Saturday, February 6, 2016

Yep. It's one of THOSE things...

Oh you guys!

You've missed so much!

Let me catch you up...

No, let me catch me up!

I'm enjoying life too much!

No. Seriously. It feels weird.

When you have been in a weird depression fog for a long time and struggling to make everything positive, it almost feels weird to just enjoy life without effort.

Does that make sense.

I mean, I did have some moments of, "WHAT THE @!#$!%!!," but all in all it's been great. Let's just say that I am still recovering from a severe bruise given to me during a massive anxiety attack from on of the kids... boy, if you need a constant reminder that your life isn't normal, that'll do it for ya!

See, that's the thing though, if I wasn't out of my depression cloud that would have been so much worse and could have sent me into Yucky Town, but, instead, I would tell people about it and show them, proudly, that I survived it and will probably have to survive it again.

See this cute little drawing?

This is a pride and joy for both Marc and I and especially Baby!

She has been doing so much and realizing so much about the world around her. It's kind of like watching a typical 2-year-old starting to do all the things they do: pretending, wanting to do things themselves, playing with toys with a purpose, conversing (somewhat). We just had to wait until she was 6 1/2 to enjoy it.

Anyway, on Sundays at church I keep her entertained and sitting through sacrament meeting by drawing My Little Pony ponies for her. I have to try to make each picture last as long as possible so I always add grass, flowers, a tree with apples and sometimes even sky with clouds and a sun.

I almost cried when I saw this drawing she did one day.

Here, I'll help you "see" it.

She always has to have me draw a pony with a unicorn horn, and wings. And in order to make it a true My Little Pony, it always have to have a dramatically flowing mane and tail, and don't ever forget the cutie mark.

She included everything!

I have been finding these almost everyday as she sits to the table to draw a new one.

Her teacher at school told me that she has been drawing them there too.

I'm such a proud mommy!

This pony was the first one that I ever noticed her draw and it has been hanging on my fridge... I think I may have to frame it.

I do that sometimes.

Brother painted a great painting of a rainbow once and I have that framed and hanging in our home.

I can't take anything for granted, I need to enjoy every thing our children accomplish.

Thinking of Baby drawing takes me to her doctor appointment this past Wednesday.

Holy cow! That was a doozie!

Doctor appointments with any of my kids is ALWAYS a challenge.

ALWAYS.

A. L. W. A. Y. S.

So, of course this was no different and was impacted by the fact that she wasn't able to ride her bus to school because of the appointment time.

Once we got in the car and were on our way, she was actually quite happy. All the way to signing in for the appointment.

Then it happened... (read those dots as a "duh, duh duh")

They came to get her for the appointment.

It was all uphill from there.

I say uphill not because it was easy, because "downhill" would hint at no physical exertion, and that would be a lie.

It's moments like this that I am so thankful that my back is stronger and I can "handle" my special children in times of struggle. It took two of us just to hold her by the wall so we could check how tall she is. Now, I know, for some parents they would say, "Just skip the weight and height and we'll do it next time," but we are watching Baby's growth and weight-gain closely as she pretty much only eats Pediasure.

Which leads me to divert to another quick story of her actually eating lunch at school and not just her Pediasure! Her teacher even sent me pictures because it was such an epic moment:
I wasn't sure if I should cry because she was eating real food,
or because I was so proud to see that she could carry her lunch tray! Oh, it's the little things!



OK. so back to the doctor's visit... (again, duh, duh, duh)

By the time we got back to the room I was already a crumpled mess and she was now past that point as I answered some of the nurses questions. After about 10 minutes Baby settled down because she found something in my purse that made her smile.

It's ironic actually.

I doubt any female smiles when they see the item she had found in my purse.

Look:



You'd think it would be the suckers that kept her happy, but no, it was the thing tucked away in that green, square package.

Yep.

That's a feminine napkin.

Uh huh.

Yep.

She was so happy listening to it crinkle in it's bright green package and making it a great little addition to the home of the suckers!

Sorry, Jessie, but how could I not take a picture of this and not share it with the world.

It's hilarious!

(Jessie is my younger and wiser sister who has to keep me in check most of the time.)

Love you, Jessie...

Anyway, I was finally able to get her to put the feminine item back in my purse by having her pose for pictures on my phone:


There were several of these full-of-sass pictures and trust me, there was a lot of sass. She was still mad at me for having her there.

She took some time once she had settled a bit to draw one of her pony pictures.

I was so proud of her.

When her doctor came in he was so proud of her too! He said it's a big step forward in her development to draw like that! Yay!!!

"Forward" in development is always nice to hear as a parent of a child with special needs!

I'll save you all the details of the rest of the appointment, but let me just say that it ended with me feeling like I had run a marathon, Baby with big crocodile tears, any other parents in the office thankful for their own children, her doctor walking out the door saying, "You are amazing, I have so much respect for you, good luck," with a worried smile on his face and me needing to drown myself in an Arctic Circle shake and fries... Whoa!

I really can't express enough during the rough moments of Our Life that I am so grateful for my faith.

I have this really awesome opportunity to go to a special place of worship to feel at peace and serve others at the same time.

I love to go to the temple!

I can't take pictures of the inside of the temple for you to see, but I took lots of the outside.







There is so much peace for me inside the Holy Temple of The Lord.

This is the Provo Temple. It's been the only Temple in Provo until recently.

It's a really awesome story that I'll let you look into on your own, but the Provo City Center Temple was once a tabernacle and has now been built, literally from the ashes, and the open house is going on now to March.

Marc and I took Brother to the open house of the Provo City Center Temple on Thursday night.

It is so beautiful!

If you aren't close enough to see it yourself, in person, here is a link so you can see what it looks like inside.

Brother was so happy to be there. He couldn't stop smiling.

It was so neat to see him feel the peace and happiness that I also feel while in the temple. And to be with him in a place that allows me to have the promise of being with my children and hubby forever, is always humbling.

We wanted to take pictures to commemorate our little outing with our son, but he really didn't want his picture taken. So I just snuck one while he was splashing his hand in the fountain.






We were lucky enough to get Brother to come with us to eat dinner afterwards.

I can't even explain the joy we had as Brother actually conversed with us and told us little things about it his day at school and even some of his happy moments that have been happening throughout the week.

If you have a 16-year old son, I know it is hard to get them to talk to you sometimes, but when he does, listen. Really listen. Don't judge, scorn or ridicule but allow him to talk freely to you so that he feels comfortable sharing things with you. I know that my situation is a little different than those of typical teenagers so it is easy to say that when I am just excited to hear Brother speak words to me, but trust me. I know.

I raised my nephews for a short time.

They needed me to listen to them.

Brother's feelings may sound different than my typical nephew's, but they need to be heard and expressed all the same.

I wasn't going to share this, because I don't even know if I'll even make it into this play, but, I went to callbacks today for a play called Saturday's Warrior. As part of my callback I was auditioning to be the mother in the show and had to sing a song and show emotion about a struggling relationship with her oldest son.

I was amazed at all the emotions that ran through my head as I portrayed this mother's feelings.

I thought I would have to draw more on my experiences of raising my nephews, but instead I came to tears at one point because I was drawing on the struggles, the special struggles of my own son. His fight in this life is so different than I had hoped it would be.

The song talks about how "he's grown up some how" and I was able to realize for a moment, that even with Brother's Fragile X he has grown up and matured in a way that I am grateful for.

I love him.

He's such a blessing.

I am so glad that he and his sisters chose to come live with Marc and me.

So, even though I run marathons at every doctor's appointment, sport bruises the size of baseballs from child bites, keep my stomach muscles flexed to endure the flying kick the the gut and live in constant alert being prepared for the next breakdown...

I have a full and wonderful life and I am thankful that I get to watch my children grow up... no matter how long it takes them... I am just thankful for forever.

Wednesday, January 27, 2016

Who do I look like?

You know it's pretty cool that we live only a 45 minute drive away from one of the biggest film festivals in the world—The Sundance Film Festival in Park City. We live only 20 minutes from actual Sundance where Robert Redford began the whole thing but it's popularity required more space so it is in the nostalgic winter town of Park City.

I didn't realize it, and don't ask me why I didn't remember, but Marc has never been to Park City during the film festival.

Everybody loves going there to go spot movie stars, try to get pictures and just enjoy the atmosphere.

Oh, and they go see independent films too.

Marc and I decided last minute to go and enjoy the crowds and the ambiance of Park City during Festival time. It was our date night outing and we weren't quite prepared for how packed and busy it was going to be.

We spent the first hour of our time just driving at 5 miles an hour through the main street and we were about to give up until we realized they had free shuttle service from further parking lots. So back to the outskirts of Park City and we were in for an entertaining shuttle ride. 


At each stop we just kept packing more and more people in until we all got to know each other quite well (smirk). There was a group of friends on there that kept us all laughing while making comments about "the more the merrier," "pack 'em in," "can I get your phone number?" It was fun and made the ride seem much shorter.

After getting off the shuttle Marc and I kept our eyes wide open as we searched the passersby for movie star sightings. Marc and I got a good chuckle as we were nearing a small crowd this young man kept darting his head out and looking at me. I couldn't figure out if he was trying to be non-chalant or just really excited to see me... at any rate, as I came closer to him he stepped out as if to greet me and then he shied away back to his group and carefully smiled at me as I smiled back at him making eye contact. I just want to know what movie star he thought I was! I should have said, "Who do I look like?" Marc got quite the kick out of this too as he noticed before I did that this guy was anxious to see me as I passed.

That was one of the highlights of my night!

We saw so many people who looked like movie stars, but we didn't know who they were or even if they actually were. It's funny to walk up and down the streets as people are all trying to casually look at each other to discover the disguised movie star under the winter hats and coats and beards and boots.

After not spotting anyone and getting quite hungry from our star search journeying, we decided to stop and eat. We chose something "affordable" and did pizza and pasta.

...

Let me remind you.

We are in Park City.

Nothing is cheap here.

But, we hoped it would at least be reasonable, but, no such luck. It was one of the most expensive cheap dinners we've ever had out on a date... and maybe not because of the price, but the price we paid for the amount of food... which wasn't much... really. I thought a calzone might be, at least, bigger than a subway sandwich... 

Anyway. We still had fun and were even lucky enough to only have a 20 minute wait when soon after us there was a life spanning halfway down the building.

Our seats weren't the best.

Here, check it out:
 
No, that's not a bad picture, it's bad lighting. We were seated just a few feet away from their bright, red, neon sign...

We were slightly disappointed with our dining experience so we were so excited to see that Rocky Mountain Chocolate Factory wasn't far off and we were happy to share a caramel apple.

Here we are waiting in line to get our treat.

After we snarfed our apple we continued down the street taking selfies, people watching and star searching.


We stopped in few art stores, which I always enjoy, but I was really excited to discover a new artist I have never heard of and I loved his work, it was so creative. And I can't remember his name now so I am going to have to get it on here later... argh, I hate when I don't remember things...



Then we walked the bridge and Marc got some nice shots of the lights and the street.

 

Of course we had to get us on the bridge too.

At the beginnings of our journey home we talked on and on about how much fun we had even though we didn't see and movie stars, except for one we recognized but couldn't remember what we had seen him in and I later found out it was Casey Affleck, he looked way different than in Oceans 11-13. He had a beard, shaggy hair and amazing eyes!

But as we got closer to home, the roads got worse! They were snowy, icy and slushy which made for some scary moments of sliding and turning.

We were so relieved we made it out of the canyon safely that we went and got a shake to celebrate our survival... kind of funny that we chose ice cream to cheer us up after almost getting stuck in snow...

Almost 20 years guys! We have almost been married 20 years!

I'm telling you, dating your spouse is the bomb-diggedy!

Saturday, January 23, 2016

Taco Time and Truth Time

I was checking something on my new flash so I used Brother as my subject.


He was happy to cooperate at first and then I started invading his space...



This is all very typical for Brother—the green apples, the salt and vinegar chips, the blanket, the microphone, the headphones, the iPod, the couch—all of it is pretty much him every day. he would live here all day if we would let him.

I call it his cave.

It's where he hides when company comes, but it's also the place he stays most of his days.

I've been working hard to get him services so that I could arrange a caregiver or "buddy" that would be paid to work with him so that he can get out and do things like attending his high school games or going out to eat, all without our being there. He really just doesn't do things very well with us and does better with "buddies." I finally have been able to work that out for him and his buddy is Jake and he has taken him to 2 high school basketball games so far and Brother has LOVED it! I love hearing about him saying "hi" to his peers and them saying "hi" to him. Him being social is something I don't really get to witness because he is so reserved around me, so hearing that this is a part of his personality is so rewarding!

Baby has been talking so much more and she utilizes this skill to tell me what to do quite often... I never thought my little silent one would be such a sassy pants! As much as I have to remind her that she is not being nice, I LOVE that she is talking so much and her voice is so adorable regardless of whether they are sassy or sweet words.

Take this picture for instance.

She made me take it just because she wanted to look at it after...


Our dog, Ranger, really has been a very good thing for our kids and I am amazed at the peace he has brought to our home with his demeanor and presence. He has been such a blessing. I can't begin to tell you how many melt-downs he has discouraged, how many tears he has licked off cheeks, or how many endless snuggles he allows while giving me puppy dog eyes wondering when he gets to be done being squeezed.


Taco time...

Every Monday night we have a family night where we spend time together and have prayer, singing and a spiritual lesson and if the kids are really doing well we have an activity.

The activity part doesn't happen very often because they just don't last long enough or they just aren't comfortable leaving the house.

This last Monday, Sister looked at our preparation chalkboard an saw the family night was on there and said, "Mommy, let's go to Taco Time tonight!"

I was so excited to hear her say she actually wanted to go somewhere as a family!

I jumped on that bandwagon as quickly as possible and we began to "prepare" our 3 kids for a family excursion to Taco Time.

It went so well that we were actually able to take pictures!








These are the simple moments that can bring so much joy. They were all smiles until they had hit their limit of restaurant time and we immediately took the hint and started for the van.


Truth time...

It hits me really hard sometimes that this is Our Life.

Not the good parts like going out to eat as a family or enjoying rare conversation, but the reality of what life is like having ONLY special needs children.

For whatever reason, I'm guessing Brother's age, I have been approached by people, friends or acquaintances, and they remind me of how tough it must be to know I will never experience their first date, their first Prom, their graduation, going to college, marriage, grandchildren, daughter or sons-in-law... then they pause... at least not in the way most parents experience it all.

Yep.

I know.

Those are actually some of the things that hit me when we got Brother's diagnosis. All the things we wouldn't experience because neither would he.

It's tough to be positive all the time and say, "well, he might have a special friend who will take them to a dance" or "our nieces and nephews will have children and the can be like grandchildren to us."

Sometimes, it just seems like I'm humoring myself so that I don't have to mourn my reality.

Sometimes, it just seems like I am working hard to look at the positive.

I try to stay on the positive side of the street most of the time, but sometimes the mourning screams at me from across the street and I can't help, but look up to see what I'm missing.

It just hit me...

you hear so often "life is a two-way street" or "marriage is a two-way street." Well, I guess Our Life is also a 2 way street. I have 2 ways to go—making the best of our situation or mourning what I can't/don't have, but even if I am trying hard to stay on the "making the best of it" side I am still passing by that loud, annoying, and down-playing side and I can't help, but notice the passing traffic.

But I just have to keep going through on the positive side because I don't think I want to know where the other side of the highway of life takes me, but it's a good reminder to have it there so I know I am making a conscious effort to stay on the route I'm going.

Does that all make sense?

Anyway, that's the truth, I'm passed everyday by what my children could have been, what my life could have been, what Our Life could have been and it's a tough reminder and it's hard not to long for the sights on the other side of the road. I may slow down a little, maybe even contemplate flipping a U-turn but that wouldn't benefit me or my family.

Life is a highway...

yes, I thought of the song... did you?

Friday, January 22, 2016

A "Fluting" Moment

"I HATE MUSIC CONCERTS!! I HATE MUSIC! IT'S STUPID, BABY MUSIC! I HATE MUSIC! YOU'RE A STUPID MOM!"

All of this was yelled with every capitalization and exclamation point shown here. No exaggeration.

Really.

That's what Sister yelled at me yesterday right off the bus from school.

"Aaaaaaaaaaaarrrrrghhh!!!!!!!!!" along with hair pulling and stomping was Brother's response to my, "OK, it's time to go," with a smile on my face.

I just keep breathing deeply and saying to myself, "It will all be worth it in the end. They will like it, I know they will. We just have to get there."

I don't know how to explain it, but I can usually tell when my kids are just afraid to do something new as opposed to actually doing it.

If you've read my posts before you know that our children deal with hyper-arousal (or anxiety to help you understand a little) and this controls almost their entire lives... anyway, it makes it hard, as parents, to want to do anything as a family.

I've been trying harder to "live the Fragile X Way" as author Cindi Rogers puts it in her book, "Becoming Mrs. Rogers." (which was such a great read for me and I highly recommend it) Because of Cindi's words I have been trying to give our kids more preparation time for everything.

Everything.

This means I have to give time for them to process every request, every need, every inquiry, every activity, every change, every transition... everything.

I'm in constant high alert mode trying to anticipate each action, reaction, instigator and consequence that may arise in 3 separate child's day, every minute of the day.

It's wearing.

"You're a meanie-miny-mo!!!!" I hear as I am quickly snapped out of my stupor. I actually kind of chuckle whenever Sister yells this at me because it's just funny how she has mixed the two things together to mean it as an insult, but it still keeps it light enough for me that I don't get too hurt by it.

It's 2 against 3 and the odds are definitely not in our favor, it seems.

We tried to get a third person to help us with the kids, but to no avail.

We were going as a family of 5.

Seems like it should be normal, right?

Sister screamed at us for the first 10 minutes of the drive and then was quickly distracted... no, annoyed, by her wiggling tooth. The wiggling tooth annoyance kept her from verbally attacking us which was a little bit of a breather, but we still had to endure the screaming and ranting over the tooth that wasn't coming out.

While heading to the Capitol Theatre in Salt Lake for the Access To Music Concert put on by the Utah Symphony and Utah Opera, the kids paused from the panic for moment to notice the lights of all the cars. So I took a picture of the serene moment.


It was about 10 minutes after this point that Sister was able to pull her tooth... *sigh* one less thing to bring on all her oversensitive sensitivities.


So, what is this "Access to Music" thing I am talking about?

It is put together for special needs children and their families.

We've tried to go for the last 3 years and it has never happened because of pretty much all I have just described.

We are now finally to the point that we realize EVERYTHING is hard when it comes to our kids and that there is not much we can do to change that. All we can do is be willing to go through the pain to get to the ultimate goal, and that is providing as much opportunity for our children to experience life in all it's facets... that even includes "baby music."

As we came into downtown Salt Lake City, Sister was becoming intrigued and even excited.

My nerves were beginning to unfrazzle as I hoped for the best.

Then we approached the parking garage and Baby began to come unglued.

She was trying frantically to get out of her seat and sheer terror was all over her face as she clambered to get out of the car! She was afraid because we were going into an enclosed space and there were cars behind us as we ascended down in the parking garage. She was so terrified, it made me want to cry.

She didn't calm down even when we got out of the car and she was safe in Daddy's arms, and then she was set off again as we got into the elevator.

Poor thing.

Not only is life terrifying for her, but so are the things that get her there.

At this point Sister was feeding off of Baby's fear and she was now screaming in her growly voice how stupid I am and she hates me and she doesn't want to go to the stupid music.

Then we saw the lights of the capitol theater and all 3 of them began to get excited!

Marc took this great shot


"It's so pretty! Wow!" Sister and Brother exclaimed with complete excitement, "It looks like an Opera House!" I thought Brother was going to collapse with utter joy as he dreamed of what it was like inside.

As soon as it was time to cross, well, actually before even, they were ready to run as fast as they could to the Opera House.

They were giggling and happy as they ran.





My heart leapt a little.

Success.

This was success.

We got inside to give the people our name for the seats and the 3 kids sauntered inside of the theater and their came gasps of joy and excitement as they saw the set where it would all be taking place. They could hardly wait to be seated.

I breathed relief.

All 5 us sat in reverence as we listened to the announcements and thank you's of the night and then the symphony began.... sigh... relax... enjoy...



Then came the opera singers and Baby was like a bat out of a hot spot.

So my enjoyment was but for a fluting moment... get it? Fluting? Fleeting? Symphony... anyway, I thought it was funny.

Anyway, I went outside with Baby to the foyer so she could escape the "noise." I was so worried that because of this that Sister an Brother would be right behind me in a panic, but they stayed in with Marc the entire time. Yay!!


I was so happy that they had a TV in the lobby showing the concert so Baby and I could still enjoy it.

It was made even more pleasant when a worker brought us two chairs to sit on so we could relax a bit.

Baby was loving it. She loved watching it on TV. She just wasn't able to handle the live performance.





After about 20 minutes Baby began to get restless and was ready to explore the stairs. So that's what we did the rest of the time.





At the end of the concert Marc, Brother and Sister came out and the kids were all smiles! They were so happy about the concert and I think they were proud of themselves too. Sister couldn't stop jumping up and down with excitement of how fun it was to listen to the music and be in a real concert hall.

Then the crowd built up as they were lining up for cookies after the performance and Sister was immediately back to her panicked self. She began yelling at me and everyone else who was within earshot.

She was that kid.

The one everyone feels sorry for the parents because they are not happy.

I hate those moments because I want them to know that she is actually a sweet happy girl who is just so overwhelmed by the crowd. Then I remember I am among people who "get it" and are empathetic to our plight.

I quickly pushed through the understanding crowd, grabbed her a cookie and we got out the doors as fast as possible.

Sister was still overstimulated at this point and even proceeded to tell a little boy to "shut up" when he complimented her Angry Birds jacket... sigh... I hate those moments too.

But, I was happy to get a photo of Brother and Baby in front of the theater. They were so happy.




So, as so many experiences as a family, it is not easy, but it is worth it to give our children experience and culture so they can be proud of themselves for overcoming fears and be ready for the next adventure.

I took video of part of the experience: