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!

Beth's Case Worker

Every January since Beth graduated from high school we have an assessment done with Beth's case worker. They come to the house and go over a list of things that Beth is doing or is unable to do. 

Does she cook her own meals? (In the microwave, yes)

Does she need help getting dressed? (No)

Can she make her own doctor's appointments? (No)

Does she take medication on her own? (Yes)

How would she respond in an emergency? (Not sure)

Can she take public transportation alone? (No)

Pages and pages of questions, all determining her abilities which in turn determines how much money she would receive from DDD - The Department of Developmental Disabilities.

And every year they ask if Beth needs extra assistance. And every year I say no, we're doing well.

But the last six months or so I've been thinking how Beth might respond better to someone else helping her with her food choices, her activity levels, and hygiene. No forty year old wants their mom telling them what to eat or when to go to bed at night.

T has been her case worker for many years now and we really liked him. I emailed him earlier this year to ask about changing her waiver. The waivers represent different levels of assistance. That's when he told me he's moved to Eastern WA and Beth will be getting a new CW. It wasn't easy telling Beth that news.

I got a call a few weeks later from A, the new CW. She introduced herself and we set up a time to meet. Less than a week later we got a letter in the mail telling us A was no longer our CW. 

I called them to ask about our meeting, will we need to reschedule with someone else, and was told that letter was a mistake. They were only supposed to send that out to A's old clients. A is still our CW and our meeting is still on. Whew!

The meeting was for last Monday, February 24. I got off work early and as I'm pulling out of the church parking lot A called. She's not feeling well. Could we postpone the meeting an hour, and have it over the phone. Absolutely! No problem at all.

Chuck, Beth and I are sitting at the kitchen table, phone ready when our meeting time came and went. About 20 minutes after, I texted her and asked if everything was okay.

She felt so bad! Said she had taken some medicine and had fallen asleep. Could we reschedule for later that afternoon. Unfortunately Chuck and I had to get back to work so now our new appointment with the new case worker is scheduled for this Thursday, the 6th.

I'm really hoping to get an assistant for Beth. Someone to come by once a week or twice a month, just to help her clean her apartment, teach her good health habits, maybe take her shopping, to the movies. I think it will be good for both of us.

Such a Fun Visit!

I flew home from my sisters late on Monday the 10th, worked the 11th through 13th and Diana and Adelaide got here late on the 14th. Those few days we finished getting the house baby-proofed, setting up all the toys I had (I saved a few for later in the week) and making sure the den was ready for them. If I remember right, Saturday we just stayed home. 

We went to the aquarium, went out to lunch, went to an indoor play place, we played cards, watched movies, it was a fun, full week! I'll share just a few of the photos:

Making bracelets with pipe cleaners

Adelaide and friends watching Bluey

It was the first time I'd been to our aquarium in many years. It's changed a lot. There were different sections, multiple stories, and even separate buildings. There was a lot to see.

If you ever get a chance to see it, I highly recommend it.

We left there and took the new Overlook Walk to go get some lunch. Seattle used to have a double decker highway that ran right through the city. We recently tore that down and put in the tunnel, then built a beautiful area to view the waterfront and easily get to Pike Place Market. It was supposed to pour rain that day but the Lord answered my prayers and we only had clouds. And wind. Lots of wind.

As they were heading to the airport, Adelaide grabbed the little Tigger (I have the whole set) and never let go. Tigger lives with her now.💖 

Have you heard of the Wingman Program or Visitor Pass? SEA has a new program that allows visitors to go with you through security and to the gate. Peter was able to get it at their airport and Sharaya got it here, so she could help Diana get Adelaide through security and all the way to the gate. 

 It's okay to tell you now that Diana is four months pregnant! Due in July. You can see it in this photo, they were playing hide and seek:

So having that help through the airport was a Godsend! We're planning a trip back there after the baby is born.

It has taken me such a long time to write this. There's so much I want to tell you about Beth and my job and Sharaya's promotion, but I really need to close and start getting ready for work tomorrow. I'll try to write again soon.

Hope you're all doing well. Take care!