A few weeks ago I heard a strange sound coming from downstairs. It almost sounded like a bird chirping. It was a high-pitched, short, squeak or a chirp kind of sound.
I went down to see what it was and saw Beth in bed and she would make this sound when she was inhaling. I watched her for a few seconds when all of the sudden she gasped for air, took a couple deep breaths and then fell asleep again. Although I don't think she was ever actually awake.
I called the doctor and scheduled a sleep study. I decided to do the at-home study because I wasn't sure how she would do in a 'sleep lab'. The doctor in our local doctor's office didn't have anymore kits so we had to drive up to Everett (about 15 minutes away) to get it and the assistant showed us how to use it.
I'm so glad there were pictures because I didn't remember everything she said!
We came home and finally around midnight I told Beth it was time for her to go to bed. She usually stays up as late as she wants but I was tired and wanted to go to bed! We got the actual monitor hooked onto her chest, then attached the oxygen monitor on her finger and she put on the cannula. When she first got into bed, she laid kind of awkward and I told her she just needed to sleep the way she normally did.
After a few adjustments, she was good to go. Then I went to bed and slept hard! Around 7:30 I went down to unhook everything. She said she got up in the middle of night to use the bathroom and she did good but it was hard with her pants "cause of this" and she shook her finger.
I returned the kit that morning and now we just wait
to hear from the doctor. I expect she'll need a CPAP machine, but we'll
On Friday Beth and I headed up to Kohls to do a little shopping because she really wanted to find a new dress for Easter. When she had a few items we headed to the dressing room and I asked her if she wanted me to go in with her or wait outside. "Wait outside." Okay, I can do that. I was looking at some jeans right outside the dressing rooms when I heard her yell, "Woohoo! It fits!" She walked up and down the little hallway in the dressing room, checking herself in the mirror, she spun around a few times... I think she likes it!
On Saturday, Chuck, Beth and I decided to go see I Can Only Imagine. It is such a good movie! It's the story of Bart Millard of Mercy Me and the song he wrote.
I can only imagine what it will be like when I walk by your side. I can only imagine what my eyes will see when your face is before me I can only imagine
It's about getting to heaven and seeing the Lord face to face. Dennis Quaid plays Bart's dad, Trace Adkins is in it, Cloris Leachman, it was heartbreaking and uplifting. SO good! I highly recommend it.
Beth sang this song at karaoke once so of course she was singing along during the movie!
After the movie we stopped at the grocery store and she grabbed a cart and took off! I guess her cupboards were getting bare!
You can never have too much ketchup!
I hope you had a great weekend, with good food on your table and a song in your heart!
All morning at work I thought about Beth's Connection Card, and her and Nick being at home by themselves. I planned to leave work early so that they'd only be here for maybe 30 minutes before I got home.
My mind went to places it shouldn't have gone, imagining the worst that could happen, why do I do that?! Am I the only one?
Anyway, as the day wore on I began to think about the two of them, their personalities, things they're apt to do or not to do and how more than likely they wouldn't do anything to get themselves into trouble, maybe a little first base, possibly second base but nothing more. I began to relax and ended up working my regular hours.
I texted them both not long after they got to the house and told them, "I'll be there soon" (even though I wasn't coming for a while) so they would be expecting me to walk in any minute.
going to tell the details here. Only to show our lives, to tell our
story. And if you have a child with Down Syndrome maybe you've already
been through this, or maybe your child is still young and you're
wondering what you can expect when they get older. I also want to say,
every person who has Down Syndrome is very different from other people
who have Ds and your child may not go through this. I'm only sharing my story.)
(And please don't judge these two. They're just young adults trying to figure out their way in the world.)
When I got home I went downstairs to let them know I was home. They were sitting in kitchen chairs but were very close to each other and Nick had his phone up like he had been filming something. Beth put her hand by her eyes, something she does when she doesn't want to be seen and Nick just stared at me like a deer in headlights. They said they had a good time bowling but offered no other info. It made me very curious about what they were up to so I went back upstairs and fixed some tea. A few minutes later I stood at the top of the stairs, just listening. I heard Nick say, "Show me your moves!" and I could hear Beth move her chair After just a few seconds he said, "That's it?" and Beth responded, "Uh huh."
Then he told her to get on the bed and show him her moves. "Get on the bed, Beth." That's when I headed down. Beth was out of her chair and beginning to take her sweater off. She is so timid and basically does anything she's asked. Dangerous or not. She just doesn't seem to be able to defend herself.
And Nick is just the opposite. He's very controlling and insists everything go his way. For instance, our church serves dinner on Tuesday nights and last night they were having Swedish Meatballs. That's Beth's absolute favorite meal! They got their food and drinks and I joined them a few minutes later. I saw that Nick had chicken and rice and Beth had... chicken and rice? "Beth, you didn't get meatballs? I'm surprised!" She just hung her head and Nick picked up his phone and began scrolling. Sigh... I'm thankful he was able to ride the bus with her yesterday and that they got to hang out for a while but I learned they can't be left alone for too long.
Beth adores him and loves having him as a boyfriend but isn't ready to get married anytime soon. They love dating and being together so we'll continue to just take one day at a time.
Beth and Nick met when she was 30 and he was 28. We never thought she'd have a boyfriend, she'd been single and happy for so many years we figured it would be that way forever!
Both Sharaya and Diana dated and had guy friends but Beth never did. When Beth was in her early 20s she would occasionally say she wished she had a boyfriend but even stopped saying that after a couple of years.
It was hard for her when Sharaya became engaged and got married. Then when Sharaya got pregnant, she remembers Beth not talking to her for months. Was she jealous? Angry? Maybe both. But eventually she was thrilled to become Aunt Beth and loves to play with Allie. She became content with her life and it's routines and schedules.
Then Nick appeared on the scene. He has changed everything! I've become Beth's Social Secretary, so to speak. She'll come to me and say, "I want Nick come over on Tuesday." I'll check my calendar and we'll find a Tuesday that works for us then I'll write down the details. "What do you want to do when he comes over?" "I want him ride my bus with me." "Oh, so you just want him to ride the bus with you after bowling so you can spend some time together?" "Yeah." So then I text his mom and let her know of our plans and give her the dates and times to see if that works with their schedule. Once all the plans have been made, I'll go down and tell Beth the details. "After bowling on Tuesday, Nick will come here and you two can have lunch together." I'll make sure she has enough food for the both of them and that it's something they both like.
Of course, I'll come home early that day to make sure they're not home alone for too long. And I will tell her what time I will be here too. And I will go downstairs as soon as I get home to let them know I am home and that they are no longer alone.
(Beth recently wrote a prayer request at church that could be considered *ahem* R-Rated.) Oh Lord, help!!
There's a rest stop just inside the California (Oregon) border on I-5, right alongside the Klamath River. We've driven to San Diego so many times that we actually look forward to this rest stop. Like driving to your old high school or visiting the neighborhood where you grew up.
taking the same picture every few times we'd go down to California.
Once, we went down 3 times in less than a year so we'd have to wait
until the girls had actually changed enough to see a difference, but
we'd get so excited about recreating it!
Then one time, the sign was gone!! We looked all over to see if maybe they had moved it to another part of the rest stop but nope! It was just gone. It was like losing an old friend.
So I asked the girls to pose one last time and they just laughed at me!
"Awe, come on! Just one last pose for old times sake! Pleeease?!"
Sharaya looked around to make sure no one was looking. Diana and Beth looked so embarrassed! They were laughing so hard!
But they did it!! They posed for like a half a second and I got the picture! The end of an era at the Randolph-Collier Rest Area.
We have so many road trip stories but this is one of my favorites! So much laughter and a crazy picture to remind us! Do you have a favorite road trip story?
Diana was here for a week but I didn't take one picture of her! I got the ones at Chuck's party but that was it. We all went out to eat on Wednesday night, her and I walked along the marina downtown, we spent a day shopping... it was so good to have her home.
I've added a few things to our classroom, trying to make it better without creating too much change. I bought a barn to go with the doll house but didn't realize it needed to be assembled. I was a little shocked when I opened the box, but it only took me 90 minutes to put it all together!
I also added a canopy to a large, platform type thing we've had in our room for a while. The first time I saw it, I thought of something like this! It's taken me a while to put it all together but I see it as a place for them to sit and read or even just a quiet space.
Do you have a quiet space where you go to just chill?