A reason to keep fighting

[azgirl]

So I just got a call from my newly engaged niece and her fiance asking me to officiate their wedding over Christmas in my backyard! This would be the second wedding I've performed - the first was for my best friends who married after 27 years together when AZ finally legalized same sex marriage.

I'm honored, happy to do it, but who knows what shape I'll be in 5 months from now? So far my speech is unaffected. Think I'll write the ceremony now and have a back up ready to perform it.

Side note - kind of crazy my family and friends look to me this way. I've always been a bit on the wild side, although ALS has done a fine job of slowing me down.

Going to do my best to stay strong now.

 

[Atsugi]

Fantastic news!

 

[mich5]

great news! maybe you could write out the ceremony and then record it - that way if you lose some of the projection of your voice, its still 'you' doing the ceremony.

 

[GregK]

That's really cool!

 

[Green Queen]

Gotta love a wedding! A real honour to be ask to fill such an important role.
I hear you regarding your concerns though...you have already received some great advice, I'm sure you'll receive more.
God bless, and may progression be sloooooow...
Janelle x

 

[bigmark1954]

Sounds like a good thing to look forward too optimistically. It is really important for US to have goals and things to look forward to.
It seems silly, but one of my fears is becoming disinterested in the things that give me goals and aspirations.

 

[Green Queen]

It seems silly, but one of my fears is becoming disinterested in the things that give me goals and aspirations.

No Mark, not silly, realistic. Whether we like it or not the goal posts keep being moved, sometimes daily.
For me, my interest in things changes, albeit only slightly, depending on the ability in my hand. So I grabbed the goal posts and chucked them out.
I still have goals, but the goal line is set by me. You know?
If you still love the thrill of a 225mile bike trip, I think you have firmly got those goals and aspirations in a firm grip.
God bless, Janelle x

 

[MaxEidswick]

>I still have goals, but the goal line is set by me. You know?

we'll made it to the 4th july party

 

[azgirl]

Sounds like a good thing to look forward too optimistically. It is really important for US to have goals and things to look forward to.
It seems silly, but one of my fears is becoming disinterested in the things that give me goals and aspirations.

I know just what you mean, Mark. Some days I just want this ride to be over, but having something to look forward to, a goal, gives me new energy. It's still a roller coaster but at least there are still some ups.

 

[notBrad]

Sounds like a good thing to look forward too optimistically. It is really important for US to have goals and things to look forward to.
It seems silly, but one of my fears is becoming disinterested in the things that give me goals and aspirations.

No Mark, not silly, realistic. Whether we like it or not the goal posts keep being moved, sometimes daily.
For me, my interest in things changes, albeit only slightly, depending on the ability in my hand. So I grabbed the goal posts and chucked them out.
I still have goals, but the goal line is set by me. You know?
If you still love the thrill of a 225mile bike trip, I think you have firmly got those goals and aspirations in a firm grip.
God bless, Janelle x

I agree with Janelle. I also find a side benefit that I get an extra charge whenever I start thinking about/doing something involving plans and/or goals for the future.

 

[affected]

What a super thing to look forward to!

You could consider recording yourself reading what you write if do you start to feel your voice is changing at all. That way you could still do the ceremony and make sure the important words are clear and still from you?

 

[Green Queen]

Would it be allowed for the congregation to say parts of it with you? I get words all buggered up when they have lots of syllables, particularly if there's two or three in a row.
Good luck with finding the right balance.
God bless, Janelle x

 

[azgirl]

http://getmeaplatter.blogspot.com/2015/07/its-your-day.html

Here's a blog my niece wrote about upcoming wedding and the sadness ALS brings our family.

 

[Nikki J]

Kay I have no idea why the link does not show in your post. I did not edit it in the mod queue and I can see it when I open your post as if to edit it. Try again?

 

[4tloml]

Kay, what a joyful event for all of you! Congratulations to your niece and to you for this great honor.

I also find a side benefit that I get an extra charge whenever I start thinking about/doing something involving plans and/or goals for the future.​

My husband really gets charged up planning our travel. We're doing a trip a month (although June's was pretty much ALL month). He's even planning trips during trips. We booked DC when we were in So Cal.