anyway? There's no mountain here! And good luck trying to get that thing folded back up again... stupid map.
 
Okay, where was I? Oh yea, the mountain. The rhythm has been thrown off and panic begins to set in. That's when, as a parent of a child with Down Syndrome, you have to gently add a new step, create a new rhythm and make THAT the new normal. Over and over and over.
 
Thankfully the only change that has occurred for her lately is the play she'll be in next week, Grease Lightening. She decided she didn't want to add Special Olympics bowling on top of that so we didn't go to the first practice. Her coach called though and said she they can use her average from last year for the couple of weeks she'll miss, so she decided to be in Grease next week, and then to go Special Olympics bowling after that.
 
So... Grease, bowling, gold medal! Grease, bowling, gold medal!