I just can't get excited.

[daughtersrus]

We leave for DD's Make A Wish trip to Hawaii in about a week and I just can't seem to get excited about it.

We had a big party this weekend and everyone was asking about the upcoming trip. I tried really hard to sound excited but a good friend of mine saw right through it.

I'm not sure if it's because of the stress of trying to make sure that I pack everything that we need or what. DD just turned 16yo a few days ago and birthdays and holidays are always so hard.

This trip just seems like this it's another reminder of the horrible disease that she has. If it wasn't for the disease, we wouldn't be going to Hawaii.

A few family members also made comments about how it's not fair that we get a trip just because DD is disabled.

Maybe it's just a combination of all of this.

I hope that I get out of this funk before we land so that we can enjoy the trip. I don't want DH or any of our DDs to pick up on my lack of excitement.


Sorry! Just needed to vent.

 

[Breezy_Carol]

A few family members also made comments about how it's not fair that we get a trip just because DD is disabled.

I don't know your entire story, which is fine, but this just touched me. The people that said those things are just rude. Would they want to walk in your shoes?

I hope you can go on the trip and see things through your daughters eyes and enjoy every experience that you have together.

 

[Robinrs]

Every birthday, every day should be a celebration.

Later you'll kick yourself for not enjoying the days you DO have.

No one is promised tomorrow. Those of us who have the ability to KNOW that the time is limited know that we must cherish every second.

You are blessed.

All trips cause stress, the planning is a nuisance, that's a given. Yours has another aspect that makes your stress much more normal.

Just be happy now. Each day is a gift. Hold on, you will not be able to retrieve them later.

Take it from one who knows....

 

[Darsa]

A few family members also made comments about how it's not fair that we get a trip just because DD is disabled.

Are you SERIOUS??? Wow, I can NOT imagine such heartless uncaring NASTY family members!

I can totally understand your feelings towards the trip; I can imagine I would feel the same way in your shoes. I hope that you're able to have a wonderful time and create lots of great memories for your family, especially your daughter!

May I ask, what is your DD's disability? Just out of curiosity, nothing more.

I had a coworker whose disabled child was granted a family trip to Disney a few years ago; it was immediately after my family had come back from Disney, and I gave him all kinds of tips and info. He came back with a shirt for my DD, and LOTS of thanks for all the help; he said he would've been lost without it. Is there anyone like that that you can speak with; someone who's been there and knows all the cool stuff to see/do, that might help get you excited about it?

Hugs to you, I know how hard it is.

 

[kirstenb1]

I know what you mean and can relate on a much smaller scale. Our younger dd has autism (not severe) and last year's WDW trip was a disaster. I spent the next year planning and dreading this year's trip. The trip went great!!

Try to relax. I hope all your planning pays off, I'm sure it will!!

 

[kamik86]

A few family members also made comments about how it's not fair that we get a trip just because DD is disabled.

Maybe I'm just snotty but my reply would have been soemthing like "Your right its not fair I would much rather not have a trip and know DD was healthy."

 

[LuvOrlando]

Oh no, I'm so sorry you feel this way. I'm sure it is a combination of all those things going on. Whoever made the comment about you guys only going because of your DD was being very cruel because I'm sure you would rather if you could change things. People can be such a mess sometimes, it's a shame you had to hear that

Try to have everything set the day before you leave so the stress of rushing and wondering if you've forgotten anything is off your shoulders. I'd like to suggest you make a 'Before I go list'. Whenever we travel I keep one taped to my counter-top for about a week. I love lists, when I cross things off they vanish from my worries.

The point of Make a Wish is to help families collect some smiles. Your family needs smiles, you need smiles. All I can suggest is to put those negative thoughts as far out of reach as you can for the time being and just live in the moment. Right here and now you have a wonderful adventure in front of you all, I say grab it and don't let anyone take these moments away from you.

 

[MaggieMoo'sMom]

People can say the dumbest things... We have a family member who got to go to the Harry Potter Park a day early and meet a majority of the movie cast, along with 7 other families from Make a Wish. He has Down's Syndrome and has been battling luekemia for the last 4 years. I cannot imagine anyone giving anything but good tidings to them after all they have been through. Morons, I guess...

Here's a hug from me. I know it will be a lovely trip. Don't be too hard on yourself for having ups and downs. I'm sure you've been through a ton, and you are only human. I would have a nice long talk with my friend who can tell something's wrong. Have a good cry...that can be very healing sometimes... Best wishes to you!

 

[ugadog99]

I can't say I'm surprised about some of your family members' comments. I don't know what's wrong with people these days. Where did common decency go?

As others have said, trip planning and packing is difficult even in the best of situations. I would imagine that with a disabled child it would be even more stressful. Just try to get through it and focus on the precious memories your family will be making once you finally arrive in Hawaii.

I wish you all the best and an absolutely fabulous trip!

 

[M&N]

I agree with what has been said. You have a lot on you. Mom's have a way of putting their feelings on hold---you have a right to feel this way. Now that you have vented here, I hope you can view this trip from the eyes of your DD and savor every memory.

 

[Robinrs]

Maybe I'm just snotty but my reply would have been soemthing like "Your right its not fair I would much rather not have a trip and know DD was healthy."

We all have the retort for the stupid remark after the fact. The problem with any retort is you're allowing that person to know that they hurt you, which is their only purpose.

Ignore them. Miserable people want you to be miserable with them. Nothing kills a miserable people more than ignoring their misery.

God bless.

 

[Pooh_Friend#1]

That is horrible what some of your family members said. I hope you can enjoy this time with your DD.

 

[a1tinkfans]

We leave for DD's Make A Wish trip to Hawaii in about a week and I just can't seem to get excited about it.

We had a big party this weekend and everyone was asking about the upcoming trip. I tried really hard to sound excited but a good friend of mine saw right through it.

I'm not sure if it's because of the stress of trying to make sure that I pack everything that we need or what. DD just turned 16yo a few days ago and birthdays and holidays are always so hard.

This trip just seems like this it's another reminder of the horrible disease that she has. If it wasn't for the disease, we wouldn't be going to Hawaii.

A few family members also made comments about how it's not fair that we get a trip just because DD is disabled.

Maybe it's just a combination of all of this.

I hope that I get out of this funk before we land so that we can enjoy the trip. I don't want DH or any of our DDs to pick up on my lack of excitement.


Sorry! Just needed to vent.

Thats why we're all here, to let people Vent.
Callous, insensitive remarks are just that, Insensitive and thoughtless.

You are Blessed to be able to go on this trip, so Enjoy, Relax, Make Memories and LAUGH till it hurts! Sometimes "stress" just puts us in a Funk, it too shall pass and you will soon be spending quality time with your loving family. Wishing you a Most Magical Special Trip!

 

[DeluxePrincess]

A few family members also made comments about how it's not fair that we get a trip just because DD is disabled.

How insensitive. I'm sure you would gladly trade places with them! Vent away. I can't imagine what you've been through. Go and enjoy yourself in Hawaii. I'm sure your DD is excited.

 

[daughtersrus]

Thanks everyone!

DD has a very rare disease called Alpha Mannosidosis. She is one of about 200 people in the world with this diagnosis. It has caused her a lot of medical problems (cataracts, hearing loss, bone problems, seizures...) She can not sit or stand. She is dependent on adults for all of her care including diapering, feeding, clothing, brushing her teeth and hair... She has severe cognitive delays. She is not able to talk and in the 13 years of searching have not found any assistive tech devices that she can use. She is very small for her age (she's 16yo and is wearing a size 6-8 in little girl clothes).

I think that this trip coming so close to her birthday and to the party that we had for our other DD, makes her disability so obvious. One of my nieces is the same age as DD and we got to meet her new boyfriend~ something that we'll never do with our DD.

The family member has been cruel to us/DD in the past so it really didn't surprise me but that doesn't mean that it didn't hurt. The comments were made about 10 months ago and the sting is still there. I have told other family members about what was said and they know that we would gladly trade a trip for a DD that could be normal. I hope that the other family members tell him how unacceptable his comments were. Needless to say, I don't think that we'll be bringing him or his family back any souvenirs.

Thanks again!

 

[DeluxePrincess]

A big hug to you, daughtersrus. Stay strong!

 

[danalee]

jealous people can say mean things, and I am sure thats what made your family member say that, dumb & stupid yes and jealous..no doubt!

I am willing to bet that your DD is over the moon excited about going to Hawaii! Rightfully so it is a warm, beautiful, breathtaking place. No matter the reason you are going, enjoy it and drink it in, there is no other place like it in the world.
Stress can be a pain in the butt sometimes and do crazy stuff to us, try not to let it, remember DD happiness, i'll bet she cant wait to get there!

Maybe go buy a travel book on where ever it is in Hawaii you are going and read up on all the things you will be seeing and things you can do while there!

Have a blessed, safe and happy trip

 

[acmmommymouse]

just big hugs to you is all I can say. Have a safe trip and make some wonderful memories.

 

[KAMLEM]

jealous people can say mean things

That's it in a nutshell, he's just jealous that you are going on a trip. It makes me so angry to hear people say things like this. Just focus on the trip and the special memories that your family will be making. Have a great time!

 

[KAMLEM]

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