My get up and go….

Has got up and left.

One of the awesome (note sarcasm) hallmarks of Lupus is flares. The severity of Lupus symptoms wax and wane. One week I may be on top of the world, nothing hurting, plenty of energy, I am woman hear me roar. The next week it is a struggle to get up off the couch due to crushing fatigue and pain. My Lupus has been pretty well controlled for the past two years.

But this past week….it is back.

My brain is a fog, my joints hurt, and I am so tired. Not just tired, I am tired.

It is a level of fatigue that I don’t even have the ability to explain.

Where the thought of walking into the kitchen to get a cup of coffee is too much. The task of folding laundry can bring me to tears because it would mean moving joints that feel like they are full of crushed glass.

And it needs to end soon. I have a life to live….

Thursday Thinking – Happy Thanksgiving

This is a weekly series that I hope you will take part in. Basically, I will ask a question, you answer. Easy-peasy. ;) Sometimes the questions will be very simple and easy to answer in one word. Other times they may be more controversial and require a bit thought on your part.

Ready?

(Thanksgiving Edition – Happy Thanksgiving Y’all!)

What is your favorite Thanksgiving food?

Mine is mustard bbq pulled pork. We never were a “traditional” family. 😉

Reach for the sky!

This past Sunday we did something I did not think we would ever be able to do.

We reached for the sky….

When our oldest three children were younger, we thoroughly enjoyed attending events and special productions. Fireworks, movies, concerts, even amusement parks. It was fun for all of us and made for some amazing family memories.

But then Faith was born and things got a lot more complicated. Suddenly we had to factor in so much more into “simple” family fun.

Would the time interfere with medication schedules?

Did it involve any waiting?

Loud noises?

Bright lights?

How fast could we get out if needed?

One of the places you DON’T want to be with a child in sensory overload, screaming, thrashing, and vomiting is on a tiny passenger ferry in the middle of Charleston Harbor. Trust me on this one.

Faith is 8 now and we have made some great leaps this year. Her ability to reason has increased greatly. Imaging trying to reason with a 2 year old and a 3 year old. You can fa-get-ta-bout-it with the 2 year old, but you might, just might have a slim chance with the 3 year old. This year Faith has been more like a three year old.

When we were given the chance to see Disney on Ice – Toy Story 3, my knee jerk reaction was “No”. We don’t DO things like that.

But then a tiny, probably heavily medicated, part of me thought….”Why not try….?”

We chose not to tell Faith about our upcoming adventure. We know that time is very hard for her to understand and if she is anticipating an event, it becomes an obsession. She will hyper focus on the event and to be honest….make it pretty miserable for all around her.

The morning of the event (We chose the 11:30 showing since it would not interfere with any medications) we told her that we needed to get dressed and she needed to choose a few toys to take in our special travel bag because we were heading to the city. We reassured her that we were not going to the doctor and that it was just a fun trip. She willingly got in the car – that can be a challenge at times – first hurdle cleared!

She was anxious during the ride to Kent because going in the car on a Sunday morning is not part of our normal routine.

The drive to Showare Center is about 1 1/2 hours. Right at the very end we began to lose her. She was starting to stim and repeat “comfort” phrases. That usually means we are at critical mass and about to explode. Right as she began make the squeaky noises that we know precede a full blown meltdown she spotted this:

“It’s Jessie! It’s Woody! It’s Buzz! Mommy look! Look! Look!”

As we pulled into Showare, we hung Faith’s handicap tag up and were immediately directed to the handicap parking. Easy and fast. As we stopped, a parking attendant approached the car to make sure we were ok and could handle unloading. What great service! At this point we chose to not bring in Faith’s wheelchair. The distance to the door was manageable and we felt that Faith was rested enough to manage that walk. We walked to “Will Call”. It was a very short, easy to manage walk and we encountered no line.

However, by the time we reached Will Call, Faith was struggling. At that point I asked at the window if we could change our seats to ones with no steps to help Faith as much as possible. I offered to show the ticket person our disabled card but she didn’t need to see it. After a small switcheroo, we had our ADA seats and we entered.

The lights and noise and general commotion caused some hesitancy at first. Faith was moving slowly and seemed very anxious.  In order to refocus and direct her I used the old parenting standby…..the bribe.

Look! A Jessie dolly! Just what you were going to ask Santa for! Would you like one? 

She handled the commotion around the vendor very well and even, with some prompting, asked for the Jessie all by herself.

Jessie in hand we resumed our walk to our ADA seats. The directions and signs were very clear and we found the right section with no issues. As soon as we showed our tickets, the usher walked us right to our area and made sure we had what we needed to be comfortable.

At this point she was calm but it became apparent that we were on thin ice. Lots of yelling, excited children, vendors walking around with spinning lights and food, loud music. Faith began to hyper focus on the hats for sale. It seemed that every kid there was either wearing a Woody or a Jessie hat.

“Where’s my hat? Mom? Where’s my hat? Dad? Where’s my hat…….”

Don’t judge me.

When the lights went down, she reached for my hand. Scared but excited. The bright lights were not too much of a distraction and while they did move around a lot, did not seem to bother her as much as I thought they might. The music and voices were at a loud, yet tolerable level. She only had to cover her ears a couple times. And her wonder….her wonder was infectious.

“Look! It’s my toys! They came to alive!”

My only real complaint about this entire day is this….this picture below is what the view is for a handicap child who is unable to stand up for any length of time. This is what Faith’s view was:

The ADA seating was right at the ice, however there were several additional rows of seats actually on the ice. And the children in those seats, like the rest of the arena, were encouraged to stand and dance part way through the show. Once they rose from their seats, the ADA seating was blocked. Faith was able to see tiny snitches and glimpses of the show, but since she was unable to stand, she mostly listened.

The voices were dead on for the movie and the story line was right on with parts of all three movies. The special effects were fun and not scary. The “fog” was not overpowering and did not have a funny smell. The cast tried very hard to engage the crowd and made a point to wave and smile at the kids (who could see….).

As we exited she saw a flyer for Phineas and Ferb On Ice. A little voice beside me asked….”Can we see Perry?”

Maybe kiddo…..

{disclosure: Mommy Rambles was given tickets to Disney on Ice – Toy Story 3. However I was not asked to write a review and all thoughts and opinions are my own}

My John Hancock

Thursday Thinking

This is a weekly series that I hope you will take part in. Basically, I will ask a question, you answer. Easy-peasy. ;) Sometimes the questions will be very simple and easy to answer in one word. Other times they may be more controversial and require a bit thought on your part.

Ready?

Suppose income taxes had to be paid to any cause or charity of your choosing instead of to the government. What cause or charity would you chose?

This one is easy…Kids With Food Allergies!

My John Hancock

Holiday sendCheer(ios) – part 2

I found them at WalMart!

After learning all the details of the Cheerios sendCheer campaign, I knew we would be participating. We headed out to our local Walmart to try and find them. Our first stop was in the cereal aisle. The specially marked Cheerios boxes were right on the bottom shelf. They were at a great price also, $3.00. Think about that for a moment. By spending $3.00 on a great big box of Cheerios, and sending in the postcard, Cheerios will donate $1 to the USO! That is awesome!

We also found them on the end of an asile.
Cutting this out takes less than a minute!
Easy-peasy!

I asked for the kids help. I wanted to know what we should write to another military family. I think we came up with exactly how we feel, and we let Faith choose some decorations. :)

Ready to go!

If you missed my first post and are wondering what this is all about, here is the quick rundown:

This fall, Cheerios® and the USO are partnering to send “Cheer” to military families to thank and encourage them for their commitment to our country.  Specially marked boxes of Cheerios cereal will feature “Cheer” postcards, which can be cut out and mailed to military families through a partnership with the USO.  Even more, for each postcard received, Cheerios will donate $1 to the USO to help support programs for military families.  Cheerios has already donated $150,000 and will donate up to an additional $100,000 based upon the number of postcards received by November 30, 2012.

I had planned on coming up with a fun recipe to make with the Cheerios. Maybe cookies? Granola? Energy bars?

Riiiiiiiiiggggggghhhhhhhttttttt.

Do your kids do this?

Cheerios don’t last long in our house. But usually they make it longer than two days. Sheesh. Do your kids do this?

Pretend this is a picture of cookies!

If you would like to find out more about this awesome campaign and find out more about Cheerios and the USO, click below! Keep your eyes open at your local Walmart and pick up a box! Bring a smile to a military family’s face. Do it!

This post has been compensated as part of a sponsored charitable opportunity for Collective Bias. All thoughts and opinions are my own.

My first bloggity thing – part 2. I did it! #ACTIgames4girls

Part 2:

If  you have been following my adventures so far….

Thanks for reading! You are awesome!

BIG GROUP HUG! Mwah!

So, we made it to the Hyatt, handed the (please don’t run out of gas) van over to the valet and after taking a deep breath…walked inside.

We found the elevator and made it to the right floor. Then we proceeded to try and join the veterinarian conference also taking place on that floor.

Uhhh…wrong group.

A very sweet waiter pointed us to the right conference room.

Walking through those giant, fancy-schmancy doors was one of the scariest things I’ve done.

OMG. OMG. OMG. I can’t do this. I can’t not do this. I can’t do this.

Then I’m pretty sure Alane pushed me inside.

 I must have been sporting the “deer in the headlights” look because as soon as Jenny spotted me, she  came right over and gave me a hug.

You have NO idea how much I needed that.

Ok, I’m through the doors, still breathing, I have a few familiar faces….

You know the scene when the new kid goes to the empty cafeteria table? Yeah. That was me.

But it’s all good….because I was there!

Now on to the important stuff, why the heck was I there anyway?

The Activision Games For Girls Summit is exactly what it sounds like. A summit of people, mostly moms, getting together to talk about video games for girls. This particular summit focused on 6 games in particular: LalaloopsyZooblesWappy Dog, ZhuZhu BabiesMoshi Monsters: Moshling ZooSquinkies 2: Adventure Mall Surprize! . I will review the details about each game one by one in upcoming posts. During the summit we learned quite a bit about the positive side of gaming for girls. Some of the facts that stood out the most to me…

  •  Games provide us with the 4 ingredients that make for a happy meaningful life
    • Satisfying work
    • Real hope for success
    • Strong social connections
    • A chance to become a part of something bigger than ourselves
  • Games create a positive mindset and making them more resilient in the face of failure
    • Gamers spend 80% of their time failing
    • We like and trust someone after we’ve played a game with them
    • More likely to help someone in real life after we’ve helped them in an online game
    • 40% of time on Facebook is spent playing social games

(40%????? Really? Wow, that’s a lot of Mafia Wars and Farmville!)

Video games aren’t just hard, they’re adaptively hard

  • Keep people at the edge of their abilities and push them further
  • Adaptive challenge is stunningly powerful for learning, according to John Gabrieli, a neuroscientist at MIT.
  •  Faster reaction times
  • Increased hand-eye coordination and manual dexterity
  • Increased spatial skills
  • Ability to divide and switch attention, pay attention to more than one object/person

Brigham Young University’s School of Family Life study (Feb 2011): girls who play video games with a parent enjoyed a number of advantages.

  • Behave better
  • Feel more connected to their families
  • Have stronger mental health
Did you know all that? I had no idea. I just knew that Faith had a lot of fun playing. :)
Watch for some FUN giveaways in the coming weeks!
Want one?
{Mommy Rambles received a bag of goodies at the Activision Games for Girls event. I was not asked to write about my experience, nor was I compensated for this campaign.} 

My first bloggity thing- Part 1 – What an adventure! #ActivisionGames4Girls

Part 1:

When I began this adventure about a year ago, I didn’t know where it would lead.

Faith was in need of a new car seat, but due to her size, she had outgrown all conventionally produced seats. That narrowed my choices from 4000 seats, to about 4 special needs seats.

To be honest, not a one was cute, or looked confortable. But how would I know…..I could not find any real reviews.

“Real-life, this is my kid, in my car and this is what I think of the seat and this is what my kid thinks of the seat.”

If I am spending upwards of $2000 to keep my  special needs child safe, at least give me more information than a boring line-by-line fact sheet. I want to know what other real moms, of real special needs kids, think of it.

I was never able to find real reviews on any of the seats, and we had to make a choice based on pictures.

That got the wheels turning….

I had been blogging since 2005 but I felt it was time to add more elements in. If I was searching, and failing, to find information on how products work for special needs families, it was also happening to other special needs families.

I did an informal poll on my personal blog, and of my Twitter and Facebook peeps. Would a review blog focusing on how products work for special needs families interest you? The response was overwhelming and immediate.

YES!

Armed with that knowledge, and on coffee wishes and valuim dreams, Mommy Rambles began.

I don’t know what I’m doing most of the time, I just try and do right by you, the loyal readers who I hope I am helping. I try to show you parts of our life, good and bad, and try to get to know you, my readers.

What this recap is leading into is….. Today I was invited to, and actually attended my first Bloggity Thingy.

I have severe social anxiety. Awful!

I am scared to drive. Terrified.

When the invite to Activision Games for Girls Summit arrived, my first response was ….no. I can’t. I can’t drive there. I can’t walk into a room with people I don’t know. I just can’t.

But a tiny, probably heavily drugged, part of me said….”You have to.”

If I want to keep Mommy Rambles on the right track, moving into bigger and better things, to be able to help you, my readers, find out the information you need, then I need to take the next step. I needed to step out of my comfort zone and actually start meeting people.

This was the perfect place to start. I knew the wonderful lady I was invited by, Jenny. I knew that one of my close friends Alane was going. I could do this…..I could……

Oh goodness…..what did I get myself into?

The day before the Activision Games for Girls Summit, I received the dreaded call from the school. Faith was sick, throwing up, and I needed to come pick her up. Right Now. And she needed to be out for at least 24 hours.

I managed to get our respite care worker scheduled to cover from 9 to 3. Which is all fine and good, but I needed to leave at 8:45 to catch the ferry…. Hubby looked at his schedule and was sure he could sneak home from 8:30-9

The morning of the summit arrived and my tummy was in knots. I was ready to back out. I felt a major panic attack just moments away. 8:30 – no hubby. 8:45 – no hubby. If I didn’t leave at 8:45 I ran a risk of missing the ferry! Full panic starts now. 8:50 hubby calls…stuck at work. (Deep calming breathes….I can do this. No I can’t.) 9am the respite worker arrives. I literally run out the garage door as she walks in.

Crap, crap, crap….I am late. So late. And WHAT THE HECK? My van is on Empty. My GPS says we have 15 miles to go. I’m not proud of it, but I have driven 20 miles with my gas light on before so I think I can make it to the Hyatt 8, then get gas afterwards. Right? Right?

I stopped by to pick up Alane. Knowing how late we were, and how close I was to a nervous breakdown, she did her best to keep the conversation flowing. She also spent the ride to the ferry terminal talking in the “soft, soothing, everything is fine, ooooommmmmm” kind of voice usually reserved for dangerous people holding weapons.

With 2 minutes before sail time, we got through the ticket booth, flew up to the holding line, and watched the gates close.

We missed the ferry!

We did some rerouting, Google mapping and plain ol’ cursing and came to the realization that the fastest route to get us to Seattle would be to just stay right here and wait for the next ferry.

Okie-dokie. Put in a movie for kiddo, got our electronics charging for the trip, got the car warm and waited. While we were waiting, Alane briefly mentioned something about her battery having died in the ferry line. Whatever…my Scarlett had never failed me before. The conversation was good, the tweets were good, the movie was good, the next ferry arrived and unloaded right on schedule. My anxiety level was waaaaay down. I COULD do this.

Then the movie stopped, then my GPS stopped. Oh nooooooooo! 

My battery was dead. In the ferry line. Seconds from loading.

I jumped out of the van and ran to the car next to us. It happened to contain the sweetest older guy. He was so sweet that I want to adopt him and keep him as my grandpa.

He helped us jump the van in literally minutes. Less than 5 minutes later we rolled onto the ferry and were on our way. Thank you Grilled Cheesus, thank you!

I spent most of the ferry ride calming my racing heart and reassuring myself that I COULD do this. Every cell in my body wanted to turn around and just go home, but dang it….I needed to do this to help my blog grow. And make the connections I needed to make in order to keep reviewing the products that my readers are looking for.

As we approached the Seattle ferry dock, the adrenaline started. Would the van start? Would we have enough gas to get to the Hyatt 8? When I reached my van down on the car deck, who should be there? Sweet guy I want to adopt as my grandpa. He wanted to make sure the van started. (Can I please hunt him down and keep him? Does that sound too stalkerish and strange?)

I said a quick Hail Mary and…..Scarlett started right up!

Perfect! This day was turning around! We made it to Seattle, the GPS was locked on to the Hyatt 8, we were only going to be 10 minutes late!

Docked….cars rolling off into the wilds of Seattle….but…our lane wasn’t moving. Dang it people, I have things to do, fears to get over, challenges to overcome…..why are we NOT unloading?

Because the car in front of us broke down.

Of Course.

A multitude of muscular Ferry workers appeared out of nowhere and finally pushed the car far enough out of the way that those of us stuck behind could drive around and off.

Then I was doing it. I was driving in Seattle. Alane did resume her calm speech and helpful directions and…..we made it! We pulled into valet parking, handed over my keys, said another prayer to Grilled Cheesus that my van would not run out of gas while the valet was parking it, took a calming breath and headed to my very first Bloggy Thingy!

My John Hancock

Thursday Thinking

This is a weekly series that I hope you will take part in. Basically, I will ask a question, you answer. Easy-peasy. ;) Sometimes the questions will be very simple and easy to answer in one word. Other times they may be more controversial and require a bit thought on your part.

Ready?

If you could have any place on earth all to yourself for one day, where would you chose?

Because I’m cold and feeling kinda homesick, I want Isle of Palms, SC all to myself.

Holiday sendCheer(ios?)

I am a military wife.

My husband is a submariner in the US Navy.

He does what he does because he loves it. I’m along for the ride because I love him.

The life we have chosen is a rough one.

We say goodbye…often.

We move…often.

We spend holidays apart…often.

It’s not all sunshine and bunnies and rainbows and hot guys in uniform.

Sometimes it’s downright lonely. Luckily, being part of the submarine community, we tend to run into the same faces over and over at different duty stations. We also do our best to support each other during deployments. Husbands who are home are sometimes sent to another house to fix a leaky pipe or mow the lawn. But we know the favor will be returned when our spouses are deployed. Support is crucial to keeping our day to life running smoothly. And knowing our “at home” life is supported, our deployed spouse is more at ease and able to focus on the task at hand of protecting our country.

When I first saw the first commercial for Cheerios sendCheer, my first thought was: “What a great idea!”

I hopped online to see what it was all about. The more I read the more I liked it!

Cheerios® and the USO are partnering to send “Cheer” to military families to thank and encourage them for their commitment to our country.  Specially marked boxes of Cheerios cereal will feature “Cheer” postcards, which can be cut out and mailed to military families through a partnership with the USO.  Even more, for each postcard received, Cheerios will donate $1 to the USO to help support programs for military families.  Cheerios has already donated $150,000 and will donate up to an additional $100,000 based upon the number of postcards received by November 30, 2012.

What could be easier?

Buy. Cut. Mail. Support.

Give the linky below a click to learn more about how easy-peasy this is. And if you are on Twitter, you can RSVP for the #sendCheer Twitter Party. During the party we will also share great “giving back” ideas, and give away two (2) $25 Walmart gift cards, two (2) $50 Walmart gift cards, and one (1) $100 gift card to Walmart during the party. (RSVP here)

This post has been compensated as part of a sponsored charitable opportunity for Collective Bias. All thoughts and opinons are my own.

My John Hancock

Do you hear what I hear?

Link to Tempur-Pedic Site

This post is sponsored by Tempur-Pedic, the brand millions of owners trust to deliver their best night’s sleep every night. Enjoy our Buy 2, get 1 free pillow offer now and give the gift of custom comfort to someone you love.

When I walked into the store yesterday I heard it.

Holiday music.

Then I saw it.

Candy canes, red and green M & M’s, twinkly lights….

My instant response? Stress. My blood pressure went up, my head started pounding.

THERE ARE ONLY 50 DAYS LEFT UNTIL CHRISTMAS, Y’ALL!

Ok, stepping back from the ledge and taking a deep breath.

I know that I am not the only one who gets caught up in the stress of the season. I think we all feel it at one point or another during this time of year. Before I go too far over the edge, I thought I would try and find a few little things to help keep me calm and provide some comfort during this crazy season.

1) Coffee. Or tea. (You knew it was coming didn’t you) Making a cuppa-cuppa and slowly savoring it is one of my biggest comforts. Even if it means I have to hide in the bathroom and turn on the faucet so I can’t hear the kids and dog. Even 5 minutes of uninterrupted coffee/tea drinking can make my whole day more bearable.

2) Hiding in the car. Yes, this season is stressful and it is unavoidable that we are all rushing to hither and yon. When you hit the mall and (finally) find a parking spot, turn up your radio and take 5 minutes to sing along with your favorite tunes. Out loud. Lose yourself in the music. I always feel refreshed and ready to take on the mall after that.

3) Bake. Not because you have to, but because you want to. And don’t give it to anyone. During this busy season, you deserve the small comfort of cookies fresh from the oven. Might I suggest hiding them from the rest of the household by placing them in a “Fiber-O’s” cereal box?

4) Try to get a good nights sleep. Those of us with small children may feel as if that is a far off dream…but there are a few things we can do to make the little bit of sleep we DO get more restful. Keep your bedroom cool, quiet and dark. Limit caffeine in the evening. Make sure the pillows you are sleeping on are the right ones for your sleep style. (Side, back or tummy.)

5) Laugh! Loud and often.

Comfort is the perfect gift for everyone on your holiday gift list, so be sure to take advantage of Tempur-Pedic’s Buy 2, get 1 free pillow offer! I was selected for this sponsorship by the Clever Girls Collective.

My John Hancock