A Little of This and a Little of That

 Hello!

It feels like it's been longer than a week since I've posted. I hope you all had a blessed Easter and that this week has been a good one.

Our church has a Good Friday service for the adults, and the Kids Team does a Good Friday Experience event downstairs. I opened our classroom and was available for any kids who found the Experience too overwhelming. There was one student who didn't want anything to do with the event so we spent the evening in our room, singing, writing the alphabet and swinging in the swing. The event is amazing though. The classrooms are decorated as the Garden of Gethsemene, the Last Supper, the courtyard where Peter denied Him three times, and there are actors that tell about the events that happen in each area. I wish the adults could go through it! I took a few photos before the kids arrived.

It's really powerful. One of the kids asked 'Peter', "If you were alive when Jesus was, how are you here now?" It truly brings the events of Holy Week to life. 

We went shopping a few weeks ago and Beth bought herself a wooden sign. As it got closer to Easter I decided to buy a couple things so the two of us could paint together. While she slept in I got the table and all the paints ready. She was so happy to come up and paint. And it was fun to have some time together. Sometimes our schedules are so busy we can go a full day or two without seeing each other.

She helped me fix breakfast for dinner one night: pancakes and scrambled eggs. Do you ever do that, have breakfast for dinner? We don't do it very often but we love it!

In April of 2024 a dear friend of mine passed away so I visited his grave last week. Took me a while to find it. And even though I know he wasn't there - he loves the Lord and is face to face with Him now, it was good to be there.

We've had warm, sunny weather the last couple of weeks and it's been so nice! I even bought some flowers yesterday and am hoping to get them planted this weekend. 

Can't think of anything else to write so I'll close this. Take care. Have a good weekend!

His Love for You is Like No Other

 They brought Jesus to the place called Golgotha and they crucified Him. 

The written notice of the charge against Him read: The King of the Jews. 

It was nine in the morning when they crucified Him.

Mark 15:22, 25, 26

When the Sabbath was over, Mary Magdalene, Mary mother of James and Salome brought spices to anoint Jesus' body.

When they got there they saw the stone had been rolled away!

A man dressed in white (an angel) told them, "Don't be alarmed, you are looking for Jesus of Nazareth, who was crucified. He is not here. He has risen!

Mark 16:1, 4-6

As we remember His sacrifice on the cross, and celebrate His resurrection this weekend, I pray you experience the tangible presence of the living God.

His love for you is unmatched.

Scary Stuff

 Something happened recently that I haven't told you about. When I took Beth to the doctor a couple weeks ago and the x-ray showed she had bronchitis, they put her on two different antibiotics. One was a z-pack. Take two the first night and one every day after that. When I got back from the pharmacy I gave her the first two and told her to take one the next day and I'd come down to see her when I got home.

Now, I'm working 10-14 hour days. Chuck stopped by the house at lunch to check on her - all was well. 

So that next evening I went down to check on her and noticed the z-pack was on her recliner. An interesting place to put it. When I picked it up it was empty.

"Beth where's the medicine that was in the box?"

She put her head down, no response.

"Beth did you take all of this medicine?"

Without saying anything she opened her desk drawer and began shuffling things around like she was looking for them. I reminded her what it looked like but she never said a word, just kept moving things around her desk drawer. I asked her again, by now my heart is beginning to race.

"Beth did you take all the medicine?"

Again, no response. I checked her forehead but she felt fine. She had been laughing at whatever was on TV, so she was feeling good.

But I went upstairs and called the doctor. It was after hours and when I told the answering service what happened he immediately transferred me to the Poison Control Center. 

That's when I began to cry.

After spending a few minutes talking with her she reassured me that the small dosage Beth had would not cause problems. She might have some bowel issues, maybe a stomach ache, but nothing serious. However, if she does begin to feel dizzy or she faints, call 911.

Needless to say I didn't sleep well that night. Even got up at 3:00 to check on her. She was snorin' like a freight train. (Couldn't wear her c-pap because she was so congested.)

Checked again before I went to work the next morning, still good. I texted her throughout the day and she always texted right back. The doctor called me during the conference - I took the call outside - and she told me that if Beth wasn't having any side effects by now, she was going to be just fine. It might be a week or two until we see her bronchitis improve but she was going to be okay.  

And she has been. Not one single issue. I sometimes wonder if she really did take them. I don't know. I just don't know. I'm just thankful she's okay.

Besides Work and Illness - What We've Been Up To

For the last couple of months Beth would get really congested and she'd be coughing, then she'd begin to feel much better and would go out and about again.

It was during one of these times that we got gym memberships! The first time ever. We've only been able to go a few times but as the weather gets better - and Beth stays better - we're planning to go a couple times a week. With this being our very first membership, we're learning that you have to clean each machine you use. Thankfully they provide the cleaning spray and the towels. It's been really fun and we're looking forward to going more often. 

Have you seen The Chosen? We've watched all four seasons and now season five is in theaters, two episodes each week. When we left the theater last week I told Chuck it helps me understand the culture where it took place. It kind of fills in some missing pieces for me. I know they've taken some creative licensing in some of the storylines but the facts remain true to the gospel. For example - Doubting Thomas. The Bible doesn't tell us why he doubts Jesus is alive, so the creator of The Chosen created a storyline of one possibility of why. But they show the Biblical fact of Thomas having doubts about Christ. We're actually going to see two more episodes later today.

I was given an orchid a few years ago and haven't had a single bloom. I keep moving it from this table to that window and last winter I decided to try one more spot before throwing it away. And guess what?! It bloomed! I'm so glad I finally found a spot it likes!

Beth and I ran errands earlier this week. She was running low on lined paper and was desperate for more. We tried a few stores before finding some at a drug store of all places. She was very unhappy when the Staples in our area closed. She still talks about it every time we drive by where it used to be. After our search, we decided to stop and get a snack and something to drink.

The day before the conference at work, I took some time to go down to the waterfront. We have about 3 miles of coastline that includes beaches, a marina, a dog beach, and the ferry dock. I usually go to the north end of the waterfront but this time I went to the south. The mountains were so clear it felt like you could just reach out and touch them. 

We're so blessed that we get to live here. Just five minutes from the water. I'm just noticing how gray these pictures are! Hahaha! Welcome to Seattle! All the stories are true! 😂

Well, that's about all from here. I hope things are going well with you. Have a good week!

Questions about Beth's Boyfriend and The Hardest Thing About Caregiving

Hey everyone,

The conference at work went well. There were two main sessions, plus break out sessions during the day for the pastors, then one large event in the Sanctuary each evening where people from the congregation could attend. Friday nights event had over 1000 people. It was a glorious night of worship with David and Nicole Binion. They shared their new project The Revelation, and their new song The Letters just wrecked me.

To answer more of your questions - 

One reader asked about Beth's former boyfriend. He and Beth broke up a year or two after covid hit. Honestly, they weren't a good fit. He was very social, and she is very shy. He always talked about the two of them getting married and buying a house but Beth didn't want to do that. She came to me once in tears, "I don't wanna move out of our house!" But she'd never say anything to him about it. They're just very different people. And with covid they ended up not seeing each other for many months so they both decided to just end the relationship.

I sometimes wish she would find a guy that is more her type. Someone she could hang out with, go to dances, and someone to give her special gifts on her birthday and holidays. That is one thing her boyfriend was good at. He was always so thoughtful in the area of gift giving.

Mo asked, "What do you find most difficult about being Beth's full time caregiver?" The first thing that comes to mind is: the speed at which she lives. The word 'hurry' isn't in her vocabulary. She's just wired to do everything at a slower pace than the typical population. It takes her longer than normal to give a verbal response, to brush her teeth, to eat a meal, to get out of the car... The 'R' word is extremely offensive to most, but just like fire retardant slows down a fire, Down Syndrome slows down a person. Her slow speed sometimes makes me so frustrated.

One thing I've learned is to leave her notes. If she has someplace to be, I'll let her know when to wake up, what time to 'be upstairs and ready to walk out the door'. We've used that term for years. 'Be upstairs' doesn't mean she comes upstairs at that time, but that she's upstairs, has her hair done, has gone to the bathroom, has her jacket on, and is completely ready to go at that time. She does really well with these, they've helped a lot!

Another thing that makes caring for her difficult is her lack of communication. She can talk, she just chooses not to. When we're shopping she'll just walk away without saying anything. She won't tell us if she needs something or if she's hurting. It's a constant guessing game, "Beth are you okay?" "Beth is something wrong? Why are you crying?" Like the day I asked her if I could take some pictures of her. She said yes. Then we went outside and...

Every picture was like this. She never did tell me why she was upset. 

I can't help but wonder why she won't talk. I wish I knew. I have lots of theories. I'm trying to change the way I do some things. Adjusting here and there. Parenting is tough. You find yourself second-guessing every decision.

But one thing that is not hard about parenting Beth, is her ability to quickly forgive. That girl can be so mad at you and a few minutes later it's over. She doesn't hold a grudge. She never stays mad for long.  

It's been a journey that's for sure. She's a great lady and I'm thankful she's mine.

 

Sick

We're in the middle of hosting a large conference at work and the busiest days are still to come. Tonight they're having a dinner to honor the pastors that have come from all over the country.

Now for the real reason I'm writing.

We all got sick a few weeks ago, mainly just congestion with a slight cough. Its been going around here in the Seattle area. We'd start to feel better, then feel worse. Off and on for a couple weeks. Then it was done. 

Beth was the same way, until this past Sunday. She woke up very congested. We started giving her meds again but it didn't seem to help. Then her cough changed a little. So yesterday I took her to the doctor.

All of her vitals were normal so they did a chest x-ray. We found out she has bacterial bronchitis. So now she's on antibiotics and even just 24 hours later she's starting to feel better. No karaoke or bowling or work this week but she's hoping to get back to church on Sunday. She's been stuck in her room for much of March and she's ready to get out and about!

World Down Syndrome Day - Answering Your Questions

Thank you for your comments on my last post. I'm happy to answer your questions. Leslie from Once Upon a Time and Happily Ever After asked "How and when did you learn Beth had Down Syndrome?"

We didn't find out until after she was born.

She is our oldest, born in 1984. Chuck was 26, I was 23 and I had a very normal pregnancy. Had a lot of morning sickness the first three months, but the last six were truly amazing. I loved being pregnant. Seriously. I continued working, only gained about twenty pounds, and I felt really good. 

I always thought when your water broke you would know without a doubt when it happened. But mine wasn't like that. I had a tiny discharge, just a couple tiny drops that looked like urine. That went on throughout the day so the next day I decided to call my doctor and he had me come in to check. When they tested they found it was my water, and because it had been more than 24 hours they scheduled an emergency c-section. My doctor was not at the hospital so the doctor-on-call performed the surgery.

I was terrified. This was not at all how I planned for it go. Even after 40 years I can still see the rhythm of the ceiling lights as they wheeled me into the operating room. I was shaking like a leaf! They gave me a local spinal block anesthesia and after that was in place, Chuck was allowed in the room. He also got to be in there during the surgery! I don't think that would happen today! I was so relieved he was there though. Thankfully everything went well. 

I was in and out throughout the surgery but I still remember him holding Beth and showing her to me. She was so beautiful! Then I was out again. I hadn't noticed. Neither had Chuck.

When they went back to weigh her and get her vitals, the doctor-on-call bluntly asked Chuck, "Did you know your baby has Down Syndrome?" He was shocked. At both the news and the way it was delivered. Chuck asked them not to tell me until he came in the next morning.

My whole family had come to the hospital that night and got to see her through the window in the nursery. None of them noticed.

My mom and Chuck went out for coffee, even though it was after midnight by then, and Chuck didn't tell her. He wanted to wait until I knew before he told anyone else. I married a good man! 

Early the next morning, before I had seen Beth my regular doctor came in, sat on the edge of my bed and said, "Your baby is showing signs of Down Syndrome. We're going to do some tests to be sure and we'll let you know when we get the results." He said something about chromosomes and therapists and case workers but I wasn't really listening. I burst into tears and said I wanted to call my husband. Obviously my doctor didn't get the word about waiting.

I was still crying when I called him and he instantly knew. As soon as he came into my room he pulled up a chair next to the bed, took my hand and asked, "We can still love her can't we?"

Oh my gosh, yes!! I want her too! They brought her into my room and we instantly fell in love.

Please don't judge me by the way I'm holding her. I was a new mom and had no idea what I was doing. Now when I look at this picture I have an overwhelming desire to pull her closer.

We called all our family and asked them to come to the hospital. I was holding Beth when we told them. I remember them asking a lot of questions but at that point we didn't know anything! Will she be able to walk? Will she be able to go to school? We had no idea. We had no family history of DS and didn't even know anyone with DS. And then they all asked to hold her. And each one fell in love with her too.

A funny story - our families were in and out of my room all hours of the day. Beth was always with me, they held her, and we loved on her. Then on day three my dad came and I was told they couldn't bring Beth in because it wasn't visiting hours. Huh? Then we learned my doctor wanted to see how we would treat Beth, will we put her in a corner and figure out what to do with her? When he saw just how much we loved her he knew she would be okay and he reinstated the visiting hours. My doctor was older, like a grandfather figure. He truly only wanted the best for us. 

These pictures are very bad quality - this was back when we used film and you had no idea how good the picture was until you had them printed. But I hope you can see the love from my parents and sisters.

So we took her home and loved her.

We dedicated her to the Lord. 

She learned to walk and talk...

And run!

And she started taking the bus to school when she was 2 years old.

Like I've said before, this isn't a journey we chose but we wouldn't be who we are without Beth. The Lord has used her to shape each of us individually into the people He needs us to be. As well as our shaping our family unit. 

March 21 might be World Down Syndrome Day, but Down Syndrome has a part in our family every day.

I'll answer more of your questions in the days to come!

What to Write for World Down Syndrome Day?

March 21 is World Down Syndrome Day. People with Down Syndrome have three copies of the 21st chromosome, so in 2011 the United Nations declared 3/21 as WDSD.

I started this blog back in 2009 and feel like I've written everything there is to write about DS. Do any of you have questions about DS? Or about Beth, or our family?

If there's something you'd like me to write about please leave me a comment. If you'd like to comment privately, you can email me at bethsadventures@hotmail.com.

Thank you! Have a good week!

Our Annual Assessment and Some Day-To-Day Things

'A' got to the house around 10:30 on Thursday and did a thorough assessment.

Beth came up about 20 minutes after she got here (we went down and told her 'A' was here and it was time to come up, she just... didn't.) But it gave me an opportunity to privately tell her I'd like to get some assistance for Beth at home and explained how she might receive things better if it wasn't coming from me. I thought it might be awkward saying that in front of Beth. A is going to look into Respite Care.

She also recommended another day program and I love some of their classes. One is Dancing to Disney. Hello! That has Beth written all over it! And another is Musicals. Reading scripts, creating props, singing. Her face lit up when I was reading these class options. It's expensive though so A is going to check to see how much they can help her with. I need to check out the days these classes are on to make sure there isn't a conflict with her regular schedule. If there is, she'll need to make some some choices.

That was on Thursday. On Friday Beth and I went to a Planet Fitness that just opened near us and had a look around. She's excited about getting a membership so that will be our next step. 

Then we stopped at the grocery store for a few items, then went to Penney's to get some work-out clothes. She got some leggings and a couple of T shirts. 

On the way home from Penney's we stopped at Chick-fil-a for lunch. It's our favorite place!

Unfortunately Beth started getting congested yesterday so she stayed home from church today. We're giving her meds and she's drinking lots of water. Hopefully she'll feel better enough to go to All Aboard on Tuesday.

That's about it from here. I hope you have a great week! This second week in March. The year is already going so fast!