Wednesday, April 16, 2014

My Rebellious Streak

You know I try pretty hard to keep my hyper-ness under control for the most part. I don't want to scare people off... right at first. After they get to know me they feel too sorry for me to run away...

I try to do subtle things here in and there with my hair, 
my make-up, 
my clothes, 
to be able to quietly show off my love of life and vigorous vitality!

This time I went with blue...

Aqua blue...

Or as brother calls it, "Turquoise!"


No, I am not hanging my head in shame.

I'm trying to make sure you can see my hidden blue streak.

In my hair.

Tee hee!

No, it is not because I feel blue.

It's because I feel vibrant.

Our Life is good and I just had to show my happiness through my little rebellious streak...

Oh, and yes, those are fake eyelashes:
and yes, that is a zit.

Yep.

Tuesday, April 15, 2014

Lego Page Puzzle

I am amazed sometimes at the things I will do for my kids...

Not because I am a cool mom, but because I can't handle hearing the whining and screaming...

You have learned, by now, that Sister really gets her mind set on something and there is just no changing her ways.

It.

Must.

Be.

Done.

Baby got to her favorite Lego book and shredded it to pieces. (Also something Sister used to do and still does sometimes.)

It took a while for me to find all the pieces that matched.

Not too bad:
 The great part was that after I took this picture, I found the missing two pieces!

I know, I know.

This alone gives me the "Awesomest Mom Ever" award...

OK, maybe I'll just be able to have peace from the screaming and incessant yelling.

Pure motivation.

Saturday, April 12, 2014

Almost Cheek to Cheek

So, I keep trying to post movies for tonights post because they are just so cute but I am struggling with it tonight, apparently... Aaargh!

So I just have to post one of my favorite pictures so far this year of Sister and Marc.

She was dancing and Daddy wanted to teach her how to dance so she stepped onto his feet and away they flew like Ginger Rogers and Fred Astaire!


I seriously treasure these kind of moments. It makes Our Life seem like it isn't quite so "un"typical...

Wednesday, April 9, 2014

Happy Syringes to You!

This time, I'm starting at the end with my pictures.

Where and why would this happen?

What is it?

Well, it's a cake...
shoved full of medicine syringes...




That piece of cake was sliced from this beauty:


That cake was for Marc's cousin's birthday party and our other cousin's husband's birthday party... (boy that's a lot of 's-s) Let's just say it was a Par-Tay!

Jerry even had to put his hat on backwards to show us he's not getting older, but younger!


 All of us just sitting around, having cake, and eating it too...




Marc and his sister book-ending their cousins!



This is Marc and I on our way to the shindig. Yes, my phone didn't switch it over so it looks like we are driving in Europe. And yes, we were happy to be together but looking cool was the priority at the time...

So, going back to the beginning, which was really the end that became the beginning...




Why do my kids enjoy putting syringes in slices of birthday cake?

Well, it would have made a whole lot more sense if you could have heard all 3 of them singing "Happy Birthday" in the kitchen and giggling.

What can I say...

We have taught our children not to play with matches, so I guess syringes were the next best thing to candles...

OH, and they had their cake and ate it too... also... ugh! grammar police, you can laugh...

Thursday, April 3, 2014

Chalk Can Be Erased, But Memories Can't...

You know, my love for chalk art actually started because my kids love it so much. 

This is actually the chalk art that started my love for it in April of 2013
(So I guess you can say this is my anniversary post... Hee hee!).
So many people in the neighborhood commented on how happy it made them that I just had to keep going and I've added a few more colors since my dollar store chalk days...
but my favorite part is how happy Sister is--she's proud of the sky she drew for me above the flowers!

I had to be out there with them so I just joined in... now I think I love it more than them.

Sometimes when we go to Grandma Lynne and Grandpa Gary's house 
the kids will pull out the chalk and draw on their back patio.

I love seeing what they come up with:


Sister drew a lovely picture of Grandma Lynne... it's perfect... I mean, it even has 10 fingers! 
(made you count them didn't I?)

I don't know what the numbers are on the side.

Measurements maybe?

80, 30, 13 would explain the triangle shaped body...

Oh, how I love Our Life!!

P.S. I am pretty sure that the above two photos show the official "look at my side-walk art" pose.


As a side note: This is the chalk art I did with the neighborhood kids' help.

I wish I would have taken a picture of them all (7 total) helping draw the water, 
smear the chalk into the characters for me and add little ditties on the right side—
the water actually went across the entire driveway, it was epic!

I hope these little things are big memories.

Tuesday, April 1, 2014

Cruel Sleep

If any of you have been following Our Life for while, you know that my health isn't exactly the best. It's not because I don't exercise or eat right... definitely not. I don't drink alcohol. I don't smoke. I don't do illegal drugs. I eat well and I eat healthy, pretty much everything I eat is made from scratch or is a whole food. I exercise 5-6 times a week anywhere from 20 - 75 minutes which includes cardio and weights on the longer days. I take my vitamins and other supplements.

But, there are still issues I can't seem to get rid of no matter what I do to stay healthy and happy.

I have to exercise everyday, not only because I want to keep my weight down, but it really helps keep depression away and keeps my back from freezing up in pain. I also have hypothyroidism and that just adds to the issue of maintaining a good weight. So my exercise is therapeutic, not just physical.

I eat well because I grew up on home made food and fresh fruit and veggies in season so that is just what I have grown to enjoy. I've been trying more often to add more veggies to my diet--that's where my fancy blender comes in handy--throwing a couple handfuls of spinach and celery with some oranges and a banana make for a great lunch/snack.

Sleep... I've never been really good at that. Anxiety and depression have always made sleep an issue when I was in my teens and younger. Then I had children with Fragile X Syndrome...

...

Not all kids with FXS have troubles with sleep, but many do and my 3 are in the category of being able to stay up all night or falling asleep and then waking with night terrors. Thanks to Melatonin and Chlonidine we have had many more normal nights of sleep for the last 6 years.

Now, though, I am just tired ALL THE TIME. No exaggeration, seriously. I could fall asleep anywhere, any time and that has never been me. Ever.

Fighting off sleep all day every day is not easy or fun.

I don't recommend it.

Maybe I don't sleep well because of  the extreme pain I am in 95% of my life because of my back. I can't toss or turn unless I want to wake up to concentrate on how I'm moving or move anyway and be awakened by the pain. I recently had another MRI and some x-rays done revealing that my disc is no longer herniated, (yay) but has degenerated into pretty much nothing (boo) and my spine at L5 and S1 is basically bone rubbing on bone. (Can you say, "owie!")

Or maybe I have sleep apnea like my dad. They say it is hereditary. I guess he has it really bad.

So if I am going to find out more about my back, I guess I should find out why I am so tired. Maybe they are related...

Which brings me to the point of this post:

They have sleep studies to see what your troubles are when you are sleeping. It is quite an amazing thing if you think about it.

Did you know, though,  that sleep studies are cruel and misleading.

Seriously.

You just don't do this to a mother of 3 children with FXS.

Tell them they get to have their own private room away from children and hubby all night long.

Ask them to be there at 8pm, which makes us think we actually get to go to bed early and sleep in the next day because you arranged a babysitter to get the kids off to school after Daddy goes to work.

Lead you in as if you are staying at a hotel and show you to your room which is fully equipped with a beautiful bed, dresser, curtains and even a comfy chair and your own TV with all the remotes to yourself.

Then they invite you to go ahead and get in your pajamas and relax while watching TV or whatever until they can start getting you ready for the test.

All the bliss ends right there.

Just when you get comfortable, in come the nice nurses with the electrodes, cords, glue, scrubbers, and various other attachments.

You think to yourself, "surely they aren't going to attach all of this to me..."

After an hour this is what I looked like:



I don't even want to count all the cords coming out of that box, because they were ALL attached to me! All of them.

But, look, I'm staying positive, I still have a smile on my face. I'm thinking, hey, I look pretty good with all these polka dots on me. I think it's kind of funny so I just have to take a picture and stick it on Instagram.

They said that I couldn't go to sleep until 11 so I tried watching some TV while waiting for my curfew.

We don't have TV service in our home. Just because it's too expensive and just a lot of stuff we don't want to watch. So we do the Netflix thing.

Whoa! TV. How many channels do you think we need? By the time I finally flipped through the 130 available channels to settle down and watch something that didn't include Thomas the Train, Elmo, Pokémon, or the Wizards of Waverly Place.

The nurse came in to get me all set up for bed. 

Uggh.

She added another element not pictured above and that was the oxygen nose tube-type thing that didn't actually send in oxygen but monitored the breaths in and out of my nose.

Finally with electrodes, tubes, wires and a big gray box for all the wires to hook into securely it was then fastened around my neck and shoulders, it was time for bed.'

I laid there, almost laughing.

Then I jumped as a loud voice chimed in above my head into my room. The nurse was now talking to me over a speaker above the bed. I startled a bit because I wasn't ready for the noise. She proceeded to ask me to blink my eyes, look sideways, breath in and out, hold my breath, breath out and in once, wiggle my feet, wiggle my toes and hands.

Finally. Sleep.

Ha! Nope. Not with all this stuff stuck to me.

I don't know if I slept really. I just remember being awake and trying to find a comfortable way to bare all these cords and sticky electrodes while sleeping.

I remember somewhere in the middle of the night I had to pee so bad but just did not want to deal with the nurse having to unhook everything... so I suffered for the rest of the night. I am sure the whites of my eyes had turned yellow.

Then... sleep. Deep sleep. Not even knowing I'm asleep because I am so asleep.

Lights on at 6:00 am.

This was no vacation for mommy!

 Can you see the bloodshot eyes!

And to cap off my one night stay at the Sleep Study Hilton when I was needing to use one of the public bathrooms to relieve my anguish after a full night of holding back I walked in on an old lady pulling up (or down) her pants.

Baaaaahhh!

Maybe she got about as much sleep as I did and was too tired to lock the bathroom door...

Oh, side note: The results came in that I have minor sleep apnea but they think it is the episodes of my shallow breathing that come so close to being apnea episodes or it may be from the back pain I am in.

Hmmm.

Good night.

No, really. I hope you have a good night.

Right on Track

For practically Brother's entire life, I have always had to worry about whether or not he was "on track."

When he was a baby I had to worry about him being on track for eating the appropriate foods, rolling over, crawling, playing with his feet, playing with toys the right way, crying when he needed something.

At toddler age I had to worry about him being on track with walking, talking, bending his legs right when he ran or walked, catching himself with his hands in front of him, signing what he couldn't say (which was everything) and being able to follow simple instructions.

Once he got to school it was all the worry of him being on track as compared to all the mainstream kids... I think that's where I tried to stop keeping track of everything.

It was too depressing and depriving to constantly compare him to his "normal" peers knowing that he would most likely always be a step or 20 behind...

But, with every IEP meeting there is the reminders of whether or not he is on the "right track." His IEP meeting includes goals like, "interacting with peers by asking appropriate questions," "multiplying multi-digit numbers, " and "Continue progress in reading." I'm pretty sure there are not a lot of parents out there who have to worry about their 14-year-olds doing these things. In fact I would bet that the goal for some kids would be more like, "interacting with peers without being inappropriate." Tee hee!

His next IEP is coming up this Friday and I am excited to hear what awesome goals they have in mind for Brother and to hear the praise of what he is doing well. Trust me, though, I do have to hear all the stuff he doesn't do at all, doesn't do well, or shouldn't do. I think that's where I've gotten tough-skinned. You just have to learn to take the good with the bad and sometimes you need to hold onto the good so you can get through the bad.

It makes me wonder when I hear stories about parents explaining their horrifying and belittling experience of an IEP meeting for their children. It makes me wonder if I am a lazy parent, a neglectful parent, a naive parent, too laid back in my expectations or if I just have always been so lucky to have great educators on our children's side... I think I'll just enjoy it while it seems to be good and try not to over think it.

But there is one track that I know Brother is right on!

Junior High Special Needs Track Team!

Yup!

He's doing it again this year and he has had one meet so far. I went and took a few crumby pictures to share!

There he is the really little guy in the back with the green shirt on—
he's warming up by walking the track before the meet begins.

Here is part of his team and coaches getting stretched out for the big meet!

This was my favorite moment of the warm-up... tee hee! Just made me laugh...

Here comes Brother down the lane to take off for his first long jump.

Here's a pic just before his last "big" jump... let's just say it's fun to go support his effort (wink)

 This is where I wish I had a picture to show you, but I decided to take video instead. This was the 100 meter that he ran with all the special needs kids from both school's teams. He did so well! He was in first place till about half way when he got so excited to wave at everybody cheering for him. Me included. He was so proud! When he was done he told me he got first place. I tried to let him down easy that I didn't think it was he who got first, but he insisted. Then when his coach informed him that he got 4th place he turned to me and stated, "Oh. I got 4th. ... I think I was first."

This is Brother with his Special Needs Class teacher. She came just to support her students.
He was so proud to have her there. Mrs. S works magic with these kids and I think the magic is working with Brother.
He loves her, I think, more than me sometimes... and that's OK.

Mrs. S giving the "low down" on how to throw a shot-put

Brother's turn is coming up...

OK, so running is definitely Brother's strong point in Track. I think that with the low muscle tone,
loose connective tissue and hyper-flexible joints the long jump is not his forté. When it comes to the shot-put...
well, do you think those Kermit-the-Frog arms would be able to throw 6 pounds very far?
Let's just say I couldn't be prouder of him for doing it and getting it past his shadow this year! Yay!
It's all how you look at life.

If you want to stay in the rut along the sidelines of the track and whine about how hard it is to run, let the led shot-put weigh you down to nothingness, or run and then stop because you are to scared to jump, you can do that.

Or...

You can get on the track and run your hardest while many others cheer you on, step up to the sand pit to throw a led ball that may only fly 4 feet and you can run and jump with all you've got and know that in all of it, you did your best!

That, my friends, is where Brother is, "Right on Track."

Run hard and live life to the fullest!