Not impressed...just back

[mcnuss]

My parents live in Florida so my DD8 is spoiled rotten, having been to Disney 6 times. The first time she was only about 18 months old and it did not matter that she maybe rode 3 rides - it was all about the experience. She LOVED the characters and most especially the Castle. She has always been (still is) a lover of Cinderella. When we went back about a year later, the Castle was all done up as the birthday cake. I personally thought it looked like someone had dumped Pepto Bismol on it but she was ENCHANTED. She fell asleep during the night-time parade and woke up as were leaving. She got all upset that she did not get a piece of "Cinderella's birthday cake".

Bottom line is that she does not really remember these trips, but I do. She had fun at the time, and the point was not to make memories, but to live in the moment.

 

[opsomyo]

In my family vacations are a frivoulous waste of money. Unless you have your mortgage, cars, & everything else paid off with $30,000 in the bank, you can't afford to go! I personaly feel, you never know what will happen (ie, perfectly healthy 16 month old diagnosed with cancer & a neurological disorder that affects only 15-30 a year). Taking my DD5 on a cruise about made my mother loose her mind! How could we afford such a thing? My answer, I put it on my credit card. I thought she was going to flip!

We don't own a house, which I only mind in the summer when I want a yard for my kids. I stay home with the kids so we live on my DH income alone. We were blessed when CBS ran a story on my daughter & people were so touched, they sent donations for her care. I worked most of the stuff out w the ins. co after that so the money just sits there. I will have to home school her so that will be an on going expence. We travel around the midwest taking her to DR.'s etc. The poor child, I give her a steroid injection every other day, she is in Speach therapy , Physical, & developmental therapy. She gets somthing similar to a transfusion monthly. She even has to take something to help her sleep, after 1 1/2 yrs of waking up every hour or so. (part of the illness) She feels yucky most of the time & has extreme hypertension so if it is too hot outside she has to stay in These are just a dent of what she goes through. I spend all my time ordering stock( meds, needles, syringes, etc.) taking her to appointments & therapies, fighting the ins. co etc.

My family doesn't seem to get what my life consists of. When I said I was taking DD5 (not the sick one) on a cruise they felt I must be STEALING money from the little one.
I told my DH yesterday I am tired of waiting to do things. I am tired of life passing us by. He says we can't go to Disney till we buy a house next year. I say then we won't be able to afford it. I want to take my kids to Disney. We have been doing a lot of fun things this year, a first, but I know it would be an unbelievable experience for them. What if my little one is too sick to go in a couple years? We are going to start chemo again soon &.............. well it won't be fun. I think we all deserve some fun. It is so nice to hear all of you supporting the decision to take your kids when you can. This is the first time in our lives we could even think of it. I would have to use some of the benefit money but there would be ALOT left. I don't want to spend it all on medical bills. I also don't want anyone who donated think we were terrible or stealing or anything to take them on such trips....................
I don't know. Some help please?

 

[pagemaker]

From what you have told us, I think you are doing a wonderful job.

It's only natural to want to give your kids the best that life has to offer. We all have these "grand plans" when we start a life together. The five year plan, the ten year plan, first money in the bank, then a house, then kids. Unfortunately, however, life throws us a curve ball. For some of us it only ends the inning, but for others the game will never be same again. We don't know why it happens, but it does.

People donate to causes not only to help others feel better, but to help themselves feel better, too. If you feel guilty about increasing the quality of life for your family based upon the donations, may I offer this suggestion?:

I would suggest you see 2 people (and perhaps you have already). The first being a financial planner who will ensure that the donations will work financially for your family and your daughter will have the medical care she needs (or, hopefully, not need) for years to come. The second one is a neutral party who is both knowledgable and emotionally detached from your every day life. A social worker, or therapist for example. Sometimes we are sucked into a vacuum of guilt and indecisiveness without realizing it. It's helpful to have a fresh point of view, opinion, and support.

Taking these steps will hopefully ease some of the guilt you have, as well as provide you with an answer when loved ones ask about your financial capabilities.

I hope this helps and WDW sees you and family all in good health!

Deb

 

[peg2001]

opsomyo,

My heart goes out to you and your family. I can only imagine the struggles you have gone through with your sick little one. Please, do NOT feel guilty for taking a vacation with just DD5. You both needed time away and your older DD needed to feel special. I am sure that she often has to put her needs behind those of her little sis. It occurs to me that her situation is probably why she found many of the club activities "too silly." Her life has been so serious!

As for the monetary donations, people donated to help your family. It is up to you how to best spend that money and it would seem that people certainly believe that a family vacation for a sick child is worthwhile as we donate to Make A Wish Foundation!!

I agree that it may be worthwhile for you to seek an external soure of support. . .whether a support group for parents of ill children, a minister, or someone similar. You should certainly not feel guilty for trying to include some FUN in your family's life.

I wish the best for you and yours.
Peg

 

[BeanoC]

I got similar feedback from some family members: "You can't afford to go to Florida every year"! or "Don't be so dumb - put that money in the bank". Poor, clueless souls! My dad said that I would regret it later, having spent all that money on a vacation.
Gee - what do you think the chances are of me saying, 10 years from now, "Boy, I sure wish I hadn't taken my family on those wonderful trips. I hate having all these great memories"

Funny, I don't even recall asking for their opinions! LOL

We leave in less than 3 months for our 2nd Disney cruise and 3rd consecutive year in WDW. Can't wait!



Carpe Diem.



'Beano'

 

[chrisn]

I had the same experience with the Kids Club on our Disney Cruise. My 4 1/2 year old DS did not really like it. Yes he would go but we would get paged and he was just like "whatever". I also had the opportunity on occasion to observe and I was not impressed either.

We cruised on RCCL's Voyager of the Seas the following week and what a difference a week makes. That same child I could not drag out of RCCL's Kids Club Program. He loved it! I had to drag him out. It was the first thing he wanted to do every day. The counselors are superior, the activities are superior and the whole club is wonderfully structured. DCL can definitely take some pointers from RCCL. Their kids program rocks!

I too say live for today. You never never know what tomorrow will bring. Cherish your loved ones and build happy memories with your sweet babies. I could have done so many things with the money I've spent at Disney over the past years but I don't regret one trip, one meal, one souvenir, or one moment. Witnessing the joy in my children's eyes will forever be instilled in my heart and those precious memories are worth every hard earned penny. As a matter of fact, They are priceless.

 

[mcnuss]

opsomyo-- Two years ago my DH's parents died suddenly within 3 weeks of each other. I think they must have somehow been related to your family bc they never seemed to do anything to get pleasure from their lives and they always belittled our financial choices. My m-i-l was a nice woman, but she worried about every dime. She took care of her mother for 3 years and when that great lady passed away, there was a significant inheritance. Finally, we thought, my mil would do something fun. But no, she had to worry incessantly about tomorrow. She never did anything she said she "wished" she could do. And then at the age of 65, she had a stroke, was disabled for a year, then passed on. Her husband followed her 3 weeks later. Moral of the story - do it now. Just to make the point, we took some of the money we then inherited and went on a fabulous ski trip in their "honor".

No one is suggesting that you put yourself in the poor house, but you can certainly do a Disney trip economically and have just as much fun as someone who spends a fortune. How can anyone possibly begrudge you & your children the pleasure of some stress-less time together? That would be too mean. Go for it, you all deserve it.

Last but not least -- chrisn -- could it be possible that your little one enjoyed his RCCL club more bc he had become acclimated to being away from you more? I have not heard that many good stories about their kids programs and for that reason picked DCL. Of course, every kid and every cruise is different!

 

[chrisn]

No, my son is at day care 9 hours a day 5 days a week as I am a working mom. It wasn't that he was freaked out to be away from me, it was just that the club did not thrill him at all and neither did the counselors. The only thing he liked was the treehouse slide and that got old after a while. I talked with quite a few cruisers also before our trip that had done both the Disney cruise and one on RCCL's Eagle Class Mega ships and everyone I spoke with also liked RCCL's kids programming better. The counselors alone were far superior and the activities were funner for the children and more varied. There were also several counselors that my son really took to and formed bonds with. It was a completely 100% different experience. I would have never believed it had I not seen it with my own eyes. I did do a report and also a comparison post of the two cruises after returning. If you'd like you can probably pull them up using my username chrisn. Don't get me wrong, we loved both the Disney Magic and Voyager of the Seas and would not hesitate to sail on both ships again so it's not like I'm throwing a plug in for RCCL, it's just that I found RCCL's kids clubs and programming far superior to Disney's and that in itself was a shock to the system. I truly believe Disney can do a far better job here but everything else was top of the line.

 

[Buschfan]

We also thought that RCCL's sister line Celebrity had far superior counselors than Disney. My youngest son had much more individual attention and was very content being in Celebrity's program. We felt that Disney's counselors used the paging system more for their benefit. It seemed like Disney's counselors were too overworked and had a much larger ratio of children to give children any individual attention. The Celebrity counselors made up for the small children's playroom that was on our ship in January. My kids were even welcomed by a counselor at a special table set up before they even boarded. Disney treated our kids as just a 'number'.

 

[mmouse37]

buschfan....just noticed your avatar.....yesterday we got "lost" inside the hosptiality room at the A-B Brewery in Merrimack, NH. Took the tour and then had our comp. 2 samples. Very nice!!!!

MJ

 

[Ginny]

Opsomyo,

I have such deep respect for the quality of life that you and DH have chosen for both your children. You are handling so many challenges on a daily basis with grace and common sense. I wholeheartedly support your decision to take your DD on the cruise and only wish that it had been the "home run" you had envisioned. But, I am sure that your DD will always remember her "special" trip with Mom.

So often, the child that is not ill is lost to the wave of medications, procedures and appointments for their siblings and it does impact them. Plus, sometimes they feel guilty for not being the one who is sick. To give her that special attention and a respite for both of you was a gift.

It is easy for observers, including our families, to make judgements about our life choices. And, no matter how loving their guidance, sometimes you just have to ignore it and make your own choices based on your life experiences. But, I think Pagemaker had some wonderful suggestions for your situation and they might just take some pressure off of you and DH. I will keep you and your family in my thoughts and prayers.

 

[leanne2255]

My family and I have gone to WDW every year for the past 20 years. There were times that we probably should not have gone as the money wasn't really there, but we used credit cards. I have seen so many of my parents friends "wait" until they retire to start enjoying themselves and taking vacations, only for their lives to be cut short by a sudden illness. I'm not waiting. My kids are growing up too fast as it is, and we all have the wonderful memories of our trips to WDW. I will have no regrets when I am at retirement age that I didn't do more when I was younger.

 

[opsomyo]

It is so nice to hear all of you say such wonderful things. My family has been through alot & I tend to run on auto pilot. I have been realizing how much emotion I have bulit up since I started this post. Everyday I read all of your suggestions & words of encouragement & tears come to my eyes. Yesterday I had my husband read this whole thread, we both enjoyed all the wisdom you've shared.
Pagemaker, the suggstions given by you are a good idea. I have been avoiding investing it because I have been afraid to move it out of her account. I think it is time to figure out where it needs to go. I am also going to see if I can find a support group. There is an Opsoclonus Myoclonus support network on line but they don't have a message board or anything.

Peg2001 I never thought about why she didn't enjoy the club. I think you are proboly right, it was just too silly for such a serious little girl. That just tears me apart. My kids have lost so much of their innocence, their childhood. I have a five year old that worrys about how much sodium is in her sister's food. She thinks she isn't going to grow up. I have told her over & over she is not going to die, but part of her hangs on to that fear. She knows about cancer & chemo. She tells everyone her sister has to get a shot every other day(currently, it was everyday for about a year) & she holds her hand to make her feel better.

They are both unbelievable kids. I would give them the clothes off my back if it made them happy. I have considered getting a job just for fun money but I am afraid I will miss ordering her ACTH, or an appointment or something too important to miss. Anyway, thanks to all of your support I am going to take my kids to WDW!!! Yeah! Everybody can just talk about us & say how irresponsible we are, I don't care! If they want a hefty dose of responsiblity, they can follow me around for the day. I am know looking for advice on doing disney on a budget, any suggestions? If we drive, will it be a pain with parking & everything? Also, when is the "off season" the best time to go? I want nice weather but not hot (hypertension -little one).
Thank's again, you are all really great people, I have read & reread all of your replies. It is so nice to hear such kind words. If anyone is interested, I have some pics & info on a website about my daughter & her illness. www.geocities.com/opsomyo

 

[CamColt]

Wow! I Just checked out that website. I cant imagine what you you and your family have been through. DS had minor surgery when he was 5 weeks old and I know what that did to me. I cant imagine getting that awful news you got and then having to go through everything. You and your DH must be very strong people.
Now more than ever I feel you all deserve a vacation together(and I still think the trip with just you and DD#1 was a great idea too!). I think as soon as you think shes ok to go, then by all means, go!
BTW, she is such a cutie!
Prayers & Pixie Dust to you all!!!

 

[Ginny]

Opsomyo -

Thank you for sharing your website! I just finished visiting it and it really tells a very special story. I am so glad that you plan to take Pagemaker's advice - I hope you will find the advice of professionals helpful for both you and your family.

When you begin to plan your vacation, I think the best info I have received has been right here on the DIS. Start at Pete's home page:
http://www.wdwinfo.com and go from there. There are discussion boards for everything including a new discount page and a Budget Board. When we planned our first WDW trip in '99, the Resorts, Theme Parks and Trip Reports essentially planned the trip.

We take our WDW/DCL trips from Oct to Feb as we are not fans of heat or long lines. In January, DH gave DD (7) and me a "girls trip" to WDW using special WDW military resort and ticket discounts. The weather was perfect for me - lovely and sunny (we were in shorts) but not HOT!!

We had a great time even though I got a terrible case of strep throat............DD was a great sport and a terrific nurse. We used the Urgent Care Clinic right off property (got directions from Yacht Club Guest Services). The clinic staff were very nice and efficient. If I remember correctly, they are an affiliate of the University Medical System so there is a direct link. Just an FYI.

Take care

 

[opsomyo]

I really did it! I don't know if it is the right decision but last night I was looking at the DCL & all 4 of us could do the 4 days land/3 sea for not much more than DD & I did the 3 day cruise. We are going Nov. 17-24! Yikes! I went through all the dates & that was the cheapest week. I decided we would do the cruise again. I fugured we would give it another try. I think after 4 days in Disney I would be more relaxed to sit at the Mickey pool & watch them swim. Hopefully they will be worn out & my husband & I can enjoy relaxing. I think we will have a better time this time since the cruise part is more for DH & I. Well, little one needs her shot, so GG. Waiting for a sign from the Lord saying it was the right decision...........................

 

[mcnuss]

I don't think I'm the "sign" you are looking for but:

GOOD FOR YOU!

 

[CamColt]

LOL, Mcnuss! I was thinking the same thing.
Im so glad you are all going back opsomyo, and I hope things go a little better this time. Im sure since you know more about it and what to expect this time you will probably enjoy it much more. Plus, having 2 parents there might make it easier as you will be able to get some alone time if you guys switch off with the kids at times. You deserve a fun, yet relaxing vacation and Im sure you will get it!
Happy planning!