We're Still Here

   (Drafted February 10th, 2024)  I've said this before, but time really does have a way of getting away from me. I always thought that when the kids got older, that I'd somehow have more time. I now laugh at my naiveté. 

    Zuri is fifteen, a black-belt in karate, on the demo team, and in leadership (CIT). She has her learner's permit, and a boy she talks with non-stop.

    River is ten, sassy as ever, my little homebody, and quite the story-teller. Along with creating stories, she loves to read, and can outpace me in reading and comprehension. She's skilled at math, and nearly as outgoing as her sister. Her love of water and swimming is nearly eclipsed by her loathing of hiking. She claims that her "body is not made for hiking." She has left dance behind and taken up karate with her sister, and is currently a blue belt.

    Kai is twelve, and getting big enough that lifting him has become a bit of a struggle. He's full-on hit puberty and sports a little mustache. Developmentally, he has pret
ty much remained the same. He has advanced on some interpersonal communication and is mischievous as ever, but he still lacks neck and trunk control. 

    We have some new devices for Kai to help with his increased weight and size. First off, he will not grow much more, as his growth plates have pretty much closed and in 2023 he had the MAGEC rods taken out and the permanent rods put in. His spine was fused in the same procedure. He also had his salivary glands removed, but that didn't seem to stick, because less than a year later, his drool is nearly what it was pre-surgery. He has a new wheelchair, but it needs some serious adjustments, so we are not as excited about it as we originally thought. Getting an appointment to get it adjusted has been a lesson in patience, though. 

    We've been doing some serious remolding to his room to accommodate a ceiling lift, which goes from his bed into the adjoining bathroom and over the bathtub. We gutted the bathroom, replacing everything except the toilet and the door. There are still some things that we need to finish, but I love the updates. One of these days it will be completely finished.

    Our favorite contraption has been the hiking carrier. Joshua and I were hiking the wind caves near Logan and came across a man and his daughter. He was hauling her in a device that allowed him to go through the rocky, single lane trail, and we were completely in awe. We stopped him, full of questions and learned that he just quit his job to make them full-time. We jumped on it and have become beta testers for Huckleberry Hiking. It has literally changed our lives. We can take Kai on trails and places we never thought we'd be able to go. Spring cannot come fast enough so that we can continue our adventures (Kai doesn't do well in the cold).

    As always, 2023 brought many adventures for our family. We won the lottery and got backcountry passes to hike the Wave (on our first try!). I know people who have tried for over a decade and still not gotten it. We also hiked Angels Landing with the girls--in the snow. That was an adventure. We went to Glacier National Park, spent more time in St. George. I'm planning on detailing those adventures more, so I won't go into too much detail now. 

Calm Amidst the Storm

Covid drive-through testing tent at Riverton Hospital

The only thing constant about life is change.

Three weeks ago on March 1st--before all the insanity of Covid-19 hit the United States, before the shut-downs and social distancing, before the hoarding of toilet paper, water, and hand sanitizer--we took Kai into the ER at Primary Childrens. He had two different infections running through his body. One in his ear and another on the hardware of his MAGEC rods. They kept him at the hospital for a week. 

While everyone was starting to hoard supplies, we were working out schedules to take care of our children and spending most of our time in and out of the hospital. We didn't have time to panic or worry about some virus across the world that we thought would end up being more hype than anything. 

feeling better at the hospital

Friday, March 6th, Kai came home from the hospital. By the following Friday, all schools had cancelled school for a minimum of two weeks. All extracurricular activities cancelled, all church services suspended, and social distancing became a thing. 

Wednesday morning, the 18th, Utah experienced its biggest earthquake since 1992--magnitude 5.7--and the epicenter was about ten miles from our home. Thankfully, the damage was minimal: two small map tubes rolled from my bookshelf, and a package of diapers and a notebook fell off Kai's shelf. We have continued to feel aftershocks throughout the week, including one this very evening.

Yet, through all this upheaval, we remain optimistic. The pandemic is very real and we are doing our part to flatten the curve, but it is also giving us time that we wouldn't otherwise have in our busy lives. We laugh, play, take walks, watch movies, and do online schooling together. My girls are in year-round school and as of Friday, they are officially off-track until April 20th, so thus far they are only missing one week of school instruction.

chatting with friends

The girls have handled all the changes with the adaptability and spunk of youth. They love not having school, and hate not being able to play with friends. They are more worried about another earthquake than the virus. With the awesomeness of modern technology, Zuri spends much of her time video chatting with her friends. She is able to continue her karate through live video streaming through zoom, and for volleyball they have videos prerecorded to help the kids with technique. The girls' dance hasn't done anything yet, but they will put the girls' individual dance choreography online for them to practice in the next week or so. 

Kai even has homework along with school check-ups via email. We need to continue going to the hospital for weekly labs to make sure the infection in his rods is kept at bay. It's all a whole new temporary normal that we're navigating, and it hasn't always gone smoothly, but we're figuring it out as we go. 

With all that's happening right now it's really easy to get caught up in the anxiety of it all, and we are not immune. Most of the time covid-19 is just something in the back of my mind. But in the cracks between moments, fear of what's inevitably coming sets in. I've done the research. I've seen the graphs. I've watched the recordings coming from the overcrowded intensive care units in Italy. I've read the reports of doctors and nurses having to choose who has the most chance of recovering and treating those people, dooming the others because there are too many people and not enough resources.

working on school work

That could be us. It could be a choice between my grandparents or my son. We need to do our part to slow the curve so that our healthcare system is not over capacity. No, it doesn't stop the infection or the number of people who contract it, but it slows the rate so that everyone who needs care can get it. Thousands of lives can be saved if we slow the curve. But it will only work if the majority of people comply, and I know people--good, decent people--who won't, because their family is not "at risk," and they don't see anything wrong with socializing if everyone's "healthy." They don't understand--you can be a carrier for up to two weeks and not have any symptoms. It both infuriates me and breaks my heart. 

Then there is the other part of this that not many people are talking about. The virus is mutating. To my knowledge are at least two different strains, and younger people are starting to get sicker. An otherwise healthy woman in New Orleans died of covid-19, and she wasn't much older than me.

This is real. This is coming. And there is nothing I can do except hunker down and do my part in protecting not only my family, but my friends and neighbors, and all others around me. 

And that is some of the good that I have seen come out of this. I've noticed people have been friendlier--they'll smile and wave as we pass each other (at a respectable distance of course) on my daily walks. We appreciate everyone who has reached out to check on us; friends and family who live both near and far. We are very blessed to live in a community that truly cares, and be surrounded by so many wonderful people. We're all in this together, and I think we feel it. 

There's a sense of peace, and it calms the storm of fear that wants to rage.

I don't know what the coming weeks will look like. In many ways it feels like when Kai was first born--all we could do was manage one day at a time, until we realized a month had passed, then two, then a year. We are all going to need to support one another in the coming months, especially in the aftermath of the virus, as we pick up the pieces of our lives, our economy, and our dreams and start to put it all together again. May we all be a little kinder and lift one another through this.

As for me, I'm going to hold my little ones close and weather the days ahead. 

One at a time.

...And then she was 10, and he was 7...

Life moves too quickly; you blink and the years fly by.

Somehow, I thought as the kids grew older I would have more time, not less.  Yet, here we are, another day, another month into the year.  May is always incredibly busy for us and this year is no exception. Zuri turned ten--TEN--this year, and Kai celebrated turning seven with a smile.

It never ceases to amaze me how long the days seem while I am in the middle of it, but I turn around and years have elapsed. I know it's a common saying and I never really understood it until I look at these kiddos growing up.

They have my heart and I wouldn't trade those long days for anything.

More to Come!

I know it has been a while; life certainly has a way of racing ahead these days.  I wish I could say that "I am back!" but it may still be a few weeks before things calm down enough for me to start posting again.  Never fear, though, I will be back!

Moving On

Life's been a little crazy around here these last few months.  I have a lot to post and not much time, but I will get to it.  I've been doing a little reflecting today as I have been packing and cleaning our house.  You see, we are selling our house.  It's a bittersweet thing for me.  I am excited for the new adventure, but we have loved our first home (even with its quirks and all the shortcuts the previous owners used), and it is hard to let go.  However, Kai is growing to the point where we need a place that is more disability friendly...where we don't have to carry him up and down the stairs, and where his wheelchair has a place (currently sitting in our garage).  He is nearly 50 pounds, which is the limit the nurses can lift on their own for liability reasons.  What that means is that I am hauling him up and down the stairs for school (and when we go out).  I nearly threw out my back again a couple weeks ago...it was bad enough that I had a hard time when I wasn't in constant motion.  Luckily, it wasn't bad enough to keep me down.

So, for the last few months we have been working on getting this house sell-ready.  We put in a closet in the downstairs bedroom, we fixed a tile that had popped up in the entryway, painted, sanded, mudded, caulked, tried to fix a pipe but ended up having to have a plumber come in, packed, dejunked, and more.  It's been crazy.  From the time I get up until I drop, I've been working on the house (and taking care of kids and the normal stuff).  I'm at the point where I am so ready to be done...and there still seems to be so much more to do.

 We have thought this way and that on how to keep our current home and make the modifications necessary for Kai, but in the end it boils down to the fact that we just need a home with a different layout.  Our hallways and doorways are too narrow, so even if we were to move him into Zuri's room upstairs, we would still have the hallway issue, and then he would be secluded away from the family, which is the main reason we have him in the family room downstairs.  If we were to put him in the living room upstairs, he would take up the entire room (we tried that when we first bought the house) and then we wouldn't have anywhere to be upstairs.  Not only that, but the nurses would have to be uber quiet during the night so they don't wake us up.  Our stairway is too narrow to accommodate a lift, and even though we have a walk-out basement, the grade between the front and the back is too steep to safely navigate his wheelchair.

So, the time has come to sell our home.  We love having the park right behind us...that is going to be the hardest part about leaving.  We also love our neighborhood and our neighbors.  Our location is ideal, being close to a major highway and shopping centers, yet tucked away so it doesn't feel like we are.  We see wildlife (I saw a skunk just the other morning as I was letting the dog out--luckily she listened when I called for her to come back to me, otherwise we might have had another stinky dog).  We watch amazing sunsets while eating dinner.

We have settled into this home and have loved it.  After moving so much in the beginning of our marriage, it has been nice to have been in one place for a while.  However, I am excited for the new adventure our next place will bring.  Once we sell our home, we will stay with my grandparents until we find (or build) a suitable home.

For now, posts may be sparse, but they will come.  Until then, I say goodnight.

Magic Kingdom Part 1

We started out our Disney Adventure in the Magic Kingdom.  The shuttle from our hotel went to/from Epcot, so from Epcot we caught the monorail to the transportation center, and then another monorail to the Magic Kingdom.  As we were boarding the monorail from Epcot to Magic Kingdom, Zuri was a little confused; she thought we were done.  She got really quiet, and when I asked her about what was wrong, she said in a small, disappointed tone, "it didn't have all the rides I expected."  Emily and I had a good laugh about that.  We reassured her that we haven't even started.  Poor girl.  She had been anticipating going to Disneyland for years, and then thought we were leaving already.

As with any vacation, we had a few crazy things happen.  Emily was "randomly selected" to be searched every time we went through security that first day (three out of three times).

We had the park hopper pass, meaning we had five days where we could go to any of the four main parks--even switching parks midday if we like.  However, for whatever reason, there was a glitch in my pass, so that on the last day, it wouldn't let me in.  Zuri and Emily got in just fine, but my pass wouldn't work.  I had to go to guest services to get it straightened out, and even then, it took 20 minutes.  For whatever reason, my pass was glitching each day, and double punching me in three out of the five days, which shouldn't have mattered anyway, because we had the park hopper pass.  The guy who was helping me even had his supervisor look at it because it was so strange.

The shuttle situation was a little messed up as well.  Because it was the "off season" the shuttle to and from our hotel didn't run as often.  The evening shuttles didn't accommodate for watching shows at the end of park days...for example, Epcot closed at nine, ending with a fireworks show, which lasted about 15-20 minutes.  The shuttle left Epcot exactly at nine, then the next one wasn't until 10:45, which meant that we sat waiting for the shuttle (several times, actually) for over an hour, since Magic Kingdom closed early that week for the Not-So-Scary Halloween Party (Magic Kingdom usually closes at midnight, and is the only one open so late).

Zuri was really adventurous with all the rides.  We started off with teacups (the only ride I didn't go on because the spinning makes me sick, and I didn't want to start off sick), and then went to Tomorrowland.  I did ride the Rocket, and did well as long as I focused on the inside.  After Tomorrowland, we went to Space Mountain.  It was the first roller coaster ride we had done, and we sit single file.  The bar wasn't tight across Zuri's lap and she felt like she was going to fall out, so she didn't like that ride and refused to go back on it--until we returned to Magic Kingdom later that week.  We finally coaxed her into going back on it (she had been on Tower of Terror and Test Track by that point and loved them), telling her we would make sure that the bar was nice and tight, and I would reach forward to hold onto her.  So she reluctantly agreed to try it again, and loved it!  The lines were short (less than 15 minutes), so we went on it another two or three times.  Her favorite ride was Splash Mountain.  Her top favorite rides were Splash Mountain, Expedition Everest, Space Mountain, Tower of Terror, Mission Space, Test Track, Pirates of the Caribbean, and any of the boat rides (except It's a Small World).

The only rides/shows she didn't like were It's a Small World and Country Bears Jamboree.  It's a Small World is just iconic Disney, and I felt she would be missing out if she didn't go on it.  Emily had to be coaxed to come along, and was making faces.  After all the fast rides we had done, It's a Small World was slow and I think a let down for her (plus I think she caught on to Emily's attitude about it).  As for the other, it was a hot day and all our feet were hurting, so I saw the Country Bears Jamboree and thought it would be a nice break.  I didn't know what it was, and when the show started, Zuri leaned over to me and said, "I'm too old for this, Mom."  Ha ha, oops.  She ended up falling asleep during the show. 

Zuri really isn't into scary, so getting her to go to the Haunted Mansion took a little bit of coaxing as well.  Afterward she wanted to go again, and in total we went four times, but each time she was a little apprehensive.  She was proud of herself for facing her fears and going on all the scary rides.  She helped herself face her fears by saying that since it's almost Halloween, so she needs to get into the Halloween spirit. 

Zuri really didn't care about meeting the characters.  The first characters she met were Chip N Dale, and she didn't really know how to react.  She just wanted to get their autographs and be done, but they kept playing with her hair and messing with her.  The sun was just at the wrong angle, so she wouldn't look up at the camera for a smile.  Stinker.  She even opted to skip out of meeting several characters, like Anna and Elsa, Mickey and Minnie, Merida, and others that are escaping me at the moment.  She did meet, Ariel, Pocahontas, Joy, Sadness, the guy from Big Hero 5, Rafiki and more.  Her preference was to ride the rides over meeting the characters, and given the choice, she would choose rides every single time.  She absolutely loved meeting Ariel, and was so excited to ask Ariel how to become a mermaid.  Ariel told her she had to find King Tritan and ask him to give her fins.  It was all Zuri would talk about.  She wanted to go right to the ocean to find him and ask him.

Zuri also loved meeting with Pocahontas and Meeko.  Afterwards she kept mentioning that she and Pocahontas both love nature.  Zuri was wearing a rainbow hair clip, and Pocahontas said that Zuri has the colors of the wind in her hair.  Zuri loved that. 

Zuri loved that everyone called her Princess at the parks.  It was a big deal to her, and she kept track (it was over 30 times). 

We really didn't have to wait super long in lines.  The longest we waited in line was an hour, and that was only a handful of times.  Once because a ride had broken.  Our average wait time was about twenty-five minutes.  I had downloaded the Disneyworld App and we took advantage of the Fast Pass, so between the two, we were able to catch rides at lower wait times.  It was fabulous. 

We played a lot of Spot-It, heads-or-tails, and Who-Am-I? games.  I am really impressed with how well Zuri handled everything during our trip.  There were only a few times she whined (when it got really hot, and we were all feeling it), and only once when she really threw attitude.

Teacups:

Astro Orbiter:

Tomorrowland Speedway:

The one and only time I have been to Disneyland, I was eight, and there is a picture of my dad and I in the car--him freaking out because I was driving--so I wanted to recreate the experience with Zuri.  It was pretty fun!

Rapunzel's Tower:

Rapunzel's tower

Haunted Mansion:

The Haunted Mansion

I love that many of the rides have things to help entertain the kids along the way.  If you press on the instruments, they make sounds

Meeting Chip N Dale:

Her expression in this photo is classic

Splash Mountain:

I tried getting a video of her reaction going down the big drop, but since I'm behind her, it didn't work as I thought it would.  I tried to get her to turn around after, but she was too busy laughing.  She loved it!

After Pirates:

Cinderella's Fountain:

The Sword in the Stone:

Trying to get the sword out of the stone