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!

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?

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:

Brother's Send

I finally made time to put the video together of Brother going on his first rock climb!

You can read about it in my previous post from last year, but you'll love watching it here.

A special thank you goes out to 12 Finger Outdoor Adventure

Teenagers...

So, I have to laugh after I wrote my post about being chased by tigers because that next day I was in a den of tigers...

Ya, I went to Brother's high school and did a presentation about Fragile X in his choir class. His high school mascot is the tiger, so I was presenting to a den of Tigers... get it?

Anyway, you would have thought I actually was, because I was so nervous about the whole thing that I hardly functioned the morning before. I just kept falling back to my thoughts of how I was going to present Fragile X and how knowing about it can help Brother to his fullest potential.

Teenagers are intimidating...

well, not really, just kind of, OK, really it was a bit intimidating at first.

I realize in these moments of being surrounded by teenagers how surreal my life really is because I can't really relate to them through my son because he's on a whole other level... I don't know how to explain it...

Anyway, I prayed a lot about what to say, made a poster and went in with a prayer and a plan.

I think it was OK.

I only had 15 minutes, but I talked so fast I think I did it in 12.

I won't tell you everything I said or did, but I do have to tell you about one thing.

I laughed and so did the kids, but it also really woke them up to Brother's plight.

I asked for a really, really, brave volunteer that wouldn't mind being a target of my presentation.

This young man raised his hand and I brought him up front to stand next to me.

I said, "OK, you're [Brother] and I'm you. Brother is standing in the hall and you see him and walk by and decide to say "hi."

Then I proceed to act like a teenage guy and stroll up to "Brother," tap him on the shoulder playfully with my fist and say, "Hey, buddy. What's up?"

I allow the kid to respond in a "normal" manner and let all the kids soak in the common interaction they had just witnessed.

I then said, "This is how YOU see this interaction. No big deal, right? Just being friendly and you say "hi" back.

"This is what [Brother] feels when you do that," and I proceeded to run at the volunteer with a big, happy face, loud voice and almost knock him to the ground...

The brave volunteer had a look on his face like, "What the heck!" and was trying to shield himself from me.

We all laughed at the kid's reaction, but they were quickly concerned as they realized why Brother will usually hide under his jacket or run away from them when they say "hi" to him in the hallway.

I told them about just looking off, not right in Brother's eyes and saying "hi" nonchalantly and not making a huge deal out of his reaction. Eventually he'll see you as "safe" and be fine with interactions with you.

I just really wanted to drive home the hyper-arousal that occurs for Brother everyday and what a great thing it is that he copes with it all well enough to enjoy school every day.

I hope it was a memorable experience for the class because they won't be in class with Brother again until next Tuesday because of A/B schedule and a holiday on Monday. I also hope, though, that I said the right things and presented them the right way so that my son could benefit from having more advocates on his side who understand him.

You always feel vulnerable, as a parent of any child, impairments or not, when you expose a weakness to his peers hoping that they don't use it against them. Bullying is very real, and I do wish my kids have not been affected by it, but it happens... I just have to believe in the good in people too.

Oh, and just for fun, I have to tell you about the tender mercy of today.

I was getting home from my hair appointment, see:

I went back to all dark... feels good!

I walked up my back stairs to the back door, took my key out of my pocket and start to unlock the door and my key snaps at the base of the lock! What? Luckily there was enough of a nub left of the key sticking out to remove it from the lock, but not quite enough to turn the lock.

So, I immediately called Marc and told him the situation and asked him to come let me in the house. He would be about 15 minutes.

It had snowed 3-4 inches this morning so I thought, instead of getting cold waiting for him, I would shovel the driveway while I waited and get a little workout in at the same time.

I have a broken foot.

I have a big huge boot I wear to remind me of that, yet I still pass it over. So silly. So as I started to ache a little and thinking I should just get into the car and turn the heater on. A young man in my neighborhood, friends with Brother, walked by with his snow shovel and asked if I needed help.

It's moments like that that you realize—no, get smacked in the head—that teenagers these days are amazing! Truly amazing! He was home early from school and instead of hanging with friends or sitting on Facebook he was serving me. He didn't know I had just broke the key in my door. He didn't know my foot was sore. He just listened to the prompting and helped me.

While I talked with him today, I started to gain hope that the teenagers I talked to yesterday on my son's behalf were like him—good and kind and thoughtful.

Thank you, young man, for your service in shoveling my driveway, but also in giving me reason to hope that I did the right thing for my son yesterday.

Being Chased by Tigers

So, I learned something really scientific yesterday.

It kind of blew me away.

But, I know I am not going to do it scientific justice when I explain it to you in my way, so you'll just have to take my word for it or "Google" it and get the down low on this whole scientific thing I am about to explain in mommy-of-special-needs-kids-and-woman-of-humor terms.

So, let me set this up:

Think back to the days after Adam and Eve had grown their family and were no longer in the garden of Eden where the animals were tame and left them alone.

Nope, now it's a survivor's way of living. If you're in the forest collecting firewood to cook dinner that night and you hear a growl from the bushes, you aren't going to stick around long to figure out if it was a bear or a lion.

That was the stress people faced in those times and for many years to come. They learned to fight, flee or freeze. It was instinct, but even more than that it's how the human brain works. When you feel scared or stressed the signals to the "feelings" part of your brain are heightened and everything starts to take place in your body to get ready to run. Your body is thinking it needs to protect itself somehow.

This is science. Because of the way we were designed (our brains) we are actually sending more blood to our large muscles, and our senses are heightened so that we can "get away" from the stress or danger.

So, then you take that body and brain that was created to flee from harm and now you stick that same type of make-up and slap them into today...

I don't know about you, but it's not often that I have to stress about running from a bear, lion or a tiger in my everyday life. Although, trust me, I know my senses have been heightened while camping in the Utah wilderness.

So the stress I feel isn't always fear of death or being attacked, but it's so much more complicated.

I'm overwhelmed by paperwork that needs to be put together to advocate and provide for our children, stressed by their constant barrage of surprise melt-downs that I have to keep piling onto my mountain of "watch out for that one," making time for picture schedules and calendars to be made, doctors appointments for medicines and well checks and dentist appointments, communication with teachers and providers, and so many other things that are starting to stress me out just thinking about it all.

Then if you break down each one of those experiences into all the individual stresses that are in each one of those, for instance, the dentist:

Prepare with prompts and conversations for at least one week ahead of time of the appointment

Start a picture scheduled to review

Endure the screaming and wailing when it is time to go to the set appointment

Carry the flailing, wailing, too-heavy-to-be-carrying child down the stairs to the car

Stuff said child into the car and wrestle them into the seat belt

Do all this while acting completely calm

Chase them down so that you can get them into the dentist office

Try to ignore the screaming from your child and the stares from the other patients while checking in

Keep the technician informed that eventually your child will calm down enough to be checked

Sit on your child to keep them from wigging out while the technician asks what flavor or toothpaste they want

Oh.

My.

Word.

I am being chased by tigers everyday, multiple times a day.

No wonder I'm always tired.

No wonder...

I mean, I can fall asleep sitting up at my computer without hesitation and then wake to realize I've been out for a while.

Then you put my hormones in the mix of my stress and fear and "WABAAM!!!"

Seriously!?

So we are in fight, flee or freeze mode instinctly when we are stressed and then you add complete and total uncontrollable emotions on top of the already instinctly heightened senses and emotions?

For laughs, I want to put this modern day mommy's instincts while stressed back in the day when these instincts actually meant that a tiger was coming after me in the jungle,

Picture it: I'm gathering wood for the fire and I hear the growl. I drop everything and start running for my life. I'm tired and winded so once I think I am out of the woods I slow down for a breather. In those seconds of breathing I begin to realize how awful my life is, how unfair and I start questioning God, "Why me?" But, in those brief seconds it takes for me to question the tiger catches up with me and I am feeling winded and I start to notice that my thighs are rubbing together as I run and I'm sweating like a pig and my belly is jiggling as I sprint. I start to cry and the tears stream across my face because I am still running and the wind is pushing my tears back as I start to think about what a failure I am and ... wait... was that chocolate? Did I just smell chocolate? Luckily, tigers don't like chocolate. The tiger waits until I finish the chocolate in my delight, but as soon as I lick my fingers the tiger is in pursuit again. Now I am feeling refreshed and ready to ditch this cat! I am amazing! I can outrun a tiger!

Then I trip on a rock...

Ha! Ha!

See what I mean! A roller coaster of emotions mixed with my body thinking it needs to flee or freeze and you get a comedy sketch!

Hormones!

Brains!

Science!

*sigh*

So I want to share with you one of the things I got to do to relieve some of my stress.

I got to see a friend in a musical show with another friend only to find out that another friend had choreographed the show, all of whom I met when I did "Mary Poppins." I was elated to be entertained by music and dance and then to smile with my friends afterward for my "must have" selfies.

I had to put this picture in because I must have accidentally taken it while we were getting ready... we were laughing really hard together and this picture proves it... in a blurred way

Another way that I can relieve stress is when I go out on dates with my hubby.

Ah yes.

Time out.

This time we went with our DrsH friends and tried some Tabetan food! It was good and can be added to my list of different foods I've had!

After our dinner I was still up for more adventure so we went to a little coffee shop and got some dessert crepes and laughed our heads off at various things like the short and soft chairs Naomi and I sat in making us look like we were little kids sitting at the big kid table... and me just hitting that "woo hoo" it's happy time!

Then there's the stress reliever of taking the time to see our kids' little personalities and the joy it brings to Our Life.

Like when Baby asks me to pull over the chair to the cupboard so she can arrange our little wooden peg family the way she wants it.

Or when Sister takes 10 minutes to organize all her stuffed animals in her bed before she can go to sleep each night.

she barely has room...

Or when you sit down as a family and play games on the WII and giggle and laugh with your kids and watch in amazement as you see them doing things you didn't even know they could do. I mean, it's pretty amazing when Baby, who doesn't really communicate well, can tell you "bike" because she wants to do the bike racing part of the summer games and watching her little arms shake up and down is truly making life worthwhile.

Yep.

It's not always chocolate, but there are many things that I can watch for that can get me the energy to keep running.

I need my boots!

This is Ranger and Baby

Oh.

You can't see Baby?

That's because she's under the blanket.

She does this a lot. It always makes it a bit interesting when I don't know where she is and I'm looking under blankets throughout the house wondering which one she might be under.

It's kinda bad when she's on the floor like this though because sometimes I think it's just a blanket and she gets stepped on... when the blanket wails I know I've misplaced my Baby.

So we're 10 days into this new year and I still haven't made a real blog goal for this year.

I have a few ideas, but I might just let it all be a surprise and let you guys figure it out as you read along this year. (That, or I just don't want to commit to following through on doing what I tell you I'll do...)

As always, of course, I'm gonna be honest.

That's always my goal.

I try to give you the real and you can take or leave it how you want. I always hope that you feel my blogging is an honest writing of a Christian mom of special needs children, wife of a sexy-handsome husband, and a Fragile X Advocate.

So, to start right off being honest... I got nothin'

I'm kinda numb lately.

I think I have been trying to function without feeling because I really think I might break down completely if I allow myself to feel too much.

Don't worry. Life isn't horrible, nothing tragic, just sometimes life hits me like a wall and it takes a while for me to get off the sidelines and back on track.

So I guess I'm just hanging out on the shoulder of the freeway of life waiting to cool down and be ready to run the rat-race again.

Sister is always a good place to start to explain why I get overwhelmed, but still laugh about it.

Fragile X.

*sigh*

It's frustrating enough alone, but you add all the ADHD, Autism, Anxieties and Overstimulation and you have a 10-year-old bundle of frazzled nerves trying to stay contained enough to function and does quite well until the water hits the circuits.

KAPOW!!!!!

And there she goes!

I wish, bless her heart, that she was able to remember where she places everything. This is probably one of the biggest issues that leads to the biggest melt-downs. She hoards all kinds of things and "organizes" them in her special way and then she shifts gears or something and she, all of a sudden, forgets where she organized the placement of a certain needed item.

It may not seem like much of a problem so I will try to compare it to two different things... one for parents who have a baby that relies on a pacifier to fall asleep or calm down and they are at the peak exhaustion, but the pacifier is nowhere to be found. You and your baby are overstimulated after 45 minutes of incessant screaming because their "need" is nowhere to be found, but the need for what that items brings is a necessity. The baby may eventually fall asleep out of pure exhaustion only to wake up and realize that their pacifier is still aloof... tragedy for both the parent and the child.

OR, if you are sans children: it's like losing your smart phone and trying to use your flip phone again... tragic.

Anyway, a few mornings ago Sister decided that she could not find her snow boots.

I and her morning helper, Kalene, searched the entire house not leaving one blanket unturned. All this searching was accompanied by a frantic, stomping, screaming Sister tirading back and forth from her room to the front room.

We can't frantically search or that would raise her arousal mode even higher so we have to act completely and totally calm, like we're at the beach, while we try to find her boots and the clock is ticking closer to her school bus arrival.

We can't find them.

Kalene asks if she left them at school.

BOOM!

She escalates to name-calling, insults and a repeated high-pitched "I need my boots!!!!"

She won't stop screaming no matter what we do.

"I need my boots!"

Her screams are getting louder, more intense, higher pitched, more gurgled with tears and red faced death stares. 

I finally have to utilize the behavior strategy, "I am sorry that I can't find your boots, but I have tried and I don't want to be yelled at anymore so I am going ignore you now." This sounds fairly easy to do, but is tough because I never know how awful her breakdown will be when she realizes I will now be ignoring her until she can calm down enough to resemble a human child.

I walked away from the screaming and it subsided as she was able to get her thoughts together and calm her nerves enough to remember that she had left her boots on the bus the day before.

Then, like a light switch, she had gone back to her sweet self and all Kalene and I could do was laugh after she got on her bus and let all the tension escape through each giggle. I started singing a sing-song tune with the words, "I need my boots" being the bulk of the song. Once you hear a string of words over and over and over and over and over again it's hard not to go crazy without seeing the funny side.

But there's also the side that can break your heart.

I had just gotten one of my cameras back that I had taken in for repair and I was testing it out when Sister came in yelling at me because she didn't want her picture taken which got me a bit riled because I wasn't expecting to get screamed at and it ensued into a petty argument between a frustrated mother and a child with the inability to regulate her emotions. It wasn't pretty. Nothing awful. Just not nice.

Baby is VERY sensitive and starts to blubber at the hint of contention.

When I got my frustration back to calm mode and was able to diffuse Sister's anger I, still holding my camera, noticed Baby starting to melt. I took a picture because it's so tender. I want to remember those moments that she is sensitive to feelings because Sister was once like that and now I mostly see the overstimulation of anger when she is upset.

So I took a picture.

It makes me want to cry with her, seeing all that emotion in her face, in her hands. I want to remember that my children do feel things even though they don't show them in the way we are used to reading them.

Does that make sense?

Anxiety or hyper-arousal hides so much of what they are truly feeling that it becomes so tough to decipher what their feelings really are.

As I start to calmly talk to Baby and let her know that everything is OK, she continues to allow me to photograph her.

So much expression and emotion.

And then when Sister sees that I am taking photos of Baby she decides me and my camera aren't so bad and she wants a chance.

That's a real smile right there. Not a posed cheeser, but a real life, "I'm so happy I just have to show it," smile.

That's the other thing that is common in Our Life is getting used to the immediate and/or opposite emotions within moments of each other.

I'm telling you there are some days that I need by own boots to be able to wade through the crap I do sometimes...

just sayin'...

Then I have times when I want my wings because I feel like I can fly, like when Brother comes to me today after church after he has been issued a challenge that is terrifying to him and he has the capability to walk into me, hug me, and tell me that he is scared and lets his tears flow to my shoulder.

You see, emotions are a beautiful thing. They become even more treasured when you rarely get to see them expressed in their true form so that you can actually console, comfort, confront or contain what your child is feeling. 

There were days that I thought Brother would never be able to freely express his fears or sadnesses and here I was today holding him while he cried.

It was tender.

It was treasured.

It felt I could fly for a moment.

Our Life just has to rely more on those "flying" moments and not so much the mucky moments that require boots.

I'll remind myself of that often.

I hope.