Our state’s Down syndrome foundation had some free tickets to a pro-basketball game, and we scored 2 tickets, so John took Wes tonight.

John said as he took Wes inside they stopped by the concessions and offered Wes a giant pretzel, but Wes said, “No, I full.”

Then they passed the ice cream vender, but Wes said, “No, I full.”

(At which point in the story I stopped John and said, “Was Wes sick?” He never turns down ice cream.)

But it turns out he just was really excited to get inside.

John said that Wes LOVED the game. Every time anyone scored a basket, Wes would jump up out of his seat and cheer. It didn’t matter which team. John kept telling him to say, “Go blue! Go blue!”, which he would, but sometimes when the other team would score he’d throw his hands in the air and shout, “Go white!”

Just as it was time to go (they left in the 3rd quarter, which was later than planned), as Wes got his jacket on, he looked up at his dad and said, “Ice cream.” He was ready. But it was also bedtime so it was a no-go.

However, he came home sleepy and so happy. Yay for basketball.

One night last week while we were on vacation I listened to Carissa (age 4) say her bedtime prayer. She talks about lots of random stuff in her prayers, and includes some things that I think she must hear at church, but her prayers usually give me some idea of what’s happening in her life and head.

This night she said something like, “Please help Wes to not have Down syndrome anymore.”

When she finished I told her that while her prayer was very thoughtful and kind, Down syndrome isn’t like being sick, and Wes would have Down syndrome for as long as he lived.

She asked, “Even when he’s 20?”

I explained again and thought about where this prayer may have come from. Occasionally when Wes is having a hard time with something, like with behavior or understanding, Carissa will ask about it and sometimes we tell her that Wes has a hard time with this or that because he has Down syndrome. We want her to know he has Down syndrome. She seems to understand it in its most basic form, which is that Wes does things sometimes that seem different or wrong because of Down syndrome. I think she maybe was thinking that this would be something he’d outgrow, like age-related behaviors, the way we tell her that her little sister won’t be a baby forever and do those baby-type things that make her mad.

We haven’t talked much in our family about death and what happens after that, but I tried to tell her that after Wes dies and is resurrected (which I’m pretty sure she doesn’t have any clue about, but I threw it out there anyway) his body would be perfect and then he wouldn’t have Down syndrome anymore.

I know she didn’t get it. I told her we’ll have a Family Home Evening lesson about it sometime.

The next night, John’s mom was babysitting and heard Carissa pray at bedtime. She told us later that she got concerned when she heard Carissa say, “Please don’t let Wes die.”

Clearly we have more to teach and more to learn together about Wesley and about Down syndrome in our family.

The thing is, I believe Down syndrome is temporary and a part of the mortal testing-ground only. It lasts as long as his body does, and then when his spirit and body are reunited in resurrection he’ll be “restored to [his] proper and perfect frame.” (Alma 40:23)

Wes is WES–more than his body, and more than the limitations placed on his body and mind that come from one pesky, extra chromosome. I wonder sometimes and try to imagine what it will be like to live with him in the eternities, when he is freed from these limitations and gets to understand things fully, express himself fully, and experience the fullness of joy that comes from having a family of his own.

Talk about perspective. If only I could remember all this when Wes is flopped on the ground in a store and refuses to get up and I can’t lift him. Or when he runs away in a public place and I’m yelling for him to stop and chasing him at top speed while everyone watches. Or when I’m talking yet again to his teacher/speech therapist/behavior therapist/resource teacher/school psychologist/principal/etc about ways to help him do better at school. Or when we tell him something for the umpteenth time and he still doesn’t do it or get it. Talk about frustrating.

The honest truth is that I often feel weary. It is a tiring and heavy and difficult job in a way that is impossible to explain or justify in words. Should I even admit that helping my son makes me weary? Can I do that and still be a good mom? Should I do that when I know other parents deal with so much more?

Some days it is a struggle to find balance between 1) handling the challenges that are daily and ongoing and in some cases getting harder, and 2) recognizing and collecting and savoring and then remembering the very precious elements that make up this very precious person who is (I am so lucky) my son.

Perspective.

I have heard several theories from others about why Wes and others like him may have Down syndrome, or a myriad of other types of disabilities or challenges. The only one that I really believe in is this one: He gives me opportunity to learn. To learn patience, to learn love, to learn compassion, to learn acceptance, to learn joy, to learn sorrow, to learn faith. I have so much to learn and I hope I have so many more days with Wes to help me continue to do so. I have much to learn. Today I work on perspective.

On our final full day in Oregon visiting my brother and his family we went to the lovely Oregon coastline where we grilled lunch and spent an hour at the beach.

There was a playground next to our picnic table.

Once we arrived, while Josh and John set up the lunch, the rest of us went down to the beach so they could see the ocean. For Elizabeth it was her first time, and maybe the first time Carissa can remember. It was a nice day for the beach. The water was actually warm. Super windy, of course.

Then we ate the lunch that Josh and John carefully prepared: hotdogs and grilled pineapple. So good!

More playing on the playground!

After lunch I took my kids back to the ocean. Carissa loved running into (running away from?) the waves with her twin cousins. We had to watch Wes carefully to make sure he didn’t go too far into the ocean. He was one with the waves. Elizabeth loved the water, but we had to hold her hand so the waves didn’t knock her over.

In just the last few minutes of being in the ocean Elizabeth got knocked over a few times by waves and was unhappy. But we dried everyone off and packed into our cars to drive to the Tillamook cheese and ice cream factory about an hour away.

The scenery was beautiful along Highway 1, which parallels the Pacific Ocean.

Elizabeth was fussy in the car and crying. I tried giving her a bottle of milk. And then, about 20 minutes into our drive, she suddenly threw up. John was driving and he asked if he should pull over. When she threw up again a few seconds later I told him he’d better. Thankfully there was enough of a shoulder where he could pull over (which was not the case for much of the road). I went back to help her and she threw up again, this time a TON of sea water. I guess she had swallowed a lot when the waves knocked her over. We’re grateful, in hindsight, that the water went into her tummy and not her lungs which could have caused secondary drowning. I cleaned her and the car seat up as best I could and we continued on.

To say the Tillamook Factory was busy is an understatement. It was packed and crazy. We managed to get some lunch and walk around the factory tour, and then we stood in line for ice cream. Wes got chocolate (of course!).

The next day was Sunday. We went to church in the morning with Josh’s family. I have to give props to the Primary teachers there, because they really helped take care of Wes. Anyway we visit a different church congregation when it’s time for Primary I’m very careful to meet Wesley’s teachers and the Primary president and give them fair warning about Wes’s ability to run away quickly, and to also explain to them how to help Wes in their class. It’s kind of like an interview process. And then I usually stick around to observe how he (and the teachers) do fora little bit before heading to my own classes with a little prayer in my heart for all involved.

Well, during relief society I heard a voice that sounded like Wes’s in the hall. I left to check and there was a member of the Primary presidency with a male teacher, who was holding Wes. Evidently, Wes had escaped Primary and bolted straight outside. This sweet presidency member didn’t know if he would run into the road, so she bolted right after him and caught him before he got to the street. She had to run through a bunch of mud, which I felt bad about because she was wearing nice white shoes. I was grateful.

After lunch on Sunday our family got back on the road. We wanted to get through most of Oregon that afternoon and booked a hotel in Baker City. We tried to stop at the waterfalls outside Portland, but it was so packed on Sunday afternoon that we couldn’t even find a parking spot, so we carried on.

A couple hours into our journey we hit stopped traffic. It was a fire that had spread along the field next to the highway. We waited our turn to move for a long time.

You can see the scorched ground by the ambulance.

As we finally got to move and pass the site of the fire we saw what really happened. Just outside of my picture is the whole family and their dog standing by their burned RV.

We continued to drive towards Baker City, where we stayed in a Best Western that we got for a fair price via Priceline.com.

The next morning we ate breakfast in the nearby diner with a waitress named Shannon.

Elizabeth sneaked some Oreos as we packed the car to leave.

On the outskirts of Boise we were stopped once again with yet another fire, this time a car fire. Another long delay.

On the other side of Boise we stopped to eat lunch from our cooler at a nice rest top. Kids needed to run.

We drove through the rest of Idaho, including the part where we got a flat tire on our way to Washington. So glad we could drive right past! This time, it rained and thundered with lightening.

John and I decided to extend our vacation one last night by getting a hotel in Draper, UT. It was great. The kids got to swim in the hotel pool before bedtime. It was a Best Western, but a Best Western PLUS, which means it was about 100 times nicer than the standard BW we stayed at in Baker City.

The next morning we had a continental breakfast in the hotel and then went across the street to the mall. John got a haircut and massage while I played with the kids in the mall play area and took them on a train ride through the malls. It was actually really fun. The kids really liked the train.

We shopped a little, including in this store with Hello Kitty stuff. I let Carissa pick out a present for her upcoming birthday.

We also got ice cream (of course) and rode the escalator a bit.

Then we picked up Dad from the hair salon and finished our vacation with a very short drive back home. A long and wonderful and eventful adventure of a family vacation!

I really loved pretty much everything about Oregon. (John didn’t like the full-service gas stations, though.) Just look at this beautiful place:

On Friday Hannah took us on a real Oregonian experience: berry picking on Sauvie Island.

The place was really too beautiful to capture with a camera.

We mainly picked blueberries, but also a few blackberries and peaches.

After we paid for our haul and used the awful port-a-potties Hannah took us to probably the best-kept secret in the Portland area: a beach on Sauvie Island. Maybe it’s the best-kept secret because to get there you drive down a dirt road past miles and miles of adult-only nude beaches. And then, at the very end of the road, is this lovely and not-busy place on the bank of the Columbia River.

Hannah and I both really like the beach. (John does not, but the nice thing about this place was it had some shade. He didn’t want to go to the beach at all but I insisted and so he complied.) We had fun! Carissa and Elizabeth had never been to a beach before. Hannah packed us a lunch and some beach toys, even an inflatable boat that she pulled the kids around in and took Wes for a row in. Wes loved throwing the rocks, and Carissa and Elizabeth had fun in the sand. Every kid needs to go to the beach. We also saw some interesting boats pass by.

At the end of the day, Hannah made us a pie with the fresh blueberries picked that day. Pretty much heaven on earth to me (although no one else in my family really likes blueberries. More for me.)

On Wednesday of our vacation in the Northwest we left rainy Seattle and drove 2 1/2 hours through rainy Washington to Oregon, where the rain finally started to let up.

We arrived at my brother Josh’s house.

They made a special wall of photos in our guest room just for us!

We had so much fun and great memories during our few days with my brother Josh and his wife Hannah and their kids. They were so kind and hospitable and helped us enjoy every day. Hannah even provided a whole bowl of pretzels for Wes.

It was great to have cousin time. My kids don’t see their kids often, and since they are close in ages it was nice for them to play together.

Wes playing Angry Birds on the tablet was quite the event.

On Thursday morning Hannah and I took the kids (all 7) for a neighborhood walk.

Logan and Ethan would often run ahead, and Wes would run ahead with them. But the difference between them is Logan and Ethan would eventually stop and Wes wouldn’t.

It was cute to watch Carissa with her twin cousins. They are close in age. I think she especially enjoyed playing with Charlotte.

We decided to spend the day at the rose garden in Portland and then the zoo. It was a little chilly and wet, but still perfect for being outside. Carissa is usually camera shy but I made a deal with her that she could take pictures of me smelling the roses if I could take pictures of her. The result? Way more pictures than usual of both of us.

Silly faces in the Shakespeare Shrine.

Wes got bored fast in the rose garden so John walked him down to the nearby playground. It was a fantastic Oregon playground in the middle of huge shady trees.

Then it was off to the zoo for lunch! John and I and the kids were so hungry in Oregon because our body clocks were an hour faster and we usually ate lunch and dinner later than we were used to. We learned after the first day that we had to eat a big breakfast to make through till lunch. We ate a lot at the zoo!

We had a fun day. Finished up with a round of Uno.

I never posted memories from Wesley’s birthday in September, so…

He went to school in the afternoon, and we had a friends-birthday party afterward. Wes picked an Angry Birds theme.

I always make Wes a birthday badge to wear to school.

His grandma and grandpa donated the beautiful balloons.

The kids colored.

We played a game in the backyard where they tossed a ball at a wall with piggies, like unto Angry Birds.

My friend offered to make this terrific Angry Bird cake. It was chocolate and Wes liked it.

Grandma and Grandpa dropped by afterward with presents!

We are glad to have Wes every day. He constantly reminds us what life is all about by forcing us to slow down, have fun, and love.