Watch out Boston….Here I come

We “descend” on Boston at 9 am next Wednesday

When I started planning this trip in January, I had hoped to document and share any tools or tricks that I had learned to make traveling with MS easier, but then…..well you know, LIFE HAPPENED….. The last couple of months have been filled with so many life changing events, that I could barely make it through the present let alone write about it.

The week after I purchased our Airfare to Boston, I started investigating whether or not to rent a car while we were there.  The AAA  guide book I ordered says, and I quote….

Ralph Waldo Emerson once observed, “We say the cows laid out Boston.  Well, there are worse surveyors.”  Emerson, of course, never had to drive through the city.  Downtown- occupying a peninsula surrounded by the Charles River, Boston Inner Harbor and Fort Point Channel- is a challenging place for residents, let alone visitors, to negotiate by vehicle.  Furthermore, Boston drivers are legendary for their aggressiveness.

This kind of makes me wonder what AAA says about Chicago drivers.  (I am tempted to see if my picture appears somewhere as an example of aggressive.)

Ok, So we are NOT RENTING A CAR!!!.

Public Transportation or

A couple of people suggested using for rides instead of relying on the MBTA.  “It’s just like taking a cab” they said.  (One person even offered that we would have less of a chance of sitting in CUM STAINS with Uber) EWWWWW!!!  I guess I should have mentioned that I have also never taken a cab before.  I grew up beyond the sticks- literally in the middle of nowhere.  Public transportation did not exist.  Remember the post about riding a horse on a subway?

I have to learn everything I can about everything, so after spending almost an hour on their website reading all the FAQ’s, I entered a “test” route to check rates.  The rate was almost $30.00!  I can drive this same distance in my car in 20 minutes and it only costs me $25.00 to fill my whole tank.  I was shocked!  People actually do this?!?!….ahhh but I guess you would have to pay for parking etc if you didn’t?!?!?   I am hoping the rates for Uber are cheaper in Boston, but just in case….

We decided to stay close to the Boston Convention Center, (the actual purpose of our trip).  I began to investigate hotels within walking distance of the convention center.  OUCH, just ouch!   A ” simple” google search “hotels near the Boston Convention Center” produced  1,060,000 results (0.87 seconds).  Of course I had to investigate them ALL…., Expedia, Orbitz,, kayak to name a few.  I couldn’t find anything for less than $200.00 a night.   After a couple days of this, I stumbled on

What is

For those of you not familiar with the explanation on wikipedia is here: What is Airbnb?, they also have pages and pages of FAQ’s on their website At first glance, I was a little intimidated by the thought of staying in a strangers house or apartment, so I just bookmarked the site to go back to .  I looked at hotels in other cities for cheaper prices, but they included an hour or more time on the train to and from Boston…… Ok staying at a strangers house it is……  Well a couple of different stranger’s houses, but I will have to write more about that later.

I have given both my kids names, addresses, contact information etc in case I get “lost”.  Can you think of anything I am forgetting?  Do you think Boston will leave an impression on me, or that I will leave an impression on Boston?










If I told you that I don’t worry about my daughter, you would probably think that I was a monster, but I don’t.  I honestly, don’t “Worry” about her at all.  Now LOVE her?. That is a completely different story!  Of Course I do!!!


Have you ever gone to a wedding and felt like YOU were the guest of honor?  (Your own wedding doesn’t count)  I’m still not sure HOW she pulled it off, but I think everyone who was there that day will agree that it was an honor to be included in HER DAY.

I think I have to try to “stick to the facts” when I talk about Thing One’s Wedding.   My usual words like Fuck, Shit, and Damn have no place in this story, …..yet WONDERFUL, MAGICAL, FAIRYTALE, and PERFECT, really don’t scratch the surface.  To say I am Proud would be an understatement. Honored seems hollow, however, MY HEART IS FULL!!!

Friday, March 9, 2018

Einstein and I arrived at Thing One, and her fiancee’s house at 10 am.  The hotel and venue were two hours away, and we told Thing One that we would be her “beck and call people” for the day.  “Just tell us what you need kiddo, and it’s done.”


She handed me the schedule for the next day to look over, and the book that would be used to hold the officiant’s notes for the ceremony, asking me to remove the sticker from the cover.  Truly, trying to get that damn sticker off with fake nails was the most difficult thing I had to do. I called the hotel, and asked if we could check in early because we were so ahead of schedule.   The coordinator said, “Yes we have yours and your daughter’s room’s ready, Come on in.”


Because so many people were coming from out of town, Thing One had reserved a block of 25 rooms for her guests.  She didn’t tell us that she had used hotel points to upgrade us to a suite.  Believe it or not, our suite was not even half the size of the kids suite!!!

The guys made quick work of unloading the cars, and then the four of us went to lunch at the hotel’s restaurant while we waited for the venue to open so we could start decorating.

We ate lunch, drove the mile to the venue, and began carrying the totes full of decorations inside.  When we opened the doors to the banquet room, everything froze. I looked at my daughter’s face as she saw that The Banquet hall had not even begun cleaning up from prior evenings event.  It only took ONEtear rolling down my daughter’s cheek for me to launch into Lieutenant mode.

Wait a minute Grace, I thought you said EVERYTHING was perfect?

No, I am not a masochist, but I am a “fixer”!!!!

FINALLY, something that I COULD DO to help!!!!!!

crew rehearsal

My daughter has her own army

The entire bridal party came to help clean and decorate.  Within a couple hours, the hall was mostly decorated and we were able to begin the wedding rehearsal.  I’ve never lead a rehearsal before, so it did take a couple of “run-throughs” before I got that part right.  But all in all, it was ALOT of fun.  We all left the venue and headed to a local pizza place for dinner.  Hours of good food and company!

When the evening was over, Einstein and I were sitting in our room talking about how proud we were of Thing One and her fiancee.  They are both incredibly strong, intelligent, and outgoing people.  They have both put in a lot of hard work to achieve their dreams, and the love and respect they share for each other can be felt for miles.  As we were getting ready to sleep…. Thing One texted me….

“Mommy, open your door?”

I looked at the clock, sure enough…… 11 O’ clock on the dot!!!!!

I know that I said I was going to stick to the facts and leave emotions out of this story, but here’s the thing…  For as long as I can remember all of the  “heartfelt, tearful, world changing” conversations that occur between THING ONE and I have always begun at 11 pm.  Her choice, not mine.  She had told me a couple days prior to this that she had a letter she wanted me to read at the rehearsal dinner.  I gave her 10,000 excuses why we didn’t need to do THAT, and thought I had managed to avoid it.  kids

But here they were at 11 O Clock, using the word, “Mommy”…..







For all you sadists out there…..

Yes I read the letter.  NO not on video. Yes I do cry and here is the picture to prove it…..


Saturday, March 10, 2018

The morning started with Breakfast in Thing One’s Room.  The make up ladies, showed up to her room soon after.


Thing One, let me go first so I could make a “break for it” ( I don’t do good with a room full of girls being girls), no matter how nice they all are.  I also do not sit still very well.


So I got to go first and then was tasked with making sure everything was “Fixed” at the venue and making sure everyone was were they were supposed to be.  YAH “busy work”.

I spent the next several hours running between our hotel rooms (the guys were in mine and Einstein’s suite and the ladies in Thing One’s) and the Venue.  FTR I only knocked on the wrong room door one time 😛


I took pictures and video to “report back” that everything looked perfect… You tell me?

The Ceremony
Banquet Room

The 3d printed centerpieces and table numbers we made, turned out beautiful as well


finishing touchesAs Five O’clock drew near, Thing Two helped Thing One with the finishing touches…

The Bridal party took the shuttle to the venue.

Einstein and I loaded Thing One AND her dress into the car and headed to the ceremony.

(I don’t have any pictures of this yet, but I will share some pictures that have been shared with me from the remainder of the evening below)


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Now, I hope you can see why I can’t find the words to describe just how perfect the entire weekend was.


Dearest daughter of mine,

As I mentioned before, I do not worry about you.  I don’t have to!!!!  You are smart, beautiful, caring, determined and independent.  You’ve Got this! You posted the picture that I used as a featured image on this page to your facebook page with a caption stating that I was the greatest woman you know.  You wrote me a letter that made me cry.  (and bought me an awesome “mother of the bride” coffee mug.)  In your marriage, you have also given me a “son”.  I am so sorry that I’m not good with words, but please believe me when I tell you…..

YOU are the Greatest Woman I know!!!! and having you as my daughter is the GREATEST GIFT of all!!!!


They call it the flu.. I call it fucking life up

I’ve been through a lot in my life, is it possible that I have never had the flu before?!?!  Maybe I caught some special breed of this monster?  Whatever the hell you call it, it seriously fucked me up.

As many of you know, Thing 1 Got married on March 10th.  We went out of town for her wedding on the 9th, and from the moment we walked out the door the entire weekend was MAGICAL! (I have pictures and video to prove it!) Literally EVERYTHING was perfect.

At 6 am on March 11th, I closed the door to our hotel suite saying goodnight to the last “after party” guest.  I climbed into bed next to Einstein and smiled.  Our princess really was a princess!!!!  What a wonderful weekend!

Did you know that today is March 20th?  Trust me it is!  ( I have checked the TV, the Computer, and my phone 3 times)  How the hell did this happen?!?!  10 days!!! I have “missed” 10 days!!!!  Where the hell have I been?!?!?

Again, they call it the FLU.  Oh I’ve got some words for it, but autocorrect keeps changing what I say into “#$^$#^@#$(%$)”  I keep trying to fill in the ” missing pieces”, but I can’t believe it’s been 10 days.  Where the hell have I been for 10 days?!?!?

The answer is Horizontal. Drugged, in a daze etc.  Apparently, I caught the flu and it literally kicked my ass or fucked life up.  I remember arguing with Thing 2 about going to the Emergency Room.  (In hindsight, Never have I been so grateful that she doesn’t take no for an answer.)  The fever that I had been fighting reached 104, my oxygen sats were in the 80’s, and I got dehydrated.  I’m home again and I today I am vertical, but that’s all I’ve got for now.  I have a feeling this is gonna be a long road.

Still recovering

I would really really really like to share the details of the amazing weekend we had, unfortunately at the moment staying vertical for more than 30 minutes at a time is a challenge.

Thing 1’s wedding was amazing.  The entire weekend was amazing.  MS didn’t stop me from having an incredible time, however, now it seems to be time to “pay my dues” or let it be for a bit.  I won’t go so far as to say I am having a flare up, more a pseudo exacerbation coupled with a cold, the flu…or whatever is causing me to have a fever of 102 with body aches.

Thank you to everyone that has reached out to ask if I am ok.  I will be!… For now I just am.  One day at a time.



How did I get here?

I woke up this morning feeling,  I would like to call it “recharged”, but it is better than that, and I really can’t find a word to “define” it.  Liberated? Free? Optimistic?….I guess the definition doesn’t really matter, but the feeling is INCREDIBLE.

Today, I was “supposed” to run electricity with my dad, but the weather changed our plans.  As I reached for my “to do list” to fill up my day, a thought hit me.  I really LIKE this feeling.  Instead of rushing to fill the “free time” with some other task, I decided to do nothing, just for a minute…. Did I mention I like this feeling??!?!?  I still don’t have a word for it, but I really like it.

codependentyThose damn feelings of CO-Dependency kept trying to creep in.  Someone, somewhere must need something.  I am positive that I am forgetting something for the wedding, maybe I should start packing now, so I can recheck it 50x before we leave Friday morning?           STOP IT GRACE!!!

I looked at the calendar, everything is right on or ahead of schedule.  How the hell did that happen?  The last two? three? weeks are kind of a blur.

Okay so how did I get here?

I reread some of last weeks blog posts.  Oh yeah, I kind of remember doing that…. maybe?  I’ve been living on auto- pilot.  I have been “going through the motions” and not letting myself FEEL anything.

Yesterday, when I arrived at the hospital for my Tysabri infusion, the nurses kept asking me if I was ok.  “Are you sure, you’re ok?”  I replied, “Yes, I’m good, just overdue for this infusion and I’m really tired.”  and then they asked again…”Grace, are you going to be able to drive home after this?” I responded, “I’m not driving, I promise…my parents will be here in a little bit.”…. one more time….”Are you sure?”….. uh huh…..and I was out.

I woke up to my dad’s voice in the hallway calling out my name to see which room I was in.  The minute, I saw their faces, tears came pouring out of my eyes.  What the hell is this,  why was I crying?  It didn’t really matter, it’s not like I could stop the tears anyway.  So I just let them flow.

I don’t remember anything else from yesterday.  I know my parents brought me home.  I know I ate at some point etc etc.  and I slept.  I really slept.  I still don’t have the adjective to describe this feeling and I am going to let that be ok.

In the past two hours that I have been sitting here, drinking coffee and reflecting I have “learned” some thing about myself.

I can “handle” physical pain, but I do everything in my power to run from emotional pain, in fact,  I think I have done this my entire life.  I stay busy all the time.  I go out of my way to try to make people feel better all the time, because I can’t handle tears.  I can’t handle watching someone who is grieving suffer.  I literally would rather go to the dentist, get shot, jump off a cliff, you name it, than to FEEL emotional pain.

My first thought, was “that’s just pathetic”.  But then I asked myself, “Why?”.  Who says it’s pathetic?  Seriously, who’s voice is that judging and belittling me?  The voice was my own.  There is no one to blame.  It’s that VERY FRICKING LOUD “little voice”, in my own head trying to sabotage myself.  When I type it out in black and white, it looks just plain silly.

Ok, so I have some work to do on myself.  (But not today).  Today I am going to just be.  I am not “planning for tomorrow”, or “thinking about yesterday.”  Today, I am just going to be.