My Oxygen Mask

"Put on your own oxygen mask before helping anyone else" - the old airline safety standard that we've all heard many times.

But this time, I read it in a different context. There it was on a blog I follow religiously as a metaphor for a mother taking care of herself.

It really resonated with me, and over and over in my head I kept repeating it: "Put on your own oxygen mask before helping anyone else".

Makes a lot of sense doesn't it? But do I generally do this? No.*

It's good timing to have this little mantra on repeat, since I have vowed that 2012 is the year to finally take better care of myself. Ever since the big C - no not C(erebral Palsy), I'm talking C(ancer) - I have been evaluating things, in particular, the toll stress takes on my life and how it is affecting me mentally and physically. So in order to reduce stress and increase happiness, I'm making moves to have some me time.

Baby steps (funny analogy to use in this house since no babies are actually stepping): A yoga class here and there, walks, outings with friends. Little things to give me a temporary break from my own head and the insanity that resides there.

Ok no, I'm not insane. Nor am I clinically depressed or riddled with any more anxiety than normal. I'm not even unhappy, per se. But I am certainly not at my optimum.

And I'm trying not to complain - it's ok that things are hard sometimes and I know I'm by no means trying to be super mom. Life is hard for all of us. But I know that if I'm going to do anything more than just get by, I need to start taking a break to top up the reserves. Thankfully, I have some special people in my life who have thus far forced those breaks on me - who steal me out for a quick coffee or who have the guts to call and say "You didn't look/sound so great today, is everything ok?". Those people have known me well enough to step in and put my oxygen mask on for me when I've forgotten to do it myself.

But now I realize that it's not luxury or selfishness to do things for me, it's a necessity. I need to be at my best to help my whole family be at their best. If I am a bundle of nerves and stress, I project that on to the kids. They need to be surrounded strength and positivity and a belief in their abilities, and what better way to do that than to follow the example set by their parents.

So ya, oxygen mask on first, I finally get it. Time for this mama to start breathing.

*Don't worry. If our plane was ever going down I would follow instructions. Although I would probably be the hysterical passenger the stewardess would need to slap, so maybe not.

Those Days

Most days, CP is just a small part of us. Sure it causes extra challenges and worries, but it is not something I think of as an entity in and of itself.

But then there's those days where for no good reason, CP takes life and becomes a "thing" that is the recipient of my anger and fear. On those days it is a black cloud that hangs over me, directly over my shoulder, whispering horrible, spirit-crushing things in my ear.

I want to yell back that I am stronger - we are stronger - and it is not going to break us. Instead I get frustrated, cry a bit, eat too much, then do something incredibly productive (hello spotless house!) to take my mind off of it.

At the end of those long days I go to bed praying that tomorrow things will be back to how they should be, and usually they are: CP-the-monster goes back into hiding, and CP-the-very-small-part-of-us quietly carries on.

Just Like Twins

At Rio's skating lesson I overheard a mom talking about how busy she is (blah blah blah - aren't we all). She then went on to say her kids are 18 months apart so it's "just like having twins".

Pardon me? Did you just say that your kids that are EIGHTEEN MONTHS APART, not 18 minutes, or 18 seconds (which is probably more like what mine are) and you think that's just like twins?!

Now don't get me wrong, I can imagine having kids 18 months apart is very challenging, but lady, I can assure you it is nothing like having twins. I'm not trying to have a contest here - whether you have one child or quadruplets, it's all hard. But don't try to pull the twins card when you know nothing about what it's like! Because I have the twins plus Rio, does that mean I know what it's like to have triplets? Hardly! Admittedly I've been a little bit bitchy touchy the past few days, but I was literally vibrating, having to stop myself from turning around and putting that mom in her place.

The funny thing is that while I was listening to this, I was watching the mom of the identical twins in Rio's class. At times she looked exasperated and frustrated (as I'm positive I look often times in public), but she was equally patient and proud times two of her little skaters. You see having twins isn't just doubly hard, it's doubly good and you don't know that unless you  have some inside intel.

So ya, don't ever claim to know anything about having twins unless you do. Because you want to know what is "just like" having twins? Nothing. The only thing just like having twins is actually having twins.

It's Not Obvious

I think it's fairly evident I was not pleased with our appointment the other day, for various reasons. I'll leave Nolan out of it for the moment and concentrate on Asher.

Without getting into too many details, I will just say that the word obvious was far overused - in terms of things that are apparently "obvious" that Asher will NOT be able to do.

Umm, pardon? The kid is 2. TWO. Not 10, or even 5. TWO. Sure, some things are possible, or even likely that he won't be able to do, at least not in the traditional sense. But how is anything obvious about his future at this point, other than it is obvious he will have to work harder than most of us!

I was upset, I still am, but it has just strengthened my resolve (eww, sorry, I sound like George W. Bush when I use that term) to prove everyone wrong. Or more like to prove RIGHT the 99% of people who actually BELIEVE in Asher.

Obvious - that word better NEVER again be used in reference to Asher (or any of my kids for that matter) unless they are speaking about how obviously sweet, smart and beautiful they are!

Conversations with a Brilliant 5 Year Old

Rio: Mama why are you crying?

Me: Because sometimes I don't like taking Asher to the doctor.

Rio: Why?

Me: Because it makes me sad to talk about all the things Asher can't do.

(Rio hugs me)

Rio: Ashy doesn't need to walk if he doesn't want to. Ashy is how he is and we love him. We want him to walk but if he doesn't, that's ok right mama?

(Rio continuing to repeatedly hug and kiss me and tell me she loves me, while also sweetly pointing out "your [thyroid] scar is blending into the skin a little").

---
Oh Rio, Ashy is perfect just as he is. Thank you for reminding me of that.

You wonder why I am strong? There's your answer. Three amazing little people make me strong.

(Edit: We have never told Rio Asher might not walk, and we have also never said anything remotely along the lines of "he is how he is and we love him". That was 100% her wisdom. Aren't kids amazing?!)

Neurology Follow Up

Today Asher saw his neurologist. After the snow storm last week cancelled our appointment, we were lucky enough that she had some cancellations today so they could get us in right away. I thought this was a bit of a "nothing" appointment today because she is not his primary doctor and he hasn't yet had his MRI, but still it's nice to check in with all of his specialists every once in a while.

Predominantly we talked about the MRI and whether or not we should do it. She put no pressure on us, reminding us that NOTHING is going to change as a result - his brain is damaged whether we have a picture of it or not.

But of course I cried, worrying that the results are going to show us that the damage is much worse than we anticipate, or that it is going to show damage to a cognitive area when we have been thus far convinced he is cognitively fine. She reminded me that the MRI is not mandatory and if I'm not ready then there is no reason to pursue; I assured her I will never be ready so we should proceed now and she sent off the requisition. I am guessing it will happen in the summer.

We then talked about the future and Asher's abilities and disabilities, along with Nolan's inability to walk, and needless to say those conversations don't leave me feeling very positive or happy. So for this being a "nothing" kind of appointment, it really kind of sucked.

A bit too early for a glass of wine, so I guess I'll have to settle on a tray of brownies. Thank goodness for chocolate.

Party Girl

Today was a big step in my little girl's life: I dropped her off and left her at a birthday party. The birthday party of a boy in her class, whose parents she doesn't know.

Now she has gone on the odd play date without me, but only to good friends' houses where she knows the moms, dads, and siblings very well. Prior to today, she had only been to one school friend's birthday party, and that was her preschool friend last year. I stayed with her at the party and she was also very familiar with the little girl's mom, yet she was still terrified and refused to participate in any of the activities.

So when she received this invitation I didn't know how it would go down. I explained that now that she is in school, the mommies and daddies don't go to the parties anymore.  I told her I suspected she was the only girl in her class that got invited (her class has 12 boys and 5 girls and although two of her best friends are girls, she is definitely one of the boys). I made sure she understood it all, and when I told her she didn't have to go if she didn't want to, she she assured me she did. I was shocked.

I hesitated RSVPing before I asked her a few more times. Yes, she was still sure she wanted to go. So I emailed the little boy's mom, telling her that although Rio said she wanted to come, I was worried she would back out. The day I went shopping for the present I checked again: yes, we were still on. Finally this morning, I confirmed one last time. Yup, still excited. Raring to go in fact.

We pulled up to the house and she didn't hesitate. We walked in the front door and were greeted by mom, dad and older brother, happy to see her. She had a look around, faked a smile, and then she panicked.

Ok panicked is an overstatement, but that's when it hit her. She realized her coat was off (and mine was not) and she was in an unfamiliar home, surrounded by a family she did not know. There were little boys everywhere, with no other girls in sight (I was right that she was the only girl to make the cut). She hid behind my legs, terrified.

But then slowly she started to come around. The mom was quick to understand that the way to Rio's heart is through arts and crafts, so immediately set her up at the craft table and the boys soon followed. With a blink of an eye she settled in and was in her happy place with a paint brush in hand. She waved and smiled and I knew that it was ok to leave.

Two hours later when I returned, she was in the middle of a dog pile of boys. Both parents assured me she had been 'amazing'. I had to call her name several times before she even realized I was there. Yes, she was thrilled to see me, but also equally sorry to leave her friends. With a polite thank you she took her goody bag and we were on our way home with her rattling off details of cheese pizza, a Super Mario ice cream cake, and a scavenger hunt.

All in all the party was a success and marked a huge milestone for both of us - letting each other go. I am so incredibly proud of our shy girl who is undoubtedly coming out of her shell.

Today a birthday party, tomorrow a boyfriend, the next day university. My heart isn't ready for this whole growing up deal.

Snow on the Brain

Ok today's title is slightly more creative. Yes, snow is on the brain because we had a massive snowfall last night (by Victoria's standards anyway - we got 10+ cm at our house). But also, Asher had to miss his neurologist's appointment today because we were home bound. So get it - snow on the brain. I'm pretty clever like that aren't I?! (This is where you nod in agreement.)

Snow and a New Bedroom

The snow and the new bedroom are not the slightest bit related, but they both factor heavily into the contents of this post. Not my most creative title, I realize. I tried to come up with something witty but no such luck!

It was a busy but fun weekend around these parts. Jordan and Rio went for their first ski trip of the season and Rio had a blast. Apparently it was freezing so the only photo of her is trying out the new "magic carpet" beginner lift. Only a few times though (had to give it a try - it's brand new this season), before getting on the real lift and tackling some serious runs. 

The boys and I had a fantastic weekend on our own. Because I was left without a car we were pretty much home bound (other than the beautiful sunny, snowy walk we took Sunday morning) so I planned a bunch of projects for around the house. As always, the boys were little stars, picking up and moving from room to room with me so I could work on whatever the organizational task at hand was.

Our big project for the weekend was a re-do of Rio's bedroom. For months we have been talking about moving Rio's single bed to our rec room and our double bed up to her room (her room is big and the rec room is getting crowded, so it worked better for both places to make the switch). Rio was very upset at the idea - for some yet unknown reason. I decided that the best thing to do would be to surprise her with it so she couldn't protest. 

It was a big undertaking. Beds to be moved, rooms to be cleaned, and a whole lot of new decorating to make her room extra special. Luckily I had a friend over to help me and it felt like Trading Spaces. We were rearranging furniture, hanging art in different places, and I even made Rio a fancy new pillow. In the end it looked absolutely adorable. I was so excited! But as it came closer to home time for Rio and Jordan I started to get nervous. What if she hated it? She was coming home from two days of skiing, close to bed time, and likely exhausted. That could make for a very grumpy girl.

It turned out that my excitement was warranted and my worry was for not. She absolutely loved it, especially the new bedding I had bought right under her nose last time we made the trek to Ikea. She told me over and over how great it was and how happy she was and when I asked her why she didn't want the bed to move in the first place, she said she was scared she would have to have the ugly grey duvet that was on it downstairs. Kids are so funny, the things they get in their heads. No, the old duvet cover got tossed in the donation pile and she got lovely floral girlyness instead!

She is back to school today and we have more snow than we bargained for. We had to run out and get her new snow boots today, as unbeknownst to us, her old ones don't fit her. Sketchy parents had to send her in gumboots today, and unfortunately the only boots I could find at this late winter date were a bit big. Oh well, more room for socks! At the moment I am trying to decide if I go get Rio from school early, before Jordan goes to work, or if I try to brave the snow with a double stroller at the actual end of day. Either way, I think we're in for some snow play after school! Another baby eagle perhaps?

Help Give Amelia a Kidney

We believe Asher does not have a cognitive disability, but we can't know for sure. What we do know for sure is that he has a physical disability - a pretty significant one.

Please read about Amelia, a little girl who needs a kidney transplant to save her life. But she might not get it because she's been deemed MENTALLY RETARDED and therefore not worthy of the transplant. Yes, you read that correctly: not worthy of a life saving transplant because she has a cognitive disability.

Anyone with a ticking heart should be truly appalled at discrimination against ANY disability, but I can tell you that as a parent of a disabled child, it renders you speechless and sickened. My heart is broken for her family and I am stunned that in the year 2012 this could possibly happen.

Please, take a minute to sign the petition to the Childrens Hospital of Philadelphia to allow Amelia to have the transplant she needs.

What if it was this guy being discriminated against for a life saving procedure?

Sing it, Raffi

My kids are obsessed with Raffi.

It started ages ago when Jordan pulled out records from his childhood for Rio (yes, we have vinyl straight from the 70s) but has increased as of late because the boys have become fixated on Baby Beluga. They LOVE it. They have a Baby Beluga book that I sing along to, and it is their absolute favourite. Both boys sing "Baaaaaby" along with the song; Nolan can also hum the whole tune and Asher can ask for it by name: "Baby Luck".

Raffi's music is pretty cute but it goes around and around and around in my head - something completely unwelcome at 12am when I'm still not asleep! His songs have such a good message for kids though, especially "All I Really Need":

All I really need is a song in my heart,

food in my belly,

and love in my family.

I love hearing Rio walking around singing that to herself - what a great message, and really, so very very true. According to Raffi, this family's got it made!

And as an aside, in its own bit of awesome coincidence, at the same time as I had the thought for this post my favourite Canucks blog posted an interview with the man Raffi himself! Check it out here.

Brother Smooches

The boys love to kiss - their parents, their sister, and especially each other. Because they know how much we like it, they have also figured out how funny it is if they deny us. The other morning they were doing both and I captured it:

Video 1: If you listen closely you'll hear Asher say "no" and then bust out the hugest grin because he knows what my reaction will be. Then Nolan is happy to kiss the camera....just not me. Mama denied by both boys!



Video 2: Asher was crying and Nolan came scurrying over to comfort him. Cutest thing ever. This time mama is lucky enough to get in on the love.



They are pretty cute if I do say so myself! And could my voice be more annoying?? (Don't mind the fact that Asher is covered in oatmeal and looks like he nearly had his eye ripped out. That was also care of his brother when he wasn't being so loving).

The Shopping Cart

With Asher I notice the little things. And I mean the really little things. Like how his hands clasp or how he makes a certain sound or how his toes curl when he's working too hard. Some of these things I notice because I'm celebrating an achievement, and others because I'm over analyzing and worrying. It's become all about the small things, and the big ones have gone out the window.

For instance, a long while back I gave up on wishing for Asher to sit. Now don't get me wrong, OF COURSE I wish for him to sit, every minute of every day. But instead of just focussing on the act of SITTING itself, and feeling depressed and worried because he isn't, I have started focussing on the little things that are going to come before he sits.

Nine times out of ten he is well supported to sit - either in a lap, his high chair, his child rite chair, or his stroller. In fact, at first glance at him in any of those positions, a stranger would be hard pressed to see there's anything different about him. There are however, some places that no matter how much we try to support him he struggles. Take a shopping cart for example. He's floppy and bent on an angle and usually has an arm in the air for stability. He has bags and coats and whatever we have shoved in around him to give him some support but it's mostly futile. It's not pretty and it makes me sad to think that people are looking at him and wondering what's wrong.

But all of that changed this weekend. As you can imagine, we don't take the boys grocery shopping very often, for obvious reasons. Two babies/toddlers in a buggy for an extended period - not good. But on Sunday both of us were available and we had no plans so the whole family went for a field trip. Pretty sad that the grocery store excites us isn't it? But it's Superstore! You can buy EVERYTHING there! Jordan and the boys got the food and Rio and I spent some time with our good friend Joe.

We put Asher in his side of the buggy (thank you Superstore for having buggies that fit two kids!) and he grabbed the handle in front of him. WHAAAAAT! I nearly fell over. Grabbed the handle, with two hands no less, and sat there proud as punch! No bags or coats or purses shoved in around him - just him. Unheard of.

So we started pushing and I watched him closely. There he was, upright. We continued pushing and he continued sitting. Yes, he had the shopping cart strap around his midsection, and of course a metal bar between his legs, and then there's the fact that his jumbo brother was next to him. But I cannot tell you how much better he sat in there - how good he looked. Just two adorable boys in a shopping cart on a Sunday afternoon - no big deal to anyone else (ok well truthfully any time identical twins are out together in public it does cause a bit of a scene) but a HUGE deal to us. We had to adjust him a few times and by the end he was getting exhausted from working so hard, but this was a major achievement and a tangible way for us to see his progress.

Sitting completely unsupported? Still pretty far in the future I can imagine. But we're getting there - one shopping cart at at time.

My Strength Was Tested

Not the mental or emotional kind I usually talk about here....

But the physical kind.

Today I went to a Pilates class. The first exercise class I have been to since before I was pregnant with the boys. (You know, part of that whole lifestyle change thing).

It burned, oh did it BURN. But it felt good to work hard - specifically to work hard on something that wasn't my kids. I was sweating and cursing and out of breath, but I was actually doing something for me!

At one point, the teacher said "Feel your strength and be proud of it" and I thought HELL YEAH! I am almost three years removed from any sort of proper exercise and this class hasn't killed me! In fact, I was actually keeping up. Yes, it hurt, and my form was probably completely out the window, but I was doing it. I guess carrying around twins for 2+ years (and no end in sight!) has helped keep me more fit than I'd realized!

A Good Day, Until...

Yesterday was a fantastic day!

It started with a much anticipated morning Canucks vs. Bruins game that actually ended with the right outcome. That one got me so excited and emotional I could barely move on the the rest of my day!

Next up, a first birthday party.

Then came a quick visit with a great old friend who was in town to coach hockey.

It ended going to watch said hockey game.

And then we came home to a quiet house - Rio straight to bed and the boys already sleeping care of the babysitter.

I felt refreshed. What a great day.

Then 12:30 am came and for some unknown reason Asher was up. And he would only go back to sleep if I was holding him. On me, closely. Not Jordan - just me. Now normally I love cuddling my babes. But not in the middle of the night (ok truthfully I hadn't gone to bed yet) when he is sweaty and cranky and won't settle.

A couple of hours later he was finally asleep between us. And by between us I mean he was on my side of the bed and I was precariously hanging off.

When he woke up crying again around 5, I literally jumped up, said "I'm out" and left Jordan to deal with him while I went to the couch. Asher fell directly back to sleep by the sound of it, and I tossed and turned on our short, skinny couch,agonizing over the 80 year old lady hips I acquired from my precarious position earlier in the night. To add insult to injury, Jordan and Asher are both still sleeping peacefully now, while I've been up with the other two for ages.

Now in my exhaustion, all I can think of is tomorrow Jordan starting 6 shifts, then heading off skiing with Rio immediately for two more days. Ugh.

It will all seem better after a coffee (or 4). Right?

Another 'Year in Review'

I saw this on a blog I follow (a very positive one - see #2 on my list of resolutions) and thought it was too cool to not share.

The idea is that for each month of the year previous you share the first sentence of the first blog post of that month. Fun, right? Well I think so and it's my blog so here goes. (Text from original post is italicized and my current comments follow directly.)


January: Live in the NOW, slowly, each small step at a time.
Obviously a new years resolution. Hmm, that's funny, didn't I just claim I don't make those? Anyway, was I successful in doing this in 2011? A little bit, yes. I think partly because 2011 threw so many curve balls at me I didn't have a choice but to live in the now or my head would have blown right off. I'm not in the present as often as I'd like though (far less time is being spent in the past but still a bit much in the future), so this is a work in progress.


February: Jordan and Rio went skiing again and it was another huge success.
Rio continued to ski throughout last winter, loving every minute of it (especially the fries afterwards). This was the first thing we saw her engage in with real confidence, and that was a huge step for her. First trip of this winter is in a couple of weeks, with several more planned between then and end of season.


March: Some days physio is hard.
Enough said. Still rings true in many ways and I'm sure will continue to.


April: Since tomorrow is "homecoming day" thought I'd share some more writing on the subject.
Many of the products of my writing class were about the boys and their hospitalization. On this day I was sharing the second part of a two part piece I wrote about the day they finally came home. April 2 will always be a very, very special day to me, though not sure we'll "celebrate" beyond that first anniversary.


May: Something was said to me recently that implied Asher was not healthy. 
Assumptions about Asher are something we're always going to have to deal with. Good thing he's so remarkable it will be pretty easy to set people straight.


June: Next Wednesday, June 8, is a huge day for our family.
It was! Rio's kindergarten orientation and Asher's first surgery. But we all survived and the outcome was excellent. Rio is thriving in school and Asher had not one, but two successful surgeries. 


July: Today the family enjoyed the neighbourhood Canada Day festivities, including the world's smallest (and lamest) parade, an outdoor market, and best of all - a pancake breakfast! 
Oh my, what a ridiculous parade that was. Even more ridiculous of a parade? The lantern festival/parade we found ourselves part of on Pender Island on New Years. That is a whole story in itself. I will never look at a small community parade in the same way again.


August: I can't stop looking at this picture.
That was a gorgeous photo of Asher and Nolan, and what a nice distraction since my thyroid surgery was the next day so I assumed that's what the first post of August would be about. Clearly I had my priorities straight, showing off my two beauties and not wallowing in self pity about the upcoming surgery. (I'm sure I was wallowing in my head just not sharing it on the blog!)


September: It's been a busy week, trying to cram in appointments and friend visits before the start of school. 
That week was the end of an era - baby/toddler/preschooler Rio was flying the coop to go to kindergarten a few short days later. It was sad, but a good step for her. It also gave the boys and I more chance to spend time together instead of following big sister around.


October:  First attempt at auto-publishing while we're in Mexico.
Well that's a lame start to a post isn't it? But you know what wasn't lame? Our trip to Mexico. 


November: Asher and Nolan are two years old today!
Well we can pretty much guarantee that the first sentence on the first post of November every year is going to be about Asher and Nolan's birthday. Aside from the obvious things to be thankful for on their birthday (2 future neonatologists/models-in-their-spare-time), how about the fact that we get to celebrate that our boys are ALIVE?! Sure, I suppose that every birthday is a celebration of life, but not in quite the same way the parent of a formerly 2 pound/ventilated/on death's doorstep for a while-baby gets to!


December: Asher and Nolan have been back together since Tuesday.

Oh lord, the sleeping. At this point we had separated the boys (Nolan bunking with Rio) and were putting them back together. Not sure if this was for the first or second time, but we have had only moderate levels of success getting Asher to sleep regardless of what we do. The only real configuration that works in our house is status quo - the boys sharing a room. So we'll see what the future brings, but so far in 2012 sleep still sucks!


Pretty cool how much of our year each of those statements captured, eh?!

Lifestyle Changes

I don't usually make resolutions because I generally don't keep them, but this year I plan on making some "lifestyle changes" that I hope I can follow. If I don't label them as resolutions, that takes the pressure off, right? Here they are in no particular order - I'm sharing them in hopes that if they're out in the world I am held more accountable:

1. Exercise more (exercise at all in fact)
2. Remove myself from negative people. Why hang out with "friends" that somehow make you feel bad about your life? And why read blogs written by people who see more hardship than good in their difficult life? Downers be gone!
3. Spend more time playing with the kids, and less time worrying about them
4. Go on more dates with my husband (babysitting offers anyone?)
5. Don't let the Canucks stress me out. It's just a game, Tracey, it's just a game.
6. Accept my life circumstances - the good and the bad. In the words of the Serenity Prayer: God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.

Any good resolutions lifestyle changes for you?