Poor Sugar

Diana's dog Sugar recently started having issues with her right eye. It was all goopy and and yucky. So late one night we took her into the 24 hour vet. After hours of waiting and a short examination, the vet said she has conjunctivitis. They cleaned her eye and gave her some eye drops. Poor Sugar was not happy.

July 26, 2008

Ryan and Sharaya celebrated their 5th Anniversary this week. It's been quite a journey for them, but they're persevering and taking it one day at a time.

The big reveal! When I got married, the groom didn't see the bride until she was walking down the aisle. Nowadays they have the bride sneak up on the groom and then...

 

 

 

 

Ryan always wanted the groomsmen to have canes. But there was more than meets the eye. Inside the canes were swords! They certainly had fun with those!

 

 

 

Keep in mind, these are brothers. There was even a sword fight or two. :)

 

Happy Anniversary Ryan and Sharaya! 

We love you! 

(This one's my favorite.)

 

Nothin' Really, Except the Yard Sale

I had a great post a few days ago. As the situation was happening I was writing the post in my head. It was good, too! You really would have liked it!

But now, I can't remember it at all. I don't even remember what it was about.

It's been that kind of week.

Beth had a doctor's appointment on Monday, this time to see her doctor. She gets blood draws every couple of months, and every 6 months goes in to see the actual doctor. He said he thinks we've found the correct dosage for her thyroid medicine! So that means she won't have to have another blood draw for 6 months and he won't need to see her for a year! Yay!! She was excited to hear that!

Hmmm, that's all I can think of right now. I'm volunteering at a yard sale our church is having this weekend. I took these this morning before we officially opened. I spent more than 8 hours there yesterday, placing items and then pricing. The tarps are covering the furniture.

 

 

I spent hours out here trying to price every single item. I didn't get everything done but the heat was getting to me. So then I went inside...

 

 

 These pictures don't show the sides of the room with all the clothes, the furniture... there were a lot of volunteers pricing, but there weren't enough. People were overwhelmed and worn out. But, today after about 7 hours, they had sold literally thousands of dollars worth of stuff!!

So that's what I'll be doing this weekend. How about you?

Normal? - Blog Hop!

Mardra, over at mardrasikora.com is hosting a blog hop and her question is: What does normal mean to you?

One of our girls was at work recently and had someone tell her - sincerely - that she was very special. She said thank you but it made her feel uncomfortable because that word has always described Beth's world. Special is a great word. It can bring feelings of accomplishment, warmth, love... but to our family, who has a child with 'special needs', it brings emotions of a different kind.

The word 'Normal' is the same way. 'Normal' has taken on an uneasy familiarity to me since Beth was born. I never really thought about the word before that. Like when you buy a new car, suddenly you see them everywhere! Now it seems I hear the word normal all. the. time.

Normal, in societies eyes, is something Beth will never be.

Normal is something I've questioned a lot since Beth was born. How do you describe it to someone? It's quite relative, if you ask me. Like weather. What's cold to me is balmy to you. What's normal to you is... well, what IS the opposite of normal? How do you know?

Webster's Dictionary puts it this way:
normal 1. adj conforming to the norm, standard, regular, a normal temperature. Conforming to the standard for a particular group.

So, if I understand it right, normal is: changing who you are (conforming) to fit in with a group. Or, in other words, normal is being in a clique? Really Webster?

When Beth was a teenager and we'd go shopping, the girls would sometimes act silly at the mall, laughing and talking loudly, as many teenagers do. But when Beth did it, I would tell her to stop because I was afraid people would think she was acting that way because she had Down Syndrome, not because she was a teenager. When others acted that way I wouldn't think twice about it, it wouldn't even distract me. I'd keep walking, and keep shopping. But Beth? I'd tell her to stop it. I'd get embarrassed. I'd wish she'd just 'act normal'.

But she was.

But having that extra chromosome makes everything she does, everything she says, seem different. Makes it NOT normal.

I don't know what normal means to me. Personally I don't think 'normal' means belonging to a clique. I think normal is relative. What is normal to me is not normal to you. The life he lives is normal to him, but is not normal to me.

The life I have is normal to me. Getting stared at when we walk into a restaurant is normal now. It's normal for me to be constantly watching Beth when we're out somewhere to make sure she doesn't fall. Normal is having the DART bus pull into our driveway. Normal is the Special Olympics medals hanging on Beth's wall.

What is normal to you?

I Bet She Remembers It Next Time!

Beth loves to sit outside in the summer. She sits at the table and writes (she can write anytime, anywhere) for hours.

 

 

I came home from work the other day and saw she was wearing this tank top. I asked her if she had put on sunscreen and she said no. Sure enough, the next morning her shoulder was very red. We've been putting lotion on it and yesterday she came upstairs looking scared.

"I'm peeling!!" She was completely grossed out! Poor kid. I bet next time she remembers the sun screen!

A Day in the Life - Sunday

Beth wakes up slowly. She usually sits on the end of her bed for a few minutes before heading upstairs. She uses the bathroom, then washes her face.

Then she goes back downstairs to get dressed. I'm trying to get her to change this part of her routine. I wish she would eat and brush her teeth first, before getting dressed so if she spills something on her clothes, she won't have to change them. But for now, this is her routine.

After she's dressed, she gets her purse and bag and comes back upstairs. She'll put everything by the front door, then go into the bathroom to brush her teeth. (Another part of her routine I'm trying to get her to change. But change is not easy.)

Then it's into the kitchen to fix breakfast. She cuts up a banana and puts it in the bottom of her bowl before pouring in the Cheerios. But she always saves a small piece of banana for Sugar, Diana's dog. (Sugar is a Westie and her favorite foods are fruits and lettuce. We think she's a little strange.) Beth will always put a small piece of banana in Sugars bowl.

After eating breakfast, Beth will put her bowl in the sink, then announce to everyone that she is ready to go!

Beth is a Greeter at our church and she greets every other week. It has brought her out of her shell and people love greeting her! You think about how often people stare at our kids; well now they get to shake her hand, engage her in conversation and maybe even give her a hug! People will tell me how she'll just randomly go up to them in the foyer and give them a hug. They're people she knows and feels comfortable with. They love it and it's really helping Beth.

 

After church we went out to eat. We've really been trying to eat at home a lot more but today we just wanted to go out. So we ended up at Panera. Soup, salad, sandwich - You Pick Two. The food is SO good and it's inexpensive. At Panera you go up to the cashier first and place your order. Then you pay and go sit down to wait for them to deliver your food. Today Diana helped Beth figure out what she wanted to order and Chuck told her how much money she needed. (Diana and Beth both bought their own lunch.) Diana spoke to the cashier and helped Beth answer the questions, 'Did she want bread or fruit for a side', etc. When we go to a sit down restaurant, Beth reads the menu and tells the waiter what she wants, but Panera was super busy today and we decided to just help her.

After lunch, Diana, Beth and I went on a photo shoot! Chuck and I went walking around this lake earlier this week and I thought it would be a great place for pictures. Unfortunately, it was packed today so there weren't as many places to take pictures as I hoped. But I think we got some cute shots.

 

I couldn't get her to smile, but when she looked at Diana - big smile! 

Maybe next time I'll have Diana take the pictures.

 

(I'm still learning about shadows and lighting.)

 

 

 

We came home and Beth headed right downstairs. I think she was done for the day. She loves being around family, but she also loves her alone time! After a little while, I went downstairs to see what she was up to. 

(That's her bowling ball at the bottom of the stairs. 

She's getting it ready for Tuesday.)

 

She was counting her change. 

This is her desk, where she spends most of her time. She sits here to watch TV, to write, to sing. We've been listening to her sing at the top of her lungs for most of the evening. I think it's her favorite thing to do.

She rarely goes to bed before we do. After we're all in bed and the upstairs is dark and quiet, she'll come upstairs, go into the kitchen and get a large glass of milk. Back downstairs, she drinks her milk and goes to bed. Hope you had a great Sunday too!

Mysteries Unraveled - Blog Hop!

I'm finally joining the Blog Hop from The Bates Motel. Almost didn't make it in time, but here I am! The question she asked was, "What mysteries do you want to see unraveled for the future for your child with Down Syndrome?

My first thought after reading that sentence was, the mysteries of aging. Beth is 28, will be 29 in just a few months and her 'twilight years' as they've been called, make me nervous. When Beth was born people with Down Syndrome lived only to their 20's. Now though, they live to be 50 or 60 and if that's true, Beth is middle aged. So what does that mean, exactly?

I've wondered lately if I need to schedule her for a mammogram. Does she need one? Is now the time to start having those?

I'm in my 50's and I know the aches and pains I'm starting to have... is she having them as well? Sometimes when we go for walks she'll start walking funny, with her arms swinging wide and her back is arched. She says her back hurts. Is it due to her excess weight? Or does she have narrowing between the discs in her spine? My doctor says it's more common in people my age. It's just what happens when you reach your 50's. Oh joy. Is that happening to Beth as well?

If they don't live as long, do their bodies go through the aging process earlier?

What about menopause? Should I be looking for signs of that already? And Alzheimer's. That scares me too. I know some of this could be answered by a simple trip to the doctor, but I also believe the doctors don't know everything about people with Down Syndrome.

I was just reading over at Grown Ups and Downs that she was at a conference where they talked about scientists who are studying the exact things I'm nervous about. I'm a little relieved to know I'm not the only one thinking about these things. I'm also grateful there are people out there doing something about them.

Blog Hop!

Seeing the World Differently

When Beth was born I remember searching for pictures and books that would show what our lives would be like when she got older. What do adults with Down Syndrome look like? How do they act? What are their families like?

With no internet back then, I basically had encyclopedias and outdated books from the library. The hospital gave us one that was in black and white and only had drawings, no photographs. I think it was from the 60's. To this day I remember the desire, the ache to know what life would be like when she was an adult. 

Today, I'm living in that future and it's not as big a deal as I first thought. If I had known someone who had a grown child with Ds and they told me that their child did this and that, I would have assumed Beth would do this and that too. But I'm older now and I realize that people with special needs are as different as everyone else. Just cause your child does something doesn't mean mine will and vise versa.

Our day to day life can be pretty boring. I keep teaching Beth, keep showing her how to do things. Things my other girls picked up naturally. Cell phones for instance. Beth turns her ringer off all. the. time. I got home home from work yesterday and went downstairs to say Hi. She immediately asked if I got her text. I told her I did and that I replied to her, did she get MY text? No. Then she started to dig in her purse to find her phone. Which means she sent me the text, then tossed her phone into her purse.

She called the house earlier today and I was out pulling weeds. By the time I got to the phone, she hung up so I called her back. It went straight to voice mail so I expect her ringer is off and she didn't hear it. So now I don't know if she was upset about something or just calling to tell me what she sang at karaoke or to ask what we're having for dinner tonight. I went back to pulling weeds and starting thinking about how I need to explain to her - again - about keeping her phone volume up and keeping it near her if she's texting or calling people.

Then I starting thinking about how I never had to explain that to Sharaya and Diana. They just knew. In fact, they explain things to ME, "Mom, we use vowels now when we text." Oh.

Beth still needs to be taught so many things that I figure she should just know. Like the phone thing. Or laundry. She pours the laundry soap in. POURS. I tried showing her the lid with the lines inside to help you measure... but those were hard for me to see, and I wondered if they were hard for her to see too. So I bought a small measuring cup and explained that she only needs a certain amount... problem solved. Now she uses the measuring cup every time.

What will life be like when your child grows up? Pretty basic. Some days will be down right boring. And it may look very different from ours. But I think, especially if your child lives with you into adulthood, that there will be times when the usual just won't work and you'll need to adjust. Adjust teaching methods. I think you'll always be teaching. And I think you'll see the world differently.

Changin' It Up A Little

We've been doing the same thing on the 4th for many years. Go to the parade, come home and have lunch, then go to the park to wait for the fireworks. But now that the kids are grown, we don't want to do the same thing anymore. To be honest, the parade has lost it's excitement. For some reason, our girls don't get excited when they see the fire trucks. Or the clowns! What's up with that? :)

A few years ago Beth started walking in a parade in a city about 20 minutes north of where we live. So we drive up there now and watch her. She wants us there, but doesn't want us to be there, if you know what I mean. So we drop her off, set our chairs out on the parade route... and wait. You know how it goes, you wait and wait, then you see the group coming down the street, and then boom, they're passed. She didn't even look at us, the turkey.

 

 

 

 

Hi Kendra! At least Kendra waved. This year the parade was more... more, I'm looking for the right word here. Well, let me just say that there were many groups with so many scantily dressed participants that we diverted our eyes more then once to avoid looking at them. They were almost naked, barely wearing anything! On one of the groups, I remember thinking I was glad that the Girl Scouts were in front of them so those little girls wouldn't have to look at them the entire time. A lot of it seemed inappropriate for a family parade.

Afterward, Beth wanted to go home and bbq so we did. Then around 4:00 Diana asked if we were going to go see fireworks. Chuck and Beth wanted to stay home, so Diana and I went. I think this was the very first time Chuck and I didn't watch the fireworks together. :( 

We didn't want more crowds, so we drove around looking for streets that might have a good view. Found a church where people were starting to gather so we settled in. It wasn't crowded at all; Sharaya and Allie joined us (Ryan was helping a friend move) and I got to practice using my camera on the Fireworks setting. (They would have turned out better if I had a tripod.) It actually turned out to be a very nice evening! Except that Chuck wasn't there. :(

I hope you all had a wonderful Independence Day!

 

 

 

 

 

Blast

Seattle has had a blast of hot weather the last few days. We're known for our rain, but during the summer, temps can get into the 90's. Our main defense is water and oscillating fans. In San Diego, everyone has air conditioners. That's one sound I missed when we moved here, you never hear air conditioners here in Seattle. In SD they run all day every day during the summer. In Seattle, everyone just goes outside.

On Sunday, that's exactly what we did! First to a park that had some fun water features, then back to our house so Allie could play in the pool. It was fun to spend the whole day with family!