This and That

 Hi everyone - 

 

We've been keeping busy around here but thankfully there's been nothing too overwhelming.

 

Beth and I made cookies. Chocolate chip cookies! I usually keep them in a cookie jar and they become hard so I add a piece of bread to soften them up. This time I was too lazy to get the jar from the back of the cabinet so I grabbed a rubbermaid container, snapped the lid on... and those cookies have stayed so soft! Just how we like them! I guess the cookie jars just don't have a very good seal. Now I know!

This is all that's left today

We're already starting to decorate for Harvest Party on Tuesday. The last few years we've done a Trunk or Treat but this year we're back inside. When I first heard that, I was a little nervous thinking of all those people - the set ups, the mess - but custodians are able to come in on their day off so I've scheduled one custodian per floor to keep the trash cans empty and check on the bathrooms... and now I'm excited about it! Our theme is The Farm - can you tell? :)

 

I lowered our flags at work in honor of those killed in Maine earlier this week. It's so heartbreaking - another senseless shooting. My heart and prayers go out to all those affected by this.

 

Earlier this spring we started to hear pastors and speakers all over the country talk about a 'shaking.' Tim Sheets got a word from the Lord about 'shaking starting in 3 months.' That put it right around the end of September. One of our pastors got a word that said, "The time for preparation is over. The shaking as begun." Gina Gholston, Larry Sparks... so many talking about "It's time!" "The shaking has begun!" And across the nation and the globe:

 

San Diego had a hurricane

Eastern WA had devastating fires

Flooding in New York

Category 5 hurricane in Acapulco

Earthquake in Afghanistan

The war in Israel...

There was also this word: "The physical attacks happening to Israel will begin to happen spiritually to the churches." It seems the shaking really has begun. 

 

We had a Sacred Assembly this last Sunday, taken from Joel 2 when Israel was under attack and it's enemy seemed too great to overcome - "Even now," declares the Lord, "return to Me with all your heart, with fasting and weeping and mourning." "Blow the trumpet in Zion, declare a holy fast, call a sacred assembly. Gather the people, consecrate the assembly." And that's exactly what we did.

 

 

We combined both services into one, set up chairs in the foyer, in classrooms, the Commons, and got every person into the building for one service. We had a time of worship, of prayer, repentance, communion, anointing. There had to have been more than 2000 people there and every single person was anointed. It was such a holy time, repenting and calling on God. I truly believe He is in control and we don't need to be afraid. Just trust Him. He knows what He is doing.

 

Doing devotions in preparation for the Sacred Assembly

 

 I saw this on IG the other day -

 

 

I think about you often and hope you're doing well during this season. May you find the Lord's favor and may His goodness go with you each and every day.
 

"It Blew Out"

Chuck went to work at 11:00 this morning and I got home from work around 3:00. I went for a walk, brought the trashcans in from the curb and then I went downstairs to tell Beth what I was fixing for dinner.

She very calmly points to the wall and says, "My thing blew out." I turned around to see this...

 

What?!? "Oh my gosh Beth, what happened?!?"

Silence. She came over to the wall and just stood there. I'm sort of beginning to panic as she just stares at it. "Beth did you see a little fire or something??

"I dunno." "Well, when did you first see this? When did you notice it looked like this?" 

Silence. In moments like this she doesn't have the skills to think of the step by step process of what happened and explain it. We've learned over the years that she will agree to whatever explanation you give so we try to be patient until she does answer.

But I was well on my way to panic mode and I anxiously asked, "Did you see that your alarm clock wasn't working and so you came over to check and that's when you saw this?" 

With a tone of, 'I like that answer!' she said, "Yeah!"

So honestly, I don't know if we'll ever know what actually happened. What I DO know is that a power strip was plugged into the socket. And it's fried as well.

 

I've checked the wall around the plug and it's cold. The other electric sockets are cool to the touch and seem fine. I've told her not to plug anything else into those two sockets until we get it fixed.

Her cpap machine and alarm clock were plugged into the power strip and I plugged them into a few other sockets before they finally worked. I'm a little nervous about leaving them plugged in because I don't know if they've been damaged. Can they be damaged if they were plugged into something that does that??

I feel horrible now because all this time I thought she was using a surge protector but after looking at it today, it's not. It's just a power strip. But I'm so, so grateful she was protected here today!

Every time I pull out of my driveway I pray for protection around our home, the property it's on and the neighborhood we're in. And I believe with all my heart, today the Lord answered that prayer!!

It Started With Just a Bump On His Head

About a year ago Chuck bumped his head getting out of the car. You know how you bump it on the top of the door frame? Well a small bump formed and it became a blood blister. Chuck is good about regularly going to the doctor and so he's kept an eye on it.

For a long time it stayed the same but a few months ago it started changing a little bit and at his last visit the doctor decided to do a biopsy. Turns out it is cancerous, it's melanoma. 

We had the first appointment with the oncologist and she explained what all would happen during the surgery. There are 3 satellite nodes that have appeared recently and we're hoping and praying it hasn't gone into his lymph nodes. 

We had planned to go to Nashville next week and they were going to do the surgery after that but the trip's been canceled now due to the coronavirus. We had still planned to go but then one by one all the sites we had wanted to see were closing so that made it easier for us to make that decision. 

So now we're not sure when the surgery is going to happen. I will admit I held my breath a little when we pulled into the hospital and the big CANCER sign greeted us. It's a scary word but I know this hasn't taken the Lord by surprise. Chuck feels great and even forgets the spot is there on top of his head.

And speaking of the virus, how are you doing? Chuck drives a city bus so he is still working (although there are only 2-3 people on the bus now instead of standing room only!) but our church has closed so Beth and I are at home. It's been a nice break to be honest. Sharaya is a Nanny so she's still working (although the parents she works for are working from home) and the place where Diana works has closed.

There doesn't seem to be a consistent nationwide rule for how to combat this virus. So however you're coping with this, I hope you and your family are staying healthy.

Take care of yourselves.   

Golf Cart Races and Creepy Foyers

We fly out tomorrow so I wanted to write a post before we left. Chuck fixed our email issue this morning so now I can post a few pictures!

I caught Beth at work last week. She doesn't know I took this picture! She's already doing the job by herself, I don't even have to go with her anymore. And actually, I haven't in quite a while. She really learned it fast: clocking in and out, where to get all the supplies, and she loves it. She can't wait to go to work every week!

 

Pulling double shifts last week was kinda creepy. Our church is busy 7 days a week and there's always something going on so having to close up late at night after everyone's gone home was scary! I kept looking over my shoulder making sure no one was following me!

 

Yesterday we celebrated Bosses Day by hosting the 'International Raceway'!! We've spent more than 3 months planning this and the pastors had a blast! We rented a golf cart and had them drive it through an obstacle course, over ramps, around trash cans while they tried to shoot a basketball, backing up around sharp turns, they screeched the tires, one almost tipped over, another almost fell out... we were all (the pastors included!) laughing so hard! Then we headed inside for pulled pork burgers and potato salad. The day was a success!

Two of my co-workers (and co-conspirators!) taking it for a spin before everyone got there. 

 

Some of the support staff getting their instructions before the pastors arrived.

 

Having lunch

It was so much fun planning it, all the secret meetings, hiding the cones and flags... but we did it! The pastors had no idea! It was awesome!

Smoke But No Fire

Many times a week I pray the Lord would protect our house, the property it's on and the neighborhood it's in. Today we saw a direct answer to that prayer.

Chuck and I sat down for lunch and it smelled like something was burning. You know how you sit there for a second, sniffing with your nose in the air wondering if you really could be smelling fire? 

Beth was upstairs emptying the trash and I got up and was sniffing down the hallway when Beth said, "That smell? That my microwave."

I flew down the stairs and noticed the stairwell was very smoky. Beth's room was smoky. I saw her microwave was open and this was smoldering inside.

It's a homemade cooling / heating pack that's supposed to be microwaved for 15 seconds at a time, until it's at the desired temperature. Beth said she put it in for 3 minutes! And she had been upstairs for a few minutes just casually emptying the trash, who knows how bad it was when she first opened that door!

The first thing I did was unplug the microwave. My eyes were burning and I kept coughing. Chuck called down, "Is everything okay down there?"

"No!"

There was still some smoke coming from the pack so I grabbed Beth's water pitcher and began pouring small amounts of cool water on it and boy did that thing sizzle!! We opened windows and put fans in front of them to draw all the smoke out. The pack was SO hot but I was able to put it in a bucket of water and took it outside.

It's after 8pm and we still have the windows open and the fans going. And it still smells like smoke in here. But I'm so thankful it wasn't worse!

You know I just realized, she has a smoke alarm downstairs. I wonder why it didn't go off?? I'm going to go check the batteries...

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!    

A Letter From the Doctor

Beth got a letter from the doctor today. The results of her lab work are: she needs more medicine. The doctor is raising her dosage from 62mg a day to 75. She said it may be the cause of her weight gain.

All the levels look good, her HGB A1C, Free T4, Glucose, everything is within the normal range except her TSH. That is very high. So, we'll up the dosage and see what happens.

One thing Beth liked about this new doctor is the examining room. Usually you have to sit up on the small bed type thing and it terrifies Beth. She has become SO afraid of heights the last few years. It's so bad that we had to put her mattress and box springs on the floor. She just refused to sleep in her bed because 'it was too high.'

So when we went into this new room, she got a big smile on her face! The nurse motioned for her to 'have a seat' and she loved it! She was completely relaxed and I think that helped her when she was talking with the nurse.

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!

I Wish I Had a Hazmat Suit

I actually thought that this morning as I was putting on the longest jeans I could find, the thickest socks, the chunkiest tennis shoes.

See, we found two large spiders in one of Allies toy buckets. Actually, Allie found them. In this sweet, 3 1/2 year old voice, "Nana, there's a spider in my cars."

WHAT?!??!

But she was wrong. There were TWO spiders in the bucket with her toy cars!

Diana came out and took charge. She grabbed a butter knife and was going to bludgeon them to death. "What is the better end to use, the knife or the blunt end?" I decided the blunt end because it was bigger and she had a better chance of actually hitting them with it.

I personally would have gone with a blow torch, but ours was in the shop.

Allie kept standing there, very close to them, telling Diana and I that she was afraid of spiders. Liar. If she was so afraid of them, she'd be in the next room. Standing next to me.

We thought about throwing a big towel over them, then putting the little bucket into a big bucket and throwing it outside. But neither one of us wanted to get that close to them. Diana debated about our next move, crouched a couple feet from the bucket. I stood a couple yards away, hot pads on both hands, waiting to run at any second.

I finally got the Raid. Diana sprayed them to death, then threw a towel over them. With the hot pads still on my hands, I grabbed the little bucket, put it into a larger bucket, then threw everything out into the backyard.

It would have been much easier if we had just had that hazmat suit.

I Want to do More

I want to do more. More for children and adults with special needs and more for their parents. This is something that has been on my heart more and more the last couple of years. The Lord has brought people across my path, given me a vision for Special Connections (our Sunday school class, but I see so much more) and lit a fire in my heart for it, but fear is keeping me from doing anything.

I need to call a mom who has a child with Down Syndrome, but I don't think I can really help her. She lives almost 30 minutes away. I don't have extra cash to share with her. I can't shuttle her son to activities. Not that she's asked for anything, I'm just afraid to call because I have nothing to offer. But in my heart I know she could use a friend. Even someone to just listen.

I see Special Connections Youth, with activities for the young adults at our church. Inclusion of course, assisting them in the youth choir or taking them to Sunday Night Live, an evening worship service geared to our youth. I knew of one other guy with special needs, but DART stopped their bus service on Sundays and they no longer come. Maybe I should call his mom and offer to come get him? But his mom is so needy and I know she'll count on me for rides to church in the morning, lunch in the afternoon, grocery shopping. How do I limit my time with them? But ya know, so what?? Isn't that what the body of Christ is for? My life is not my own and maybe I should be willing to give up MY time. MY day off. MY weekend. Give it up for HIS day. HIS weekend. HIS life, lived through me.

I want to expand our classroom, increase our sensory toys, our square footage but that's out of my hands. It may happen this year, maybe in the fall. Maybe. In the mean time I try to work with what we have. The kids seem bored on Sundays.

Have you ever been called to do something, but felt so inadequate you don't do anything at all?

Down Syndrome - 24 Years Ago

I was looking through some old books the other day and found one titled Elizabeth Joy. It caught our eye in the store 24 years ago because of the title. My middle name is Joy and our Beth, well her official name is Elizabeth.

Elizabeth Joy is the story of a 2 year old (at the time) girl with Down Syndrome. Beth was two when Chuck bought the book for me for Christmas. I couldn't wait to read it! To read about someone else who was going through the exact same thing as we were?! Amazing!

Remember, no cell phones, no computers, no blogs, email... it was very isolating.

I flipped through the pages the other day and had forgotten that I had highlighted paragraphs that explained exactly what I was going through. The author is from England so her speech is slightly different from American English, plus it was written 26 years ago, before 'people first' language. It surprised me to re-read some of the chapters:

"Strangely, I had never felt I could ask God for a normal baby. I'd always felt He was asking me to be prepared to accept whatever He sent us, as if we were being prepared.... "

"I had really wanted to explain to my friend how I felt about it all. I think she expected me to be devestated. I told her how God had prepared us for Elizabeth... the sense of preparation while I was pregnant. I never felt that He deserted me. He was more real in hospital than at many other times in my life. I had certaintly learnt things I could never have learnt without losing the very thing I'd set my heart on: a normal child."

"It was good to explain to my friend that she didn't need to feel sad for me. It's been hardest for me when people have not reacted at all. Maybe they don't understand and perhaps they are afraid of saying very much. But to have people react as if I'd said my daughter has a cold makes me feel like I must be imagining the pain I feel."

This part I underlined and put a star next to it. Talking about comparing your child to others -

"It could create a lot of guilt if you felt the child's progress depended entirely on your own efforts."

I remember feeling guilty. If Beth wasn't doing the same things as other kids, even kids with Ds that I probably wasn't working with her enough. Wasn't doing enough for her. I remember the guilt was intense. I knew I shouldn't compare her with others, but it's hard not to.

Oh my gosh! When I read this this week, it brought back so many memories!

"It had been so difficult at first when friends arrived with their babies. I had felt as if I had nothing in common with them. It had surprised me when they had mentioned diapers or feeding and I had realized I was doing similar things. But I still felt unlike all other mothers, as if I'd never 'made it'. This feeling took a long time to disappear."

Oh my gosh yes! I remember feeling like this! Sitting in a room filled with moms and their 'typical' kids, I felt so isolated and alone. No one knew what to say. It was like I wasn't a 'real' mom. So gut wrenching.

Then she talks about going on vacation and seeing a bus full of passengers:

I began to realize that the passengers were all handicapped. I couldn't take my eyes off them. I knew I shouldn't stare yet I felt compared to keep looking. Was it to see if any of them looked like Elizabeth or what Elizabeth would look like in twenty years? There were several with Down Syndrome. It seemed as if I was looking at people quite familiar to me, no longer strangers. Elizabeth had brought us a special link with these unknown people. Although they would never know it, I had my own reason for especially loving them."

Isn't that the truth?? I'll see someone at the mall who has Ds and I feel like we're best friends! I want to just go up to them and give them a big hug and yell Hi! Like we're long lost friends! I know I'd probably spend the night in jail so I refrain, but you know what I mean!

Re-reading this book has been interesting this week. Brought me back to the days of so much fear. Mainly fear of the unknown. But now that we're here, now that we're living 'in the future' I was so afraid of, I can tell you.... it's not that bad. As I'm typing this, Beth has come upstairs for a snack. She's in the pantry, going through the cupboards seeing what we have to eat. She's about the level of a 12 year old. She loves The Jonas Brothers and is getting out of the Disney Princess craze. She uses the microwave a lot but only uses the stove with supervision. It's a pretty normal, basic life. Devoid of all that fear I had all those years ago.