A weird thing happened today....

A weird thing happened today.

For the past couple of weeks I have been feeling... Out of sorts with everything.

I just have reached a level of frustration  and apathy I can't even describe. I know it's not good, and it's almost summer... So I'll be ok. 

But today I had a call that just left me feeling frustrated, useless, jaded and anxious. I made the executive decision to just take lunch and go get some sunshine since it was a beautiful day and I am also tragically seasonally affected.

I had barely entered Downtown Crossing when a woman approached me.  I am not one to stop and chat especially in that area, but for some reason I stopped and listened to her. She was trying to find the Mass Rehab Commission and her computer had died and nobody would help her. I told her I didn't know where it was and she kept apologizing and telling me her life story but I offered to GPS it on my phone.  

....she also was terrified to even be Downtown (and probably had additional issues that would make her eligible for our programs...) she kept saying she would "watch my back" while I googled for her.  But I took my time and still couldn't find the number.

I'm not sure what came over me but after a recent interaction the first thing to pop into my head was the Boston Center for Independent Living which was one street over. I quickly googled their number, dialed and spoke to the receptionist. Without skipping a beat I explained who I was and where I worked and I was trying to help someone find their way around downtown.  She gave me the address and I told the lady as she kept apologizing for keeping me from my lunch break (which was not really my mission anyway) 

She thanked me profusely and asked if there was anything she could do for me. I said no I just hoped she had a good day and made it to her appointment ok.

As I was getting ready to leave she said. "I hope it comes back to you!"

After that, I circled the common too many times on Scootzilla, venting to some of my dearest mentors who know where I am at with everything and convinced me it's not time to throw in the towel just yet. 

I made myself eat lunch and went back to the office. 

Upon which I was super productive on the task I was working on, and then I got an email asking me to staff an event at the end of the month, to represent us and the One Care Program. 

Then I had a very important meeting that I had been anticipating for some time and that made me realize that i think it's gonna be ok.  

Maybe it is coming back to me.

In that moment, I felt like maybe I'm not the ice queen I felt like perhaps I was becoming.  Maybe I do sometimes "like helping people." 

 I can't help them all, nor do I want to, but today, at the end of it all, I felt valuable, helpful, smart, and once again, like I'm where I need to be, even just for the moment.

I guess we'll see :) 

Teaser Blog

There is SO much to write about, and it will happen.  I haven't even really been putting it off, i've just actually been doing some grown up prioritizing and have had SO much going on.

Last week I had 3 assignments due the same day, and I have ONE MORE assignment before the academic year is over for me.
 My BUSPH class ended like 3 weeks ago, and my fellowship is STILL happening until June 13.  Ri. Diculous.  I am so done, I can't even make werds anymore.  And I've had other random stuff come up, like writing things for other people, which is remarkably more challenging than just rambling in my safe little corner of the cyber-verse

I promise though, lots to come, and I will have lots to write this SUMMER. Since it's the first time in 2 years I will not be taking classes!!!!

So hang tight, and be sure to come back soon.   We went to Baltimore and back, had some scooter adventures, went to BOSTON CALLING, which was epic upon epic.

and apparently I have a birthday soon.  This silly entry is basically serving as a reminder to myself to write about all these things, and not forget anything!


CRAZY.

All right.  Thanks all for dealing with my madness!   So. close. to the end!!!!!

Today is Mother's Day!

"What day is today ?

Today is Mother's Day!"

- Full House

To all the moms that rock. We salute you.

But I am here to talk about MY mom.  Usually on this day, we all post an obligatory Facebook status of how our mom is the best and change our profile picture to one of us with her, but I have decided it's really time to talk about why my mom IS the best. 

Now, don't get me wrong, my mother and I have always been close.  Atypically close actually. I never went through that rebellious phase of blaming all of my life's unfortunate events on her, screaming "I HATE YOU!" And slamming the door.

I was wise enough to know my mother was not responsible for any of my minimal teen angst. But I also realized at a young age that had it not been for my mom and dad, I would not have the life I have, or maybe even be here.

As I said, I always loved my mom. I was even told by my friends "your mom is really cool."



 She basically took in a lot of my friends who sometimes needed the extra dose of "mom."  She justified any reason to celebrate or make the most of something. She taught me to not only work hard, but to play hard. 

As I have gotten older however, and am in a relationship, my love and respect for my mother (and both my parents) has deepened to a whole different level.

My mother was younger than I am now when she had me.  And she was even younger, before that, when my dad had a very catastrophic car accident, that left him in a coma and needing to rehab back to full functioning. Her strength, courage and love for him during that time, even though I'm sure it was not easy was the basis for our family to exist.

Now that I care about someone on that level, and having had minimal traumatic events, I cannot even imagine how scared she must have been. 

When I was born, another world of fear and unknowns began. My young parents were on a road of not only having to manage the future of school and "normal kid stuff," but having to learn about IV infusions and dressing changes for their new addition.

but they did. 

Then, eight years later, for our family to be complete, they held their breath, knowing they may need that same strength and courage again.

Thank god they did. 

As I have mentioned before in this blog, and having heard a lot of other peoples' experiences having a child with a disability or as a young person with a disability, there are a lot of questions I get about "How can I make friends!"  "How can my child be included?"

And my response is usually, "I have no idea, this was never an issue for me!"  While it's true I have always been a pretty outgoing person, it is because of my MOM.  That I have had friends and been in mainstream classes and been fully integrated my whole life. 

I mean, honestly, not only was I included- I was popular! (I realize only now how unique my high school experience really was)

My mother knew me, she knew my abilities and never took no for an answer.

But it wasn't just academic, she let me LIVE my life!  She let me take dance class, and have sleepovers and go to prom and go on road-trips and go away to college.

When some of those things were difficult, she let me fall, and she hugged me and listened when I got back up.  She answered the phone to silent tears my freshman year when I just didn't think I could do it anymore, and she celebrated me 4 years later when we were able to say "I knew you could!"  

Over the last few years, my relationship with my mother has continued to transform as we became colleagues. We started working on the same grant as I needed someone to travel with me, and the grant needed a family leader representative (check, and check).

I have so many memories of the trips we took together. Once I had moved out, these conferences became our time to reconnect.  We would celebrate each one with sushi or wine and toast to whatever the event would bring.  

We would laugh so hard for no reason,  or debrief into the night about the days events.

After a few years I decided I was ready to start traveling by myself, and my mom's career took a direction of its own, as did mine, and even that was amazing to watch. It was fun to actually meet up at conferences coming from different cities, and I was so proud as I watched my mother accept a national award on behalf of families all over the country (even if she doesn't think she deserves it) 

Now, as I am settled in my studio in the city, and my sister is almost finished college, I have seen another side of my mother, as my parents begin to rediscover themselves and find joy in their time together

It makes me so happy when I see pictures of them playing in the snow like kids, or that they had a date night together.  

It reminds me to value the time I have with the people I love, and to not get caught up in the small stuff.

As I continue down my career path, and as I advocate for my own health and life, I am not even going to try to pretend I do not sound exactly like my mother. Sometimes I say exact phrases I heard her utter over and over when I was younger. 

We all say "oh god I'm becoming my mother!"  And well. I totally am. And well.  I couldn't be happier.

I love you mom.

Thanks for all you have done for me, Maisy, and everyone else you continue to support to live their best lives today.

However- I also know my mother and will not give her a chance to interject and say she did not do it alone. A lot of our journey was influenced by other moms. Significant key players that supported my parents and helped me through different stages of my life.  They will not go unmentioned,  but now that I am in school for public health I can safely say that ok matter support is offered, if the social determinants of your home life don't support behavior change, positive development efforts are likely to fail.  My mom never gave up, and provided more than she will ever know.

So there. Credit where credit is due.  But my mom is still the best.

We love you :)

Brunch, Baseball and Beauty

This past week ended up being pretty epic! It was super busy but also relaxing, enjoyable and the perfect way to kick off spring in Boston!

Sunday was Easter, and as much as I waffled with going back to Maine to spend it with my family, we had just had a weekend in New Hampshire, and frankly, taking the train and organizing all the transportation and getting from point A to point B, is a lot of work, and sometimes counteracts the realization we might actually get from the trip.  So we made the executive decision to stay here and enjoy our own traditions, which we are still figuring out.  Holidays are odd as adults, because I’m realizing so much of our important traditions, I don’t actually believe in the context of.  Don’t get me wrong, I love any excuse to be with family and have a huge dinner, but Easter was sort of like… “well. We don’t have kids, I’m not hiding eggs, and we’re not going to church.”  What does that mean for us?

PAJAMA BRUNCH.  Clearly.

There is a place in the South End we had been trying to get reservations at for awhile now, and when we decided that we were going to be in the city for Easter Sunday, I made us a reservation at Tremont 647!  It was fun to try a new place and we went home comfortably stuffed.  I am learning my ideal religion involves the worshiping of sun and brunch.

Then we had an evening of total spontaneity (well not really, but deciding on Friday, was spontaneous for me) and ended up going to a concert at Brighton Music Hall to see an old school hipster band I liked in college, HelloGoodbye.  

I had seen the sign on my way home from class on Friday and tickets were super cheap, we had nothing that night and we figured, why not!  It ended up being really fun.  At first I was hesitant about the venue, when we were waiting outside in the cold and someone said they would “come get us,” when the doors opened, and then I turned around and saw people at the other door getting wrist bands and going inside.  Sigh.  Good thing we didn’t actually just live life sitting around waiting for people to “come get us!”  So I flagged someone down and we went inside.  The “Accessible” entrance of course totally had a mini bump to get in, and stupid me, in a rush to get inside, stuffed my iPhone in my pocket, and as soon as Scootie and I went over the bump, it fell on the ground and smashed.  Again.  Perfect way to start the night.  Then, as we entered the small venue that was general admission, with no actual seating, we tried to strategize the safest place for us to be.  Granted it wasn’t expected to be a heavy metal show or anything (Actually, it was on 4/20, and I lost count of how many times the word chill was used)  but still, we wanted to be safe.

Just when I was about to just settle in the back by the bar, a staff member came up and asked if we would like to be seated next to the stage.  They made some hipsters get up off the floor and move their stupid backpacks, then tucked us comfortably in a corner inches from the stage and put up a rope so nobody would come in contact with us.

It ended up being a fun show!  We were able to get drinks, move around how we wanted and the crowd wasn’t that unbearable!  Everyone was super nice, and it’s cool that this place is like 2 blocks from our apartment, although it’s definitely a starter venue, as the opening band pulled up in a mini van (ran over the curb) and went in the main entrance where people were waiting.  Excuse me kids, does your mommy know you’re here?

After some steamed buns and egg rolls at our favorite spot, Shang Hai Social Club we went home far later than our usual senior citizen bed time, excited to sleep in the next day because it was

MARATHON MONDAY!

And it was beautiful, and uneventful.  We watched the first couple hours of the race on TV and were amazed by the winners, and the wheelchair elite division, which just astounds me.  Then we went to …you guessed it, BRUNCH!  Because that is the wonderful thing about Marathon Monday.  There is brunch at places that typically would not be open on Monday.  We went to one of our favorite places in Coolidge Corner, where we were able to watch the race right out the window (for more of where our favorite brunch places are- check out my Yelp page here) and we talked about how amazing it is, that we are able to experience all of this, and it is just a part of our neighborhood.  This was a week of just realizing how cool it is that we LIVE here.

After brunch we met up with Team Next Step to cheer on our runners, then hung out for so

me good food and drinks, and had an awesome time just unwinding with the cool kids we’re going to be working with all summer.  Then Owen went out for another round and I came home and enjoyed some home spa goodness and reality TV since I had to go to work the next day.

It was such an incredible day, and although there was a tiny bit of trauma, retracing the path we ventured last year, and seeing footage of the finish, the day went on without a hitch and it was a true depiction of what Boston Strong really is all about.

Thursday was another big Boston milestone for us.  Our very first Red Sox game at Fenway!  And they were playing the Yankees.  A few weeks ago we went to a fundraising event for camp, and on a whim, won the tickets in the silent auction.  As soon as I saw our bid highlighted, I realized the tickets were for specific seats that were most likely not accessible.  THESE are the things you do not think about- but you learn from.  Camp was amazing and were able to arrange it so we could get (awesome) seats and still attend the game!  So we did.  And it was awesome. And FREEZING.  April is NOT warm.  I’m sorry.  I keep thinking, “YAY SPRING” but no… it was not warm.  But between hand warmers, epic layers, and a ginormous DD coffee we made due!  But… I do hope our next game it is above 40 degrees….

This weekend began the process of my spring transformation.  This time of year, I always get so antsy with EVERYTHING. I want to change my hair color, get fit, and move somewhere warm.  Ugh Spring Fever!  While I can’t necessarily do all of that, I took some baby steps to see that I feel my best powering through these last few weeks of school.  First I got my phone fixed at a random kiosk at the mall, got a watch resized that I got for Christmas and haven’t been able to wear!  Then I used a Sephora gift card that has been burning a hole in my pocket to invest in some big girl skin care products. It’s funny, because I’m realizing, even though I am so into beauty and products, I basically use free samples, and whatever is laying around (or things that are given to me, aka LUSH) to wash my face.  Now that I’m in a place to really take care of myself, I decided it was time to take the plunge.

Yesterday it was rainy and gross but I made myself leave and I got a pedicure, and made the decision to get some pre-summer highlights and a hair cut!  When I first started school, I made the big decision to try to get back to my original hair color, and it was torture, but I went a whole year without coloring my hair.  I just babied it, and got it trimmed every 6 weeks.  Now, I’m ready to brighten things up again!  It feels so good!

So with all of that- it is time to move forward!

• 2 more weeks of BU classes, and one final presentation (5 minutes, 6 slides…yikes)
• 6 more weeks of LEND- a poster presentation, and a paper

And a quick trip to Baltimore for a transition conference, where Owen and I are speaking on a panel!

There you have it! 

Spring… enough with the 40 degree weather. I’m ready for May.  Any day now….

Liebster Awards!

The Liebster Award is awarded to bloggers, by other bloggers with the intention of connecting the community and bringing new visitors to blogs with fewer followers OR to a blog you love!

I was so honored to be nominated by my dear friend Maria, over at A Hip Story, and while it has taken me days, and multiple sporadic efforts to finish this, I really was honored to participate!  I love love love, answering questions, and this is such a great way to spread awareness about some awesome bloggers!

These are the questions that Maria gave me:

1.     Why did you start blogging?

I have been writing about my life for as long as I can remember.  When I was younger I had multiple diaries (usually with cats on them), the kind that had the tiny lock and key, and I would write faithfully every night.  Over the years those evolved into LiveJournal, Geocitiies, Angelfire, and whatever platform I could get my hands on.  My life has been a series of adventures and often the only way I felt I could process it was to write. Even when I wasn’t writing, I would narrate my life in my head like a character in a novel, so it only made sense to put it on paper.  

Now that my career has evolved, I realize I have developed a sort of following and people might actually be listening.  My journey has become that of a generation, and while that sounds like a big obligation, I am fortunate to be in a unique position to be transparent about a lot of things that don’t get talked about.  Most of all I hope to represent that healthcare, and chronic illness does not HAVE to be your life.  Life happens, and you do what you need to do to along the way

2. What's your favorite vacation spot?

There are so many places I still have yet to go, but I think I have 2.  Vegas, and Cape Cod!  Both remind me of times when I was able to put everything away, unplug and just breathe, and live life!  Cape Cod represents summer happiness with my family, and Vegas was the common meeting ground for Owen and I when we were long distance.  

There is nothing like the surge of energy that hits when you land on the strip and the possibilities of adventure open up, with no obligation to anyone! The other great thing about Vegas, is the accessibility.  I always say its like Disney for grown ups.  I think Vegas was the first place that Owen and I really got comfortable travelling independently.  We are able to go anywhere and do anything without needing to worry about transportation or involving other people.  It’s just liberating… and you can do it all with a drink in your hand. Bonus points!!!

3. If you could have dinner with any one person, dead or alive, who would it be and why?

Dr. Jen Arnold and Bill Klein of the Little Couple.  I have been obsessed with many “reality” shows in my life, but these 2 are the real deal.  They are hilarious, determined, hard working, and they remind me SO MUCH of Owen and I.  I actually have been in touch with Jen as I know people who work at the same hospital as she does.  I hope some day we can all meet because I think they are incredible and I have so much respect for the way they live their lives, and how they portray all of the issues they deal with on a daily basis.  I also would like to find out how to achieve a level of success where I can have a custom fitted home and Lexus… without going to med school….

4.     Who or what inspires you?

TRAVEL.  Seriously.  I think, and brainstorm, and ask myself, what makes me feel alive, what makes me happy, and want to move mountains, and it is that feeling of being above the clouds, headed to a destination where adventures will unfold.  When I think about what I want in life, and what success means to me, it is having the ability to take at least one trip annually; with NO work obligation to just experience new places and build awareness about accessibility in recreational activities.  Maybe some day there will be a fully wheelchair accessible luxury spa line. Who knows.  When I travel, I feel like I can do or be anything.

 

5.     If a movie was made about your life, who would you want to play you?

Emma Stone!  A few years ago, I probably would have said LiLo, but she clearly has other things going on right now.  Emma is smart, funny, super talented, and looks killer as a blonde or red head!

6.     What is your favorite childhood memory?

Oh gosh!  I have so many, and the funny thing is, as much trauma and rough times as I went through medically as a child, it is not what stands out to me when I think back on my childhood.  That being said, I have a couple.  The first one, of course, was when my sister was born.  Duh.  From the time I was old enough to know that people could be added to the world, I was requesting a sister (or a brother… but really- who was I kidding).  When I was 8 years old, my parents answered my request, and Maisy joined our family.  I remember I was supposed to spend the day with my nana, we were going to go see Snow White, and I was getting my hair done.  When nana woke me up to tell me my mom had had the baby, my only concern was if our plans were still on!  The day went on as planned, and then AFTER I got my hair done, we went to visit my new sister. Priorities.  Now that baby sister is going to be 21 years old and is my other half.  Even though we are 8 years apart, I believe we are a special kind of twins that just complete each other.

The other thing I remember fondly is just how much FUN I had as a kid. My mom let me have (and helped me plan) the most kick ass sleepovers ever, and my house, or the Nana’s pool was where all the celebrating happened, and people just automatically ended up.  Recently in one of my classes, we watched a video about “including,” people with disabilities, and it said, “let them have, and go to sleepovers,” and I realized what a HUGE role that played in my life.  But honestly now… I did not just have sleepovers, I had spa parties, and tea parties, and black light disco parties, and candlelight pool parties.  And thank god.  Thanks mom, for helping me be one of the cool kids in school ;) 

7.     Have you ever had a moment of divine intervention? (or fate, sheer dumb luck, whatever you want to call it)

 Basically my whole life is a series of me looking up at the sky, going "really universe?"  Songs will play at just the right time, like TV producers are going to pop out of nowhere, people come back into my life when they are supposed to, and things just work out.  I believe I have an incredible team of guardian angels making sure that everything goes according to plan, even when I'm not sure it's going to be ok.  It's fun sometimes, but I never assume. :)

8. Which person in your life makes you laugh the most?

Total Tie.  Ms. Maisy Cyr, and Mr. Owen Erquiaga.  One of the biggest reasons I fell in love with Owen was that he could make me laugh like nobody ever had.  In most of my social encounters, I am the funny one.  And sometimes it gets boring.  But Owen comes out with one-liners that are the kind of funny that I will think about days later and just randomly start laughing again.  3 Years have passed and he still has me laughing, every day.

And Maisy.  We don’t even need words, and we will just share a look and burst out laughing from something that happened 5 years ago.  People don’t understand us and we don’t need them to. We get it.

9. What's your favorite book? And because this is hard, you aren't limited to just one. Or just 5. :)

Ok, so this is super embarrassing as a creative writing major, because I should have an extensive resume of classic literature that inspires me right? Well I don’t.  First of all, my entire life, when I’ve had time to read I’ve been reading for school 2^nd of all, when I read for recreation it is just that- RECREATION. Currently I tend to alternate between professional development books and total mindless chick lit.  And I have no shame. 

A top few that do stand out to me are:

Sisterhood of the Traveling Pants.  A somewhat honest, relatable tail of friendship and growing up.

• Hunger Games trilogy.  Just UGH.  I hadn’t read a book so quickly as I did these.  And being in policy and government… ugh, just … too close to home.  I have a thesis planned in m y head in which I compare growing up in the health care system to hunger games. Stay tuned.

• If You Have to Cry Go Outside (and other things your mother never told you) Kelly Cutrone == bad ass, power woman, hero.  Grow a spine and read it.  All you blonde public health interns, come talk to me when you’re done.

• A Place of Yes.  Bethenny Frankel is another one of my idols, and this book is the style in which I hope to write my own memoir one day. It just fits the way I think.

•  A Fault in Our Stars.  This is what every Nicholas Sparks "cancer book," is trying to be.  Grab some tissues and get ready to get real. 

10. You can have three wishes granted from a magical genie. What are they?

• A fully adapted house, somewhere warm.
• The resources to travel and see family when we want to (not unlimited money I’d be ok working, etc, but being able to do this at will)
• An awesome private driver and my beck and call.

The end. And with that, I nominate two of my favorite power women bloggers- Allison of “She’s aHoot,” and Heather from “Team Aiden.”  They remind me to keep writing no matter what is going on, and that things are always better when you can laugh about them, and maybe, just maybe, I’m not crazy.

Or if I am, I’m in amazing company!

My questions for them:

1.  Why did you start blogging?

2. What is the one biggest thing you have learned from your kids?

3. If you could recommend ONE book to all young women growing up today- what would it be?

4.  Favorite meal ever?

5. If you could be on any talk show, or reality show, what would it be?

6. Dream vacation!

7. If you were a fruit or vegetable, what would you be?

Good luck ladies!  :)

Thanks for reading.

xoxo