Friday, August 26, 2016

My Spotlight!

As Brother would say, "You're in the club!" He says that when ever he meets some one new with Fragile X Syndrome. I love it.

A little bit ago I was encouraged by my cousin, Amber, to take part in a spotlight series that was happening on another blog written by a mom who has a child with special needs. I was excited to reach out and hopefully help get the word out about Fragile X Syndrome.

This Little Miggy Stayed Home is doing a wonderful service of helping to spotlight many sides of parenting special needs.

She posted my spotlight this morning and I would love if you would read it... that's my official blog post for the the day.

You really should go read it so you can learn a little bit about our Fragile X journey.

Tuesday, August 9, 2016

The Napkin Note

 My dad had been sick for about a month before we left on our California vacation. I didn't worry too much about it because he was on meds and the doctor was watching him.

The Monday after we returned from our trip my mom called me that morning and informed me that she had taken dad to the Emergency Room earlier that morning and that he wasn't doing well.

This was a bit of a surprise because we all thought he was doing better and then he just seemed ... to crash.

Later that night I drove to the Provo hospital to visit my dad and bring snacks for my mom.

They had moved him up to the critical care unit because they were worried he was becoming septic and they wanted to observe him and make sure he was going to be OK.

They told us that his white blood count was really high, but as long as he seemed to be doing fine and not turning pale in face quite so much they would observe him for a few nights and hopefully avoid surgery.

(My dad will get after me for this picture... but he is also the one that instilled the importance of documenting my life...)

It was hard seeing my dad like that.

As far as I can remember I have NEVER seen him in the hospital unless it was to visit me or mom after one of our surgeries.

Until that moment, my dad was invincible to me.

He was Super Man.

I was pretty good at holding back the panicked tears I felt coming when I saw him lying in a hospital bed with no strength and no oomph.

But he still had a smile on his face.

I had a few minutes to talk with just him before my mom came back from a little errand and he kept talking about how much he loves my mom and how lucky he is to have met her and kept her in his life.

I felt, for a moment, that I was watching a Nicholas Sparks movie... it was that sweetly romantic.

As a kid I may have shuttered a bit hearing all the sappiness of my father about my mother, but as a wife and mother it was beautiful poetry and I could have listened to it all night.

I heard stories I hadn't heard before and I was amazed at the love he has for my mom, his wife.

He could write a book about how he fell in love with her.

I left late that night down-hearted about my dad being sick enough to be in the hospital overnight, yet inspired and uplifted by his love story.

I came back the next morning to be with my dad until my mom got there.

She had been up most of the night before she'd brought him to the ER and really needed her rest so I told her I would come be with Dad in the morning until she got there.

She informed me that she had written a note for him on a napkin that they had left on his dinner tray that he hadn't touched and I was to make sure he had gotten it.

When I got there, I'm not gonna lie,  my dad looked horrible. Pale, green, sunken eyes and sallow face... it was so hard to see. For a fleeting moment I prayed that God wasn't going to take my daddy away yet. It really scared me to see him like this.

He smiled a huge grin when he saw me walk in and he began telling me more stories of his life and experiences and I laughed with him.

I wish I would have recorded him talking, but I didn't think about any of this as I savored each word.

I told him about the napkin note my mom had left and you could see the sadness in his face that he had not seen it. While we talked he would pause every so often and searchingly say, "I wish I knew where that not was that your mother left."

My dad was doing well enough that they had decided to move him from the critical floor so we were gathering his things together so they could wheel his bed upstairs a few more floors. (I knew my mom wasn't going to be happy about this as she has an extreme fear of elevators... poor girl.)

As we were gathering things I noticed a napkin under his bed on the floor and picked it up.

It was my mom's napkin note!

I excitedly picked it up and showed it to my dad.

He was so delightfully happy that it almost looked like he would cry happy tears. He read it and got some pink into his face again.

I read it over his shoulder and had to take a picture so my mom could see that he got it:

My dad came home a couple days later only to go to the Emergency Room a week later. This was his 3rd ER visit in the last 4 weeks and this doctor finally decided to do surgery. The infection had not gotten better, worse even, and he decided that 3 months was a ridiculous amount of time to have had this infection going on.

My dad waited in the ER for emergency surgery.

I went to visit him and to bring snacks for my mom as he couldn't have anything because surgery would be starting that day—he wasn't really eating much anyway. That's one of the things that was so hard about seeing my dad so sick was losing so much weight so fast.

My dad seemed in good spirits for the most part and told me and mom stories of his childhood and bragged about his beautifully perfect wife. My mom blushed a lot during those moments.

It was interesting to see the love between my mom and dad, which I already thought was so strong, grow even stronger. It was palpable, the love they feel for each other.

Even through all the pain my dad was in, he was still very happy and talkative and all the nurses really got aa kick out of him.

I have to admit, that seeing my dad so sick and reminiscing so much about life and him saying over and over without regret how much he loves my mom, that I was starting to think I was in a Nicholas Sparks movie and that the hero in the story was going to die...

I was scared I was going to lose my dad.

For the first time in my life I realized how fragile my dad really is and that I have taken him for granted.

You never know when you could lose someone you love.

It scared me.

I think that's part of the reason it took me so long to blog about our California vacation because my mind was so consumed with hoping I wasn't going to lose my dad.

My daddy.

I didn't want to lose him.

I've always been grateful for my knowledge of an eternal family, but now it seemed even more important to me that ever.

I thought of my friends who have lost loved ones and don't have a testimony of eternal families and realized how blessed I am to know I would be with my dad again someday if this was, indeed, his time.

I thought back to the napkin note that my mom had left for my dad and how I would never forget that gesture and the importance of that small token to my dad.

I was grateful that my mom and dad love each other so much and felt so blessed to witness so many evidences of it.

The day he went in for surgery... 

My dad had a rough recovery after the surgery and even still, a month post-surgery, he is still a little more tired that usual, but it is good to see the color back in his face and have him be more present at our family gatherings.

I love my family.

I'm so thankful that I can have them for eternity.

I'm also grateful for napkin notes and I hope that this experience continues to inspire me and many others to take a moment to tell your loved ones how much they mean to you.

Wednesday, July 20, 2016

The Family That Packs Together...

I guess we just didn't get enough family time on our 10-day vacation so we decided to go on a family backpack trip the weekend after we returned.

Marc and I were both nervous as we didn't want to press our luck, but we also knew that it would be hard.  We decided to do the same hike that Marc took Sister on last summer for the "Father, Daughter" trip he'd organized with the brothers-in-law. Horse Flats trail up on the Alpine Loop.

We had prepped the kids all week long and made sure that we kept them on schedule by not missing any summer camp and going on Friday after they were done.

At about 4pm we headed out. The kids all seemed pretty excited. I don't think Baby really had any idea what was about to go on, but she was along for the ride anyway.

We got to the trail head, started getting everyone situated into their gear and Marc and I made one wrong move with Brother by telling him to "wait" while we were trying to get his pack on and he melted.

It took me a good 30 minutes to get him to calm down enough to even stand by the family and then with a bit of a continued struggle we had his pack on and we were ready for our big "starting out" photo op. Selfie Sticks can be a little complicated when you are wearing an ill-fitting backpack...

It was a good walk/hike into Horse Flat Meadows and we only had to endure Baby's freak-outs every time there was a bee... "bee" meaning anything that made a buzzing noise, ie., flies, gnats, bees, hornets... even some moths, apparently.

She was excited though, about finding the fort she and her cousins had made last summer

Baby was happy to find my lip balm

And Brother, as usual was just thrilled to have his microphone and Shania Twain in the wilderness—great entertainment.

After we were ready to settle down for the night Brother had decided that he was freaked out by the owl that was hooting across the meadow in the trees.

Baby had to sleep in my arms the entire night so I really didn't get a whole lot of restful sleep, but Sister was out cold.

Oh, and Ranger was with us too and, thank goodness, he saved Sister from her anxiety a number of times, not only that, but he helped her go to sleep too.

I have to say that he's not a good watchdog though, because somewhere throughout the night I think we had a critter (big or small, not sure) trying to get into our tent. It was tapping the tent against my head so it seemed to be curious. When we woke up in the morning we saw that our visitor had tried to get into our backpack too... I'll try not to think too hard about what came to visit our camp...

Anyway, I put together a video so you could enjoy a bit of our trip with us.

Trains, Loops and Scary Voices. The End.

Friday morning we were kinda lazy about getting going. I think we all just wanted to linger longer with our family.

The kids swam a bunch and then Baby got tired of water so Aunt Amber brought out all her fun clay stuff and Baby was in heaven.

Clay is a great sensory "toy" and although water is great for sensory input too, I think she was just ready for something more tactile. Besides, look how adorable that elephant is! I really need to find this same clay set, it was adorable. 

Amber takes care of kids in her home and has held on to all her kids' fun toys. She was even kind enough to send us home with one toy that Baby kept her interest in and that was the little "Alphie" robot. Loved him until I realized late at night in the van he could give me quite a scare... you'll get that story in a minute.

We finally got around to packing up and leaving at about 2:00 figuring we'd get to Vegas about 10:00 and just get a hotel last minute for the night.

We were off with smiling faces.

We had tentatively planned a short stop in Tehachapi to see the famous train loop that is there that Brother has watched a bazillion times on YouTube.

As I said before, Marc really wanted to make this trip about the kids and what they would enjoy and we all know how much trains mean to Brother.

We decided we didn't mind getting to Vegas a little later and that this stop would be worth it.

It took a little effort to find the route to the Tehachapi Loop, but on our way up we could hear a train going by and just knew that Brother's dream would come true and we'd be watching trains in real life on the famous Tehachapi Loop!

We got to the look-out spot and there were already a few officianados there waiting for the next train.

We waited a few minutes thinking the next train would come any moment. Our new train friend informed us that the trains enter the loop every 15 minutes and there would be another one coming along any moment...

Fifteen minutes turned to thirty and we were getting a tad discouraged as we were trying to still get to Vegas at a fairly decent time.

When we approached Brother to inform him that we should move on because of time we could see the longing in his eyes and just couldn't bring ourselves to make him leave. Marc and I agreed that we would give it 45 more minutes so we could say we gave it a good solid hour.

I mean when you see a kid looking on anxiously like this, you just have to hope his dream will come true...

After 45 minutes we started thinking that there must be something wrong and that the trucks that were along the loop's tracks were possibly doing repair work and the trains just weren't going to come.

I knew we had a few more minutes so I thought I'd just snap some pics from my phone to pass the time.

There's the Tehachapi Loop out there. This picture may give you an idea of how hot it was out there and show you the love we have for Brother...

After and hour we finally heard a train whistle and we all got excited and gathered to the viewing spot with great excitement and squinted our eyes as we tried to focus on the train that was over 5 miles away... and then it stopped...

We thought maybe it was waiting for another train before it came to the loop so we thought we'd wait a little longer. Besides, you could cut the anticipation with a knife at this point... or maybe it was just all that heat and humidity... at any rate, it was intense.

Brother had become quite the buddy with these two train buffs that had been there for the long hall with us and I had to sneak a picture.

Brother is so shy and really won't talk to strangers, but if you know about trains, you're his friend. I also think these two gentlemen were quite impressed with Brother's knowledge of trains—they all had a good train discussion.

Well, sadly, after one and half hours of waiting for the trains to come to the loop we had to give up hope and conceded that the trains weren't gonna be moving soon enough that we could stay to watch.

So our epic end to the trip wasn't so epic.

But, I was happy that Brother was still excited that he was even at the Tehachapi Loop.

(And in case you were wondering, yes, the girls were not really thrilled about this hour and a half wait, and were even more of a handful when they had realized we waited for nothing, but we've talked about them enough, that I think we can just leave it to your imagination.)

Drive through Tehachapi the fields would wisp as we sped by and the sunset was magnificent so I tried to capture a shot.

We stopped at, yet another, Taco Bell in Tehachapi... wait... wait... Wait! Have I even told you about Taco Bell? I can't remember. Well, anyway, Sister always wanted to eat at Taco Bell. If there was a Taco Bell that was where we would eat. We were just grateful that something was keeping her fed and happy.

So we were a few hours from Vegas, but now I had no cellular connection so I couldn't start looking for a hotel. We weren't too worried though, you can always find something in Vegas or nearby...

Hmmm... did we forget it was Memorial Day weekend?

Long story short, Vegas had NOTHING available... and when I say, "NOTHING" I mean no rooms under $500. I know, there's the places just before that like, Primm, but I said I was keeping this short.

Well, we had no choice, but to go to Mesquite at this point as it was 12am and we weren't about to call my aunt and uncle in Vegas for a place to stay that late, so we had to go to the nearest city.

On our way to Mesquite I called the Casablanca and there were no rooms available there, but the receptionist was sweet enough (I think she heard the desperation in my voice and the melting of the children) and she called around to all the hotels in the area for me! So kind. Such great service from the Casablanca in Mesquite and we didn't even stay there! She found an available room at a Best Western on the north end of Mesquite and there were only 2 rooms left so she gave me the number to call. I called and booked over the phone and we were finally in a hotel parking lot by 2:45am...

We were all toast.

Tired, ornery, tired, grumpy and in the car with each other too long we tripped and lumped up to the second floor to our room. All the while Sister was screaming and yelling for one reason or other and then Brother was crying because of her antics and then Marc and I realized how short our fuzes were and we even had the audacity to concern ourselves with the neighboring tenants and tried to get Sister to be quiet to no avail.

We had to concede that we would be "those" people coming into the hotel.

I'm sure it was because of all the commotion and such that I forgot a few things and Marc was already getting to bed so I just went down to the darkened parking lot by myself.

I have to admit I was a bit nervous. I didn't really know what the area looked like because it was all dark and I wasn't sure if there was someone lurking in the bushes so I just tried to act tough, confident and strong as I strolled to my van, all the while moving my eyes about so as to find anything that might be coming to get me.

Then I realized I had forgotten my keys...


I had to rewind all that, go back to the room to get my keys and then play it all over again.

I decided I would open my van door from a distance so as to deter any weirdos with the light beaming from the back of my van like a firefly.

Then I heard it...

a voice...

it was subtle...

but it was there.

I looked up to see if Sister had come out of the room to wonder where I had gone to, but nothing was on the stoop.

I trepidatiously walked to the rear of my van hoping the voice was just a creak or a owl or something.

As I approached the van I realized that the voice I heard was Alphie's ... the toy robot Amber had given the kids.

That darn thing nearly gave me a heart attack.

Finally at 3:45 I had settled in bed, car safely locked, Alphie secure, kids in bed and I zonked, but not before I thought to take a selfie to commemorate the moment...

The next morning we woke up late enough to miss the "free" breakfast but early enough to get checked out in time.

As I stepped out into the light I laughed when I saw that our hotel was nestled next to a Taco Bell... most people would think, "Oh, it was meant to be!" We shuffled Sister quickly into the van hoping she would not see the Taco Bell as we had all had enough of Taco Bell for a while... thank you Taco Bell, but no thank you...

Our way home wasn't bad, really, at all... just those few times we missed Sister's cues for potty breaks.

We stopped in Nephi to celebrate MrT's birthday with the family for a while and then continued on home.

We were all happy to be home again. I was especially happy to see that my roses had bloomed while I was gone.

As cheesy as it sounds, I have to say that my roses weren't the only thing that bloomed while we were on this trip. Our family bond had bloomed to a bright and beautiful hue and we have to say that, even with all the struggles and trials, we were truly grateful to have bloomed brighter and stronger than we though we could.

Big Trees and Big Expectations

We woke Friday morning a bit trepidatious about starting our vacation on our own without the help of Jessie and Joel and the kids, but it started off well with a happy breakfast with Amber, Lynne and Gary and the kids.

Then we were off on our Sequoias adventure.

The road there was so windy, I forgot how many bends that road had. It had been years since my last visit to the Sequoias and the windy road was definitely the part I forgot.

Don't worry, Sister didn't forget that she gets carsick. She was reminded, as were we, at every bend.

We decided to try to get her mind off of feeling a little carsick by stopping off the side of the road so she could see how big the trees were.

See that blue spec at the bottom? That's Sister... these trees are gigantic!!!

Don't let her "happy" face fool you, she was so angry with us and demanded that we take the pictures and head back to grandma's house.

So, I guess you could say it started off with an unhappy Sister so it wasn't too shocking when we arrived at the main parking lot and she had an immediate meltdown. She was not about to go anywhere without her cousins and she was going to make sure that everyone knew about that.

Now, I can't say that Marc and I didn't think this would happen or that we were even discouraged by it. If fact, I think we took it all in stride.


I think it was all the other people that weren't ready for her...

I am pretty sure she scared a couple of old ladies and kept some burly men at a fast pace to get without of earshot from her.

During this picture I am pretty sure that all 3 kids were melting and didn't want to walk anymore and wanted to go home and were trying to dart off in every direction that might get them out of the park.

We decided to push forward and, at least, go to see the great tree, General Sherman.

We took pictures to document our destination because we knew that it would only last a moment with all the whining, screaming and tantrumming that was going on.

After getting some shots we headed back up the trail to leave and Sister's meltdowns were getting louder, Brother was reacting to her screams and Baby was just... well, she was just.

Then Marc and I got to witness a sweet moment between Sister and Baby and we both documented it at the same time.

Luckily on the way back just before Sister's meltdown escalated to "uncontrollable" there were 2 ladies that came walking down with their tiny dogs in their arms and I saw that Sister had some interest in them and knew that with how much she was missing Ranger that this might be our saving grace.

"Is it OK with you if my kids pet your dogs? They really miss their little dog at home" I asked as Sister and Baby both approached with anticipation.

First, I was grateful that these two women were so gracious to share their dogs with us for a few minutes.

Second, I was so grateful for the calming power of animals.

It was like magic when sister got to cuddle those dogs and ask her owners all about them.

She was calm the rest of the way to the parking lot and even seemed to be at ease.

On the way down we all talked about the trees and the kids spoke as if it was the greatest tree trip they had ever been on and you would never have known they were melting most of the time.

It's interesting to notice the personality and life changes Marc and I have made as we have had to learn and grow and change for our children.

Like when Marc yells out, "[Brother!] Did you see that sign that said "turquoise?" and then flips a u-turn so that Brother can see it and we can take a picture of it for him to remember. Marc has learned that "turquoise" to Brother is important in all forms, I love my hubby even more for things like this.

When we got back to the house the kids were all so excited to get back into the pool with their cousins and beat the heat with some good old-fashioned water-play.

I didn't feel like swimming so I stayed inside to take photographs of moments and enjoy the air conditioning and company.

Lynne cutting strawberries to snack on

Marc and Amber... sorry this it's blurry... user error... but at least you can tell who they are (sheepish smile)

Teddy Bear is always a challenge to photograph but I enjoy the challenge

Then Zozo appeared in this get-up and I couldn't resist but to take pictures!

There are many memories at this California home, for Marc and his siblings, and now our children too. I'm glad they are happy ones. During this trip I realized it had been 4 years since I had been here.

It was good to see Marc's siblings and their families again and to listen to Marc recount some of his memories in this home.

This was going to be our last night in Visalia. We knew we and the kids were ready to get home, but it was tempting to accept Amber's offer to stay one more night.


It's so important.

Thursday, July 14, 2016

On Our Own

We woke up in the morning Thursday with a plan to have Marc’s dad come pick us up since we were worried our car would take a while.

“Why would we have him come pick us up all the way from Utah while we were in California?” you are thinking.

Well, that was one of the other little blessings is that Marc’s parents were visiting family in Marc’s hometown of Visalia and Visalia is only 2 hours away from Yosemite. Gary was happy to come help us out.

We were supposed to check out of our rental by 10am, but I had talked to the owner and she was happy to let us stay longer so we could arrange everything with our car.

I was very hopeful that the repair shop would be done with our car that day, but we didn’t want to put all of our card in the hopeful pile and thought we should be prepared just in case they weren’t able to get it done by noon like I had politely and sweetly requested.

Marc’s dad, Gary, got to the house at 11am and we all packed stuff into his car and Jessie and Joel’s car and at 11:30 we were ready to leave when I decided to call the repair shop just to see where they were and make sure that we weren’t taking off for Visalia if the car would be fixed before we got there.

“Hi, it’s your favorite customer from Utah again,” cheesy smile even though they can’t see me, “um, so, I’m just wondering how our van is coming along, you know, because you are so amazing and everything…,” I give a little giggle and wait with anticipation for the answer I hope to hear.

“Oh, yes, Rachael, we found what the problem was last night. It was the ‘blah blah blah blah” engine ‘blah’ connector ‘blah blah’ tube ‘blah’ and one of our employee’s wife works in Tulare and was able to get the ‘blah blah’ part we needed that happened to be there and she brought it back with her so our repairman got the part in this morning and he’s just doing all of his finishing-up right now. We should be ready for you to pick it up within and hour.”

(disclaimer: I heard what he was saying, but I don’t know the exact words after trying to remember back a month…)

I was so excited and surprised and grateful that there had been yet, another blessing. With the repair shop have been 12 or so weeks out on repairs and yet they were able to get to ours in one day was so kind of them and thoughtful to take care of us out-of-staters.

I hated to tell Gary he had come up for nothing, but he was just glad he was there in case we had needed him.

We decided that we should all, at least go out for lunch.

Right when we were done with lunch we got the call that our van was ready.

We were so thankful to the employees at the repair shop that they couldn’t but smile when they saw how thankful we were.

The other blessing was that the bill for both towing and getting the van repaired was only $440. It was definitely not money we had planned on spending, but we know it could have been a lot worse.

Our prayer that we had asked for honest people, a quick turn-around and for the kids to handle it all in stride was all completely answered.

I was surprised the entire time at how well, especially Sister, was handling this bump in our road trip and wasn’t melting or screaming at us about it. I mean, it wasn’t exactly smooth like butter but I would at least give it a chunky peanut butter rating.

The girls were already loading in Gary’s car and I didn’t want to rock the boat by moving them to another car after they had been all situated so I figured I should ride with Gary since I knew it would be tough for him to be alone with the girls.

I tried to stay awake during the drive, but I think with everything, I was just exhausted…oh!! And I forgot to tell you about our little medicine issue.

To make a really long and overly complicated story short, we were not able to fill a certain prescription for Sister and Brother there in California so we had to have my mom rush to pick them up and overnight them before we left Oakhurst. That was the other blessing was that even with all the drama it caused my mom, and the stress of not knowing if our kids would have the meds they desperately needed that the meds were delivered to our rental home’s door just in time for Brother to have only missed 1.5 days and Sister to miss none.

Trust me, you learn to count every tiny little blessing when you’re in our situation. You have to find the shimmer in the darkness to keep you smiling.

When we got to Marc’s parents’ house the kids were excited to see their cousins, Aunt Amber and Uncle Aaron, then they had to jump into the pool… it was hot… really, really hot there! I think I melted a little bit.

Jessie and Joel had decided they’d had a full road trip and decided to head home instead of stay a night in Visalia and then go the Sequoia National Park the next day.

I was sad, and frankly, a little panicked, to see them go because they had been such a blessing to our kids the entire trip and I’ve never gone on a vacation with my sister so it was a joy.

They let their kids swim a while before heading out to Las Vegas for their last leg of their homeward journey, so we got a few pictures of that.

It was so good to see Marc’s California family again and take time to get reconnected. It was really great to see Brother interact with his cousins and see that he has learned so much socially. At moments it was as if he was just “one of them.” I had to take a picture just because it was so sweet to see.

I love that Gary was creative when Baby declared, loudly, that she didn't want to do pictures.
so Gary obliged and get Baby on the swing in the background!

Gary is so proud of his family and wanted to get a picture of everyone who was there that night.

Brother hadn't seen the newest Star Wars yet so he sat down with TeddyBear and was completely enthralled with the whole movie and has made it known that his favorite movie character is Rae. Brother loves taking care of TeddyBear so watching a movie with him was great.

Marc and I were able to take TeddyBear's room and Baby slept in there with us in a Wall-E box TeddyBear likes to play in.
I had to take a picture because she was so cute with all the stuffed animals in her own little space.

Marc and I talked, after Baby had dozed off, about all the blessings that had happened the last few days and then proceeded to express our worries of doing the rest of this trip without the help of Jessie and Joel and their kids helping us with our kids.

We weren’t trying to be doomsdayers… we had just been through a huge meltdown with Sister when she realized that LittleB wasn’t coming back and they were now on their own vacation… trust me, we had reason to worry about how the Sequoia’s would go without help…