Tuesday, May 31, 2011

Off the Charts

One of the silver linings to SB that I've mentioned before is that we get to savour babyhood and take note of every single new thing that Kingsley learns how to do. The most mundane skill or ability is suddenly life altering. You won't find them on most milestone charts, but I like to recognize them.

The biggest one for us lately is sitting in a grocery cart. I know. A grocery cart. Woopedee do! It really is awesome though! For the first few months I could lug around the bucket seat and just pop that in the top of the cart. That of course limited the grocery stores I could go to because I am rarely just with one kid and the cart had to be able to accomodate a kid and a bucket seat. Eventually, that got awkward. My Natural Mother Mei Tai changed my life and suddenly allowed me to grocery shop with all three kids. Awesome? Well, I suppose. ;)  Definitely necessary.

However, then he started to get really heavy. That's just fine, I could wear him in it all day long... up until I have to lean forward to get stuff out of the cart and lean forward to bag groceries and then lean forward to put it back in the cart and then in the car. Ouch.

 I think Cordelia was just as excited by this new skill as I was.
She smothers him the entire time we shop.

This month, Kingsley has finally been stable enough sitting up to ride in the cart. YEEEEEEEEEEEEEAAAAAAAAAAA!!!!! He is highly entertained by this.

Another very exciting discovery this month is Kingsley's ability to sit in the sandbox! I dig out some space, prop him in the corner and stay close by, but seeing the three kids play in there together is nothing short of awesome. Melt my heart.

 The last thing: cookies. Kingsley reached out and took a cookie and then ate part of it. He's showing more and more interest in eating and it never ceases to thrill me. He's slowly slipping down on the growth charts, which I know isn't such a huge deal, but it does worry me everso slightly. I would feel better about that if I could confidently say that he was eating what he should be. Spontaneous interest in food and actually eating it was a gold star moment.

Now, three totally unrelated things with no segue...

There is a family who received the Big Bad Diagnosis a few months back. They were quick to jump in line for the prenatal surgery and it was done successfully on April 26. Kelly (mom) is 26 weeks pregnant right now and the amniotic fluid is dropping. They think she either has a leak or a tear or something. Either way, she is on strict bed rest and everyone is holding their breath, hoping that little Andrew is able to stay in until 28 weeks or longer. Prematurity is a big risk with the prenatal surgery. If you have a second, say a prayer for this family or keep them in your thoughts. You can follow up with them here: http://andrewmichaeljourney.blogspot.com/

Last February, I blogged about a little boy who was an orphan in Ukraine at risk of being institutionalized if he didn't find a family with the money to adopt him. This past week, he met his soon-to-be Mom and Dad. It gives me chills. http://www.thekulpchronicles.blogspot.com/

My baby girl turned three last week. She is awesome. I made cupcakes.

Thursday, May 26, 2011

Best Case Scenario

I have an ugly confession.

On the SB forums, like any other support forum, when someone new joins and announces that their baby was just diagnosed and asks what to expect, what do our kids do, what are they capable of, are they defying the odds? I freeze. I read the other responses. Then I type. Delete. Type. Delete. And finally describe Kingsley as a newborn.

I remember perfectly how scary that diagnosis is. I remember reading about other kids. I remember zeroing in on any kid who had a defect around where Kingsley's was. Jeff and I would read them over, pick them apart, compare and contrast: Well, that kid is where Kingsley's is and he can walk. That one has AFO's, that one doesn't. That kid has had FOUR shunt revisions!! Holy, that one has had a whole bunch of surgeries. That kid you can't even tell she has SB, what's her level?  All we wanted was reassurance that what everyone was telling us was true: the doctors who diagnose give you the WORST CASE SCENARIO. Your child will be a rockstar.

There are so many examples of children with SB defying the odds, karate chopping SB in the teeth, doing all of the things 'they' said they'd never do or wouldn't be able to do, accomplishing things they'd never achieve, meeting milestones right on track, despite the dreaded predictions otherwise. Take that, spina bifida!

Kingsley doesn't exactly do that. Kingsley is one of the kids that would've made me dissolve in tears for days if I had read about him when I was pregnant. That one is S1 but functions at L1!! He's getting a wheelchair and has had FOUR surgeries already!! *sob* He can't even eat normal food yet!  The end of the world! The worst case scenario come true! And that's why I hesitate when new moms ask for reassurance. They want to hear about the other kids, not my boy. I know this and I don't blame them in the slightest.

The thing is, it's hard to describe in words how incredible Kingsley is. It's hard to understand how he completes our family, how he lights up a room with his smile, how he smells like heaven when he wakes up in the morning, and how he can charm the pants off anyone he meets (What's that Kingsley? You want a new house? Sure! I'll build you one! ;)).  His laugh is electric. The faces he makes can entertain me for hours. He's brilliant, pure and simple, you can see his mind working and figuring things out whenever he plays. He's such a happy, good natured, adorable kid. And the wheels he rides are pretty cool.

The level of functioning, the number of surgeries... they really don't matter. People say it over and over and over, because it's true. When it's your child that you are holding, it doesn't matter. With Kingsley, it's the way his lips move when he says Mumma, the way his arms wrap so tightly around my neck, the sparkle in his eye when he sees me walk in the room, the way he's entertained by his sisters, the way he says Dadda? Dadda? when he hears the garage door, the way he pounds on his toy piano, the way he dances when he hears a good song, the way his lips pucker when he's trying really hard to do something, the softness of his skin, the way he throws his head back when he laughs... those are the things that matter. Those are the things that make me feel every day like we got the Best Case Scenario. So, take that Spina Bifida.

Fresh eyes for you, Kristin.

Tuesday, May 17, 2011

(not my) iPhone

Jeff got me an iPhone for Christmas and within the hour of me taking it out of the box Rachel was playing on it. Cordelia was right behind her and as you may have noticed, Kingsley is also a fan. The phone has saved us from many a loooong boring appointment wait, diaper change, and other tough moments that have required distraction. I don't know how a 16 month old baby can figure out technology so easily, but he does. His latest favourite thing to do is use the camera like a mirror. It ends up with lots of pictures of him that make me laugh. He's so darn cute.

Also, in case anyone else has a similarly tech-loving child, his latest favourite app is Fart Piano. For real. His two little fingers get going and he creates a symphony of... farts. Thanks Rebecca ;) 

Thursday, May 12, 2011

Come Out, Come Out, Wherever You Are...

When I was in highschool my friend and I saw a car with duct tape holding the door on. We thought it was hilarious. After that, we started looking for the junkiest cars we could possibly spot. It was amazing that once we started looking for them, they seemed to appear at every turn. Bumpers held on with string, windows made of plastic wrap, masking tape over holes in the body... they were everywhere.

When I got pregnant with Rachel, the same thing happened. Suddenly, everywhere I looked there were women with big baby bellies. Babies in strollers, in carriers, in arms, just all over the place. One day, I didn't know a single pregnant woman or newborn. The next day, I was surrounded by them and couldn't turn around without bumping into one.

I'm starting to see people with SB. Or I think I am anyway. They're popping out of the woodwork and it's like a giant tease from the universe. The other day I was out in the front yard with the girls and my mom. Halfway down the street I saw a girl who was about 5 or 6 years old, walking behind a wheelchair that she was pushing. She walked like a little girl with SB would (and I cannot remember the technical explanation - one of the nerves near the bottom of the spine goes to somewhere in the glutes-ish area and thus makes it hard to tuck the bum in if you don't have that firing... or something like that). ON MY OWN STREET! Could this be right? I pointed her out to my mom who nodded in agreement. No cars on the street, so was she visiting? Did she live there? How come no one had ever mentioned that there was someone ON MY STREET living with SB? She disappeared when I had my back turned and I haven't seen her again since.

The next day I saw a 20-something year old guy in a restaurant that made me look twice. He was walking, but there was something awkward about his walk that made me stare. Until I realized that was really rude.

I've seen kids with AFO's in wheelchairs that I want to stop in the middle of a park and ask what their story was. At the grocery store, I passed a little boy about 4 years old in a wheelchair and I was tempted to ask his mom why he used one and how old he was when he got it.

We need a pin or something. I need to be able to identify other members of this exclusive club so that I don't look like the rude staring lady who really just desperately wants to find my team members.

The thing is, I know someone somewhere knows who we all are. I know that confidentiality prevents them from passing the list over to me. I know that if they wanted to be open to new families joining the club, they'd allow their information to be passed out. So, do I assume that they don't want to meet me? Or that there's been a glitch somewhere and there are other people sneaking quick peeks at Kingsley's AFO's and wondering how to pose the question?

Remember that scene in the Neverending Story, right at the end when the girl in the book with the necklace on her forehead tells the boy reading the book to do something and he's so confused by how she knows that he's reading it?  I know that there are other SB folk from around here reading this! Yeah, you! For all I know I'm passing you and your babies and bellies on the street and having no clue. It's time to come out and play. Come find us.

I make cupcakes. ;)

No, really. I do make really good cupcakes.

Sunday, May 8, 2011

The People Who Made Me

My Mom and Me ~ March 9, 1978

 Rachel Renee ~ March 19, 2006

Cordelia Capri ~ May 20, 2008

Kingsley Kieran ~ January 15, 2010

These four people have made me the mother that I am today and for that, I am so grateful. 
I simply love being a mother.

Happy Mother's Day!

Last Week

All three times that I have been pregnant I used Ann Douglas's The Mother of all Pregnancy Organizers.  I love this little book. Week by week, I documented how I was feeling, what I was craving, the lack of exercise I was doing, and how much action the baby was giving me. The other thing that there was space for each week was what else was going on in my life and in the world. One day when they ask to see their pregnancy book (because they ARE going to care about this, they ARE, even if I have to pin them down and read it to them ;)), they will be able to sample a little bit of history. Like how Hurricane Katrina hit when I was pregnant with Rachel and gas prices rose to $1.33/litre (astronomical at the time!), and how we bought our first house, then I got in a car accident when I was pregnant with Cordelia, and how Michael Jackson died when I was pregnant with Kingsley. Their own little time capsule.

Thinking about those books made me feel like I need to comment on three big things that happened in the world this past week, as well as three other big things that happened in our own little world.

The first big world thing, as most of you already know, are that Prince William married Kate Middleton on April 29. Kingsley was not up to see the wedding, nor was I. He did wake up at 6am (wedding time in England) and I ignored him (we are doing a bit of sleep training right now) and stayed in bed, however I did pick up my phone and google "Kate Middleton wedding dress" and came up with nothing new. Then I went back to sleep. Later on that day, I watched the wedding with the girls, but Kingsley was napping. So, there ya go, Kinger (because I know that one day he will be fascinated by his own blog!), you can tell everyone that you know where you were when Wills married Kate. 

The next big world thing, as I'm sure all of you know, was that Osama bin Laden was killed. I have no commentary on this, other than to say that it was/is a pretty big deal to a whole lot of people and I feel like it warrants some mention. It was a very rare evening in the Bell house because we went to bed early and missed every single breaking news bulletin. Kingsley (in the midst of sleep training still) was up screaming at 2am and Jeff felt the need to pass the time by checking his CrackBerry. I was half asleep when he told me the news and I recall wondering if he was talking in his sleep or if that actually happened.  It did.  

Lastly, as some of you know, we had another Federal election in Canada on May 2. I will spare you my commentary on this one ;) Stephen Harper, the Conservative leader, won a majority government. Four more years. OK, I will say this: I am afraid of what it will do to health care and how it might effect Kingsley's future in that regard. I get quite anxious if I think about it, so I don't. We'll see. 

And while all of these big things were going on in the world, we had our own big events. Of course, Kingsley wheeled, then rolled, then got mouthy. He also got a new pair of boots. They're actually AFO's - ankle-foot orthotics. They're pretty cute. Perfect timing as they protect his feet when he wheels into walls and doors. They keep his left foot in the right position (his foot/toes stay pointed, like a ballerina, otherwise) and provide support for him in the stander. 

Even more exciting, we celebrated Easter! Sadly, the kids did not rock the coordinating outfits quite as well as they did last year, although with no planning at all, Jeff and I both ended up matching the kids. We're just good like that. ;)  

Easter was lovely.  What  made it all the more lovely was that my niece and brother-in-law were in town for the week and we got to spend a lot of time with Kamille! My sister and her family live in BC so we don't often get to see them. This is the second time this year that Kevin has brought Kamille home to visit while he works. I am always thrilled to have her hang out, as are the girls. Kingsley was just considered baggage at this point, as he cannot yet be bossed around. Holy moly, three girls sure are interesting to listen to! 

There. A week in the life. I guess that's more than a week, but you know what I mean. 

Friday, May 6, 2011

Milestones - check! check!

How lousy of me! A whole week without updating my blog, tsk tsk. Now, you're probably thinking a week isn't that big of a deal, but come on. We're talking about Kingsley here.

Today, a mere, um, 11 months (lol!) after Kingsley first learnt to roll from his tummy to his back, in the exact same spot, Kingsley...


See that line down his torso? That's his shunt line. 

As usual, you can see the progress coming daily. He's been working his abs and back like you wouldn't believe. We have borrowed a bath seat that I've been using as a play seat. It basically has a back rest and a strap around his waist. It allows him to bend, twist and then work his muscles to get back upright. It's been great for him! Add in the Bumbobile where he likes to bend backwards and then work to get back upright and this kid could audition for Abs of Steel. ;)  And so now he rolls and wheels.

In other exciting news, yesterday I found Kingsley with a stone in his mouth. Shock! Horror! Elation! Only I would be excited about that. He's started putting things in his mouth in an attempt to eat them. Typical baby thing, right? Exactly!! I have been waiting for this day. He also tried to eat a piece of celery - two actually. He seemed totally convinced that he could do it too and gave it his best effort before I fished out the pieces he had chomped off.

These milestones are obviously months overdue. I'm okay with that. I am starting to see now that Kingsley is doing things in his own time, but that he IS doing things. I have to keep reminding myself of that sometimes. Focus on all of the incredible things he is doing, toss out the things his body is not designed to do. No, he can't walk or stand or pull himself up or even sit on his own. In time, he will figure out how to do what he's supposed to. In the meantime, I will continue to savour this slow, drawn out babyhood as he discovers his body and his world.

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