on being thankful…

I do this thing on facebook where i issue open letters to places, inanimate objects…the Universe…  it’s kinda my shtick.

The most common one, though, is an open letter to the Universe saying how much it sucks.

These generally fall around the same time that Ozzie is sick, for what i think are obvious reasons.

Today, in fact, i posted one that went along the lines of:

Dear Universe,
You Suck.

shortly after i posted it, i saw an acquaintances status about men who are jerks, and i thought, i’m pretty lucky Brad is so awesome.  Then another one about how much it sucks to be unemployed.  I’m not unemployed

it got me thinking, that i do an awful lot of complaining.  Really.  Things could be a lot worse.

I’m trying really hard, now, to be thankful, instead of angry all the time.
Thankful that i have a loving and engaged husband who does a lions share of the Ozzie related work sometimes, because he accepts that Ozzie is a real Daddy’s Boy.
Sometimes Cedric makes me crazy because he’s always in Ozzie’s face, so i’m trying to be thankful that he loves his brother so much and is not resentful towards him.

I stress out about work – but i’m thankful that i have a job.  I am SO thankful that Brad’s work has made it clear to him that FAMILY comes first, and they have been so respectful of that and so understanding of our situation.

I lost my Sh*t at work on Friday, but i’m Thankful for the kind coworker who hugged me and patted my back until i stopped crying.

I really hate the fact that sometimes we need to insert catheters into our son so that we can clear mucous blockages, but i’m so thankful that someone invented that device, and that a Respiratory Therapist showed us how to do it.

I’m thankful that Ozzie really tolerates, even ENJOYS sometimes, his asthma puffers.
I’m thankful that through some amazing people, some pretty expensive medical equipment found it’s way into our home…for free…

I hate that we have to put Ozzie through numerous medical tests and examinations, but i’m thankful for the technology.  I’m thankful that those doctors/nurses/therapists went to school to became pediatricians, or surgeons, or nurses, or therapists.

I hate that sometimes Ozzie needs oxygen to breathe, but i’m so thankful that someone figured out how to bottle it.

It makes me sad, depressed, and angry that i can’t just go and take my kids and hang out with friends, or run errands, or go to the Fun Factory, or the Play Centre at McDonalds cuz i’m paranoid of germs… but i’m so thankful for those friends who understand, and don’t get upset when i cancel last minute, or who text me several (hundred) times a week, or call me, or email…to see how we’re doing, who talk me off my metaphorical mommy-ledges, who reassure me when i’m feeling crazy, who let me feel normal for 5, 10, 15 minutes at a time…

sometimes, it makes me so crazy that our little family got handed this raw deal, but i’m so thankful that Ozzie chose us to be his family.

It’s not a perfect system, and Lord knows Most of the time it’s easier to just be so goddamned mad at everything all the time, but it’s a work in progress.

A Year in Review – So long 2012

well, i have to say that i’m in a much better place at the beginning of 2013 than i was at the beginning of 2012:

Laura: “what’s that called when you’re making a sword and you put it in the fire, then you smash it like crazy, then you put it back in the fire, then you smash it some more, then you put it back in the fire?”
Brad: “Tempering? To make it harder?”
Laura: “Yeah.”
Brad: “Yeah, Tempering.  It gets really hard… but when it breaks it shatters into a million pieces.”
Laura: “Yeah, that was last year.”

yeah, definitely in a better place.  This is not to say that last year was not hard, but i think maybe i’m harder?  All that tempering…

Now, instead of panic attacks when Ozzie gets sick or is hospitalized, it’s more of a ‘get-er-done’ attitude.  I’m more confident in my knowledge of Ozzie versus Doctors and Nurses knowledge of him.  I don’t put up with things that i find unacceptable in hospitals anymore…  this is a huge change from last year, because when you’re just learning the ins and outs of the medical system, you take what medical personnel tell you at face value often because you simply don’t know any better.

We did have a few hospital stays, and a few at home “sicks”, 2 surgeries, an MRI, numerous hearing tests, Neurology tests (all clear) lots of therapy, FINALLY getting speech therapy (YAY! HI JENN!), we went to Philadelphia as a family to the Moebius conference where we met so many amazing people and families…  also Ozzie started Daycare and Mama went back to work in the fall (holy Lord).  Full year.

Here are some highlights from last year take from my facebook statuses:

Jan 9
“we were interviewed by our local tv station today – i will post the link to it when it’s live (about Ozzie, Moebius Syndrome, and our fundraising to get to the conference in July)”

Jan 23
“This morning Ozzie took 4.5 oz of milk from a REGULAR BOTTLE!!! and then this afternoon another 4.5 oz!! Get ready grandma (Diana), time to try babysitting soon!! WOO!!”

Feb 8
“Dear Ozzie,
This screaming has GOT to stop… you are driving me crazy.
Love Mama”

Feb 17
Ozzie’s getting tubes in both ears today.  Here’s hoping surgery goes well and fast.

March 20
Ozzie loves his puffer so much, I found him inhaling deeply into an empty one.

March 23
Ozzie is working on his maniacal laughter…. i’m not sure whether to think it’s cute….or to be TERRIFIED….

March 27
This morning Ozzie successfully pulled himself up to standing at the couch!

March 28
Ozzie is colouring for the first time. ❤

March 29
So, after feeding Ozzie almost a whole bottle of pediasure, he threw up. All over me. Then he looked up at me and made the sign for “all-done”. Sigh.

April 5
Dear Ozzie
I am neither a handkerchief not a jungle gym. Please ammend your actions accordingly. That is all.
Cordially etc., etc.,
Your mother

April 16
Holding Ozzie makes me want to shave my head.

April 17
So, Ozzie finally went down the stairs, face first. As I ran to catch him I slammed my foot into a chair. Anyone know, offhand, what a broken toe feels like? Other than excruciatingly painful?

April 26
OZZIE is EATING pieces of shredded cheese!! (I thought this day would never come, he has pretty much never put food into his own mouth)

April 29

April 30
Laura loves her little adorable crawling boy.

May 2
listening to my boys laugh at each other is what motherhood is all about. thank you, boys, for making me smile.

Jun 6
Ozzie’s cool new tricks include climbing to the top of the stairs and also – Falling down flights of stairs.

Jun 7
honestly, Ozzie singing the theme to Game of Thrones is the cutest thing ever…

Jun 8
self feeding from a bottle on the couch!! Hooray!

July 17
Off to Philadelphia!

Jul 28
I just had to LITERALLY cut ozzie’s finger out of his hair. He got it tangled in his curls, panicked and kept trying to pull it out, which made it pull tighter and tighter. His hair was cutting into his poor little finger. Poor little man. I suppose a real haircut is called for now?

Aug 25
Today I cut off ozzie’s curls. He self soothes by twirling and pulling his hair, and is mostly bald on the left side of his head. This morning while having a bottle he handed me a fistful of hair. That and having to physically CUT his fingers out of his hair that one day – it was time.  Tonight while having a night time bottle he realized his hair was gone. Never heard a sadder cry. 😦  Hope bedtime goes well.

Sept 12
Listening to a half asleep Ozzie sing Patty Cake to himself in his crib at 4:30 in the morning is exactly as adorable and annoying as it sounds.

Oct 11
Mom’s back to work, Ozzie’s in daycare!!! Hold me.

Oct 26
Tonsillectomy and tongue release today.  Still waiting in pre-op. haven’t spoke with anesthetist yet – he’s scheduled to go in at 9:45, so maybe by 10:30? Seems so silly that we had to be here at 7 am when surgery is so late in the morning.

Ozzie’s tonsils were scarred. Good thing we took them out, says the doc. Admitting him overnight to be safe and to watch him. Also, Ozzie can haz morphine. 🙂

Nov 20
Finally met with respirologist today.  He was annoyed that it took so long for us to be referred to him.  Bad news, he says Ozzie’s lungs need a lot of work.  Good news is – now we have a game plan.

Nov 24
Yesterday, while leaving daycare, ozzie heard the neighbour dog barking, looked at me and said: RUFF RUFF!! and i went: SQUEEEEEEEEEEE!!!! 🙂 then today, while playing with ceddy and ozzie downstairs, ozzie said to me “Ow-boo?” and pointed at his elbow. i was like: “where’s your elbow?” and he touched his elbow and said “Ow-boo!” and i was like: SQUEEEEEEEEEE!!!!! 😀 Then, at bath time, ozzi looked at the bath, looked and me and said: “Bubboo?” and i said: “where’s the bubbles?” and he pointed at his bath. SQUEEEEEEEEEEEEEEEEEEEE!!!!!!! OMG!! Three new words in the last 2 days!!! I’m so thrilled, and so SO proud of Ozzie.

Dec 30
Day one of Operation Get Ozzie In His Own Room and Let Mom and Dad Have Their Room Back For the First Time in Over Two Years…..So far… so good.

For this year, i have only a few goals:

  • to see Ozzie walking and talking and eating unpureed solids
  • less time in the hospital
  • More time playing outside!
  • Trips to the lake!
  • Camping!!
  • Visiting Edmonton and Calgary!!
  • watching Ozzie progress and shine as the amazing happy kid he is.


Life is crazy.

stupid crazy.

but here’s something awesome until i have time to catch up…..

a little while ago, Ozzie started saying “Hahh!” (hi!) and no he says: “Hahh Mama!! Hahh Dada!! Hahh Mama!  Hahh Dada!” it’s so cute!!

Yesterday, while leaving daycare, Ozzie heard the neighbour dog barking, looked at me and said: RUFF RUFF!!
and i went: SQUEEEEEEEEEEE!!!! 🙂

then today, while playing with Ceddy and Ozzie downstairs, Ozzie said to me “Ow-boo?” and pointed at his elbow. and i was like: “where’s your elbow?” and he touched his elbow again and said “Ow-boo!” and i was like: SQUEEEEEEEEEE!!!!! 😀

Then, at bath time, Ozzie looked at the bath, looked and me and said: “Bubboo?” and i said: “where’s the bubbles?” and he pointed at his bath.


OMG!! Three new words in the last 2 days!!! I’m so thrilled, and so SO proud of Ozzie.

So – to date, here are the list of words that he can ACTUALLY speak:
Mamama (grandma-ma)
Bahbahbah (grandpa-pa)
Peese (please)
Lalala  (actual L sounds since the tongue release, more on that later)
Unga (Yoda)
Hahh (hi)
Dada (Brad waited SOO long to hear him say that.)
Up! (complete with ‘p’ sound)
MMMMM!!! (mooo)
BIV (Biv – ROY G BIV is a song by They Might be Giants)
Ow-boo (elbow)

Philly Trip Day Five: Sights! (image heavy)

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.

getting stronger!woot!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.

Philly Trip Day 4: Last day of the Conference

Sunday morning, after we had eaten breakfast and Ceddy was tucked away for the last stint of daycare, I found my way to the Internet session that i was told i should attend.  It was pretty good, they were talking about using social media and how sites like MySpace and now Facebook and Twitter have really helped the Moebius community to connect.  Then they passed out a paper with some sites of note, including a list of blogs – and there was my blog! Listed among the blogs!!  My mom was so proud, ha!  it was cool, i kind of felt, very mildly, like a blog rockstar.  HA HA HA
After the Internet session, i attended the recap of the Moebius Moms group, which i found to be very enlightening, and it made me wish that i had been able to attend the baby session.

After lunch, the closing speaker was the very amazing photographer Rick Guidotti.

He had been wandering around the conference taking pictures of families and individuals.  If you have a few minutes to watch his TED talk, above, you’ll see why he’s so amazing.  In fact, he gave THIS EXACT talk.  At the end of his speech, he played a slideshow of photos he’d taken over the course of the last few days.

It’s awesome to think that our son has been photographed by someone who photographs super models!

The rest of the afternoon was spent saying goodbye to our new friends and making plans to see them all again in 2014 at the next conference in Maryland!  (Which means we will be fundraising again…. wink wink).

The Fun NEVER stops!!

I have been gone for five days. I went to visit a buddy in Vancouver, then my brother in Victoria.

The day before I left Ozzie started feeling kinda warm. It wasn’t a big fever, only like 99.3 or so. So we kept an eye in it, gave Advil when he needed it, and I flew out thursday afternoon.

Over the course of the weekend, brad started feeling sick. So we assumed was Ozzie had was a virus.

But then his glands got so big.

Brad took him to the clinic, and it turns out that both his ears are infected. So the doc gave a prescription for antibiotics. Poor Ozzie had a vital throat thing, plus war infections… Then he stated getting mucous. Snotty face.

Which means suction. And no sleep for brad. This morning he sent me a text that he was taking Ozzie to the hospital.

I’m still in Victoria. I’m flying out tonight. I tried to get my flight changed to an earlier time to come home sooner, but there weren’t a lot of flight options. And it would have costed me over $400 to come home 4 hours sooner.

Meanwhile, Ozzie was admitted. When he got there his sats were 92 on 2L of oxygen. 92 is really low for 2L of oxygen, which is kind of a lot of oxygen.

They did a chest xray, and it’s pneumonia. Again.

They’ve put in an NG tube, and he’s on oxygen still.

So, I’m writing this from the airport – when I arrive home at 1:00 tomorrow morning, I’ll be heading straight to the hospital to take over so brad can get some much needed sleep.

Philly trip Day 3: Conference day 2 (confused yet?)

Part of the hardest part about the conference was getting to breakfast in time.  Breakfast ends at 9 am which is 7 am time for us, so that means if we wanted to eat we had to be up and dressed and downstairs by 8:30 at the latest (6:30 for us) – we almost missed breakfast both mornings….

Saturday morning we had the pleasure of sitting with Jacob Licht (who is a board member) and his family.  His daughter has Moebius, and as we got to talking my mother pimped me out; “Laura writes a blog about Ozzie!” (Thanks mom)  SO – he says he’s moderating a session on Sunday called Moebius Syndrome and the internet, and that i should come to that.  So i say i will.

Cedric went on his merry way to Daycare, and Brad and i looked at the schedule to see what we wanted to attend.  We ended up catching the tail end of a session about Pediatric Opthalmology – but i have to admit that a lot of it was over my head, and some of it was people asking specifically about the eye surgeries their children have had.  I was hoping to learn about Strabismus surgery, as that seems to be on the horizon for Ozzie at some point, but either i missed that part – or my coffee hadn’t quite kicked in yet.

The next session we attended was called: “Oro-motor Basics for Children with Moebius” which was awesome!!  Kids with Moebius often struggle with the development of jaw, lip and tongue movements necessary for safe feeding and standard speech.  I know that we have been worried and extra cautious about Ozzie’s feeding – and while we have been cleared by our Occupational Therapist to try small finger foods because of his lip and jaw movement, i’m still not convinced that he can handle the swallowing aspect.

Renee Roy Hill, MS, CCC-SLP led the discussion – introducing us to Talk Tools and the techniques used with those tools – it all seemed extremely encouraging, and we left the workshop feeling like eventually Ozzie would be able to drink from a straw – which would be so awesome.  And eventually Ozzie will be able to eat everything we eat – which will be SOOO awesome.  He is SO interested in what we’re eating, and i feel bad that i can’t just let him try to munch on a french fry…

my beautiful boyAfter lunch we went to another session on Managing Feeding Issues and Swallowing Issues in Children with Moebius – which was not as helpful as i had hoped it would be.  Essentially, the woman was talking about infants, and Ozzie was already doing the things she was talking about.

At the coffee station during the coffee and tea break – i heard one woman talking with some people saying… “Canadian…..Canadian……Canadian….”  so, i popped my head in and piped up with: “I keep hearing ‘Canadian’ over here!” then we met the greatest family from BC – and as we were all introducing ourselves to the Fitzgeralds, John holds up a brown paper bag and asks us: “Do you want some Bailey’s in your coffee?” soooo tastyHECK YES!!  So, he poured in a generous helping into our fabulous hotel coffee – and…Oh my, it made the coffee soooooooo good.

So, John and Lourie Fitzgerald are wonderful, and they adopted us into the Moebius Canucks with open arms.  Their son is 12 (i think?) and it was so great to hear them say YES the first part was hard, but it gets better… and their son was a fighter – and they said their son’s motto is: NEVER GIVE UP! and they said how he would fall down, but he’d get back up – he’d be PISSED but he’d get back up.

They were just so down to earth and wonderful, and it made it a little easier for us to imagine this life ten years from now.  To imagine Ozzie running around with a gang of crazy hooligans causing havoc….

The next session we went to was called: “Moebius Syndrome: Triumphs Through the Years” and it was moderated by Kevin Smant, who Brad and I had had drinks with the night before.  😀  The panel consisted of adults with Moebius who were sharing their stories – about growing up with the syndrome, about the challenges they’ve faced and the way they’ve overcome them.  It was really inspiring!  But one of the best parts was when Christa Trelenberg spoke.  She began by talking about how she grew up and how she had some trials – and then she dropped out of school – but then went back and got her GED and then went to S.I.A.S.T.

Brad and i looked at each other… is there a different SIAST that we don’t know about?? So, she kept talking about how to got a job at the Pasqua Health Region… and she lives in REGINA!!!!


We went all the way to Philadelphia to find out about another Saskatchewan person living with Moebius Syndrome!  We met with her on Sunday afternoon and introduced ourselves… and she was excited to meet us – because…. she saw our interview on CTV and that’s what led her to the facebook group, which led her to the conference which led to her speaking in the panel!!! Amazing!  It was truly amazing to hear that progression.

In the middle of that session, i had to duck out to go to my appointment with Danielle Spencer who was doing interviews for her masters.  It was called:  Moebius Syndrome Stories: A Qualitative Narrative Research Study.  Essentially, she was interested in the medical narrative of those living with the syndrome and those raising kids with the syndrome.

From the consent form: “The purpose of this study is to better understand the stories people use in describing their experiences living with Moebius Syndrome in order to improve communication with healthcare providers, teachers, friends and others…. The knowledge gained from this study may be of benefit to the Moebius Syndrome community as it will add to our understanding of communication between individuals, family members and healthcare providers”

It was interesting to be recorded on camera, talking about how it feels to be the mother of a child with Moebius.  She didn’t want to know anything about his medical histories, or any of his “Moebius Things”, solely how it felt to be me.  To imagine him growing up, and then she asked me how i felt about him going to school.  It made me stop, i got emotional.  i said “All of Ozzie’s medical stuff, surgeries, hospital stays – whatever.  we can deal with that. It’s doable.  But the one thing that worries me above all things is when he leaves the safety of my home and goes to school – because kids are mean.  And the thought of some mean kid hurting my baby by saying he looks weird, or that he’s a freak, or anything that will make him feel like he is LESS THAN will break my heart.  Because to me, he is perfect.” (Ugh, i’m teary even writing that, remembering the interview)

We missed the next session of the day because we were too busy chatting with our friends from Ontario (Shout out!! HELLOOOOOOO Caroline/Andy and Jake!!)  I met Caroline here, on my blog.  she sent me an email when Little Jake was diagnosed, so it was really awesome to meet face to face!

Ozzie and JakeAren’t they just the cutest ever!?!?? i think so.

After all the days sessions, before supper – they rounded up all the Moebies under 18 and did a group photo.  I think Vicky said that this was the first time they had to split the group photo by age, because of the number of attendees! YAY!  Anyway, that went exactly as smoothly as you’d imagine – but here’s the final result:

Moebius youngunsHail Hail! The Gang’s all here!

After the photographer got the shot, there was a very long wait to get into the ballroom for supper.  Cedric was back from daycare with grandma, with his face painted – and i was told they were learning karate up there… oh my.  He was not interested in waiting around visiting like we were, so – he and grandma went up and down the escalators… over and over and over and over….

when we finally were allowed in, we had supper – followed by a Moebius Talent show.  It was so moving to see these kids up on the floor, dancing, tap dancing, doing ballet, skip rope, one kid did a great magic show – another sang and played guitar, a few other girls sang solos… i’d be lying if i said that i wasn’t in tears for a majority of the talent show.  Dammit, these kids can do anything – and one image that will be permanently etched in my mind is this beautiful little girl maybe 7 years old, with wild red hair and a trache – dressed in soft pink leotard, doing ballet to “Just the Way You Are” by Bruno Mars.

Each time she would do her sautés, her balance would waver, and her pirouettes left her stumbling as she tried to regain her equilibrium.  But she never gave up, she kept trying each move until she got it… and as the song says: “You’re amazing, just the way you are” – each time i hear it now, i think of her and her perseverance…and it makes me cry.

grumpy faces all aroundAfter the talent show there was a dance, and Brad took Ozzie upstairs to bed while Cedric and I danced the night away… or at least until 9 o clock.  It was a long and exhausting day with another early start in the morning, so we got the boys to sleep – then Brad and i went to bed with our books, calling it a night.  And if you’re still reading after this long post, you’re hard core! ❤

Philly Trip: Day Two, conference day one

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”


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…

Philly Trip: Day One – In which we travel…. a lot

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

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.

Ozzie and DadThe 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.

stay tuned for more updates.