I don’t typically travel this much.
I did a bit of travelling (over longer periods of time) in my late teens/early twenties.
Once i had kids travelling was focused mostly on visiting my husbands family in New Brunswick and of course a trip to Disney Florida for the kids.
For my 40th, I travelled through the south west of the US.
And once I was diagnosed with PPMS (primary progressive multiple sclerosis), I wrote a bucket list and started travelling more frequently. Paris, Greece, Cape Breton, Montreal, California, Arizona, and recently Costa Rica.
I am very fortunate to be able to take these trips. I wouldn’t say lucky because nobody gave me these trips. I’ve been saving money on a weekly basis since I was 16. Saving specifically for trips. Of course I also save for others things like life’s necessities. And I just don’t spend more then that. I never borrow. That’s it, that’s my strategy. I picked travel over many other things. It’s not luck, we simply do what needs to be done in order to take the path we dream of. And sometimes it works out (I’m travelling), and sometimes things don’t work out how you planned (I’m sick).
Ideally me and my husband would of travelled in our retirement age, but unfortunately I may not be doing much by the time Dean reaches his retirement. Or in 2-3 years for that matter. I wasn’t sure what to do. I have a progressive disease, there’s no cure, I have all this saved money and an unknown future. Then one day we were having Chinese and I got a fortune cookie that said “it’s now or never”. I knew then what I had to do. So yes we’ve been travelling lots, and I will continue to do so for as long as I can.

• 

Getting on and off a plane is slightly more complicated for me. I take my wheelchair to the doors of the plane, then I make my way onto the plane with the help of the crew while my husband removes the batteries from the wheelchair and then folds it for the baggage people. He then has to grab our carry on’s and batteries and make his way onto the plane as well. All the while we are dealing with children.
Upon landing I have to wait until everyone is off to get help and wait for my wheelchair.

This time around one of our carry on’s got forgotten. It turned out to be my daughter’s. We were all seated in different areas, I was way in the back* behind a group of students who were going on some mission of sorts. They were asked to stay behind to take pictures or something which meant I was mixed up with this group and the crew forgot I was there, way in the back.

I managed to make my way pass the group of students who clearly didn’t care I was struggling, all the while carrying my very heavy backpack of camera gear. A crew member finally sees me and comes to help where he brings me to my husband who is waiting for me on a special elevator. My first thought of course is “where are the children?” And he tells me they are at the bottom of the stairs. This remains my concern until we are reunited. Never once noticing Dean has no luggage with him. By the time we do realize the missing luggage we are in the airport, waiting in the customs line. Panic and stress sets in.

We never did find the luggage. Audrey was very upset, my son was starving, and I was trying to soothe them both until frustration set in.
I understand why Audrey was upset, so was I. And I understood that Julien was tired and starving, so was I. But there’s only so many times you can try to comfort someone before you realize it’s pointless, there was nothing else I could say to ease their worries. This moment would pass and we would be ok. We would eat, we would rest, and we would either find the luggage or replace the contents. Until then, they would be hungry, tired, and frustrated.
This was a good lesson for Audrey I think. It was, in the end, just a bag filled with clothes. We were all together, and we were all safe. That’s what matters

I felt very lethargic, very tired, and at one point incredibly sad.

I had to fill out insurance papers today, related to my long term disability. It’s very hard not to think of my situation when asked to fill out paperwork on it.

‘Made me think’ it did.

It feels like not so long ago I entered N/A to so many medical forms. But now they are filled with medicines, doctors, appointment, symptoms, difficulties, frequencies, the  speed of events, and expected result…. the pages, all the lines, the margins were filled.

Fucking MS. It sucks to think about. It just …. fucking sucks.

Tomorrow I hope I will think of it less.

And less the next day, and less after that…

I’ll be ok. 

But today …

I have been getting up. I have been pushing myself forward. I have been trying.
I’ve been going through paleo cookbooks and prepping healthy meals.
I have been doing laundry and watching Netflix.

I’ve joined Apple Music and I’ve been listening to lots of oldies
(God speed you black empereur, massive attack, zeppelin, the doors, and more.)
while playing with photographs

 

I have been …. distracted.

I got to see a long time friend and her family. And they embrace my family with open arms. The highlight of my trip by far.
I took photographs:

I saw Christmas lights.
I got to take a stroll inside a canyon. (YAY! Wheelchair accessible trails)
I saw mountains and hills,
and at the bottom of a trail I watched my family move on without me.

We had sun and clouds, warm days and cold nights.
It went by so fast it is already but a glimpse in my mind.
I left wishing I had more time to see more.

Physically and emotionally.
I’ve been writing a lot but I haven’t been posting.
I’ve written about my disease, about being a mother,
about 2019, my dreams and fears for 2020.
About the loneliness and the struggle of being sick.
About my strengths, my accomplishments and my travels.
I’ve been good and bad.
Trying to sort it all out has left me in a daze, unable to cry or laugh.
Confined to contentment.

I want to soar
…