A really sweet thing that my Brother is doing...

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ALS_Daughter

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I just got a call from my Brother, my parents' caretaker. He wants my husband and I to come home and stay overnight with my Dad next month, b/c....He is taking my Mom to Montreal to have a nice dinner, see one of her favorite bands, Rush, and stay in a nice hotel. Of course we are happy to help out with Dad. We are trying to give Mom all of the good experiences she can have while she is still well enough to do so. I'm going to start a fundraiser soon to enable either my brother, me, or both of us to take her on an Alaskan cruise, her life's dream. I hope we can make it happen. :)
 

brooksea

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Daughter,

That is so wonderful! You and your little brother are very giving children.

I know your Mom will enjoy her trip. Rush, saw them in concert once in Atlanta. Excellent. But talking about them makes me feel old. LOL

Your Dad with MS and your Mom with ALS - it has to be tuff.

Let us know how your Mom's adventure pans out!
 

ALS_Daughter

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jimercat said:
Daughter,

That is so wonderful! You and your little brother are very giving children.

I know your Mom will enjoy her trip. Rush, saw them in concert once in Atlanta. Excellent. But talking about them makes me feel old. LOL

Your Dad with MS and your Mom with ALS - it has to be tuff.

Let us know how your Mom's adventure pans out!

Aww, thank you! We just feel like they have given us the world and then some, bent over backwards to give us everything they could, and now it's time to give back. I'm 30, my Brother is 25. We're trying.

I'll definitely post an update, you got it. :)
 

CindyM

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You guys sound like a great family! I'd live to see the look on Mom;s face when you tell her! Cindy
 

quadbliss

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I saw Rush several years ago at an amphitheater in my power chair. Wheelchair seating was on a raised peninsula jutting out toward stage right. I was bobbing my head (the only part of my body I could still move) forward and back to the music. Geddy Lee (bass and lead vocal) came to the edge of the stage, looked me in the eye, matched my grin, and started bobbing his head in the same way. Even though I was a mature adult, because Geddy had been a childhood hero to me, it was a magical moment. I still remember it like it was yesterday.

Sorry to digress, but somehow in my mind, Rush goes together with my disability.

Mike
 

Kaila

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hi daughter

well im new here too
im 16. . . living in Brisbane, my dad was diagnosed with Motor Neurone Disease just a few weeks ago, not long before my birthday actually, i was scared and sad. well its my step dad who was diagnosed as my real father left my mum and i when i was 3, havent heard from him since. it was great to find this place where everyone is so caring and supportive of each other. i was so happy to see how much your brother and yourself are caring for your parents. my parents and my younger brother and sister left last week for a trip around the world, to share with my dad what he wanted to see before he died, i will be joining them in 3 weeks when school finishes. its really scary to see whats happening to dad, he cant talk very well and he always stumbles and falls over. im really scared and dont like talking to my friends about such a depressing topic.

anyway sorry for going on but i just wanted to say ur a really amazing person, someone i would hope to be like. the way you are caring for your family so well, sometimes i feel bad and selfish because i should be more caring.

there IS a silver lining to ever cloud, sometimes its just harder to find.

kaila
 

CindyM

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Hi Kaila. Sorry to hear about your Dad. I am glad you decided to join us and hope you feel comfortable to come back at any time and talk about anything that is on your mind. You sound like a great daughter. If you really weren't helping your family you would not have come here.

As a parent, I can assure you that what Dad wants right now is for you to enjoy your teen years and learn about all that good stuff like who you are and what you want your future to be like. Dad's job is to help you grow up, so the more you act like a regular teen the happier he will be.

Of course you will want to do things for him. There is a lot you can do, too. Make it a habit to spend time with him every day-even if it is only by phone or email. Tell him about your life, what you learned in class, why you like your best friend, anything that comes to mind. It will create happy memories for both of you!

Write more when you feel like it and remember, you can always PM any of us. Cindy
 

Kaila

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thanks

hi everyone

sorry its been a while i firstly was too sad to come back but it helps to know that u r all so supportive of each other

please excuse me im not really good with computers, a bit computer illiterate so im not really sure what im doing but hopefully it works. . .

thanks so much for ur advice cindy and ur support. . . it helps to have people to talk to who know the same sort of thing im going through

well my family just got home from a 6 week holiday round the world so dad could see all the things he wanted to before passing. . . it turned out to be a pretty sucessful one. . . all of us have notice changes in dads movement and speech for the worse, but we r all understanding that its part of the disease

im doing an assignment on MND and ALS for biology. . . suggesting a budget for research and education of the disease so if u have any personal experiences that might help. . . . jusy anything that might have been helpful during this time. . . i hope to carry on this research after leaving school in a month and help to raise money for funding of research and education

thanks once again kaila :)
 

CindyM

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Glad to hear from you, Kaila. Glad to see you are keeping busy- but not leaving school -right? Your Dad will want you to be sucessful, so you will need to graduate! :)
 

Icanmanz

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Kalia, you are such a wonderful soul, and I wish you the best of luck! Am glad to hear that you'll made it back fine after 6 weeks. but sad to hear that your dad's conditin has worsened. That goes with this awful disease. Your dad is a lucky man to have such a caring family! God bless each one of you, and Good Luck, dear!

Irma
 

Kaila

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thank you

thanks for your replies cindy and irma:)

cindy - no, im not planning on leaving school. . . it was never really my intention as i hope to be a teacher one day and want to go to university next year and i know dad will want me to be sucessful so i will stay, there is only a month left so i think its worth staying thanks once again cindy for ur care and concern

irma - you're too kind, i understand my fathers condition better now as i have been researching it for my assignment at school, im glad to say im not afraid of the future anymore and know that we all have to focus on the present and take it step by step. . . life wasnt meant to be a walk in the park i think of it as more of a roller coaster, a ride full of excitement and fear but one i will never forget.


thank you both so much, its hard to talk to friends about dad mostly because i dont want to be treated different do coming here and talking to u has reall helped me i cant even express my thanks

kaila:mrgreen:
 
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