Friday, November 30, 2012

Tradition

We woke up earlier than usual this morning so we could take Diana to the airport. Beth decided to stay home but she did come upstairs to tell her goodbye. (Isolation ended this morning!)

SeaTac Airport is about 40 minutes from our house and Diana needed to be there 3 hours early because it's an international flight. Traffic was heavy but we were able to use the carpool lanes, I'm so glad Chuck was driving!

He dropped us off, then went to get gas. I always like to get out and walk with her into the airport. We went up to the counter and she printed her own tickets from the kiosk. She had a small bag but decided to check it. She didn't want to carry it through the airports and I can't say I blame her. It only weighed 16 pounds, but it felt more like 30!

We stopped at a store to look at some magazines. She didn't bring anything to read but ended up not buying a magazine either. It's so hard to get her to spend money. She'll find something that she likes, something that's she's wanted for a long time and has saved enough money to buy, but then goes home and thinks about it for a week or two. Finally decides to buy it; goes back to the store and will ask me, "Do you think I should?"

Just before we got to the security check point, I took her aside and we prayed. For safety, for peace of mind and for God's protection to be around her. We found the entrance to the line, and I stood back and watched as she got closer to the metal detectors.

She took off her coat, took her laptop out of her purse, removed her shoes... you know the drill. She stepped through the detector... and it was quiet. She went to the conveyor belt to get her shoes, purse and jacket, then turned around to look at me. I was quite a few yards behind her, behind all the people in line, behind the security guards directing the long line of people, but we had a straight view of each other.

She raised her hand and waved. I waved back... and that's when I started to cry.

Have you seen the movie Ever After with Drew Barrymore? (It's a retelling of Cinderella.) There's a scene at the beginning where her dad is leaving and he gets to the end of the driveway. Everyone else is going back inside but Danielle says, "Wait! It's tradition! He always waves at the gate." Danielle continues the tradition as she grows up.

And that's what I thought of this morning as she turned around and found me through that crowd. It wasn't the official gate to her plane, but it was close enough. This is her 5th trip by herself and it really has become tradition for us. 

She always waves at the gate.

Wednesday, November 28, 2012

Day Two of Radiation Treatment

We walked into the medical clinic yesterday and Beth handed her picture ID and insurance card to the receptionist. We no sooner sat down in the waiting room when they called her name. Chuck stayed there while Beth and I followed the doctor.

Through long halls and two more waiting rooms, he pointed to a door on the left. Beth sat down in the chair and I was able to stand right by the open door. These signs were everywhere. There was a big one on the door, plus smaller signs on the cupboards and the equipment. They certainly got my attention.


On the counter there was a small barrier, maybe a foot in diameter that, if you were standing in front of it, would protect your chest from contamination. There was a clear sneeze guard type thing on top of it, sort of at an angle so you could look over the barrier and see what was on the other side.

Doctor T put on some gloves and stood in front of the barrier. He picked up some long handled tongs and picked something up from behind the barrier. When he turned around I could see it was a small vial. He told Beth not to touch the pill inside, but to put it directly into her mouth. Still having gloves on his hands and holding the vial with the tongs, he handed the vial to Beth. She took it, bare handed. As he turned back around to put the vial down, I watched her begin to pour the pill into her hand.

"No Beth! Not in your hand! Just put the pill directly into your mouth." Doctor T spun back around just in time to see her do it the right way. Whew! Not sure what would have happened if she had put it directly on her bare hand, but I didn't want to know!

She drank a small cup of water and that was it. She got up and Doctor T lead us back down the halls, through the two waiting rooms to where Chuck was. He looked up, "Wow, that was fast!"

Beth sat in the very back of the van on the way home. She put on her headphones and sang most of the way home. She's been downstairs ever since, only coming up to use the bathroom. We've gone down a few times to check on her (besides bringing her meals) and she's always doing well. They said she could have neck pain because the thyroid sometimes is swollen during this treatment, but she hasn't had any side effects. 

On the ride home yesterday she asked if we could buy her The Little Mermaid. Her copy of the movie is so old it doesn't work well anymore. As she begins day two of isolation, Chuck and I are gonna go buy it for her.

Monday, November 26, 2012

Trips And Trials

Beth begins her thyroid treatment tomorrow. The closer it gets, the more I realize how many details have to be worked out. I'm so glad we have two bathrooms because we can't use the same bathroom as Beth this week. We have a big bathroom and a little bathroom. Beth prefers the big bathroom for various reasons so we'll be moving our stuff to the little bathroom. We're planning how to do meals and drinks, dishes and trash. I think at this point, I'm more nervous than she is!

And early Friday morning Diana flies out to London! This will be her 4th visit, she loves that city. She'll be going to the premier of Les Miserables. She is beyond excited and actually screamed when she found out they might get snow next week!!

Saturday, November 24, 2012

This Little Town

Thanksgiving Day was awesome. We served about 1000 people, a little less than usual, but that's okay. The day was so much fun.

Ryan, Sharaya and Allison came to our house for Thanksgiving dinner last night. We don't have an actual dining room, more like a breakfast nook so we rarely eat dinner at the dining room table. Except on holidays. We bring in extra chairs and squeeze in around the table. I love it. I'm looking forward to the day we can have an entire room just for our dining room table. :)

Anyway, as we're finishing dinner, Allie says she has to go to the bathroom. As I get up to take her, Beth leans over and says her stomach hurts. You could see the pain on her face. Chuck got her to the bathroom then I went in to check on her. She was hot and sweating. I got a cool towel and laid it on her back. She told me it 'felt so good' so I put it on the back of her neck and her forehead. I was surprised she was so hot and actually sweating. I gave her the trash can thinking she might throw up but she never did. 

After a little while she said she wanted to come out to the living room and lay down on the couch. I went downstairs and got her pillow and blanket. After a few minutes I asked her how she was doing and she said she was cold. I got her a second blanket. I have no idea why this came on so fast. One minute she was eating happily and the next, she was doubled over in pain. And so warm! I can't get over how fast she went from normal to hot and sweating.

She had color in her cheeks and I kept telling her to breathe through her nose, to make sure she was getting good oxygen. She just laid on the couch snuggled up with the blanket. After a few minutes she sort of laughed at the TV. (We put on iCarly for her.) Then she laughed more. And more. About an hour later, she got up, said she felt better and went downstairs.

I have no idea what caused it. Maybe it was an allergic reaction to something she ate? We were trying to list everything she had but there was really nothing that she hadn't had before.

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Tonight was the tree lighting in downtown Edmonds. We've lived here off and on for 24 years but have only attended the tree lighting once before. Shame on us. 


Allison on Sharaya's shoulders




A choir from North Sound Church.
There were some people from our church singing as well.

 

 


 Santa rode up in a vintage fire truck.
Then the countdown to the tree lighting!
10, 9, 8, 7...!!!!

 


Some of the shops gave out free hot chocolate.
There was popcorn and Christmas music.
We do love this little town.  

Wednesday, November 21, 2012

The Day Before

It's the day before Thanksgiving and Beth and I just got back from working at the church. Each Thanksgiving we serve a free dinner to the community. I'm the team leader for the condiments area; we prepare the black olives, pickles and cranberry sauce, plus dish up all the pies. It's exhausting but fun.

Today Beth and I prepared the room where I'll be working tomorrow. We laid down heavy mats, moved tables, hauled the big Costco size containers of olives and pickles... then we went out for frozen yogurt. :)

Tomorrow Beth will be working in the childcare area, helping with the kids all day. Diana is helping me in condiments and Chuck will be in the transportation department. If someone doesn't have a ride, we go pick them up and then take them home after dinner.

We do this three times. There are dinners at 11:00, 1:30 and 3:30. There is entertainment during the meal plus door prizes and a raffle for an IPad. We have a professional photographer taking family photos and a reception room with coffee and snacks while you wait for your seating. It's a pretty involved event with more than 400 volunteers to make it all happen. I guess you could say this is our 18th Annual Community Thanksgiving Dinner!


Tomorrow is Thanksgiving (I can't believe it's the end of November already!) and I just want to say how thankful I am for some of the basic necessities. A hot shower, my bed, a roof over my head. I know so many in this country, due to the weather or house fires don't have even these basic things and I know how precious they are. I'm thankful for my husband. He has been so faithful and such a calming influence in my life. I feel safe when he's around. I'm thankful for our three girls, Beth, Sharaya, Diana and for Ryan and Allison. They bring joy into my life. I'm so proud of each of them and am blessed that they all love the Lord.

From our family to yours, we hope you have a very Happy Thanksgiving!



 

Sunday, November 18, 2012

It Didn't Used To Be Like This

I read a post a few days ago and haven't been able to stop thinking about it. It was on Got Down Syndrome's Blog and it was about new research being done at the University of Washington, or U-Dub as we call it here in Seattle. I had seen the article somewhere recently and told myself I was going to look into it more, but never did. I was glad to see it on her blog. Thank you Qadoshyah!

It's about scientists who, in the lab, succeeded in removing the extra copy of chromosome 21 in cell cultures derived from a person with Down Syndrome.

Dr. David Russel said, "We are not proposing that this method will lead to treatment of Down Syndrome but for the possibility that scientists could create cell therapies for some of the blood forming disorders that accompany Down Syndrome. For example, people with Down Syndrome who are diagnosed with leukemia could have stem cells derived from their own cells, then have the trisomy removed from those cells. They could then receive a transplant with the cells without the trisomy (their own cells - that don't promote leukemia) as part of their treatment."

This is just amazing to me. Did they just reach in to that petrie dish and remove that extra piece of chromosome? Did the original chromosome remain intact? Unchanged? There's so much about this that I don't understand. I know this could be taken to the extreme by some people and used as a 'cure', as a way to make sure their babies aren't born with Down Syndrome. But to be able to help those who have leukemia? I'm all for that!! If this can truly, honestly, safely be used as treatment or even a cure for leukemia for kids who have Down Syndrome... what a breakthrough!

But that's not really what this post is about. It's about the percentage of kids who have Down Syndrome who are diagnosed with leukemia.

That wasn't even heard of when Beth was born. Granted, we didn't know a huge amount of people who had kids with Ds, but we did know of enough people. And none of them, not one, was ever diagnosed with leukemia.

It makes me wonder what's changed. Why are there so many kids being diagnosed today? I know some parents refuse to get their kids immunized because they just know that is the cause. I don't know if that's the cause - all three of our girls were immunized up to 5th grade - but I sometimes wonder about it. As our girls got older, it seemed more and more were needed. Every time we'd go to the doctor for a cold or... whatever, it seemed they were telling me another immunization was needed. At about 5th grade I just told my doctor 'no thank you'.

I got my last immunization in 2nd grade. Is it true that kids nowadays get them well into middle school? Maybe it's my age, but that's just crazy to me.

I don't know why so many kids are being diagnosed with leukemia. It didn't used to be like this.

Thursday, November 15, 2012

Radiation Treatment

I got home from work, put dinner in the oven, started a load of laundry and now I have just a few minutes before everyone else arrives home.

Let's see, what have we been up to?

Yesterday I painted 'phase 2' of the kitchen. I'm hoping to get it done before the end of the year. No guarantees.

Diana leaves for London in just two weeks! She's going to the premier of Les Miserables. She'll be going alone but plans to meet some friends there. I'm a little jealous.

On the 27th of this month, Beth starts her radiation treatment for Graves Disease. Chuck has taken that whole week off so we'll both get to be there with her. I'm glad Chuck is coming. We always feel stronger and more brave when he's around.

I don't know if I told you that I was asking a lot of questions in the doctors office about side affects, things we should watch for, etc. when he told me that the government looks at this the same way they look at a nuclear reactor. To them, it's all radiation so a lot of the same rules have to be followed. But he said there's such a small amount of radiation in this pill, it's not gonna hurt any of us. It's just a tiny amount to kill her thyroid. But because it's r-a-d-i-a-t-i-o-n, the government puts all these restrictions and guidelines in place. He said by law, we have to follow the rules he gives us, but medically there's not enough radiation to do any harm.

I felt so much better after that! It was like, "Okay. We can do this."

Saturday, November 10, 2012

She Hugged A Pastor!

Chuck, Diana and I had a Children's Ministry meeting last night. While that was going on, Beth had a Hospitality party. Everyone in the church who is an usher, greeter, parking lot attendant, etc. got together and hung out. They're so busy on Sunday mornings that they don't really get to spend time with one another so the Pastor who heads up the Hospitality team - Pastor K - had a party.

I was a little nervous about Beth going because I knew she would only go for the food. She's too shy to talk to anyone and all she would do is eat. I talked to her about it a few days ahead of time and explained who would be there and what would happen.  I encouraged her to talk to people, to ask them how they're week was, ask them what they'll be doing this weekend. I really tried to do as much prep work as I could.

Our meeting started before hers so Chuck was willing to leave our meeting early, he went home and got her (we live about 4 minutes from church) and came back to our meeting. I admit I was a little nervous about how she would do.

Well, when we went to pick her up she jumped up from her seat to show us her 'gift'. Everyone got to choose between a candle and some chocolate. She chose a cute glass container with a few pieces of chocolate in it. Then she said, "They have a chocolate fountain!"

As we got ready to leave, she turned around to everyone, waved and said (loudly for everyone to hear!) "Goodbye!"

I was shocked.

I suggested she go over to the host and thank her personally and M said she loved having Beth come. Beth smiled, looked at her and said thanks. Then they talked about the chocolate fountain, M said Beth had asked her for help... again, I was shocked.

As we turn to go, she giggled, waved and said, "Bye Pastor K!"

Wha...??  Beth?? Talking to a pastor without any prompting?!?

He was talking to someone else and didn't hear her so I told her she might want to say it again. When she did, he came over and gave her a big hug. "Thanks for coming, Beth!" She hugged him and smiled so big!

As we left she was smiling, her head was up; she was a different girl walking out of that church. It was awesome!

Wednesday, November 7, 2012

What Would You Have Done?

I try to treat Beth the same way I treat my other daughters. But let's face it, Beth isn't like my other daughters. Here's what happened:

We came home from church last night and I made hot tea for everyone. I took Beth's downstairs and saw a large cookie that she had bought at the coffee stand. I checked the nutrition label and it was packed with calories and sugar. I told her that she shouldn't eat it, that it was very unhealthy but that she was an adult. She was smart enough to make her own choice about it and that I wasn't going to tell her what to do. I put the cookie down and went back upstairs.

Our middle daughter is married with a daughter of her own. I certainly don't tell her what she can and can't eat. Our youngest will be 22 next month and I don't tell her what she can and can't eat. But Beth isn't like my other daughters.

Beth has Down Syndrome and it can impair her judgement. It can cause confusion about right and wrong. The 'I want it' urge is sometimes much stronger than the 'what is healthier for me'. The 'I'm an adult and can do what I want' sometimes beats out the, 'I need to make better choices for my life'.

But my other daughters make poor decisions. As much as I want to tell them, "DON'T DO IT!!" I have to allow them to learn from their choices, good or bad. As all moms know, we sometimes bite our tongues, we look the other way. We have to, in order for our kids to grow up to be independent and contributing members of society.

But Beth isn't like my other daughters. That little extra sometimes keeps her from seeing the consequences of her actions. So do I keep 'teaching, instructing, deciding for Beth? Is that what I signed up for when we brought her home from the hospital? Do we, for the rest of her life, tell her what to eat, what not to eat, what to wear, what not to wear, what to do, what not to do?

But Beth is 28. When do I let her make poor choices? What do I do when she doesn't understand the consequences of those choices?

You'd think that after all these years I'd have it all figured out. But I don't.

After the cookie situation last night, I crawled into bed and wondered if I had done the right thing. Should I have just taken it away? Should I have just said, "No you're not eating this?" She's 28! If my other daughters eat things that aren't healthy, I don't say anything. If they do something that might risk their health, I don't say anything.

But Beth isn't like my other daughters.

Saturday, November 3, 2012

Wow. I'm humbled and overwhelmed at your comments on my last post. I truly thought I was 'preaching to the choir' all these years. Thank you all for reading! I feel so loved! :)


Beth and I went shopping today. The first of every month she gets SSI (supplemental income) from the state. It's deposited directly into her account but it immediately begins to burn a hole in her pocket! On Tuesday she reminded me to flip my calendar. Then she asked if we could go shopping. We've been busy all week so I told her we'd go today. When I asked her where she wanted to go she said, "Bartells, Fred Meyer and Target."

So I asked her what she planned to buy and she said her CD player wasn't working. She has an ipod but prefers her CD player. So we started at Freddy's and she found one right away. We then went to Bartells for batteries.

They had batteries at Fred Meyer but she knows right where they are at Bartells. She likes routine, consistency and things that are familiar. It's hard for her to buy new shoes or new clothes for that very reason.


I fixed everyone some hot tea a little while ago and when I brought hers downstairs, she looked up at me and pointed to her new CD player, "It's working!" Ahhh, things are right in her world again. :)