Daddy!

Today's preschool theme is all about ... D is for Daddy!

I was so tired last night since I had been up and running since before 3am, I took a Tylenol PM, crashed by 9pm and slept until 6am.

Totally awesome!

And what did I wake up too? Daddy had gotten up early with Jocie, made coffee, was already pushing her morning water and hanging out together. Seemed appropriate for our theme today AND I got a little mini break ... which virtually never happens.
     Nice little surprise for mama! :)

Our morning started slow.
     REALLY slow ... like came to a complete halt haha

{I've never seen Jocie fall asleep in less than two minutes, on the floor, with nothing AND on her side to boot. She's the sweetest thing!}

After a short nap, we got busy with our school work.

Since daddy was such a sweetheart, we made him a card to go with a new recipe we were going to try: Double Chocolate Pecan Squash Bread. Ok, so the card and baking was already planned, but he deserves it anyways. I thought I'd find a way to use all this squash we have and give him some extra veggies.

To make the baking easier on Jocie and I, while she watched a short cartoon about "Daddy & Me," I measured out all the ingredients into separate bowls so she could help me pour things in without having to wait on me. I thought it would help keep her interest and the conversation flowing. Man oh man was she a cranky pants. She totally didn't want to participate at all. But as you can tell, she didn't mind tasting everything after. We at least had to taste if the batter was good because seeing how I've never made this, I didn't want it to be terrible for daddy and his co-workers.

Do you see that look in Jocie eyes -- that cranky, "I want you to leave me alone" look? -- the girl doesn't HAVE to talk for you to know what she's saying haha.

After we dropped the card and sweet bread off to daddy, no joke, less than 5 minutes later he texted me saying it was good and completely gone. I supposed it was pretty tasty!!

We also did lots of other preschool things and attempted to burn off all that sugar she ate ;)

It's been a great morning and the afternoon is totally flying by. I should definitely get off here and be productive. You should see this house of mine. Total mess. We used waaaaay too many dishes haha.

Mom Jeans

Does anyone remember that Saturday Night Live skit about mom jeans that had Tina Fey in it? Its been so long ago but I remember it clearly. Pretty sure it made me laugh.

I went online to look for it and found this video. Click HERE

Before today, I might have ran across this and gotten a laugh or two. Seems harmless enough right? Normally I'd say it is.

I really am ashamed to say that I've snickered at women who have worn jeans like these asking "Why oh whhhhhy? Do you NOT own a mirror?" I of course wouldn't say it to their face. I wouldn't REALLY be trying to be mean or hurt her feelings. So why say it at all or snicker to myself? Why make a comment to whoever is with me? Why do that if I didn't REALLY want to be nasty towards a woman for how she dresses??

We've all been there right? Thought similar things.
HELLO! People of Wal-Mart? Don't tell me everyone doesn't know what I'm talking about.
Thinking a woman is wearing something too tight, too short, too relieving, etc.
     Why do we care so damn much?
          And women are the WORST! We are TERRIBLE to each other!

Food for thought for myself I suppose.

After today, I suspect that for me, this type of thing will stop effective immediately. Or at the very least, I will be MUCH MORE aware of my mouth.

Today Jocelyn and I had a Neurosurgery appointment at Children's Mercy. With all the construction going on, it takes us around two hours to get there, unload, get to the clinic, check-in and so on. Then only to spend however long in the lobby and at the appointment itself (today it was two hours all together) and then we had another two hours to get home.

Before I rant for a minute. Here are some images of Jocelyn's brain.
Her CT from November 2012.

And her MRI from February 2013.

I have CD's of all of Jocelyn's million CT's and MRI's, but I like having printed images as well. I've seen these before, but its nice to see good shunt placement and a fair amount of space between the brain and skull. More than likely her brain has decompressed more since the images, but her ventricles remain enlarged & asymmetrical, and her actual brain tissue is growing at a slower rate. Nothing we can do about that though. Besides, its not the size of the brain that matters ... its how its USED that matters! ;)

Dr. Igbase is always so genuine and kind to us. He told me that Jocelyn has already "far surpassed his expectations." Not sure how to take that exactly (did he really expect so little?), but I'm taking it as a compliment. He held my hand, said "wow" a couple of times, expressed how proud he was of all of us and I lost count of how many times he called Jocie "remarkable." Made me smile.

Bare with me while I rant. Sorry, I just HAVE to get this out!

As Jocelyn and I are sitting in the Neurosurgery clinic doing some preschool activities and waiting for the world to stop turning (I'm so dramatic, but geez, you wait FOREVER!), I'm looking around the room and I hear these two younger girls talking about an older mother nearby. Trust me, if I could hear them, so could the lady they were talking about.

These two younger girls looked like friends perhaps and the child that was with them was being a typical youngster running around the room. Its hard to not be jealous or envious when you see a kid, in a neurosurgery clinic, doing that and acting so "normal" when so many kids that are there for appointments are profoundly physically affected.

The girls started discussing this woman's frizzy tattered hair, lack of makeup, dark puffy eyes that could easily be mistaken as tombs, her larger than desired girth and of course ... her mom jeans.

I watched this older woman juggle her large severely handicapped son trying to make him comfortable and soothe his loud outbursts, while attempting to entertain her much younger daughter, decipher the ever annoying feeding pump error signals and beeping, while filling out paperwork, answering the staffs questions at the front desk, silencing her phone after it rang four different times ... the chaos was endless.

As these girls so mindlessly (and loudly) picked apart this woman's appearance for their own laughter, I felt so much anger towards them. I fiercely wanted to defend this woman ... this saint ... this without a doubt under-appreciated, never-gets-a-break, would-give-anything-for-her-kids woman. All I could think about was punching these girls in the throat and then going over and wrapping my arms around this older lady, hugging her tight, telling her how beautiful and remarkable she was, reassuring her what a phenomenal mother she was ...

           ... I didn't get that chance.

Part of me hesitated because I wanted to pretend she couldn't hear them, part of me didn't want to make a scene ... make her feel even worse ... and before I knew it, they had called her and her entourage back to see the doctor.

I started to think about how others perhaps perceive me. Yes, today my hair was washed, I'm wearing clean clothes and although I have no make-up on, my teeth are clean. Bonus points for me??

And the bad part, many of us mothers that have a child with so many special needs, feel even more pressure to prove ourselves to everyone. Its absolutely not right, but I make a conscious effort to look nice when I go to appointments because you get treated so differently. You're taken more seriously. Perceived as a "good parent." That you've "Got your act together" or a "Good Provider" and simply are viewed and treated entirely different.

          ... Do looks REALLY matter that much?? Sadly, in some way, shape or form ... it does!

It was painfully obvious to me that these girls had NO CLUE what this woman sacrificed and endured each and every single day. How her love for her son ... her family ... is what pushes and drives her to give everything to them and often times leaves nothing left over for herself. You see, she comes last ... she has too ... somebody has too?

I saw myself in this woman so easily and my heart ached for her ... for myself. People simply do not understand what its like for your child to not be able to communicate.
     I hear, well, your daughters a baby so that's expected. NO! She's freaking THREE-YEARS OLD!

People don't understand what its like to continuously clean vomit, blow outs and change diapers. Which will very likely happen for years on end. There might not be an end for us like there is no end for so many other parents that have children with disabilities.

People don't understand how exhausting it is to load, unload, load, unload a two-part wheelchair, pile 2-3 bags on top of it and then only to lift your toddler to add to the mix. The constant lifting and straining for your precious child and equipment is so physically taxing. Its on a whole other level.

People don't understand what its like to have to take 15-20 pictures in the hopes that you get one that you can share with others.

People don't understand what its like to be out with friends and get the looks, the stares, the questions ... it NEVER EVER stops. And your friends often don't see it or hear it. You think you've gone crazy or are LOOKING for people to be mean or rude, but you AREN'T imagining it!!

Don't get me wrong, I don't mind questions when someone's being sincere and trying to understand ... that is different than the toxic sly remarks that so many often make.

People don't understand those dark circles and disheveled look is because your kid never sleeps and its not because of your own doing, its because their brain does not want to cooperate. Or that they were up late trying to find that special something to trigger some interest in their child. Or that there is simply no time to care about how you outwardly look when there are entirely too many other important things on your plate.

Its easy for people to say "You have to take care of yourself" or "You need a break" or "Your family needs you strong and healthy." NO KIDDING!!! Us mothers know that!
          Easier said than done.

I'm in a really good place with juggling Jocelyn's therapies, homeschooling, the house, being a wife, making time for myself, etc ... but that most certainly hasn't always been the case and I'm sure it won't be peaches and cream in the very near future either. That's just how life is.

And trust me, I know a lot of this rings true for many mothers ... whether their kid has extra "needs" or not. That's why so many moms are caught wearing ripped pants, a crappy looking shirt with both new and old stains and we are lucky if we brushed our hair and have our kids out the door.

I'm not trying to scold or bash theses younger girls, because the truth is ... sadly ... is that I use to be THEM!! Before life hit. Before experience. Before I truly had a reason to sacrifice. Before I knew love and true importance in life.
          Sometimes ... I still am these girls. :( I don't even like to admit that.

And do you know what I did today after witnessing and feeling all these things??

Let me tell you real quick.

Jocie and I were finished with our appointment and I needed to change her and get her some lunch. When I got to the bathroom, she had soaked through her clothes and wheelchair. I dread with this happens because Jocie is entirely too tall and heavy for the baby changing stations. There is no long counter or any other alternative area to change her. Even at a CHILDREN'S hospital, those small changing stations are it. Luckily we have a yoga mat attached to wheelchair, but I still hate putting that thing on the nasty floor.
     You have to do what you have to do.

Like usual, I found a handicapped stall, and as I'm stripping Jocelyn down, changing out the wheelchair, changing her diaper, getting new clothes on her, etc. I hear this lady come into the bathroom and start using the toilet next to us.

Mind you, Jocelyn and I are keeping to ourselves, not bothering anyone and its not like we are in the hallway, asking for ANYONE'S opinion or anything ... and like the coward this lady was ... she waited until she had washed her hands and then from behind the safety of our stall door she says "You know, these floors are disgustingly filthy. You'd think you wouldn't want to have your child laying on the floor to catch God knows what."

With that last statement I opened our stall door (we had just finished up) and just when I thought I was going to completely come unglued, she exited the bathroom.

Do you know what my first thought was when I saw the lady?? What I said under my breath?

          "NICE MOM JEANS!!!"

Really?! Rrrrrrreally Angie??!!! I'm so mature!

I just had this whole epiphany about the whole "mom jeans" thing, about being so superficial & degrading and that's what I thought?

She of course didn't hear me (and she deserved to get an ear full about minding her own damn business!), but later I was so disappointed in myself. Where was my filter. Why did I instantly take it to ugly town about her looks or how she dressed. Its never a good idea to spew whatever pops into the head. I was really really disappointed in the way I thought and ESPECIALLY after what went down in the doctor's office. I was mad at this lady for opening her big mouth and offering her two cents that I never asked for, I was mad for all the people that do this to me ... to us ...
     ... I'm sure I said that because it was already on my mind and her backside was what I saw as she B-lined it to the door, but still.

I had a lot to think about on the way home today. I still have so much growing to do, there is always room for improvement.

So much junk rattling around in my head right now.
I need to end the rant for sure!

We truly are no better than our fellow neighbor!

Things That Made Me Smile ...

... when I really didn't want too.

There were plenty of things today that did NOT make me smile today. Specifically, the majority of the day being spent watching Jocie vomit, clean her up, worry about her and then repeat numerous times. I hate when she gets into these vomiting spells and it is so hard on us both. Her, for obvious reasons; and for me, because I feel so helpless and frustrated. Makes me sad. I truly am so exhausted tonight!

Luckily, after nap time, we got to restart the second half of the day as I had hoped and prayed for.
     So very VERY thankful!

Things that I found throughout the day that made me smile ...

• A new workout.

• Playing around with the graphics of a cute photo of Boogs.

• Going to Buffalo Wild Wings and getting some delicious wings. I will forever love hot wings.
• While at BWW, hearing the lady in the bathroom stall next to me singing her heart out to Piano Man like no one was listening. She was good too!
• Watching Jocie squirm, giggle and scream with delight simply because Daddy was whistling.

Take home message?
     There is ALWAYS something to smile about!! :)

Bed in a Box

Its just what it sounds like ... an entire bed ... tightly rolled, with every ounce of air sucked out of it ... and stuffed into a box.
     Sounds super fancy & classy am I right? haha

Justin's so funny. He's makes me laugh a lot.

You forget how small a twin bed looks.

It takes a little while for these beds to totally inflate and air out. Jib has minimal patience sometimes. :)

He was so sick of our bed of 8 years, I was so sick of both him and Jocelyn keeping me up at night {he literally flops around ALL NIGHT LONG!}, so back in April, he decided he was going to buy a Temper-pedic twin-sized bed.

I know, a twin-sized bed? Guess his solution was to sleep by himself?

Off and on throughout the months, he did sleep by himself haha
When he was actually home.
On the floor.
Next to me ... who was in the queen bed.
By myself.
Heaven?
     On occasion haha -- If Jocie doesn't let me sleep, what little sleep I DO GET, I can't have robbed by a floppin', kickin', wild husband. As much as I love him, that had to stop!

Justin's thinking was if he liked the bed after trying it out, he would get another one for me, we'd make it into a king-sized bed and with it being two separate beds, there would be the least amount of movement ever.

The hard part? Me liking the same bed.

When he was gone for two months, I tested his out here and there. The verdict?
     I ACTUALLY DO LIKE IT!!

Fast forward to the month of August -- Yea, FOUR WHOLE MONTHS!!
     But he was gone for quite a bit of that.

We now have another bed.

Neither of us have ever had a king-sized bed. This thing is ridiculously HUGE, but I love that we are both getting some good quality sleep. You can not put a price tag on that! Even if you only get 4-5 hours of sleep, when those hours are good quality, it makes a world of difference.

Now the fun part.
     Shopping for king-sized bedding!! woohoo!! :)
          Let the fun begin!! {I've started dropping hints to my mother-in-law for a king-sized quilt. Those are tedious and time-consuming to make, but having a beautiful quilt for our bed would be perfect, so I'm hoping she caves haha}

"C" is for ...

Cars
     Cars
          Cars!!!

Who doesn't love cars?
Kids sure do.
     {And of course 16 year-old's! :P}

It was a fun theme for today.

We did a lot of activities this morning with the letter C and our car theme. Jocie loves picking out the letter C from other letters and images. She only missed one today. Granted, we only did "show me the letter C" five times, but she's three and that's enough. After about that many times, she's ready for something different. But hey, I'll take 4 out of 5 times!! :)

After doing our morning routine of saying our memory verse, praying, calendar, reading and singing; we started on all things cars!!

Perhaps not the best activity to start with, but I hit her with some sensory and fine motor at the beginning.

Activity #1: Dig for cars in rice and talk about colors, shapes, sizes & counting
          She looked at me like I must be crazy if I thought she was really going to touch the rice.

 

And like the mean mom I am ... I made her.

After A LOT of whining, tears and throwing her body around ... she found out this wasn't so bad.

And dare I say it ... maybe even a little fun??

Once we were finished with the rice, we switched it up and made those cars do something.

Activity #2 : Make the cars move & visually track them.
          Its always a challenge for Jocelyn to sit independently AND reach up & out.

 

No doubt she needed a reward. Mickey Mouse rocks!

 

Activity #3: Watch a short car-related cartoon.

          And yes, I use baby wipe containers for A LOT of things haha

After digging for cars and getting a reward, we were off to the next thing.

Activity #4: CAR WASH!!!!!

 

Where are those suckers?!

{Best Facial Expression EVER!!! haha}

After the car wash, you guessed it, something different.

 

Activity #5: Fine Motor, colors and counting.

          We practiced holding a marker to color a what? Yep, a car haha

{As a side note, for anyone that has a kid that needs some boundaries/borders? I take pictures like this one and outline it with Elmer's glue. Once it dries, its clear and yet Jocie can FEEL the car, bird, airplane or whatever the object might be. Kind of a cool, cheap way to help her tap into more of her senses than just visual.}

Jocie does NOT like holding markers, crayons etc. That was a big cry-fest as well, but she tried and we made the best of it. Even though that put her in a sour mood, she made me so proud with the next activity.

She consistently picked the associated number with how many cars she saw.

I.WAS.BEAMING!! SO PROUD!!!!!

I simply can not express in words how hard it is to not hear your child talk ... to hear their sweet, precious voice. So badly, with everything inside of me, I wish and pray that one day Jocie will be able to tell me what she's thinking, what she wants to do, her hopes, her dreams ... literally chat my face off!!

That day may never come, but there is always hope.

However, in the mean time, we are slowly but surely finding ways to give her a NEW "voice."

{And not that I need to justify, but for Jocie -- and many kids -- something like a paci helps keep her focused so she CAN do activities like these. This to her, is like another person chewing gum or on a pencil, walking around while reading/studying, etc.}

Another successful day at POWERful Beginnings Academy ... CHECK!



"C" is for Cookie

The theme for the day at POWERful Beginnings Academy has been one of my favorites thus far.

          "C" is for Cookie.

Some of the activities that were included were of course talking about the letter C, identifying it amongst other pictures and letters, tracing it with our pointer finger on the textured Writing Without Tears card, attempting to write the letter C on a dry erase board, reading two different books about baking/cooking (Sun-Maid Raisins and Mr. Cookie Baker), actually MAKING delicious cookies and a field trip.

I get to teach the best little girl around!!!

{I can see how much we look like one another here! So weird!}

The books suited the theme perfectly and Jocie actually seemed to enjoy them.
She's not a huge fan of new books.
Too bad though, every.single.day we read new books! :)

The cookies of choice?
     Daddy's favorite -- Oatmeal Scotchies

Our planned field trip?
     Daddy's work!
          I wanted Jocelyn to experience making and then delivering a gift to daddy and his co-workers.

I've never tried to make cookies ... or bake/cook in general ... with Jocelyn, so this was a first for us both. Its not that I've never wanted too, but its a real challenge to do this kind of stuff when a person has vision, sensory and motor difficulties.

No matter, I was up for a challenge and the goal was mainly to make it fun no matter how that looked.

I stripped Jocelyn down, cranked up some Mandisa's Good Morning, danced around the kitchen with Jocelyn to get her in a carefree mood and then attempted to have her participate as much as she was willing and able. Amazingly enough she helped empty the measuring cups {even played with them}, held the mixer with me for a little bit and even grabbed some of the cookie dough with her hand.

Jocie seemed to enjoy all of it for the most part. She whined a little bit as this was a new experience, at times got a little scared and it was a challenge for her to demonstrate muscle coordination/control.

All in all, I'd say the preschool lesson was a success! :)

{She could only patiently wait for so long! haha}

{I gave her some flour to play in while I did some of the mixing. She immediately put her hand in it - woohoo! - tasted it, wasn't too sure, made a "this is disgusting" face and then repeated this sequence like 9 more times haha}

{For all those who ate these, we had MEGA clean hands! I must've washed our hands and utensils a dozen times.}

{Such a good helper! She wasn't too keen on the loud mixer.}

While the cookies baked and cooled, we got ourselves cleaned up, ate lunch and then took off on our field trip to deliver cookies to the best people in town.


{Everybody loves cookies! It means the world to me that we have so many people in our lives that are patient so Jocelyn can have the opportunity to say "hi" by waving, hand them a cookie and smile for extensive periods of time so I can capture a picture of Jocelyn LOOKING at the camera. We are certainly loved!}

Today was really fun, a new hands-on learning experience for Jocie and now she's totally passed out in bed.

 

Mama is all smiles!

Quick Weekend

We just spent the weekend with both of Justin's parents, and boy did it go fast! Jocie didn't sleep a wink {quite literally} and I'm thoroughly EXHAUSTED. Even so, I sure did love getting to spend some time with all the family.

I actually brought my camera AND remembered to take pictures.
Yes, I'm patting myself on the back! haha

Instead of writing too much {See above -- I wasn't joking about being utterly WIPED OUT!}, I thought I'd just let you SEE our fun!! :)

We had some pool-side action.

Justin and Grandma were the only adults willing to brave the cold water and play with the kids. The kids loved them for it. Justin is always so incredible with all the little ones!!

{My favorite picture of the swimming bunch!}

{Strong Uncle ='s flying kids!}

The spectators.

General family fun, lots of eating and lounging time.

Next Day? Family brunch with the most delicious omelets and a little four-wheeling action!

{Notice a theme? Boogs did a great job sneaking naps ... little stinker!}

{The Powers' Boys -- minus Kevin :( -- We miss you Kevin!}

 

Really enjoyed our time together this weekend. I truly believe spending time with another, bonding, reconnecting and making memories with one another is what life really is all about.

 

Love all of you!!

Book Sale

This morning Jocelyn and I took a field trip to a children's book sale. Its the first book sale that either one of us have ever been too, and boy am I glad we showed up early.

If asked earlier, I wouldn't have ever guessed there would have been so many people interested in getting books at a discount.

          I was shocked.
          In a good way.

The going price was 5 books for $1.
Sure the heck can't beat that!!

I didn't get to turn our book sale/field trip into exactly what I wanted since it was a bit chaotic and there were so many people there, but it was an outing and a different experience nevertheless.

My mission?

1. Find some new 'Jocelyn Appropriate' books (which includes simple pictures so she can see them. Dang CVI can make a lot of books appear 'too busy' and then she can't see them),
2. Engage in a different activity outside of the home and
3. HAVE FUN!

I found several books about dinosaurs. Jocie doesn't have ANY books about dinosaurs and these happen to fit perfectly into our preschool theme that's coming up in the next two weeks.

 

It doesn't look like it here, but I found a huge over-sized book about a little girl in a wheelchair that I thought might resonate with Jocelyn. If not now, maybe one day? The book talks about the things she can't do because she's in a wheelchair, what she excels at in her life in different ways, her feelings regarding everything and so on.

 

One of the coolest books I found was a hamburger shaped one. Its a 3-D pop-up book about nutrition and even has detachable pictures to go with it. The detachable pictures are a bit too small for Jocie to actually see {again, because of the dang CVI}, but I will totally scan them, make them bigger, laminate, add some velcro and play a matching game with them. Can you see the teacher inside of me emerging?? I do! :)

 

Look at this thing -- cool book right?

 

 

I also came across these books but decided "Toilet Training the Retarded" simply wasn't an area of interest.

 

I snapped a picture of these books because I was shocked, totally and utterly SHOCKED, that a book like that would be at a children's books sell. I have to admit, I was pretty appalled that books like this haven't been pulled and used as fire-starters. I'm not one for everyone being all politically correct all the time {seriously, all that 'correctness' can REALLY get on my nerves}, but once you have someone refer to your very own child as "retarded" ... you think twice when you see and hear that word. I'll never forget the first time a woman came up to me and said "What a beautiful daughter you have" only to then follow that with "I use to work with little retarded children like her."

 

          There simply are no words for that.

 

I realize that the word "retarded" was once acceptable. My friend reminded me today that terms are ever changing and so are their acceptance, but when that word is used now, its most certainly is used in the most derogatory of ways. I'm sure that those like the lady mentioned above, who have felt the need to inquire about my daughter, were simply looking at her in the wheelchair, her lack of visual contact, being nonverbal, the differences in her motor mannerisms; and then of course ASSUMED this about her.

 

It only takes hearing this word once for someone's whole opinion to change. I have people very close to me that continue to use the word "retarded" ... family members in fact ... and they don't use the word to necessarily describe someone, but they don't realize how them using it, makes you SEE that word in your head ... how it makes you FEEL.

Sometimes, it simply comes down to what a person has experienced, that shapes their perception on a subject matter.

 

And let me be clear, I don't care if someone is "retarded" or not, it doesn't defined their character, their heart, their soul ...

          ... What matters is that we ALL live up to our potential ... engage in our individual God-given talents/gifts as He's intended.
     I truly believe that!

 

But I digress. All this nonsense is a totally different subject matter.

 

~**~ Back to the good stuff ~**~

 

Can you believe all these books???!!! Books about counting, farm animals, colors, shapes ... you name it and we about got it! :)

 

All-in-all, we got 25 books for a whopping $5!!! Total steal!

It really was a good morning, got to see some familiar smiling faces and do something different.

 

Success! :)

Throw Back Thursday

I have NO IDEA what we were thinking, but this picture makes me laugh SO HARD!

I literally laugh ... EVERY.SINGLE.TIME.I.LOOK.AT.THIS.PICTURE!!!

A madam and her "workers" hahaha My mom's expression is priceless! Its so fuzzy, but HELLO!! We surely weren't going to BUY these pics!!! haha

 

At least in this picture of us three, we don't look like my mom's trying to put us up for sale!

 

And I'm still missing my crazy, mama-drama family!!

Hoping to get a new family picture in a few years. :)