Frankly I think your kids..especially the 2 year old...are way too young to enjoy or even REMEMBER a trip to Disney, 6 months from their visit.
MS certainly is unpredictable. But it's not terminal. And there are many many folks who don't have serious disability from it, and rock on for YEARS without anything really major going on. Perhaps you'll be one of them. 2-3 years from now..when the kids are older, you are back to work, your finances are in better shape...Disney will still be there. And it's quite likely you'll be able to go. Maybe you'll need to rent one of the scooters they have available, especially if you go in summer, when it's way hot...or maybe not.
Of course the bigger issue isn't your trips to Disney..it's your sens of impending doom. It's "more impending" for us who have a chronic illness, to be sure...but truth is, life is unpredictable. People get injured...even killed...all the time, and before they've done all they've wanted to do in life! You can't rush experiences, can't rush "living" into your kids. You can just do it with them, day by day.
I think it's fine to focus on every single moment. But you can't begin to pack a lifetime into any one day. All you can do is do the best you can that day, go to bed, wake up in the morning, and do the best you can with THAT day. And pretty soon life will rock on, and you'll be in it -- maybe not in the same way you were before MS -- but you'll be there, playing with your kids, sending them off to high school, dancing at their weddings.
I've had MS for 24 years. Since having MS I've travelled to Canada several times, all throughout the US, to the Philippines in a wheelchair!, to Alaska... This summer I am travelling..by myself..in my wheelchair..by Amtrak train..to Portland, Oregon, half-way across the country from where I live. Do I wish I could do it without the chair? Well of course. But I can't...so I do what I have to do to enjoy my life. So will you.
What do you do for a living? Is there a way that, with adaptations, you can get back to work, if that's what you want to do (and your family needs the $$)?
It seems like a lot of us with MS are what are popularly called "Type A" personalities: folks who like to be in charge, folks who like to have order in our lives, folks who like to make plans and carry them out, folks who won't take "no" for an answer, and for that matter, won't say "no" to things we're asked to do.
and MS is unpredictable. And take control out of our hands. We can plan...but we can't guarantee that we can carry out those plans. And we have to learn to say "no", sometimes. And sometimes, say "no" a lot of the time. And that's hard for us.
It's good that you're working out modifications for your work. I would think that indeed having your own classroom on a regular basis, where you know where things are, where you can set it up to suit your needs, and change things around when you want to or need to -- would be very helpful for you to be as productive as possible. I'm sure the traveling around put a huge strain on you..I know it did on me. I still do a bit of it, but on a very limited basis. And it's good that you're talking with folks at your local MS chapter. I hope they'll continue to be helpful to you and your family.
I am sorry you are having such a hard time with this. This is a really good thread. I am so glad you posted this. I can so relate. I am feeling pretty much the same way you are feeling. I know uppitycats has given us many really good reasons for thinking rationally about this disease but I find myself struggling like you. Feelings are feelings and we can't necessarily control them. You are early in your dx as am I. And I find myself struggling with how to deal with and think about this disease and how it relates to me. I was determined to not let it become my identity and yet here it is and it is definitely part of my identity. I struggle constantly with how much I should be thinking about MS. I would love to talk to you more about this. I would like to invite you to e-mail me if you are intersted in discussing this more. Just click on my name and you will see my address. No pressure, only if you want.
I am thinking of you and your struggles. Keep us posted. I am really interested and I care.
Love and prayers,