Is it December Yet?? Cancelled with a Heavy Heart!

[lovethattink]

It was a wonderful camp where all different "diagnosis" could come together and experience things that these kiddos don't usually get to do.

I hope you get to go to your camp......they are life changing!!

Sounds great! I hope we are picked to go.

After 10pm tonight he will be 21 days seizure free!! That's the longest stretch we've gone in the 2 years he's been having seizures!! The last night of SWW was his last one.

 

[DizNee Luver]

DAY FIVE Continued:

Music time again & Shy was center stage......our little groupie!

Michayla and Elizabeth dancing.

Shyann would go up to any guy & put her hands up to be picked up.......this guy (not sure of the name), held & walked around with her a number of different times during the week. He was loving it!

Addy with her posse.

Anthony during the music.

Addy posing for the camera!

One of the best pics of Shyann I've seen.....beautiful!

About this time, I got the news that we lost yet another family member (this makes 4 now). My ex SIL was found this morning dead. She was 42 and passed away from a "cardiac event". I was devistated by the news......my neice (23) and nephew (19) had just started reconnecting with their mom. She had chosen drugs over her family many years ago (which is why, she was an ex) but had cleaned up over the last few years. My heart is just breaking for those kids and everything's falling on my neice to make all the arrangements. No 23 yr old should have to take on that. Anyways, it made me withdraw for most of the day. I was in a great place, I had a number of people come and talk with me & help me get through this. While I was getting the news....my kids were taking their first rides on a horse. I'm so glad Mike was there to capture it.

Addy on the horse.

Shyann on the horse.

Michayla on the horse......I did get to see some of her ride. She kept rocking on it to make it go.

Kids wanted to go back to the fishing hole, so Mike took them down. Here's Anthony.

And Addy.

The evening brought the talent show for the special needs campers. The twins were known for always dancing.....so we brought the music from Madagascar "I like to move it, move it". The camp loved it!!

As we watched the rest of the show, the girls wound down.

This was a long day....we didn't get home until almost 11pm and had just one more half day of camp to go.

 

[DizNee Luver]

Sounds great! I hope we are picked to go.

After 10pm tonight he will be 21 days seizure free!! That's the longest stretch we've gone in the 2 years he's been having seizures!! The last night of SWW was his last one.

I hope you get picked too!!! How soon do you find out??

That's wonderful!!! I hope it continues!! How old is he?? I have another friend that has an 18 yr old that has epilepsy. You really have to be flexible when it comes to plans. They've had a rough year with many, MANY hospital stays as they try to get on top of the seizures.

 

[DizNee Luver]

DAY SIX:

The day no one wanted to get here. Today would be a short day. Breakfast, announcements.....pack up stuff while the buddies/campers did scrapbooks, meet up for one more music session.....then goodbyes.

Anthony while waiting for the last session to begin.

Michayla also waiting.

Shyann found her way to HER spot at center stage.

Addy was a bit tired this morning.

Anthony with his buddy James.

Hi Shy!!

Michayla and her buddy Elizabeth.

Addy waiting patiently for the music to begin.

Shyann went down the line of people giving high-fives!

Shyann giving Michayla a high five.

Shy got invited up on the stage to dance with Dan.

Dan is one of the board members and disabled....but he got up on his feet to dance with Shy......a very touching moment!!!

Emotions are starting to flow.......

The 3 buddies our kids had.....they were all WONDERFUL!!!

Michayla relaxing on a chair.

Thought this was funny.....at first glance, you'd think her finger was up her nose.....but its not and she sure is happy!!

Anthony with one of his friends made this week.

A few more pics to come!

 

[lovethattink]

I hope you get picked too!!! How soon do you find out??

That's wonderful!!! I hope it continues!! How old is he?? I have another friend that has an 18 yr old that has epilepsy. You really have to be flexible when it comes to plans. They've had a rough year with many, MANY hospital stays as they try to get on top of the seizures.

This year I haven't seen anything about applying yet. It's free to campers, not sure how they decide who can and cannot go. I know several people in our group last year who got to go and a couple who did not. We couldn't figure out a rhyme for the reason?


Looks like everyone had such a wonderful time! So many smiles, and so engaged in the activities!

 

[Bertnie20]

That's what we're looking at as well. We have to do 2 rooms and we'd like to be together.......doing 2 suites would be overkill (and expensive).

Would you all not fit in 1 suite?? From what I saw you have 8 people, suites sleep 6 with 2 bathrooms, the twins could share beds with the others or you could ask for two pack and plays?? Would be a lot cheaper than two rooms

 

[DizNee Luver]

DAY SIX Continued:

So after saying good bye to other families in the pavilion, we headed out to the sign to take a few group pics.

Anthony with his buddy James.

Michayla with her buddy Elizabeth.

Shyann with her buddy Tony.

The kids with their buddies (Addy didn't officially have a buddy, but she did help out Bailey with her campers)

Mike & I joining all the kids & buddies.

Addy & Bailey.

Saying good bye is so hard!

We gave the kids our contact info, so we could stay in touch. We loaded up in the van & headed home. By the time we got home.....all the kiddos had fallen asleep....ok, not Michayla....but she won't sleep unless she's medicated.....but the other 3 were exhausted & drained.

This camp is unbelievable. They accept all different diagnosis from autism to spina bifida, epilepsy to downs syndrome....they are one of very few camps that welcome kids with brittle bone disease. This camp is free to all families. The staff & board members are ALL volunteers. There are NO paid staffers. This camp is faith based.....not religion/church based. The kitchen staff will cater to food allergies and the food all week was amazing. Not your typical "camp" food.

My kids got to experience for the first time: laser tag, horseback riding, hot air balloon ride, jet ski, jet boat, and tubing. Shyann got to try bread, french toast, buns, pancakes and cookies for the first time.

AMAZING camp that we will go back to year after year!!

 

[DizNee Luver]

Would you all not fit in 1 suite?? From what I saw you have 8 people, suites sleep 6 with 2 bathrooms, the twins could share beds with the others or you could ask for two pack and plays?? Would be a lot cheaper than two rooms

The twins are 5 and tall, so they wouldn't fit in a play & pack anymore. I don't think they'd allow 8 of us in the suite. I believe 6 is the max.

 

[kaoden39]

What a wonderful experience!! That was great on so many levels for the family. I got tears at the farewells. I think this is something that I would take advantage of every chance I got. Too bad about the messy cabin mates and missing out on the whole experience.

 

[lovethattink]

What a wonderful experience!! That was great on so many levels for the family. I got tears at the farewells.

Me too! You can tell lives were touched and changed!

 

[DizNee Luver]

What a wonderful experience!! That was great on so many levels for the family. I got tears at the farewells. I think this is something that I would take advantage of every chance I got. Too bad about the messy cabin mates and missing out on the whole experience.

Me too! You can tell lives were touched and changed!

It was emotional that last morning.......Addy is super sensitive anyways....so this was brutally hard on her. She basically cried herself to sleep in the van. Anthony was emotional as well. He settled down & fell asleep about half way home. The twins don't really "get it".....so they got in the car and that was about it for them. I know the teens that buddied up with them were also very emotional......it was truly life changing!!

I think we'll try to get a trailer for next time so we can stay for the week. Sharing living quarter with other families is not my "thing". We had 2 other families, but the first family left first thing Tues. morning (the new family moved in Mon. night). The family that left had been struggling with the weather (it was cold & wet) but the new family really upset the dynamics we had going with them. They also had a service dog that the new family didn't like having in the cabin with them. So the other family decided to leave. Sad! After a long day, or during nap time......it would be nice to have your privacy & quietl and not have to worry about others.

 

[smile4stamps]

What a wonderful experince Laurie! Thanks for sharing! I'm also sorry that you had issues with the cabin and cabin-mates. Making that trek every day had to be tiring as well!

 

[lovethattink]

It was emotional that last morning.......Addy is super sensitive anyways....so this was brutally hard on her. She basically cried herself to sleep in the van. Anthony was emotional as well. He settled down & fell asleep about half way home. The twins don't really "get it".....so they got in the car and that was about it for them. I know the teens that buddied up with them were also very emotional......it was truly life changing!!

I think we'll try to get a trailer for next time so we can stay for the week. Sharing living quarter with other families is not my "thing". We had 2 other families, but the first family left first thing Tues. morning (the new family moved in Mon. night). The family that left had been struggling with the weather (it was cold & wet) but the new family really upset the dynamics we had going with them. They also had a service dog that the new family didn't like having in the cabin with them. So the other family decided to leave. Sad! After a long day, or during nap time......it would be nice to have your privacy & quietl and not have to worry about others.

Sorry the cabin mates didn't work out. A camper would be nice!

I didn't think about service dogs. My son is so scared to death of dogs, he'd freak. We've had to leave the monorail or attractions at Disney because he had panic attacks over dogs. Playgrounds are a disaster with him. At least with homeschooling we can go while people are at work or school so there's less chance of a dog there.

 

[DizNee Luver]

What a wonderful experince Laurie! Thanks for sharing! I'm also sorry that you had issues with the cabin and cabin-mates. Making that trek every day had to be tiring as well!

Hi Paula!! It's all part of trying to live with others in an enclosed space.....lol The drive back & forth added time to our day but was worth it to actually get some sleep. I didn't sleep at all the first 2 nights.

Sorry the cabin mates didn't work out. A camper would be nice!

I didn't think about service dogs. My son is so scared to death of dogs, he'd freak. We've had to leave the monorail or attractions at Disney because he had panic attacks over dogs. Playgrounds are a disaster with him. At least with homeschooling we can go while people are at work or school so there's less chance of a dog there.

Oh that's too bad he has that fear. That would be very hard to deal with since dogs are everywhere. They have service dogs that actually can sense seizures but it doesnt' sound like that would work for your family. Hopefully if you get into that camp, no ones has one!!

 

[GoofySon'sMom]

What an amazing place! Andrew wants to work with special needs kids ... I wish we had some place like that where he could volunteer! I really enjoyed all of the pictures! So wonderful that the kids got to do so many things!

 

[DizNee Luver]

What an amazing place! Andrew wants to work with special needs kids ... I wish we had some place like that where he could volunteer! I really enjoyed all of the pictures! So wonderful that the kids got to do so many things!

It was truly amazing!!! I imagine there has got to be camps like this around you....it's just finding them! I found out about this camp from one of the California Diva's that came up last summer. The camp is an hour drive from me!!

 

[miss.potatohead]

Laurie, I've read all of your trip reports and followed along with this one so far. I think I'm a first time poster, so apologies for not chiming in earlier! Your family is amazing, so so beautiful. What has made me so happy has been the following the development of the twins <3 they are adorable. I cannot wait until you and your family make it to Florida at the end of this year, you truly deserve it!

I'm considering a program called Camp America once I finish university in a year and a bit, where you go to America (obviously) and work in a summer camp for a few months, and after seeing the joy that your family experienced from the camp you attended, I'm even more excited to apply.

 

[DizNee Luver]

Laurie, I've read all of your trip reports and followed along with this one so far. I think I'm a first time poster, so apologies for not chiming in earlier! Your family is amazing, so so beautiful. What has made me so happy has been the following the development of the twins <3 they are adorable. I cannot wait until you and your family make it to Florida at the end of this year, you truly deserve it!

I'm considering a program called Camp America once I finish university in a year and a bit, where you go to America (obviously) and work in a summer camp for a few months, and after seeing the joy that your family experienced from the camp you attended, I'm even more excited to apply.

Wow, thank you and welcome!!!

They've really grown over the last few years & are making wonderful strides forward. We're looking forward to this trip, but will feel much better once we've booked our flights & have this package paid off!!

What a wonderful program!! I've never heard of it.....but if you can get into one of the special needs camps.....it will change your life!!!

 

[Bertnie20]

The twins are 5 and tall, so they wouldn't fit in a play & pack anymore. I don't think they'd allow 8 of us in the suite. I believe 6 is the max.

Not sure I would honestly call and see, it would be the same if a family of 5 in a sleeps 4 type thing

 

[lovethattink]

Not sure I would honestly call and see, it would be the same if a family of 5 in a sleeps 4 type thing

I doubt they'd let it fly. But calling doesn't hurt. I know for DVC if you rent a room on points you can fit more in a room, but if you reserve a DVC room as a paying guest you can't.