So you want to say "Yes to the Dress!"

Unlike most brides who begin planning a wedding, dress shopping was probably what I was least looking forward to. I spent more time scouring photos of styles that might actually work for my body (3’ 9”, a central line I would have to creatively tuck into whatever neckline I chose…) than those I actually liked.  My biggest fear was that I would have my family fly in, we would devote a day to shopping and all leave defeated and disappointed. Well, i am here to tell you that is NOT what happened, and dress shopping was easily one of my favorite memories of the entire wedding planning process!  I thought I would pull together some of my Dos and Don’ts so that all my tiny brides, or differently shaped brides can have a positive experience on your big day (or maybe just make it suck a little less!)

DO your research! A few places I found on Yelp were NOT wheelchair accessible. Regardless of the fact that myself and some of my wedding party required accessibility, I struggle to give my business to places that are accessible to all. I had a list of places I wanted to go when the day came. Come to find out, we only needed one! We went to Luv Bridal in Denver, and they were fantastic from beginning to end. You can read my full review here.

DON’T bring a ton of people. No really. I invited my mom, my sister (Maid of Honor) and one of my bridesmaids who was local and it was perfect!. I did not ask people to fly in, or invite the entire bridal party. Let me let you in on one of the biggest wedding planning secrets you’ll need.  When you invite people… you also invite their opinions.  This place happened to have a limit of how many people could join you, but I just advise bringing people who know YOU and that YOU want to share the moment with. If that’s everyone, great, but you can also meet up with your crew for bottomless brunch after and let them be surprised just like everyone else!

DO advocate. Ugh. So annoying right? I’m the bride, everyone should KNOW what I need!  When you have a disability, you are no stranger to advocacy. Well guess what? You don’t get to put that away when you’re planning a wedding. I took a few minutes to call the bridal salon I had an appointment with and explain that I was not of average height, and what they were working with.  I did NOT do this to ask permission to shop there, or create any sort of pity party.  I wanted them to be aware so they could make informed choices when choosing dresses and make the most of my time AND theirs! They were so wonderful, and acted like this was business as usual for them!

DON’T pop bottles.  I know… I know…. how can I possibly be giving this advice?  I imagined my dress shopping experience to be welcomed with glasses of champagne because, duh… wedding. But it was BYOB, and we didn’t, and I am GLAD! Have you ever decided to have just “a couple glasses of wine” and ordered some weird stuff from Amazon? You want to be in your BEST state of mind. Also, for my ladies with disabilities, standing on that round circle in dresses that don’t fit, you don’t need anything else impairing your balance! Trust me, there will be PLENTY of champs in your future!

DO stick to your budget!

I was terrified to buy a dress.  I know people spend four times our wedding budget on dresses and I was afraid to even try one on!  I was transparent about our budget from the beginning and guess what? My dress was UNDER our budget! It all worked out.  And if it hadn’t? I probably would have kept looking. I know this is a big day folks, but my wedding motto was also “it’s ONE DAY!” You have to pay rent after the wedding! Stick to your guns! I also shopped around for alterations and found an amazing deal going through a local seamstress vs. what the salon wanted to charge me!  Yelp is your friend!

 

DON’T limit yourself to your comfort zone. I went in thinking I knew exactly what I wanted based on what had always worked for me, and what wouldn’t work, but guess what? I tried on a mermaid fit, and guess what? It looked amazing!! It wasn’t what I wanted for the day, but I was shocked to see that something I never thought would work for me kind of did!  

DO be HONEST.  This is your day and your body, and your emotions.  I told my consultant at the very beginning that I was feeling nervous, and dress shopping was not always a positive experience for me. I was NOT looking forward to this day. Because of this, she was always checking in and making sure I was having a good time. If there is a dress you don’t love, SAY IT! You’re the customer!  What don’t you like about it? Be specific, so your team can help find what you love!

DO try a veil. I was CONVINCED I was not going to have a veil, but you see people on these wedding shows put on a veil, and get “all jacked up” and then everyone cries? THAT IS REAL! My consultant found me a veil, and I put it on, and shoot! I was a bride. I definitely took it off for the reception, but it added that touch of glamour I just never imagined.  Even if you just try one one….trust me, your mom wants you to. 

DO let your consultant do their job. Seriously.  It’s great to have ideas and Pinterest photos, but this girl knew what she was doing.  My dress was the last dress she pulled and when I came out of the dressing room, the whole salon gasped and went “THAT ONE.” Now here’s the thing, when I found the stock photo of my dress on the model, I NEVER would have even pinned it. It was nothing like what I had on my “Let’s Get Married” wedding board, but it fit me like a dream. Not only did it fit me, but I could move in it! I could go to the bathroom by myself, and DANCE! It was MY DRESS. 

DO enjoy every moment!  After my day with my “Bride Tribe” I went back to pay off my dress, and pick up my accessories, and I went by myself.  My consultant brought me different tiaras and took photos, and that was when I felt it. My mom cried as soon as I put on the first dress I tried, but I’m a tougher crowd.  Here I was, buying a wedding dress. This was happening!  It my first “bridal” moment.” And I just let myself have it. 

Of course everyone’s day will be different, and it may not be that simple. Maybe you do want to go more than one place (frankly I was sad we only had to go to one store because it was so much fun) but just remember, at the end of the day, whether it’s mermaid, or a ballgown, or a pantsuit whatever make YOU feel beautiful on your big day will be the right choice! 

Friday Favorites 5.20.16

When I relaunched this blog two years ago, I decided it was going to be a balance of all aspects of my life.   Well, I don’t know about you, but that last entry made my head hurt, so I think it’s time for something a little more fun.  How about some Friday Favorites?

Ok.  I thought so.  Here’s a list of random things I’m loving recently!

1.     This box of K-cups.

Seriously though.  I bought this random box of Kcups because I like getting to pick a new flavor every day instead of being limited to 24 of the same flavor I may or may not be in the mood for, and since my favorite local small business coffee dealer Big Cats Coffee (out of New England) is no longer able to customize boxes, I went to Amazon.   This box has so many brands and flavors I had never even heard of, including Friendly’s ice cream flavors like Vienna Mocha Chunk! It's just like going out with my family after a dance recital!  Every morning is a treat, and I actually have found myself spending less at Starbucks, because I can have an even better cup of coffee in the office!  Bam!

2.     These Kenneth Cole boots

There is actually a funny story here, because I didn’t buy them.  I have not bought shoes in quite some time, and have recently found myself regretting some of the intense purging I did before the move.  Ugh.  I was at work the other day, and a colleague of mine stopped me in the hall and said, “Mallory, can I ask you a weird question?  What size do you wear… like where do you shop?”  Trust me, on the scale of weird questions I have received, that’s like a .5.   She went on to explain she had a daughter who had outgrown some of her shoes and clothes and they were really nice and she was wondering if I would like to try them on and see what I wanted before she tried to sell or get rid of the rest.  WELL YES, AND HAPPY BIRTHDAY TO ME.  She brought a bag of shoes a couple days later and I sat awkwardly in my cube with no shame, trying on various pink winter boots, flip flops and these babies.  The thing I love about them is they are so comfortable, AND they both zip up all the way.  I have a few other pairs of black zippy boots and while my Fryes are also super comfortable, I swear I have one calf that’s bigger than the other, and one won’t zip all the way.  So thanks Kenneth Cole, and my dear friend Gina for these beauties!  My awkward calves are so grateful!

4.  Vanderpump Rules

I am so sorry if you are a person who used to have respect for me, but this show has been my existence for like the last month and I am totally in a show hole.  I even began dreaming about these people like they were my friends and that Lisa Vanderpump was my boss. Let me be honest with you.  This is pure trash with people that I have zero respect for.  Except, I basically want their lives.  Nobody in the world could ever drink that much or speak to their boss the way they do and still have a job, let alone get to take a week off here and there to go to Vegas or Hawaii EVERY time a staff member has a birthday.  But they do.  And they’re models and have gorgeous apartments and it’s L/A and just… I CANNOT STOP WATCHING.  Lucky for me, there is talk of Season 5, and I have been filling the void with the podcast of our favorite beauty/villain, Straight up with Stassi.  So there’s that.  Also, my NY housewives are back, so it’s not a total show hole.  Sigh.

5.   My license picture

Let’s talk about this for a second.  Are you serious?  I got complimented on my old license and ID picture. Gone are those days! Nobody told me that when we moved here that Colorado was a “no smiling state.”  Bummer dude.  I especially love my new lazy eye that appears when I try to take a selfie, and my perma-cow lick that I cannot get rid of no matter what I do.  So, I guess it is just all things me.  There are plenty of other smiling pictures, and, if I ever do commit a crime (not in the cards….)  I can save them a step.

Happy Friday Y’all.

Come at me #RareDiseaseDay

It’s Saturday morning, and I’m making pancakes.  As I’m stirring the batter, my IV pump beeps at me, nagging for my attention.

It’s Saturday morning, and I’m making pancakes, that people never believed I would eat.  The rest of the day will be spent celebrating the birthday of my boyfriend of three years, and undoubtedly working on homework for classes to make sure I graduate with my master’s degree in May, as I’m anticipating.  Milestones that we were told I would never meet because I wouldn’t see a birthday after I turned two.

Today is also “International Rare Disease Day.”  People are all supposed to “raise awareness" on this day about illnesses that don’t roll of the tongue quite as easily as cancer, or tend to get resources, support, or even diagnoses sometimes.

I can’t quit explain it, but stuff this puts a gross taste in my mouth (you’re supposed to find an “event” in your area, to “celebrate” Rare disease day? What?)

No offense to those who are all about it, and the cheerful, colorful logo, that makes having a rare disease look like an invitation to Mardi Gras, and sorry to use the phrase, but:

I literally just can’t even.

I think part of it is that my life has become devoted to raising awareness, of everything.   EVERY DAY.  Then all of a sudden there is one day, and people are supposed to listen?  Then they can go back to their own typically developing life and go “wow, I didn’t even know half that stuff existed.  Glad that’s not my life/my child, etc.”

The other thing is, my “messaging/personal brand/identity/whatever,” is based on the fact that I don’t spend time dwelling on how aware I am of my rare disease, CAUSE TRUST ME, I AM AWARE.  It is a huge part of my identity, but at the end of the day, it is NOT who I am.  I also tend not to jump on the “disability/chronic disease pride,” wagon, and you will not catch me posting photos of my central line, or medical accessories on THE INTERNET on “tube feeding awareness day,” or whatever.  

Because, I believe I can create awareness without me showing my body (or anyone else's) in ways others would not (unless they were getting paid mad money-  it’s on my CHEST, get me?)

I’m not trying to hide anything about my life, but why should it be the center?  My sister and I actually used to photo-shop our central lines out of photos, like other people remove red eye, or whiten their teeth.  We’re not denying who we are, but that’s not the point of the picture. 

The point of the picture is that we’re at the beach, spending time with friends and family, living our lives.

When I was younger, I used to play the whole “I wouldn’t change a thing” game, about my disease, but guess what?  I’m an adult now, and now that I’m the one doing everything to manage my health (and insurance coverage) I’d get rid of it in a heartbeat.  It’s bullshit.

No, I don’t know who I would be without it, and granted if it all of a sudden it were gone (without a transplant or anything else that would ultimately destroy my quality of life…. I mean like a genie came and bam, it was gone) it would be weird, and I’d have to reassess a lot of things in my life, because my life, and ultimately my career has been BUILT on advocating because of my illness, which truthfully, was not my plan.

What I wouldn’t change, is the people in my life, the opportunities I have had, or the wisdom I have gained because of my diagnosis.  I am happy, and honored to now be able to show the young families and up comers with my disease (Microvillous Inclusion Disease- Google it, this isn’t a biology lesson) that there is LIFE after a diagnosis, and it doesn’t have to be a death sentence. 

What if I didn’t have my “rare disease?”   Maybe I would still be in my hometown, living in a trailer with a couple of kids, going through the motions like everyone else.  But maybe, I would have been able to grow up with even less limitations and I’d be in a different industry, working for a fashion magazine, sprinting around a city in heels, not spending my time wondering how I was going to get to the next doctor’s appointment in 100” of snow.

But guess what?  What ifs don’t raise awareness, and that’s not my life.   Now if you’ll excuse me, I have to go finish making breakfast, and enjoy my Saturday before it is time to be aware of my rare disease again.

#RareDiseaseDay2015

Xoxo

Also- As I’m posting this entry, my girl Britney’s song “Do Something,” came on.  So listen to the woman and don’t just change your profile picture.  EVERY day is time to “raise awareness.”

I see you lookin' at me
Like I'm some kind of freak
Get up out of your seat
Why don't ya do somethin'?

A Night in Room 506

Things have really been picking up for us!  Owen is doing an internship, supporting with fundraising, and social media.   In addition to my “Day job,” which is undergoing a serious transformation because the whole organization is restructuring (a good thing), Face Forward is in full swing, and it looks like we are going to have an amazing turn out this year!!

Because of all of this, we have had some days where we had an obscene amount of things to accomplish.  One day, a couple of weeks ago, I had to bounce from meeting to meeting, and then switch gears for an event, and then a concert that Owen and I were going to, at House of Blues.

I must say, I was really proud of how this day went.  It was the first time in a long time, I have had to be in my multiple roles in one day, and I was able to feel fully present at every single piece of the day.  Then, at a certain point, I made one last phone call, and made the decision it was time to put it away.  Owen and I had the opportunity to debrief a little and unwind at the open house, I wisely remembered to actually print our tickets for the concert, and we took the train down to Fenway.

Come to find out, the concert started an hour after I thought it did, so we actually had even more time, but it worked out.  We had awesome “ADA” seating, high up, with a private bar, and a great view.  We weren’t next to the stage this time, which worked out because parts of the concert were SUPER loud (or I’m just old.  Those kids and their damn rock and roll!)

It was a fun night.  I found myself doing a lot of “Oooooh! I remember this song!  I didn’t know they sang this!”  And enjoying a ton of high school nostalgia, and basking in chart toppers that graced the ORIGINAL Now Album (yes, kids, BEFORE there was even a number in the title… I think they’re up to 51 now?)

 

After the show, we both felt remarkably energized, and I was starving.  Usually, when I’m going to a show, I like to get dinner before hand, and transition a little better than bolting from a work event, but we had done it, and now we wanted food.  No big deal I figured, these crazy kids go out all the time and now the T is open late!  Let’s do it!  (Side note- we did not even have a drink during the concert, all of these decisions were made at full mental capacity…. Just saying)

We settled into one of our favorite places, Boston Beerworks, and enjoyed sandwiches and their epic sour cream and chive fries, before heading back towards the B line to go home. 

We arrived at the elevator in Kenmore Square and hit the button.  It didn’t light up.  We hit it again.  And again.  Nothing.  Both of our phones were dead at this point, so I asked a kid nearby what time it was, and he informed me it was 12:38.

“I don’t get it.  It’s open later, isn’t it?”

Then we realized the gate to the stairs leading to the train was also closed and locked.  Oh no.

Of course, at this point, I also had my old/new completely NOT portable scooter, so there went any idea of ubering, and we also had NO phones to even complete such a task.

The funny thing is, a couple of years ago this probably would have ruined our night, caused panic attacks and we would’ve made some foolish decision like walking the two miles home because “it’s not that far.”  But at this point in the game, we just looked at each other, laughed and went “What the hell are we supposed to do?”

Luckily, we were very centrally located.  We were still near all the bars of Fenway, there were other people around, and there was a hotel right across the street.

“There’s a bus that stops here.  We can ask the hotel where it goes, at least.  There’s that.”

Without having much other choice we headed into the (ritzy, historical) Hotel Commonwealth to beg for a brief lesson in MBTA since we have only taken a bus once in the 2 years we have lived here.  Luckily, we did discover that the hotel was accessible, the woman was pleasant, AND it smelled delicious.

She looked up the bus schedule and told us that there was a bus arriving in 6 minutes, which would eventually end up a couple blocks from our house!  Perfect.  So we went back outside and waited.

Soon a bus pulled up, far away from the curb, and we watched anxiously as the driver turned off the ignition…. Put his coat on…. Shut the doors to the bus…. And left.

The bus was silent, and dark. The street was dark, and it was almost 2 a.m. at this point.  

We looked at each other.

After thinking for a minute we concluded we had two options.  “Well… the hotel is right there, so let’s see if they can call us an accessible cab, and we can actually get home.   Or, I mean, I guess we could just see if they have a room.”

Here we were, two miles from our home, both having to work in the morning, completely stranded, with no way to get in touch with anyone.  Planning FAIL.

We headed back into the hotel and waited sheepishly while the woman at the front desk finished with the phone call she was making.  Once again she was super kind to us, and called about a wheelchair accessible cab for us, before even asking if we wanted to stay, which I thought was great. 

Unfortunately, the accessible cab would’ve taken “around a 2 hour wait.”  TWO HOURS. On a Thursday night at 2 a.m.  What?  I also had this terrible image of an “accessible cab,” arriving, at 4 a.m. and not actually being what we needed, and we would’ve had sat there for 2 hours, when we could have been, oh you know, sleeping.

Had it been early, we probably would’ve challenged our city and seen what arrived, but at this point I just wanted a bed.

“Ok then, do you have a room?”

“We have one room left actually, with 2 beds, but it’s not accessible, is that going to be a problem?”

No, Ma’am.  The problem has already occurred.  The problem would be sleeping in Kenmore Square, since we apparently can’t read fine print on new transportation policy.

A few minutes later we were checking into a GORGEOUS, historical, non- ADA room at the Hotel Commonwealth.  Truth be told, the “lack” of accessibility really didn’t matter, because the room was huge. 

The other funny thing, of course, cause… oh hey universe, you so funny.  The room was #506.  Our apartment number?  506.

Almost home… so close, but SO FAR!

Without having toothbrushes or any other clothes but those on our back, we set the alarm clock on the bedside Kindle Fire, and climbed into the cloud of an Eloise style bed, and passed out.

And slept like a dream.  When the sun was up, we turned around, checked out of our room, and headed home to begin the day.

I’m considering a business investment, because the hotel got a stellar review.

Our solution?  Crazy? perhaps.  Impulsive?  Maybe.  But we were able to make it happen, it meant that we got home safely, and were able to take care of ourselves to be able to be productive the next day.

Lesson learned.  No regrets.