The Monday following the conference, those of us who hadn’t left on Sunday gathered together for a guided group excursion by trolly to see some of the sights of Philadelphia.
Because we had the stroller and were traveling with the baby, we opted for the enclosed air conditioned trolley. Ceddy wanted to go on one of the other trolleys with Grandma. That was fine with us, yet another reason we were so happy she came. (YAY Grandma!)
Our first stop was the Philadelphia Museum of Art… other wise known as the ROCKY STEPS!!
So, of course, we all had to RUN to the top, singing the Rocky Theme as we did.
After we’d all had our chance to run to the top, we waited in line to get our photo taken with the Rocky Statue that was in Rock III (I think) – it’s not at the top of the stairs like it was in the movie, kind of tucked away at the bottom and to the side. Still awesome.
LOL i just noticed the placement of Brad’s hand. Poor Rocky.
We all got back in our trolleys and off we went on a tour of just a small portion of the thousands (yes thousands) of murals around the city. i took lots of pictures.
As we pulled away from the museum, our friendly tour guide ^ was so informative and reminded me a lot of that ‘kid’ from MadTV… y’know, Stewart? (“Look what I can do”). We crossed over a bridge and entered into West Philadelphia (born and raised, on a playground is where i spent most of my days…i KNOW you’re singing it). And as we made our first turn off the bridge, we were treated to some kind of a ‘bust’ going down at a small mechanic shop, that was…erm…. awkward…. and as we drove deeper and deeper into West Philly, the more we realized that we were totally in the hood. Like, the REAL hood. Not like 20th street in Saskatoon, but like – projects. Part of the great thing about the Murals program is that it helps communities like these rehabilitate. Part of the process of applying for a mural in your community is being able to show that the neighbourhood wants a mural, and that the neighbourhood would continue to respect and look after the mural, and that there will be community involvement in the creation of said mural. it’s really an amazing program, and TourGuideGuy said that those areas that have murals come together with a sense of pride in their neighbourhood which is really awesome.
We got out a few times to stretch and to get a better look at a few murals, on one of these stops i took this shot of Brad and Ozzie. this was one of my favourite murals… this grandmother is making a quilt, that goes across this empty lot to this building where the kids are holding the other end of the quilt.
apparently this empty lot used to be a community garden… now it’s a place where police vans park, and small children throw wood chips at each other.
Ozzie had enough murals for the day and snoozed on Brad. The trolley took us back into downtown and ended at Independence Hall where the Liberty Bell resides. Unfortunately for us, Philadelphia was in the middle of a crazy heat wave, and it was sooooo hot, too hot for babies and 4 year olds. Seeing as we’re not American, and we really didn’t have any interest in the Liberty Bell, we spent most of the rest of the outing in the air conditioned Information Centre.
Right close by was one of the first Quaker Houses, so mom and Cedric and i went to check it out. It was interesting because some of our ancestors who came over from the old country landed in Pennsylvania and were Quakers. (i think?) It was hot inside, but it was hot everywhere. We wandered around waiting for the pick up time back to the hotel, Mom got this great shot of Ceddy and i.
On the trolly back to the hotel Ozzie made a new friends. Back at the hotel we relaxed in the a/c and then went up to our rooms where this happened
We ordered some pizza and watched some TV and just relaxed.
i took this shot as proof that i was actually on this trip – as it usually happens, the one with the camera has the least photos. lol.
and thus concludes our first day of sightseeing and our fifth day in Philly.
In the morning of Day 2, mom and i went for a little walk with cedric to find a grocery store to buy milk for Ozzie… and our Room service tray from the night before was STILL outside our room… hm… we got directions to Whole Foods and ventured outside – and it was already hot…
we made our way back and then got ready to go to registration. We got signed in and got our schedule for the weekend. Cedric was excited to go up to the roof level for the conference daycare. I was nervous, to say the least. On the weeks leading up to our trip, i tried to remind Ceddy that when we go to Philadelphia, there will be lots of people who maybe won’t look like him, but that’s okay. So, before he went up to the daycare, i took him aside again and reminded him; “there might be some boys and girls at the daycare who look different from you – but that’s OKAY because everyone wants to be friends and everyone wants to play and have fun.”
then mom took him upstairs and hung out with Ozzie in the hotel room while he napped – and Brad and i went down to the Keynote speaker, who was Dr. Francis Collins, director or the National Institutes of Health. As he began his talk, i was pleasantly surprised to see that i was able to follow MOST of what he was talking about – it felt like a more entertaining version of Grade 10 Biology. We learned about dominant and recessive genes then he started talking about DNA and how absolutely mind boggling human DNA actually is.
He’s kind of a big deal
Then he started talking about this project that he founded called the Human Genome Project and Brad and i looked at each other… i mean, i’m not big on science, but even I’ve heard of the Human Genome project… the more he spoke the more we realized that we were listening to one of the BIG GUNS of science!!
Some of the things that i took away from his talk were that there are no “perfect” genetic specimens, that all of us carry an estimated 80-100 significant genetic flaws! So, where this comes into play, i guess, is that while they are doing genetic testing and research into Moebius Syndrome, there are also all the permutations of genetic flaws to contend with. Thus far, there is no ONE THING that people with Moebius have that other samples don’t. There’s no “Moebius Gene” i guess. and after all of the talk about genetic code and samples and whatnot – he said that even with this research, there’s no way of saying that there isn’t also an environmental component.
then, to top it all off, he pulled out a guitar with an inlaid mother of pearl Double Helix and sang a song that he wrote…
after this great talk, we signed up for the genetic testing consult.
Mom and Ozzie came down from napping and while i was signing up for the consult, Brad and Ozzie made a new friend, Vicky McCarrell – the President and founder of the foundation!
Vicky founded the Foundation after her son was born in 1990 and she was told he had Moebius. Through her work – and also thanks to facebook, the conference we attended (the 10th biannual) was the biggest one yet with over 430 people in attendance; 131 of which have Moebius Syndrome! and of the 430 people, 25% of those people were first time attendees like us!! that is incredible.
she was so gracious and friendly, we chatted right through the first seminar of the day – and had to run to our genetic consult, so as to not be late.
In the consult we gave in depth family histories, and DNA samples (Blood from Brad, Mom and I – Saliva from Ozzie) and then Ozzie had his eyes examined, because of his strabismus. The team was really great and friendly – and when they asked if Ozzie’s eye doctor was planning on corrective surgery, i told him that Yes, it’s part of the plan, but our ophthalmologist wanted to wait until we got back from the conference in case we learned anything or met any specialists. Then, the Doc running the team Dr. David Hunter (Opthalmologist-in-Chief and Richard M. Robb Chair, Children’s Hospital Boston, Professor and Vice Chair of Opthalmology, Harvard Medical School) hands me his card and says: “have your surgeon call me, and we can talk about a surgical plan for Ozzie”
SQUEEEE!!
Also, as a cool side note, while they were doing the eye exam, they asked us where we were from – and we said: “Saskatoon, Saskatchewan.” and they all started laughing and were like, “What?” I mean, we’re pretty used to people laughing when they hear where we’re from, but then they said, pointing to one of the other research team members: “ask HIM where HE’s from!” uhm… okay, “Where are you from?”
He smiled at us and said: “Melville”WHAAAT??? LOL, it was awesome. like, suddenly he was family – and we called him Saskatchewan when we saw him around the conference. Nice guy, too.
By the time the genetic consult was done, we had missed the ONE workshop i really wanted to attend, “Moebius for Moms Birth to 5” and “Moebius for Dads Birth to 5” – it would have been great to see all the moms who are at the same stage all at once. ah well.
It was time to go get Cedric from Daycare, and he had a BLAST up there. He was playing and running and just being 4 and wild and free. We came back to our hotel room (Room service tray… STILL THERE!! Brad called and complained and they said: We’ll send someone up right away) as we were getting ready to go down for supper, and i asked Cedric, just to start a dialogue: “So, Ceddy, did you see anyone at daycare who maybe looked different from you?” and he looked at me and said; “No.”
i could have cried and hugged him and sung and danced. wow. I was so proud of him. No one in the daycare looked different to a four year old, and i was up there – there was a lot of kids who had facial differences, but to the eyes of my son, everyone was the same. it was very humbling.
This is one of the only family pics that has Grandma in it, and one of the very few family shots at all. But here we are ^ at supper – we sat with a family from Phoenix, who’s little girl Chloe (with Moeibus) was just so cute and she and Cedric became instant best friends.
in fact, each time we’d come down to the ballroom for a meal, the first thing Cedric would say when we sat down was: “Where’s my friend, Chloe?”
That’s her in the pink, i tried to get pics of these kids running around, but this is the best i can do, they were fast!
one of the things that Brad and i found to be really inspiring was to see all the kids, running around – screaming, playing, laughing – being regular kids. And to see how the older kids/teens had already formed their little groups of friends they remembered from other conferences. It was pretty much then that we decided that we will have to come every year, it’s like summer camp for Ozzie – except summer camp full of kids JUST LIKE HIM, who look like him and have the same issues as him, but they don’t have to talk about it – it just is, and they can just relax and have fun being with their friends.
Cedric became quite the popular kid, too – screaming at the top of his lungs over and over again: “EVERYBODY DANCE NOW!” even the catering staff were getting into it, singing along with him…. funny. Two things people said to him over the course of the weekend – 1.) i like your hat
2.) I like your mohawk (mohawk not shown)
back up to our room and the room service tray was STILL outside our room!! this was almost 24 hours now. Gross. Brad called down again, and someone said – again… “Yes, we’ll send someone right up” – sigh. We got the boys settled down and into bed, then for the millionth time commented on how lucky we were to have Grandma there, because of her Brad and I were able to go down to the bar and have drinks with Kevin Smant and his wife Lisa and Tim Smith and his girlfriend Cassandra. I’d been reading Kevin’s blog Moebius Musings since Ozzie was diagnosed, so it was nice to put a face to the words! in fact, the first thing i said to Kevin when i met him that afternoon was: “Are you Kevin? I read your blog!” Kevin and his wife both have Moebius Syndrome, and they have two beautiful kids (who don’t). Tim Smith runs the Many Faces of Moebius Syndrome website and facebook page, as well as heads the Moebius Syndrome Awareness Day initiative. *Which is January 24th! Wear your Purple!*
I know that it’s probably like, stupid for me to say this, but drinking with them helped me really REALLY bring it all home that they’re just regular people. Ugh, i feel awful saying that, but truly – having drinks with those folks that night was probably one of the best things for me as far as imagining my son as an adult. Just regular people, in regular relationships, with jobs, and interests, and it was encouraging to hear them talk about just STUFF! like, stuff you would talk about over drinks. Thanks Tim for inviting us to join you for drinks!
Finally, it was time to go back up to bed, it was close to midnight – and when we got upstairs – they had finally taken the room service cart away…
There’s nothing quite like packing for a big trip. I made list upon list upon lists, and even made a lists of the lists i’d made. Surprisingly, i remained relatively calm – which is kind of a big deal for me. Generally speaking, i worry a lot and have a great deal of anxiety, but the stars must have been aligned because i felt pretty good.
We got up at 6 in the morning to get everything packed into the van. We got Ozzie ready and then woke up Cedric as late as possible, telling him TODAY IS THE DAY WE GO ON THE AIRPLANE!! He was sleepy, but excited.
my mother showed up at 7:30 with my dad, who was driving us all to the airport.
I hate airports. ugh. and they’re bad enough when you’re on your own, but when you’re trucking around 3 large suitcases, plus a stroller, plus carseats, plus 3 carry on bags, plus a bag of our heavy suction machine… plus an almost-2 year old, and a 4 year old… oy vey. We love Grandma. She was a lifesaver.
Our plane was scheduled to leave around 10 am, so we had some time to kill. Cedric and i spent most of that time going up and down the escalators…. over and over and over again…
up and down
…and looking out the window at the planes, which at this point were still a novelty. Before our flight, they changed our gate on us, which wasn’t a huge deal because Saskatoon’s airport is really small.
at the start of the day, he was still happy
Everyone was happy to get onto the plane, and the flight went really well. Ozzie is a great flyer, and he had a fairly decent nap on the 3.5 hour flight to Toronto… Cedric didn’t like the loud sounds of the engines, but that was to be expected. He and Grandma looked out the window as we took off, and Cedric said as we flew over Saskatoon: “Mom! It looks like a MAP down there!”
Landing in Toronto we made our way through the confusing world of U.S. Connections, going to the wrong baggage claim area, then finally locating the baggage claim and then making our way through customs. Oh god.
As we stood at the xray machines, getting all our stuff ready for scanning, Cedric decided this was the crucial moment for a full blown four-year-old MELT DOWN!!
I was sure that the security people were going to think we were abducting him. Brad picked him up and practically threw him over his shoulders, all the while he’s screaming: “NOOOO!!! PUT ME DOWN!! LET ME GOO! LET ME GOOOOO!!!”
Aside from the melt down, customs and security went pretty well and we found our gate and settled in with some lunch, only to realize… our gate had changed… again… so we packed everything back up and found our way to the new gate which was on the other side of U.S. departures.
The flight from Toronto to Philadelphia was short and sweet, almost as soon as we were in the air, we were on our way down and by this point we were all exhausted. We hired a shuttle to our hotel, and poor Cedric fell asleep unable to stay up any longer.
Mom and Cedric, Brad and Ozzie – made it to the Sheraton on 17th Street, our home for the next week
as we were checking in, we couldn’t help but notice all the little Moebis running around. And to be honest, it was a little overwhelming… kind of like, a feeling of “we are not alone” and a feeling of wonder as we’d never seen anyone else with Moebius Syndrome in real life.
The Sheraton is a very pretty hotel, with a great high ceiling and escalators going up to the Mezzanine and Ballroom levels – which Cedric put miles on throughout the week – but our experience was less than stellar.
view from the mezzanine
When i booked the rooms in February, i made a request to have a fridge and a crib in our room…. and we called again two days before we left to make sure that that was going to happen…. and when we got there: No fridge/no crib in our room. They said at the front desk that someone would bring them up. And we waited an hour, and finally Brad called down to ask about them, and eventually someone came with a fridge and when we asked her about the crib she said she’d go get it because “Oh, i guess the baby needs to go to sleep huh?” yep. please. …and then she brought a play pen – to which Brad responded with: “That’s not a crib, that’s a playpen” so she left again and did eventually come back with a small crib which did the trick.
at this point it was just about 11pm Philly time (9 our time) and we hadn’t eaten anything and we were all exhausted, so we decided to order room service….. MISTAKE!!
after we paid for the 3 cheese steaks and kids burger (which he didn’t eat) and the taxes, and the hotel tax, and the convenience charge, and delivery, and 21% added gratuity and the tip that the dude who brought us the meal guilted us into giving him… our bill was $80.00!!!!
sadly, this cheese steak was NOT worth the $20.00 i ended up paying for it.
but, it did come with a tiny army of small ketchup bottles. so, i guess that’s something.
so many mini ketchups
lesson learned. i wanted to post these pics to facebook… but… alas – WiFi service in the hotel is $9.99 per night! We could have purchased a plan for our phones to get data service for the week, but we thought – we’ll just use the wifi in the hotel…. blah. BLAH!!!!!
anyway, we put the room service tray outside the door, and called it a night.
In my perfect world, i would have been updating everyone on our trip – sort of LIVE as it HAPPENS!! This, as it turned out, did not happen – essentially because the hotel the conference is at does not offer free wi-fi to it’s patrons…. grrrr…. and as much as i love you, interwebs, i don’t love you enough to pay 9.99 a day for your service.
that would add on an extra $70 to our already expensive trip. lol
so, what you are getting now is a quick HELLO and GOODBYE from the complimentary downstairs lobby computer lounge.
This lounge would be much better if i could get alcohol service here… we’ll see…. i keep eyeing everyone sitting at the bar and thinking about a big ol’ glass of wine.
BUT I DIGRESS!!
I don’t want to say too much right now, because in my perfect world, i have a whole slew of Conference related posts that are being written – some in my head, some in my journal – and i don’t want to repeat myself, plus there’s a lot of photos to go through and organize.
but the short story long: We have had the most amazing weekend. It’s been a crazy rollercoaster of emotion, we’ve met some wonderful families, some great kids, some inspiring adults, and it’s just been so great.
Tomorrow we are going out on the town with the remaining Moebis. (I so love this term, when we checked in the lovely lady at registration introduced herself as the ‘meemaw of a moebi’ and i’ve been using that nick name ever since.) of course, phonetically, it sounds like Moby – so, i mean, maybe we were assuming, and maybe she really IS Moby’s grandmother, although i highly doubt it.
We are all heading out in a trolley (i think) and we’re going to tour the city, and historic downtown, and then end up at the Rocky Steps. Should be fun, but also crazy hot.
it is SOOOO hot here.
Anyway, like i said, i just wanted to say hello – we’re alive, having a great time, and we’ll see you on the flip side…. and to be prepared for post after post of updates. 😀
After we’d all had our chance to run to the top, we waited in line to get our photo taken with the Rocky Statue that was in Rock III (I think) – it’s not at the top of the stairs like it was in the movie, kind of tucked away at the bottom and to the side. Still awesome.
LOL i just noticed the placement of Brad’s hand. Poor Rocky.
As we pulled away from the museum, our friendly tour guide ^ was so informative and reminded me a lot of that ‘kid’ from MadTV… y’know, Stewart? (“Look what I can do”). We crossed over a bridge and entered into West Philadelphia (born and raised, on a playground is where i spent most of my days…i KNOW you’re singing it). And as we made our first turn off the bridge, we were treated to some kind of a ‘bust’ going down at a small mechanic shop, that was…erm…. awkward…. and as we drove deeper and deeper into West Philly, the more we realized that we were totally in the hood. Like, the REAL hood. Not like 20th street in Saskatoon, but like – projects. 
Part of the great thing about the Murals program is that it helps communities like these rehabilitate. Part of the process of applying for a mural in your community is being able to show that the neighbourhood wants a mural, and that the neighbourhood would continue to respect and look after the mural, and that there will be community involvement in the creation of said mural. it’s really an amazing program, and TourGuideGuy said that those areas that have murals come together with a sense of pride in their neighbourhood which is really awesome.
We got out a few times to stretch and to get a better look at a few murals, on one of these stops i took this shot of Brad and Ozzie. 
this was one of my favourite murals… this grandmother is making a quilt, that goes across this empty lot to this building where the kids are holding the other end of the quilt.
apparently this empty lot used to be a community garden… now it’s a place where police vans park, and small children throw wood chips at each other.
Ozzie had enough murals for the day and snoozed on Brad. The trolley took us back into downtown and ended at Independence Hall where the Liberty Bell resides. Unfortunately for us, Philadelphia was in the middle of a crazy heat wave, and it was sooooo hot, too hot for babies and 4 year olds. Seeing as we’re not American, and we really didn’t have any interest in the Liberty Bell, we spent most of the rest of the outing in the air conditioned Information Centre.
It was hot inside, but it was hot everywhere. We wandered around waiting for the pick up time back to the hotel, Mom got this great shot of Ceddy and i.
On the trolly back to the hotel Ozzie made a new friends. 
Back at the hotel we relaxed in the a/c and then went up to our rooms where this happened
We ordered some pizza and watched some TV and just relaxed.
i took this shot as proof that i was actually on this trip – as it usually happens, the one with the camera has the least photos. lol.
i'm supporting ozzie ♥ 