Come to the Dark Side...4 Weekends of Fun with the Force(Updated 11/12)

[lovethattink]

Thanks! I hope it does too. Just need to get in and get that started. Just trying to eat a little bit better now until they tell me what I should and shouldn't do.

I know you're doing everything you can to help.

 

[khaleesi]

Thanks. Up until yesterday, he had a nice stretch of some pretty good days! Made a big difference for all of us.

I'll have to search for that parody. Too funny.

Last Wednesday it worked well. However, we stayed at Disney Sun to Tues for Columbus Day, and it did not go nearly as well to say the least. However, there were some awesome cm who helped make things a little easier. They know JJ from our frequent visits and were aware of how bad things got this summer. They were happy to see him doing so much better.

I just noticed your tagline about brain lesions. I can relate. It's amazing how many things a brain lesion can affect. I was fascinated the first time the neurologist sat down and showed us the MRI of his quarter sized lesion, and explained how it affected all parts of the brain. But seeing the effects in action are heartbreaking and far from fascinating.

I think it's amazing that the CMs know you guys and are so willing to make things easier. That's the kind of thing that just warms my heart.

I was diagnosed with MS in August. One day I was perfectly fine and went on a 5K with some friends and had an absolutely amazing day. The next day I woke up dizzy and as the day went on I wound up with really bad double vision. I wound up getting several MRIs, including a three-hour one that nearly made me lose my mind. The brain lesions combined with my symptoms were the giveaway for the diagnosis.

The brain lesions quote is from a Big Bang Theory episode a couple weeks ago. If you aren't familiar with the show, the character who made the comment is a neurobiologist. I joke that the show follows me around to get source material, and that quote cemented it for me. Keeping a sense of humor about the situation makes it easier to pick myself back up after I've fallen apart (which happens a little more often than I'd like). I think it's much easier to have that sense of humor as myself going through it than it would be if I was watching a loved one do it. My dad is NOT amused by my jokes (and I'm 41 years old!), so I try to keep them to myself when he's around.

What an awesome gift!!! Disney people are the BEST people!!!

 

[lovethattink]

I think it's amazing that the CMs know you guys and are so willing to make things easier. That's the kind of thing that just warms my heart.

I was diagnosed with MS in August. One day I was perfectly fine and went on a 5K with some friends and had an absolutely amazing day. The next day I woke up dizzy and as the day went on I wound up with really bad double vision. I wound up getting several MRIs, including a three-hour one that nearly made me lose my mind. The brain lesions combined with my symptoms were the giveaway for the diagnosis.

The brain lesions quote is from a Big Bang Theory episode a couple weeks ago. If you aren't familiar with the show, the character who made the comment is a neurobiologist. I joke that the show follows me around to get source material, and that quote cemented it for me. Keeping a sense of humor about the situation makes it easier to pick myself back up after I've fallen apart (which happens a little more often than I'd like). I think it's much easier to have that sense of humor as myself going through it than it would be if I was watching a loved one do it. My dad is NOT amused by my jokes (and I'm 41 years old!), so I try to keep them to myself when he's around.

What an awesome gift!!! Disney people are the BEST people!!!

I wish you didn't have to deal with MS. Your sense of humor about it sounds great. A 3 hours MRI, and I take it you were awake the whole time?! (JJ has been put to sleep for each of his. He had one long one in the beginning to make sure it wasn't cancerous. Thankfully it turned out to be a pocket of extra neurons.) I'm sorry there are those days where you fall apart. Are you in a good support group? Not sure if you know Belle1997. She is in some great support groups for MS and she is very inspirational herself. She does solo trips from Canada where she then meets up with (I think the Disney Divas)in Disneyland. She isn't inspiration just because of the solo trips, she's inspirational on how she lives her life, her attitude, how much she helps others, etc.

That's exactly how JJ's was. Fine one day, then BAM, everything changed. He has never complained or asked why me. He just rolls with it and keeps adjusting to a new normal. Which is ironic that he can accept those constant changes, but other changes and new things he meets with great resistance (to say the least).

Disney people are awesome!

 

[lovethattink]

Day 9

We slept in this day. Dh did NOT get in line for any celebrity fast passes. The weather forcast had today as hot and humid day. JJ woke up on his own and was ready to go to SWW. He couldn’t get there soon enough. We were greeted there by two security tables instead of one at the side entrance. We assumed this meant they were expecting high crowd levels?

​

We got into the park and he was too hot. This time instead of heading to One Man’s Dream, we headed to the Animation building. I had this brilliant idea that we could do drawings like we’ve seen on mommy2mrb’s TR. This was JJ’s idea of drawing.

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We were the last three people to enter the animation class. We were seated right up front. I think all the other rows had tables, but I don’t remember. This was our first time doing this. I know we didn’t have a table and had a board on our laps. There was a vote for which character to draw. JJ wanted to draw Penelope, but Felix won the vote. He was really frustrated that not everyone in our party voted for Penelope. Then the drawing started. He needed guidance. Dh is good at following directions for drawing so he was helping JJ. But JJ gave up because his picture wasn’t perfect. Now he was a little more frustrated. At this point, I would have been smart to pull him out of the class. Not sure why I didn’t. I think it was because the exit was on the other side and in the back. At the end of the class the artist asked everyone to hold up their pictures.

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The artist coaxed JJ to show his too. Oh the tears and oh how they flowed. He was so embarrassed that his picture was not perfect. I will be honest with you, I could see some resemblance to Felix. But he could not see any. He was so disappointed in himself and taking it very hard.

This happens with school work too. He puts too high of expectations on himself. He thinks he should be able to everything correctly and perfectly the first time. At home, this would be time for an attention break and then focusing on something he can do with relative ease; before going back to learning the new material.

We were almost out the door of the classroom. When JJ refused to move. He put his feet down on his w/c and wouldn’t let the chair be pushed. He got out of the chair and walked down front to the artist. She showed him her picture and explained to him how she went to many classes to learn to draw that well. How every time she had free time she doodled on paper. That it took many years to learn to draw, and she even went to college to learn to draw better. Amidst all his tears, he heard an invitation by the artist to go to her that we didn’t hear. He stopped the cascade of tears and now there was just a stray one every now and then. I put the pictures in my back pack hoping out of sight out of mind.

I don’t remember where we were heading next. I think the Great Movie Ride since JJ loves that attraction. Wherever we were heading, we saw Kai standing at an umbrella where the fab 4 meet. For those that don’t know, Kai saved the day for us in December at the Santa Claus M&G at Epcot. JJ was having sensory issues from the cold air. He hated the feeling of cold on his face. He had his hat pulled over his face the whole time in line until Kai started talking to him about Star Wars. So once again we we’re seeing Kai with JJ not quite his usual chipper self.

He asked JJ what all he’s done so far and who he’s seen. Back in December, they were talking about all the same people they know (Star Wars actors and characters.) He asked if he’s seen Chewbacca. Yes. Asked if he’s seen Chip and Dale. No. He asked JJ if he’d like to see Chip and Dale. JJ perked up, his eyes lit up, and thoughts of his picture and imperfection were stored in the depths of his brain. He said he’d take him over there to meet them. Goofy and Donald came out after about 10 minutes.

​

We were on our way with Kai to see Chip and Dale, but JJ started to see flashing lights. His aura for a seizure. So we stopped in at the Commissary. Gave JJ his med, pulled out the frozen waters, placed them around him and aimed the fan at him. This lasted for a while. Kai said he’d be back and left. Once JJ cooled down he felt better. Kai came back and told us to take our time. Whenever JJ feels better to go there and ask for Jonathan. JJ asked if he could give Kai a hug. He said sure. Afterwards I snapped a picture.

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We waited a little bit longer at the Comissary. We found an out of the way spot to park it. JJ spotted his Ladies Rogue and asked me to go over and say hi to them for him. They told me to tell him to feel better so he can have fun again.

Eventually we made our way over to Chip and Dale. We asked if there was a Jonathan and he said he had been expecting us, and he’s glad we made it.

​

We went back to ABC Comissary to figure out what next. We wanted to call it quits and go back to the room. JJ did not. He promised he felt better. He didn’t want to leave. We said one more thing in the air conditioning then back to the room. He picked Darth’s Mall. He wanted to see if the Angry Bird game was working. It was. DH was wearing his Rancor Maintanence shirt, So he wanted to see the Rancor. But before you could see the Rancor, you had to visit with the characters. Luke and Leia were there.

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Then to the Angry Bird game. JJ was so excited to play this. He couldn’t wait. He was flapping and jumping. The man showed him how to shoot the ball. JJ could not catch on at all. So the man helped him. Dh and I gave it a try. I came close. Dh got one in the hole. That did it. JJ was over the edge in frustration, filled with “I can’t do anything right.” The man offered a suggestion. We sell these shooters here in the tent. You could buy one and practice. “ok.” YEAH, so guess what our big purchase of the day was. Yep, the shooter which comes complete with bright yellow balls and targets.

​

One good thing about our purchase. It did make it easier to get JJ back to the resort. We wouldn’t let him open it here in the park. Could you imagine the mayhem he could cause with that?

On our way out the parks, we cut through the stores right after Beauty and the Beast. In one of the stores, there was a pin trading board.

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It was sometime between noon and 1. We called it a day. We had evening reservations for dinner at 50’sPTC at 8:30. Would we get back? Or was our day over?


After a really long nap and some play time with his new toy, by 7pm he was feeling better. The Hoopla would start at 8pm and we should be able to catch most of it, if not all of it, before the dinner reservation.

Dh decided he wanted to tape the Hoopla off the stage instead of off the idol screen. His video camera has a great zoom lens. So he knew even from a distance he could get a good shot. So he headed over that direction. He saw Disney’s official photographer, Ron, and figured the open spot behind him should be perfect. He put his cell phone in his pocket and began taping once the show started.

JJ didn’t like the rain. He wanted to go inside. It was almost time for our reservation so we headed over to 50’sPTC. I knew they wouldn’t seat us without our whole party, but I wasn’t even allowed to check in. This worried JJ. His daddy wasn’t answering his cell phone to texts. I assured him the phone was somewhere safe and Daddy was out there with his video camera at the Hoopla.

He ran out to go find his daddy. I stopped him and brought him back into the restaurant. He insisted he had to go find his daddy. In the sea of people by the stage there was no way he’d find him. Since I wouldn’t let him help, the tears began to flow. I took him outside the restaurant and told him he’d have to look in the crowd from here WITH me. Of course, he couldn’t see him. So he started to worry that something bad happened to him. No words of reassurance were going to change his thinking. The show ended and dh did not magically appear with us. This brought on more worry. Eventually, he made his way to us and JJ saw he was fine.

I gave our name and they seated us right away in the back of the restaurant at a TV. Dh pulled out his cell phone and gave it to JJ to play video games to help him self-regulate. He wasn’t thinking. Where were we eating? Do they allow cell phones there? They don’t even know what they are? So yeah, the waitress comes and asked if we have eaten here before. JJ says it’s his favorite restaurant. So she says to hand that thing over. Yep, you got it. The TEARS. This wasn’t just a fountain, this was a waterfall. I didn’t know if we were staying or leaving? Dh took him out. I ordered and said we might have to somehow get it boxed up if we can’t stay. The server kept apologizing. I told her not to worry and not to blame herself at all. I said it’s been an off day for him.

When she came back with the drinks, JJ’s milk was in a special glow cup. I thanked her, but told her really she didn’t have to do that. It’s not her fault at all. She said she’s worked there for years and she is really good at reading people’s reactions. She had no idea he’d turn from all smiles to tears so quickly. Again, I said not to worry about it, and when he comes back we won’t say anything about cell phones. He came back and noticed the surprise right away. He asked me why I ordered it. I told him I didn’t that it was something special from the server. He thanked her very nicely.

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Through all of this chaos, the three tables of us in that back room became quick friends. Another family was there for anything and everything Star Wars. They are astromech droid builders. This means they build those huge R2-D2 units like these.

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The other couple was there was in a bit of a fog. Their loved one had an accident on a bus at the AKL and was helicoptered to the hospital. They had just returned from visiting him and caught dinner there. When our server caught word of this, she had their meals taken care of.

JJ got cold. The only thing I had with me, was my Ahsoka sweatshirt. He was more than happy to wear it. And he wore it proudly. Telling everyone in the room that his friend Ashley designed it.

This was the first time ever eating at 50’sPTC that we got to actually see the dessert menu.

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The park was deserted on the way out. Fantasmic was going on.

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In retrospect, we shouldn’t have even ventured out this day with JJ. But we did. And in the end, he once again declared it the best day ever.

 

[pwdebbie]

"Best day ever" has got to be music to your ears. I love that JJ can be so positive in spite of the hard things that come his way. We grownups can learn a lot from kids like him.

 

[lovethattink]

"Best day ever" has got to be music to your ears. I love that JJ can be so positive in spite of the hard things that come his way. We grownups can learn a lot from kids like him.

It sure is. And yes.

Deb, you would have been proud of him yesterday. Our next door neighbor had a birthday party complete with a giant princess bouncy house. He wasn't invited. He could hear the girls squealing and having fun and it made him so jealous and angry to not be over there. At first he went into full blown meltdown that lasted almost two hours. Then out of the blue he calmed down and said he knows exactly how Joseph felt in the pit. He's been studying the story of Joseph this month. He was able to relate the lessons of the entire story to his feelings and use it to feel better. He made it through the next two hours of hearing the party without any problem.

 

[pwdebbie]

It sure is. And yes.

Deb, you would have been proud of him yesterday. Our next door neighbor had a birthday party complete with a giant princess bouncy house. He wasn't invited. He could hear the girls squealing and having fun and it made him so jealous and angry to not be over there. At first he went into full blown meltdown that lasted almost two hours. Then out of the blue he calmed down and said he knows exactly how Joseph felt in the pit. He's been studying the story of Joseph this month. He was able to relate the lessons of the entire story to his feelings and use it to feel better. He made it through the next two hours of hearing the party without any problem.

That is awesome! I want to tell this to my dd who is getting more and more into children's ministry. She will love it!

 

[ladylyons]

How awesome you guys got t see Kai again and how he helped JJ see some friends he hadn't seen yet. The magic of Disney once again.

That's great that JJ was able to bounce back even though he was having a hard day. Love that it was still the best day ever!!

 

[lovethattink]

That is awesome! I want to tell this to my dd who is getting more and more into children's ministry. She will love it!

It was a welcomed relief. I was exhausted after his 2 hour+ meltdown from the worst day ever. I'm so glad he was able to pull something from his lessons and use it to help his situation.

How awesome you guys got t see Kai again and how he helped JJ see some friends he hadn't seen yet. The magic of Disney once again.

That's great that JJ was able to bounce back even though he was having a hard day. Love that it was still the best day ever!!

Huge pixie dust!

Perhaps hearing about the person in the bus accident showed him that his day could have been worse?

 

[mommy2mrb]

what a day of ups and downs, sorry he got so frustrated with different events, but so great he worked through them. love that Kai once again helped make his day "the best one ever"! he looks so happy in all the M&G photos!

 

[lovethattink]

what a day of ups and downs, sorry he got so frustrated with different events, but so great he worked through them. love that Kai once again helped make his day "the best one ever"! he looks so happy in all the M&G photos!

Yes, despite his ups and downs, in the end, it all worked out. I can see his eyesjust weren't exactly himself in the pictures.

 

[blessedmom4]

Just popped by to say hi and see JJ's gorgeous smiling face. Tell him his long haired girls say hi.

 

[annmarieda]

A DISer recognized JJ right away and said something! It was lilpixiebabe101. We had never met. I'm so glad she said something. She was with our mutual friend annmarieda!! Now we know Ann and spent some time with her and Zoe last year at MNSSHP. But I wouldn't have recognized Ann at all. She was sporting some sunglasses looking like a movie star. I'm so glad they stopped to saw hello when they saw JJ!

Pictures to come.

I am not sure how I walked right by you! I would recognize you and your family anywhere!! (except apparently when I am oblivious and walk right by)

It was nice to see you. I was sure that we caught you off guard though... and I felt bad about that. It was not out intention to startle you.

Aww, thanks. I didn't think you were a nut. I'm so glad you said something.

I am glad you are happy that she said something.... I was not sure if it was a good thing or not....


I am glad to hear that the DAS seems to have worked ok for you. I am not sure that we will get one for Zoe in January... just not sure she a. qualifies and b. truly needs it.

I am sorry you had to go through the day of tears with JJ. We have had those days too.... and the animation class was a trigger for Zoe as well. The pressure kids can place on themselves.

 

[ladylyons]

Huge pixie dust!

Perhaps hearing about the person in the bus accident showed him that his day could have been worse?

Maybe. But whatever it was I'm glad it helped bring a bad day to a great day.

 

[WDWRids]

Hello! Long time since I've been on the boards......so thrilled to read that JJs tics have gotten better! Loved reading the last few SWW updates. JJ is fantastic as a storm trooper! The pics are great and had me laughing out loud. Anything new with the theater? Hated you had a bad experience at animation. Felt bad for the poor waitress at 50s! But appears she did great recovering and helped turn those tears into smiles!

Been in Cleveland this week and headed home today. They are expecting snow this week so I am excited about going home to warmer weather! Is it your family or your husbands in Ohio? Went to Presti's bakery in little Italy last night...Yumm!

Been a difficult month.... My grandfather could not bounce back from his last illness and passed away October 2nd. So in 6 months- I've lost two grandparents and husband had his back surgery. I think it all took its toll on me and I've been forced to slow down. Doing better now and starting to exercise again and focus on me for a while. Shane went back to work early Oct and is doing well. It's good for life to get back to normal again.

Ladylions, congrats on your new baby on the way! Take care!

Great news! We are coming back Dec 6th 2015!!! Can't wait!!

Have a fantastic day!

 

[blessedmom4]

Michelle, It was so good to talk to you yesterday, Thanks for calling.

Alyson, I have missed you. Prayers for all you have been going through. I am sure it is warmer here, but is is going to be in the thirties tonight...

 

[WDWRids]

Miss you too! Yea, just heard we will get first frost Sat morn. Oh my, just realized I typed 2015...no no no thats too long! Back in 2014! 14 months away!

 

[ladylyons]

Been a difficult month.... My grandfather could not bounce back from his last illness and passed away October 2nd. So in 6 months- I've lost two grandparents and husband had his back surgery. I think it all took its toll on me and I've been forced to slow down. Doing better now and starting to exercise again and focus on me for a while. Shane went back to work early Oct and is doing well. It's good for life to get back to normal again.

Ladylions, congrats on your new baby on the way! Take care!

Thank you! We are pretty excited and the kids are excited now too since not only have they heard the heart beat but they've also felt the baby kick.

Sorry to hear about your grandparent's. I lost both on my mom's side almost 6 months to the day (10 years ago this year) and it's still hard at times. Glad your husband is doing well and things are getting back to normal.

 

[lovethattink]

Just popped by to say hi and see JJ's gorgeous smiling face. Tell him his long haired girls say hi.

Thanks for stopping by. He can't wait to see his long haired girls again.

After we saw you at GKTW, he said that Lisa got all mature and he didn't, he's still a little boy. I assured him that happens sooner with girls and his time would come a long time from now.

I am not sure how I walked right by you! I would recognize you and your family anywhere!! (except apparently when I am oblivious and walk right by)

It was nice to see you. I was sure that we caught you off guard though... and I felt bad about that. It was not out intention to startle you.




I am glad you are happy that she said something.... I was not sure if it was a good thing or not....


I am glad to hear that the DAS seems to have worked ok for you. I am not sure that we will get one for Zoe in January... just not sure she a. qualifies and b. truly needs it.

I am sorry you had to go through the day of tears with JJ. We have had those days too.... and the animation class was a trigger for Zoe as well. The pressure kids can place on themselves.

I'm very happy you stopped. We were just getting photopass pictures because I had pre-purchased the CD and thought we should stop at every photographer we found, lol. He was the 2nd one. The pictures got good too.

If you keep having to get out of the line to take care of her, you might want to consider it.

I assume she did fine at home with you gone. How is her surgery healing?

Maybe. But whatever it was I'm glad it helped bring a bad day to a great day.

Thanks, me too! I saw the Halloween costumes yesterday on Judy's thread. Their costumes look great! Love the Peter Pan theme. I hope you are feeling better.

Hello! Long time since I've been on the boards......so thrilled to read that JJs tics have gotten better! Loved reading the last few SWW updates. JJ is fantastic as a storm trooper! The pics are great and had me laughing out loud. Anything new with the theater? Hated you had a bad experience at animation. Felt bad for the poor waitress at 50s! But appears she did great recovering and helped turn those tears into smiles!

Been in Cleveland this week and headed home today. They are expecting snow this week so I am excited about going home to warmer weather! Is it your family or your husbands in Ohio? Went to Presti's bakery in little Italy last night...Yumm!

Been a difficult month.... My grandfather could not bounce back from his last illness and passed away October 2nd. So in 6 months- I've lost two grandparents and husband had his back surgery. I think it all took its toll on me and I've been forced to slow down. Doing better now and starting to exercise again and focus on me for a while. Shane went back to work early Oct and is doing well. It's good for life to get back to normal again.

Ladylions, congrats on your new baby on the way! Take care!

Great news! We are coming back Dec 6th 2015!!! Can't wait!!

Have a fantastic day!

Alyson, welcome back from Cleveland. They are from one of the suburbs around Cleveland.

So sorry to hear about your grandfather. Too much loss too quickly. Praying for you and your family as you go through this difficult time.

Glad to hear Shane is doing well.

Woohoo for Dec 2015. Are you going to start a PTR?

JJ is gearing up for another performance. This time he is Steve Stew in Stone Soup the musical. This is the first time he was cast as a person instead of an animal. He was so excited about this. He has a few lines and all the songs are group songs. He has had ticking at all practices. I will probably stay back stage with him the whole time. The first practice it was his hand. Last Thursday it was his both legs.

This is the special needs theater, so there really isn't any pressure put on him by the director, it's all pressure he is putting on himself.

Today they learn the songs, but his voice teacher has been going over them at his lesson, so he already knows all the words. She is the musical director for the play. This should help lower some anxiety.

Today he starts his 2nd OT session of the week. He'll now be going 2 days a week. Hopefully that will help. After yesterday's session, he had trouble in the car and was hyperventilating for the first time in a while. I think he is nervous about today's session because it's going to be a new therapist he doesn't know and has never seen. His therapist only works one day a week there and the rest of the time at their other place in another county. So he'll have one person Wed and another each Thurs.

Michelle, It was so good to talk to you yesterday, Thanks for calling.

Alyson, I have issed you. Prayers for all you have been going through. I am sure it is warmer here, but is is going to be in the thirties tonight...

It was nice to talk to you too.

Miss you too! Yea, just heard we will get first frost Sat morn. Oh my, just realized I typed 2015...no no no thats too long! Back in 2014! 14 months away!

First frost, yuck! My friend had on her fb status yesterday that it was snowing where she was in Ohio. Today we have the coldest temps in ages. It's going to be 75 degrees for the high. Perfect park today, too bad there's so much on tap for today.

Oh good 2014! That sounds much better!!!!!

 

[annmarieda]

I assume she did fine at home with you gone. How is her surgery healing?

She is a trooper. There was a rough couple days. Dh requested the number for the hospital and contemplated taking her... but all in all they both did fine. Not so much fun for me to get a message from dh that he needs the hospitals number while I was all the way across the country....but it turned out fine. She is tube free now, so that is good. More spasms though..but pain is just part of her life...so she deals.