On Giving Myself Permission

It’s time to be brutally honest, here.  Having a child with special needs and/or delays… is hard.

Not every day is full of victories.  Some days are full of mom and dad just counting down the hours until bedtime.

Sometimes dealing with your day means letting your child stare at an iPod because it keeps him happy and occupied so you can load the dishwasher, or drink another cup of coffee, or have a grown up conversation with an actual adult.

Sometimes i don’t visit friends because the prospect of packing up my children and getting them organized to go out is too much work, because the idea of having to carry around my 28lb child already makes me exhausted, because having to fight over everything with the older one seems like more trouble than it’s worth.  Sometimes you let the children watch tv instead of playing outside because you just want the little one to WALK ALREADY and you’re tired and even though you feel like a terrible parent, you eat chips at salsa at 10 am because it’s generally frowned upon to be wasted when caring for small children and emotional eating is better than emotional drinking at this point.

The worst part is that none of this is their fault.  The worst part is that even though you KNOW this, sometimes you feel like it is their fault.

Having kids, in general, is hard.  Watching kids who are the same age or younger than Ozzie run around and play and skip and jump and talk and eat french fries and be independent is really hard.  A friend of mine also has a child with some special needs… and sometimes she is jealous of the things that Ozzie can do.  She reminded me that sometimes it’s okay to cry and to feel like you’re doing a shit-poor job of parenting… as long as it doesn’t last forever.
It’s okay to be sad, or tired, or exhausted.  It’s okay to tell someone, they aren’t going to think you’re a terrible person, instead maybe they’ll just think that you are on the brink and need support… and it’s okay for us Special moms to NOT be super heroes all the time.

This is a hard lesson.  One i suppose i need right now. Days like today are few and far between, but they are never easy.

update:
Sometimes, i have amazing friends, and they bring me cakes. ❤
cake

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these days

This has been a terrible winter.

it seems like we’ve been sick at our house since December, without much of a break in between bouts it’s easy to be all like: “WHAT THE HELL!?”

IMG_5023

My little hipster Ozzie (these are play glasses)

I feel like i’m at the point where i can handle kids being sick better than before, and that’s really great.  What i’m not so good at handling is the stress that accompanies all those illnesses.  Since December Brad and i have taken turns calling in sick to watch the kids.  several times Brad has gone to work in the evening after i get home from work and then we don’t see much of each other.

Ozzie was scheduled for a bronchoscopy at the end of January, but it had to be rescheduled because Ozzie was too sick to proceed.  A Bronchoscopy is where they insert a camera into the lungs to look around.

Progress wise, it seems that ozzie has gone backwards – he was standing up regularly and even trying to walk… he took his first steps on New Year’s Day.  But now he has no interest in trying to stand or walk.

As far as speech goes, he is learning new signs and words every day.  He still will not make an “eee” sound, or an “ih” sound, instead he closes his mouth and makes those sounds at the back of his throat with his nasal passage.  I’m not sure when or if he’ll be able to create those sounds.  if it’s a physiological thing or not

with all these illnesses, we have not been to therapies since January…

i’m trying to take everything as it comes and not panic about things that i can’t control – like what will happen when it’s time for Ozzie to go to Preschool or Kindergarten.  I’m trying not to stress over things and stay in the present, but it’s a work in progress.

These days i’m trying to remember to be thankful for my amazing family.  both immediate and extended.  I’m trying to remember to find gratitude.  These days.

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!!!!

WHAAAAAAAT???

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! ❤

Goodbye 2011

Happy New Years

A very festive bottle of New Year's Eve wine, it's empty now.

To say that the last year for us has been a little trying is putting it fairly lightly. I spent a bit of time this morning re-reading entries on this blog.  And while i did post a few times about some of the good points of this year, it seemed pretty bleak, to be honest.

This morning, Brad and i were talking about 2011 and i said: “Thanks for going through that year with me.” he said it was his pleasure and that there were more good times than bad times.  True, it’s just that the bad times are easier to remember.  which really sucks.

With our boys safely tucked into bed, Brad and i had a quiet New Years Eve listening to records and playing Scrabble. It was perfect.  Brad kicked my butt 2 outta 3.  There will be a rematch… oh yes, there WILL be a rematch.  (watch yo’self!)

Seeing as this is the first day of the new year, its fitting then to give you a bunch of random tidbits, in no particular order, of twenty-eleven.

  • hey brad, if you could describe 2011 in one word, what would it be: “Over?… Strengthening, Intense”  Okay, so those are a few words.
  • A conversation just now –
    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.”

this year we met the wonderful folks at Leven’s Coffee Company and we’re pretty close to reaching our goal for fundraising for our trip to Philly in July, thanks largely to Marie and Aaron and their kindness and generosity.  (They are opening soon in their new location, i’ll post when that happens so you can go check them out!!)

My friendship with the other NICU moms i met when Ozzie was born has strengthened – we have a special bond, we are soul sisters now.  Love you guys.

Our little family unit has been overwhelmed by the love and support of our respective extended families.  I can’t tell you how many times my mom has dropped everything to come and help with the boys, not just when Ozzie was sick.  But also to help me clean my house when it’s at the point to complete and utter chaos.  Her and my dad also would take Cedric without question when Ozzie was hospitalized, and between them and my brother and his wife and Brad’s mom and dad and his brothers’ families – we knew that Cedric was safe and in good hands surrounded by people who love him, when we couldn’t be with him.  I’ll never be able to thank you all enough for that, for taking Cedric into your homes and comforting him when he was scared and confused and unsure why he couldn’t just be at home with us.

Also, my wonderful mother in law has done more loads of our laundry this year than i really care to admit.  So many times i would come home to find baskets of clean clothes, neatly folded, sitting by the front door.

New Year's Eve 2010 - Ozzie 2.5 months old

This past year Cedric has given me an amazing gift.  I realized one day as he played with his brother on the floor that Ceddy is the one person who sees Ozzie as truly perfect.  He doesn’t look at him through the veiled eyes of knowing his brother is ‘different’ from other babies.  He doesn’t think his face looks ‘funny’, he’s just Ozzie.  He helps me to remember that Ozzie IS perfect.

Ozzie has changed our lives, in more ways than we can imagine.  But the most prominent being that both Brad and I are having to learn a new level of patience.  Like, a whole new WORLD of patience.  But through this year, Brad and i have found new strength in each other.

New Year's Eve 2011 - Ozzie 14.5 months old, Cedric 3.5 years

No, this year has not been easy.  But there’s a quote that love that i feel really sums up this year for us.

“A gem cannot be polished without friction, nor can a man be perfected without trials.” Chinese Proverb

So, with this in mind, we are on our way to perfection.

Here’s to 2012, and thanks for reading!

Love Laura

 

In Store Fundraiser at Leven’s Coffee Company

Fundraiser info

i’ve said it before, and i’ll say it again – but ye Gods bless Marie Tupper and Aaron Green… those two and Leven’s Coffee Company have gone above and beyond – helping us with our fundraiser for our trip to the Moebius Syndrome Conference in Philadelphia next year.

Back at the beginning of the summer, when i first met with Marie and Aaron about doing some fundraising with them – I went in expecting to get a few sign up sheets to pass out to my friends and family, but what i got was totally unexpected.

First of all, you need to know this about me.

i don’t like asking for help.  Not really.  I like to think that i’m strong enough to do things on my own…when Ozzie was first hospitalized after he was born (for 30 days in NICU and 10 days in PEDS) my family kept offering to help… it took an immense amount of letting go for me to allow my mother in law to come and do our laundry on a regular basis.  It’s a matter of pride… and also, uh… that’s my underwear? lol

Secondly, i sometimes don’t know how to express my gratitude.  But i feel it.

So, when Aaron and Marie sat down with me and told me that they were excited to help out my family, who they only just met, but they wanted to make a ‘special blend’ for the express purpose of this fundraiser… complete with its own special packaging – and not only that, but hell, let’s sell it in store for the full year until you go on your trip – it felt like i was sucker punched in the gut – but in a very good way.

it was all i could do to smile and nod and i’m pretty sure i said: ‘awesome’ about a bajillion times.

When i drove away from Market Mall after that first meeting with them, Ozzie in the carseat in the back sleeping away…. i thought to myself: “Laura, Ozzie’s gift is that he lets people give of themselves….. so GET OUT OF THE WAY and let them do it.”

I cried on CIrcle Drive all the way from Preston to 22nd Street.

So – now here we are.  Ozzie turns ONE on Sunday.

To celebrate, (the are so frakkin’ wonderful) they are having an In-store fundraiser at Levens Coffee in Market Mall on Saturday and Sunday – October 29/30th.

Please come to the store!  $5 from every pound of Ozzie Blend coffee sold will go directly to our family. Leven’s is also donating:

$65 from every 1 year coffee subscription sold
10% of coffee to-go sales
50 cents from every Hot Racks “cake shot” sold

See the facebook event page here

Even if you don’t drink coffee, i’m guessing you might know someone who does… A coffee subscription would make a great Christmas present to a coffee lover in your family – or buy a pound of coffee for your kids’ teachers.

Thank you, THank you, thank you to Marie and Aaron and Levens Coffee Company.

We heart you guys big time over here.  ❤

lookin' dapper as always

Teething Blues

Y’know, i’m really trying to make sure that this blog is not all ‘woe is us’… but just for a minute, can we ‘woe’?

Every parent who’s ever gone through the teething process knows…TEETHING SUCKS!

Feverish, cranky babies who get the poops and the bum rash and chew on whatever’s around them… and drooooooooooooooooooooool….

Yeah.

Let’s talk about drool.

::throws her hands to the sky and screams:: “CURSE YOU DROOL!!”

Imagine, for a minute, that you can’t really swallow your own saliva.  Go ahead, try it for a bit – i’ll wait…

yeah, it’s pretty gross.

This is what Ozzie deals with on a regular basis, add extra saliva from teething and what do you have, besides a lot of wet shirts?  Choking hazard!!

Because Ozzie’s life will include obstacles like teething and general sniffles – which brings things like drool and/or snot or any tiny bit of added mucous or moisture, we have been equipped with a suctioning machine which looks similar to this:

with this bad boy we are able to ram insert a very small tube down his nose or throat so we can suction out any phlegm or mucous or extra spit.  If you would have told me five years ago that this type of procedure and machinery would be part of my daily life, i would have laughed in your face.  I was a Music Major in University…. sigh.

The suction machine has been a life safer, figuratively and quite possibly literally.

Today, after suctioning a very drooly and cranky Ozzie, Brad said he couldn’t wait for ‘this stage’ to be over…. the stage of paranoia where we worry every minute that he is going to choke or aspirate (which means inhaling a foreign substance into the bronchi or lungs, just FYI).  I replied; “yeah, it would be nice if we could enjoy his baby stage a little more”

And the teething process goes on…

He has TWO that have cut through – however, it’s one on the bottom and one directly above it on the top… which he loves to grind together…. which makes his mama want to gag every time she hears it (which is all the time, every day – in case you were wondering)

WOE is us.  Woe.

But on the plus side: He had his check up with his Pediatrician yesterday, and she is very impressed with his progress developmentally – and with his breathing (the last time she saw him, he was on Oxygen in the PEDS Ward with Pneumonia).

So that’s what’s up with us… keep on Keepin’ on, baby.

The aftermath

Truth be told, i spend a lot of my time these days in a blurry haze.

There are things that i can control, and lots and lots of things that i can’t – and it would appear that control is something that is very important to me.

I may not have discovered this were it not for Ozzie.

When i get the chance to interact with adults, i honestly can’t remember how to have rational thought based conversations that don’t end in: “Because i’m your mom and i’m the boss”

Do people still have those?

Conversations?

The doctor is IN

I know that eventually this will all be just a memory… Just tonight while getting ready to eat supper i looked over at Ceddy who was sitting on the kitchen counter talking to Brad about his trip to the Backpack store where he got his NEW!! BACKPACK!! and i thought: “I can’t believe that he used to be so tiny once”

Every day is kinda like the day before, and it doesn’t take much before you realize that we’re almost half way through the year… sorry, someone had to say it. With the outing of our baby with Moebius – it’s been sort of a bleary fog of answering questions and kind emails of encouragement… which all have the same theme… “If anyone can handle something like this, it’s you guys” What does that even mean? it’s confusing to us, because there really isn’t any other option. We deal and we cope because we MUST deal and we MUST cope. It’s as though it’s implied that if we weren’t us we wouldn’t be doing everything we could to help our baby.

it’s just a weird thing to say

i'd like to know where you got your medical license...

So, i pretty much just take each day as it comes because that’s all i can do.  I’m not brave, or strong, or capable… I’m not “hangin’ in there”…i’m numb.  And the numbness makes it bearable.And the only thing that gets me through the hard days is the knowledge that time keeps marching on, whether i want it to or not…i have to remind myself that the shitty times won’t last forever, but neither will the adorable, cute, or happy times.  The only thing i can do is live in the moment….Easier said than done.  But i’m trying.