Monday, March 28, 2011

Sugar Bush


Yesterday, we randomly decided to do something very Canadian - we went to a nearby sugar bush. I haven't done this since I was a kid, but have wanted to for a long time. There's a small window of opportunity for this - when the night temperature is still below freezing, but the day temperature allows for a thaw and the maple tree sap to start flowing. Sap is collected in buckets, or more modernly in a series of tubes and barrels. The sap is then boiled, then filtered and voila! Maple syrup. YUM! Since I've given up cane sugar and artificial substitutes for Lent, I am all over maple syrup right now.

 I won't even tell you how long I made the girls stand there while I took these shots. 
I will pretend I am just that good and got them very quickly. 

The best part of visiting the sugar bush is obviously eating pancakes. We ate a ton. Oh, so yummy. Kingsley was not interested, but did eat one whole baked bean. Progress. 




After stuffing our faces, we wandered around outside to burn off some of the syrup. One thing always on my mind - how am I going to bring Kingsley here when he's older? I have no idea. He got in the pancake house fine, and onto the play area, but we have an awesome all-terrain sort of stroller. He couldn't go into the woods with the girls and I and the playground was so retro, there was nothing there for him now or in 5 years from now.  Hm. I don't think winter is very accessible in general.




It was sunny, but so cold. We didn't stay too long outside. I really should've put the girls in snowpants or splashpants, but I had no idea what we were getting into! Next year I'll be prepared.


The other cool thing about our trip was that my OB was there with her family. I absolutely adore my OB and haven't seen her since my 6 week post-partum check up. She was a God-send when I was pregnant with Kingsley, so it was cool for her to be able to see him now, all gorgeous and healthy.

Friday, March 25, 2011

Sibling Rivalry


 Lalala, this is fun here playing together. 

Hey, now. How come I don't have anything cool to pour with? 

 Hm. Yep, that does look like more fun than what I'm doing...

Hey Cor, I'm just gonna take this one here... 

NO KINGSLEY!! 

GET YOUR OWN TOYS!! 

Ho hum.  

 Hi Mom. 

Oh, hai. Now, that looks kinda neat. 

I am going to need that now, Rachel.  

 No way, Kingsley.

You're not the first cute baby face to try to steal my stuff, you know. 

This is my innocent face. 

 Oh, look. Cordelia still has that scoop thing.

Let's try this again...


Things have been insanely busy this week. Rachel had the best fifth birthday party of all time. Kingsley is making gains in leaps and bounds. Spring has turned back into winter. Tomorrow is the big local spring mom to mom sale. And that's about it, but for some reason it feels like so much more is going on! 

Thursday, March 17, 2011

ShamRockStar

I'm not going to lie, I've been really frustrated lately.  Between the surgeries, recovery, the flu and then his first UTI (NOT the shunt, phew!), it seems King can not catch a break. Whenever I get excited about finally getting ready to move forward, something stalls him all over again. I remind myself that this is a journey. It's not a race, there is no deadline or finish line. Kingsley will get where he's going when he gets there.

Then I'll panic and think he'll never do this or never do that and start wondering when the last time I saw his legs move and why is he gagging so much, OMG it's the Chiari, he's going to have to have another decompression and a shunt revision at the same time because I'm sure he hasn't smiled in the last hour and now he's arching backwards and he has no motivation to move how am I ever going to teach him to do anything and on and on and on.... You know how it is.


Someone please come shake me when I start thinking like this, okay? Remind me that my son is a capital R ROCKSTAR.

Now that he's recovered from surgery and the flu and he's gone through his course of antibiotics, my baby boy has returned and I can finally breathe again. His legs are moving as much as they were post-surgery, which isn't a ton, but it's not a regression so we're fine. He's not really arching back that much, unless he's trying to see something behind him. And now that he's not sick, he's not gagging or throwing up anymore (shocking, I know - who would've guessed the two were related? ;) ).

Oh, and naturally he is suddenly doing some awesome things.

Like talking.


He's got a handful of words and a few signs he does now. I love it. He's finally starting to let us into his head. He's also starting to sing, which is mostly just him belting out AAAAYAAAYAYAAYAAAAA or BAABABAAABABAAAABABABAAA.  It makes me laugh. He'll have a whole babbling conversation with you, back and forth, and now he's starting to imitate sounds. Love it. I can't get enough of his sweet little voice. OK, maybe at 3am it's not the sweetest sound, but during daylight hours, I love it.

And dancing. (the action begins at 0:30 - I couldn't figure out how to edit it)



And the most ground breaking thing to date: picking up his cup and drinking all by himself.



I almost fell off my chair at dinner. I fed him a jar of that nasty food he likes. He yelled for more. I fed him another one. He barked at me to let me know he was thirsty.  I held his cup for him, did the usual hand-over-hand to get him to hold his cup (which he immediately let go of the second I eased up on the pressure). As my arm got more and more tired holding his cup and my dinner went from hot to lukewarm, I mentally started to list the goals I was going to start attacking:
1. hold his own cup;
2. feed himself;
3. eat finger foods;
4. eat a bigger variety of foods....
Finally I dropped the cup on his tray and started to eat as fast as I could before he whined for more when what do I hear? GLUG GLUG GLUG GLUG. I turned to see him holding his cup with two hands drinking like it was something he's done every day. I kid you not, he has never even picked up his cup, Ev.Er. nevermind put it to his lips. In fact, I can count on one hand the number of things he's ever put to his lips other than his own hands. So, of course I grabbed my phone and my camera so I could take video and pictures at the same time. He kept looking at me and smirking.  The little stinker. I wonder how long he's been thinking about that one.

He then picked up one of the dried chick peas that he has on his tray to play with during dinner and kept teasing me by bringing his hand toward his mouth like he was going to eat it! WHAT?? He didn't, which is good, but I'm going to have to trade them out for something he could actually eat and start watching the little choke-ables. All in time, I tell ya.

OK, so talking and dancing and feeding yourself are not huge exciting things for most babies. Worthy of a video, sure, but not tears of joy and celebration perhaps. My Kinger is not most babies though, so holding his own cup qualifies him for a big party and a week's vacation down south.


The other big exciting things around here revolve around the world melting.


Spring is COMING!! You can actually see grass.


But before that happens, my big baby girl is turning five. FIVE. In two days, I will have a five year old. How wild.

Thursday, March 10, 2011

Brain Power

So, last week I was talking about things that people ask or say that are odd or rude or whatever. There is one thing that I'm not asked very often that I sometimes feel like is the elephant in the room. How do you say it, really? What would be the appropriate way to ask... you know... what's up with Kingsley's brain? Like, the smarts side of his brain. Is he going to be smart, or... you know. Um, where's he going to go to school? Is he going to have an EA... maybe?  Awkward...

Maybe it's just me, maybe people aren't actually thinking about it and wondering.  Maybe those stupid news reports after the in utero surgery study came out that talked about the severe impairments have just made me unnecessarily defensive.

But in case people are wondering, I'll tell you: Kingsley is brilliant.

For real. No exaggeration. Okay, maybe a slight bias, but only very slight.

And he's not the exception either. Spina bifida on it's own has no effect on intelligence or cognitive functioning, so says the research I've been reading. YAY!!

There's a small 'but' though. While SB has no effect on any of that stuff, hydrocephalus and the big bad shunt can. Not necessarily will, but can. Now bear with me, because this mat leave has done a number on my own brain, but I believe approximately 85% of people in general have an IQ that is average or above average (an IQ score of 85+) as compared with 80% of people with SB that have an average or above average IQ. That's not that far off. Having the SB+hydro combo makes Kingsley just slightly more likely than any other child to have an intellectual impairment.

Statistically, people with SB have an IQ score of about 10 points less than their siblings. Here's where I'm going to have to brag a little bit. See, Jeff and I are smart folks. S-M-R-T, yes we're so smart! ;)  And the girls appear to be a bit more than brilliant. Ergo, my conclusion that Kingsley is merely brilliant is probably correct. No bias needed.

While Kingsley won't be as cognitively impaired as recent media may like you to believe, there is a good chance that he might have some trouble with skills such as hand-eye coordination, non-verbal learning tasks, and a few other things. They are real and potentially problematic issues that we'll have to deal with when he's in school, but we'll deal with that ship when it sails. At this point though, even with potential learning difficulties, we have no reason to believe that he won't do just fine in school, do everything academically that his peers are able to do and even go on to be a lawyer like his Daddy if he so chooses.

I won't lie, I am still nervous about all of this. He seems to be achieving most of those non-motor milestones that he should be and it's easy to explain away the ones that he has not yet achieved such as understanding 'no' and 'give me' (he isn't mobile, so doesn't get into stuff he shouldn't). He has every other item on the developmental checklists that we receive every few months from the health unit (other than sitting independently, pulling to stand, cruising and taking steps of course).  I feel like part of me is watching the other stuff just as hard as I'm watching the motor stuff. Always waiting for the other shoe to drop.

Wednesday, March 9, 2011

It's my WHAT??

It's my birthday!!

OK, now I know you're all panicking now, realizing that you didn't get me anything. Well, no worries. Jeff got me the best gift ever this year and one of my BFF's sent me chocolate, so I am SET. :)

But, if you do have some money just burning a hole in your pocket and you want to do something with it, might I interest you in one of these options:

1. The Spina Bifida & Hydrocephalus Association of Ontario is always happy to accept donations at this link: http://www.sbhao.on.ca/about-us/donate  They do wonderful things in this area and have sent us a lot of great information and support.

2. How about this little guy named Shea. http://savingshea.blogspot.com/ Shea is a four year old ball of gorgeousness that has SB and is an orphan.  Shea needs a family or else he will end up in an institution in eastern Europe for the rest of his little life. Actually, Shea has a family desperate and eager to adopt him, but they need some money to make it happen as international adoptions are not cheap. It's very easy to donate - click the ChipIn box and you do it through paypal in about 10 seconds. Simple. Amazing.

Not only is it my birthday, but for a lot of us it's Ash Wednesday, or the start of the Lenten season. No better way to start off this time of reflection, sacrifice and hope than to spread a little love, am I right? ... and nothing says love like some good old fashioned Catholic guilt, eh? LOL!!  


My birthday has been fantastic so far. I sat around the house with my three little babes and had lots of family come visit me. No better way to spend a day! Cheers to a fabulous year to follow this great day. :)

Monday, March 7, 2011

Flumageddon

The flu has hit our house. I will spare you the gory details, don't worry. It started last Sunday night in the wee hours. Cordelia woke up to revisit her dinner and that began my week of not sleeping. She was pretty rough for four days almost. Still going through some ugly stuff when it hit the other two.


The couch became our second home for a few days. It started like that ^ and then I made the wise decision to open it up into a bed and just give in to the flu.


So, this is pretty much how we spent Thursday, Friday, Saturday and Sunday. Since Cordelia recovered first, but didn't want to leave the flu party that was happening down here, she and I took turns sleeping at the foot of the couch/bed or on the chair in the corner. I discovered that she will sleep through anything. Kingsley wakes up when Rachel heaves and Rachel wakes up when Kingsley cries. However, both happened so often that it would've been impossible to attend to both in separate rooms. During daylight hours I let the girls slip into TV coma's since there wasn't much else we could do. If I have to watch the Tinkerbell movie one more time, I may cry. 

This is how I felt too, Kinger.

Cordelia was the real puke-bowl rockstar. Never missed. Rachel, not so much. 

The headbands were necessary. They helped immensely. I think this thumbsucking is what got us in this mess in the first place. It stopped for 4 days and when it returned I knew she had gotten over the worst of it. 

Rachel's still lingering. I'm giving her one more day on the couch, then it's back to school for her. 

I thought Kingsley was over it the quickest, but he threw up twice today. He's so... sad. So serious. So beautiful. He's sleeping an awful lot. Great, now I'm starting to wonder if he's over the flu and onto his first shunt failure. Ugh. 

That's really all that we've been doing here. By some miracle, neither Jeff nor I got the flu. I think we're about over with it, but only time will tell. There is still snow here, so no signs of spring or any relief from this dreadful weather. The girls are both skin and bones after this venture with the flu, which I find alarming and they're awfully pale.  They look like mini-vampires. Today, Cordelia even insisted that she needed to wear sunglasses in the house after I opened the blinds to let the sun in. Oh, spring. Come soon. 

"No, no, Cordelia. It's called BLOGGING. I think we can do it from this computer. Just let me show you..."







Wednesday, March 2, 2011

What Not to Ask

My dearest friend emailed me after my last blog post to ask about what was and was not okay to ask a mom regarding her children.  Oh boy, where do I begin? ;)  No, I'm kidding. There are a lot of things that people say or ask that are just small talk and mean no harm by them and we all know that.  They are seemingly innocent questions, but if you stop and think about it, they are some pretty weird things for a perfect stranger to be asking. Whether it's someone you've never laid eyes on or someone you casually know, there are some things better left unasked. I'll also preface by saying that most of these things are just fine to ask someone you actually know and talk to on a regular basis or have known forever.  Except the last one.

As for the rest of the questions, let us back up a bit because we all know they start far before childhood.

1. When are you getting married?
If someone has been dating someone for a long time, try to resist the urge to ask when they will be getting married unless there is a ring on one of their fingers. Jeff and I dated for four years before we got engaged. I had to endure that question for the better part of three years. It got tedious. And these days, not everyone gets married or even wants to. If you are actually involved in these people's lives, try something more like, "Are you guys thinking of getting married?" where the implication is not that you should be running to the alter, but will essentially get you the information you're so eagerly trying to get at. If you are just making idle small talk, bite your tongue entirely.

2. When are you having kids?
In our wedding guest book no less than six people referenced the need to begin breeding immediately. I kid you not, people started staring at my abdomen the next day in hopes of being the first to declare that they just KNEW I was pregnant before I announced it. For us, we had no trouble conceiving and carrying children, but this is not always the case. It must sting something awful to be asked this and not have an answer.  Also, as I'm sure my sister-in-law would attest to, if you have no plans for children then this question would probably get annoying. As with most of these questions, this one is not one to throw down with someone you don't actually know in hopes of making small talk. You might get an earful. If you're at least on a first name basis, you could try: "Are you thinking about having kids? Do you guys want to have kids?"  Those with fertility issues are welcome to chime in and let me know if that's even okay.

3. Pregnancy Questions
The above question is often followed closely with the heavily loaded: "Are you pregnant/When are you due?"  I don't care if you're 9 months pregnant and in obvious labour, until I see that head crowning, I'm not going to ask until you say something. I've heard too many horror stories!  Once someone is pregnant, people love to comment on the belly size. You pretty much can't win here. Either the woman is a whale and doesn't need you to remind her, or she's small/not showing and possibly self-conscious about it. Just placate the poor preggo and use the handy lies: "You're glowing!" "Pregnancy looks great on you!" and my personal favourite: "You're all belly!" Even though I know you're lying, I appreciate the effort. ;) Oh, one more dangerous comment - it's around the time of her due date, don't say: "You haven't had that baby yet??" because the answer is either obviously NO and she might ram her swollen fist in your face and blame it on hormonal rage, or the answer is YES and she might ram her swollen fist in your face and blame it on hormonal rage. Hormones are not a friendly thing. Belly rubbing is also a risky thing to do. I don't mind, but I know other women who consider it a huge no-no and might reach out and rub your (non-preggo) belly in return.

My other least favourite pregnancy related thing to say is: "... as long as they're healthy," as in, "Doesn't matter if it's a boy or girl, as long as they're healthy, right?" Define 'healthy,' folks. This is doubly dangerous since it usually coincides with the anatomy scan where you find out the gender and/or the overall state of development, or in other words, this is when you'll be finding out if something is not going according to plan. I can't even count how many times people said this to me, people who I wasn't interested in sharing the news about King's diagnosis to. I know it's just one of those random things people say, but if you think about it, sometimes it doesn't even matter if they're 'healthy' (and for the record, Kingsley was very healthy when he was born. Just had a pesky hole in his back).

4. When are you having another one?
Same as above. This started when Rachel was about 7 days old. It could be because I was on a hormone high and probably was singing about having 10 children still. When the drugs fully wore off, I stopped that tune, but the question kept coming. Are you pregnant? Are you pregnant? Are you pregnant? Stop watching what I'm eating/drinking. When I want to tell you, I will tell you. Until then, zip it. Second children are sometimes hard to create, if they're desired at all. Not everyone HAS to have a bunch of kids. Luckily, this seems to die off once: 1. you have one child of each gender, 2. you have 3 children, as clearly you would be insane to keep having kids after 3. I'm told that when children are close in age, there is also the question: "Was that on purpose?" that comes up a lot. Apparently no sane person would have kids under 2 years apart, so it imperative that you tell everyone about your blunders with birth control. It is their business to know, after all.

5. Are you going to try for a boy/girl?
Yes, clearly my life would not be complete unless I had a child of each gender. That would be my sole reason for continuing to procreate. Damn all these pesky girls I keep producing... I just want a BOY!!  Yes, there are people that really do want a child of each/the other gender, but there's an implication that the second/third/fifteenth of the first gender is going to be sub-par because they are not the other kind and that's just ridiculous. For what it's worth, I would've been happy with 10 girls. Probably would've been praying that #11 was a girl if I had 10 boys though. ;)

6. Are you breastfeeding?
Why oh why do little old ladies love to ask this question? My answer is yes, but it's always a little bit awkward and I am often tempted to say no just to see what they would say. I'm also tempted to ask if they're eating enough fibre or something equally none of my business. Again, this can be one of those sensitive areas because many mothers want/try to breastfeed but for whatever reason they cannot/did not and really don't need to justify that to you.

7. Are you STILL breastfeeding?
This begins when they're about 4-6 months old, along with the averted eyes. Seems the little old ladies like you to breastfeed, but not THAT much.  It's right up there with, "Why don't you just feed them food?"  Now, to be fair, before I had Rachel I had absolutely zero idea how long you fed a baby or what you fed them. I recall thinking that I would breastfeed her until she was 6 months old and then switch to baby food. Har har. Turns out, you introduce baby food at about 6 months old (or 4-6 depending on the child and your preference), but you have to keep either formula or breastmilk as their main source of nutrition until over a year old. The World Health Organization recommends breastfeeding until 2 years old. Not everyone does this, but try not to make your shudder obvious if you see someone breastfeeding a toddler. It's okay. It's even good for them!

8. Is s/he a good baby?
Nope, she's a freakin NIGHTMARE! Spawn of Satan! Take this baby AWAY from me!!
Really, how is a mother supposed to respond to this?

9. The milestone questions
Is she sleeping through the night?  Is he sitting up?  Is she crawling/standing/cruising/walking/talking...?
These questions don't bother me. They are generally pretty safe small talk, so long as you are in the ballpark for when they usually happen. You may get an earful on the sleeping through the night thing, so if the mother is carrying an extra large caffeinated beverage, you can probably assume the answer is no and skip that one.  Most moms love the opportunity to brag about the wonderful things their children are doing, so any interest in the little ones abilities is usually okay. If you get a short 'no' response, then move on.

10. What's wrong with him?
Oh, where do I begin? The short answer: Nothing. The long answer: Nothing. We mothers are a wee bit sensitive when it comes to our kids. 'Wrong' implies that you can somehow make things 'right'. Nothing I do can change Kingsley, he was born this way. He is the way he is supposed to be, therefore, there is nothing wrong with him. If you're under the age of 12, I will easily ignore the implications of asking if something is wrong; if you're older than that, I would expect a little sensitivity when it comes to your choice in words. I don't know the correct way to ask what the deal is with a kid who has an obvious disability or diagnosis or whatever. The more specific questions like: "Why does he have that on his foot?" or "Why is he going to be in a wheelchair?" do not bother me in the slightest. I have seen other kids in AFO's/wheelchairs and have ached to ask (but I'm shy). I also had someone once ask, "What's Kingsley's story?" which was a good alternative, in my mind. I'm sure I'll get a lot more questions like this in the future, but for now, that's all I've heard.

11. Did you take folic acid?
You know I had to add this one! I'm sure there are equivalent ones for kids with other diagnoses that annoy other parents as well.  Really, it's a disguised way of asking: "Was this your fault and do you know that it was your fault?" If it is my fault that Kingsley has SB, I don't know it. But even if I did know what caused him to have an open NTD, it's irrelevant to any conversation I will likely ever have, other than with a shrink or a fertility doctor. If you are neither, do not ask this question.

So, there. That's my little list of loaded questions. Ask at your own risk. They won't apply to everyone, obviously, and if you find yourself asking one of them, don't sweat it, it's not actually that big of a deal. The funny thing is, I think mom's are probably most guilty of asking other women these things. I have heard the words: "When are you guys having ki..... crap." come out of my mouth more times than I can count. I don't know why I say it, it's like a compulsion. I inwardly groan every single time.

As for Kingsley-specific questions, I don't think I've ever been bothered by one coming from someone I know or who knows about his diagnosis (other than #11).  I have no problem talking about him or his diagnosis or what it means for him. Probably better to ask than assume.
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