This last month or so has simply been a whirlwind of
nostalgia. Shortly after my last
entry, I turned 27 (WHAT!?!?!?)
And although last year was probably the best birthday I have ever had,
this one came close. I just spent
the weekend by the pool and there were surprise cameos by my 2 best
friends. It was crazy.
I have also been going through so many boxes, and
memories. It has been quite a trip
unearthing Spice Girls barbies, Furbies, Karma bracelets, and pretty much
anything else that could be hoarded from the 90’s!
Two other crazy things happened around that time- because
well, this is my life. I got a
call, the weekend of my birthday, from another good friend of mine. Some of you may know her as Galinda, or
have seen her on Glee?
Perhaps. Her name is
Kristin Chenoweth.
During my trip to DC, I was listening to my “defy gravity”
playlist on the airplane, and I had a random thought that I should text my
friend (and famous musical director) Mary-Mitchell Campbell, and tell her that
if she happens to talk to Kristin, just to pass the word along that I’m doing
really well. I often wonder what
it is like for these celebrities (or camp staff members etc.) to connect with a “sick kid,” like we
did, and then not really ever hear about them again and just wonder….
So I wanted her to know I am indeed kicking asses and taking
names. Well, no sooner did I get
home from my meeting in DC (which will be another entry coming soon) K. Cheno had tweeted that
she was WITH MMC and they had been talking about me! 0_o
The next day, we were driving to the Nana & Papa’s, and my phone rang and it was MMC. No.freaking.way. So I answered, and come to find out, her and Kristin were touring together, and were just rehearsing, and stalking my blog and facebook, and wanted to catch up. So we did. We chatted for almost an hour, about life, and Broadway, and as it turned out they were actually doing a concert in Boston the week I was going to be there! Kristin said she wanted to invite me, and told me to round up whoever wanted to go, and to plan on hanging out after! We continued to text over the weekend as they were flitting around NYC getting mani/pedis and lattes at Starbucks, and I sat by the pool with my family.
The concert was absolutely incredible, and very timely. Even more ironically, it fell on the
exact day as the benefit for Mr. Paul L. Newman that Kristin and I reconnected
at in 2009. After the show-
we got to hang out a bit, and we Skyped a very excited Owen : ) Kristin said to me, “You know, I think Paul arranged
this, and I think he’s smiling right now.”
(2001)
I had gathered a group of amazing people from all aspects of
my life for the show, and it was just such a great, cathartic, relaxing
evening! Then, as I didn’t want to
spend the rest of my night trying to figure out how to get back to where I was
staying in Sudbury, MA with Pastor Jordan, it was arranged so I could actually
just stay with MMC. Where they
were staying after the concert.
After the cattle call of all the people with purple wristbands, MMC and
I followed KC out the stage door.
I have had some stage door experiences, but mostly they consisted of
very confused low budget paparazzi who weren’t sure who I was… But this was legit.
We exited to about a hundred, crying 12
year old girls, and while Kristin signed autographs cause she’s fantastic, MMC
and I were hurried into a black SUV with tinted windows to sit among the
screaming fans. With a driver
named Joe. Yep. My life. We talked non-profits, health education, and where I see my
life going now (HA! Who
knoooows) Then we headed
over to the Mandarin Oriental.
I won’t bore you with all the details, but check out our digs here….
Toto. We’re not
in Kansas anymore.
Except til we were.
The wonderful Sir William of Cambridge picked me up in his
Toyota, and we were headed back to the “real world” where I had to figure out
how to sign a lease and pay all the money we needed to, to wrap up the process
with our apartment.
OH YEA! We
found an apartment! The week
before my birthday, Owen and I snagged an accessible studio apartment in
Allston. It’s in a brand new
building, which is barely even finished yet! Our unit is fully accessible and the building is just
crazy. It is definitely more than
our original budget intended, but at the end of the day we looked at all of our
options, and for what we get, and will not have to worry about (there’s a front
loading washer/dryer IN the unit, lowered countertops, brand new appliances,
fully accessible bathroom, trash/recycling on every floor) it is worth it. We will actually be able to focus on
school, work, and our life transition and not agonize over who will get the
laundry out of the basement and how we will get it back up.
(not my pictures.... real ones to come soon!!!)
It’s difficult from an advocacy standpoint, because it is
AMAZING (also ironically, it is even on the “penthouse” level) and you know
what. I DO wish that we could just
rent a house with 3 other people and pay $500 a month, and not worry about it. But we wouldn’t be able to get into it-
or we would have to adapt things on our own. I have to believe that this unit fell out of the sky for us,
because the universe wants us to do this. Truth be told- I found this place because I had seen the
listing many times, and just wanted to see if they had accessible units. If they didn’t I wanted to know who I
had to talk to, to see that new buildings didn’t get built without them. When I got a response saying they
did, I decided to just ask about the price. I come from a mindset of “You never know until you
ask,” and, “Don’t tell me
something is too good for me.
Ever. If you want something
bad enough, or if it’s meant to be, it can work out.” I was sent some floor plans and price quotes, and for
what we had previously been shown for things that didn’t even meet our needs,
it was moderately “reasonable.”
I will be perfectly transparent.
We are paying $1750 for a studio unit. But it’s ACCESSIBLE, and safe, and near where we need to
be. It’s the best we’ve seen.
We scrambled and were able to get everything in to “secure
it,” then we went back and forth with paperwork for quite awhile, and
sometimes it felt very 1 step forward, 2 steps back, as very time we thought we
were done, we’d need to sign, or pay something else. But… as it stands right now, we got approved, and all
the paperwork and fees are paid. I
get to see the building next week when I’m in Boston, all my financial aid
stuff is going through, I am registered for classes, Owen has his one way
ticket booked, and the going away parties are planned!
This is really happening! It truly won’t be real until all the parents leave,
and we just stand in our 500 square feet and go, “blink blink. Um, wow.”
Now it is crunch time, and I am preparing for the Face Forward Conference
in 2 weeks, then it is all eyes on the move! My focus is a little frazzled and I am dreaming about
conferences, and finding doctors, and there are days when I just want to throw
all of my belongings in boxes, and just go somewhere tropical with no cell
service until I can just show up at our apartment. That obviously won’t happen, so I’m just diving into work
and planning until it’s time to head to Beantown.
30 days!
I also want to share this link: http://www.gofundme.com/pbs2c
Since Owen and I have a group of amazing supporters that
spreads all over the country (and beyond, really!) We wanted to create a way that if people wanted to do
something, or give us a gift but can’t exactly attend our respective parties,
you can be able to this way.
It is reputable, and secure, and of course there is NO expectation or
obligation, and we totally get how tight times are right now, but if you are so
willing to help out- there it is, and we appreciate every gesture of
support! Help us reach our
dreams, to prove that other young people with disabilities can reach theirs one
day!
We love you all.
Thank you to every single person who has helped us get this far. This is just the beginning!
