Change of Plans

I know it’s been awhile. A lot has happened. For those of you who follow my blog and for those of you who pop in every once in awhile here is a simple but long update:

Canceled Plans:
Last summer I began talking about a cruise my family was going to take. We were going to go on Royal Caribbean Cruise Line, we had booked accessible rooms, I had booked scooter rentals, I had spoken with American Airlines about special needs issues on the plane, everything was rolling on normally…but I was nervous. I kept wondering if we were taking on too much. Taking on too much with this vacation- to put it simply, Mom has lost the ability to walk. As we got closer and closer to the cruise departure day, departure day being next Friday June 7, I kept having this small voice inside wondering if it was too much…I would then quiet the voice by rationalizing my way out of it…then the voice would re-emerge…and I would quiet it again. But in the midst of this I was praying. Praying that if we weren’t supposed to go on this cruise it would be revealed to us and without that we would just keep moving ahead.

Last Saturday that decision was made. Our Grandpa (Papa) fell in the middle of the night in his house, broke his hip and to have a partial hip replacement. His doctor said he could not go on the cruise. This then set off a sort of chain reaction where Mom did not want to go, Dad could not go if Mom was staying behind and then for Husband, Sister K and me to still go did not seem right. It seemed like a different vacation and it would be sad to go thinking of all of us not together. I also could not stop thinking, we are supposed to cancel. We are being told we need to cancel. It’s too much. Obviously too much for Papa but silently too much for Mom.

I am not in any way saying this happened on purpose, but I do believe it gave us an answer we had all been fighting out of our heads for awhile – We are not supposed to go on the cruise. Luckily our travel agent had convinced us to get travel insurance. I am in the process of gathering invoices, payments, etc but we will submit them and be able to get our money back.

But the lesson in all of this and Mom’s MS has been very clear to me- I can no longer plan ahead a year in advance. No longer assume Mom will remain the exact same. A year ago Mom had just gotten out of the hospital and was going into a rehab facility. Our goal at that point was to get her back to walking on her old 4 wheeled walker ‘Pinky’ from the standard walker she was using. A year later our goal is simply to get her walking.

Understanding While Not Understanding MS
Seeing that part of MS has been difficult to me- difficult because part of me believes she could try harder and walk because people tell us all the time of stories of this happening. The other part of me does not know if that is how this works and not walking is just another step. Regardless it is difficult to see the added stress this has added to Dad. It worries me in many ways. The amount of effort being exerted, the lack of sleep to help Mom up multiple times in the night, the nonstop nature of his days- not even ending when he sleeps. It’s difficult.

Process Overload
As you can see it’s been a lot. A lot I am processing and this is the first time I am writing it all out. The cruise cancellation is very fresh..less than a week to be exact. The reality of not going mixed with the reality of the unpredictable nature and path of MS is all slowly coming into place.

A Quick Life Update on Me

  • Husband graduated with his MBA, was offered a job and we are moving to a new city- still in the same state, about 3 hours from home instead of the 1.5 I enjoy now. Sister K will continue to live here so this will be adjustment for us.
  • I recently got a job offer in our new city and am going to be the new Public Relations Manager for a nonprofit organization. I start in three weeks and I am very excited! Knowing how difficult job searching is and having gone through the difficulties of it every other time I have searched for jobs before, I feel incredibly fortunate and blessed.
  • Also Husband and I adopted a 6 year old cat named Chloe. She will probably make an appearance on here at some point- we are pretty obsessed with her ūüôā

I thank you for continuing to read as I sort through Mom’s MS.

Have you ever had any vacations canceled? Do you have any thoughts on the path of MS? How have you ever all of a sudden had a big reminder that life really is day to day, especially with MS? 

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This morning I woke up to 10 emails between Mom and Sister K that I was included on beginning at approximately 11:00 last night and ending at 11:30. I was laughing as I tried to decipher how the conversation had gone, the path it had taken and the¬†change in subject¬†over the course of the emails. The silly, pointless, unintelligent conversation. Husband thinks¬†my family¬†can do this like no one else…I am not sure if he means that in a good way or bad way when he says it..

But I have to commend Sister K here. She has a way of sending emails full of spunk, energy and happiness to get Mom out of a funk. She makes them silly and simple and repeatedly calls all of us best friends.

Since my family is going on a cruise next summer we have decided we are going to have “Cruisemas” this year for Christmas. Everyone is thinking of cruise related gifts to buy each other. Sister K is obsessed with buying the “best friends” matching tote bags. That is how the email chain began- selecting monograms, colors, fonts, and then slowly evolving to a bunch of nonsense. We still haven’t reached a decision and we have had pointless emails about this all day. Someone reading these emails might question our intelligence.

The point though is how important these emails are to us. It is impossible for us to be together all day and impossible for us to talk to each other all day. We know Mom is at home the majority of the day without much activity because of the limitations of her MS. These emails are important for her. They lift up her spirits, they make her laugh and roll her eyes at her ridiculous daughters. But they make her feel a part of something fun, every day. Replying all…all together.

One of the luxuries of the current world we live in is all of the options we have for communication. Phone calls, texting, emails, facebook, twitter, blogs, the list goes on. With Mom’s MS and the distance between us, these different methods are very helpful and important for us to¬†use.¬†Sister K and I will use any means necessary to bring a smile to Mom’s face and to make her feel a little happier at times. It may seem basic but it is so important. The art of communication can be the most powerful tool in helping to bring a little happiness to someone’s life- no matter how silly the communication may be.

How do you use the tools of communication to keep in touch with loved ones? Do you enjoy taking a break from real life and acting silly with loved ones? If you had to select a monogram would you pick your first name or initials?