Showing posts with label siblings. Show all posts
Showing posts with label siblings. Show all posts

Tuesday, January 14, 2014

FOUR

Tomorrow, my little boy turns four years old.

Birthdays change when you are a mother. Birthdays become Birth Days. The anniversary brings vivid memories, sharp emotions, and overwhelming adoration for that baby that arrived. Birth Days really change a woman.


Two things have really consumed my thoughts leading up to this birthday. The first happened innocently: Rachel was doing the typical, "How old will I be when Cordelia is 15? ... How old will I be when Kingsley is 8? ... How old will I be..." And doing a quick math riddle in my head made me announce that next month Rachel would be exactly twice Kingsley's age. Pretty cool! Except then I started thinking about everything that happened in Rachel's first four years vs what happened in Kingsley's first four years. Namely: two more children vs no more children.

Then, my blogger friend Mary Evelyn wrote this beautiful piece on having another child after having a child with SB and some of her words felt like a punch in the stomach.


We had always hemmed and hawed about having four children. I have 6 stocking hooks that I bought when Cordelia was a baby, because we just didn't know. I joked about stopping at three, but if I'm being honest, I did anticipate caving to Jeff and going for four.

Four.

When I was pregnant with Kingsley, after we knew, when life was torn into shreds and I was flailing for anything to ground me, I swore that he was going to be the last. I couldn't go through that again. It wasn't anything to do with him or his diagnosis, it was the pregnancy and the feelings of total helplessness, hopelessness. I had never been so sad or so scared in my entire life.

When he approached the age that the girls were when I got the baby bug, I had other things on my mind. My son had just had his fourth surgery. We were just coming to terms with the fact that he was not going to walk and all of the implications of that reality. We were busy. My mind was on other things. As Dumbledore would say, "we had enough responsibility to be going on with."


And now time has passed. As Jeff likes to remind me that ship has sailed. The fourth baby has never happened. The fourth baby will never happen.

Sometimes, I am a little bit haunted by the thought Mary Evelyn had: Some decisions can only be made from a place of love-- not from a place of fear. Did I make my choice from a place of love or from a place of fear? 

I honestly don't know. 



When you have your first girl, people immediately ask when you will be trying for a boy.

When you have your second girl, people immediately ask when you will be trying for a boy.

When you have your third child and it's a boy, people ask if you're done. 

If that boy has a disability, no one asks, they just assume you're done. You're off the hook. 

If he had been my first child, I would have to be brave. I could not stop there, I would have to have more babies. My arms would not have been full enough with just one child. 


I don't know what the answer is. What I do know is that tomorrow, my little boy turns four years old. He is my favourite boy. He is my only boy.


Wednesday, October 2, 2013

Talking to YOUR Kids

The little boy peeked around his mom's leg with wide eyes.
"Mom, what happened to him?" he whispered.
She looked over at us with equally wide eyes and quickly shushed her son.
"But, why is he in that?" he persisted.
"You can't ask that," she hissed, as she pushed him behind her leg again and continued to watch the show.
The boy peered out again and I caught his eye this time, as his mom looked over at me and made an embarrassed gesture.
"It's okay," I assured her, then crouched down beside Kingsley so that I was eye level with both boys, "He was born this way."
"Do his legs work?"
"Nope, that's why he has a wheelchair."
"Can he feel them?"
"Nope. It's kind of like if your foot fell asleep and you couldn't feel it."
He smiled up at his mom and then turned back to watch the show. Kingsley continued watching, oblivious to the conversation.

~

"That's Rachel's brother!"
"Ask her! Ask her!"
"Rachel! Why does your brother have a wheelchair? Hey, Rachel! What happened to your brother? Rachel!"
Rachel chatted on with her girlfriends, oblivious to the small group of boys behind her, pointing to Kingsley. At the same moment, two of them glanced up and saw me watching them. Their mouths snapped shut, but their eyes were wavering between curiosity and guilt. One bravely stammered: "Did he get hurt?"
"No, this is just how he was born."
"Do his legs hurt?"
"Not at all."
"Oh," they looked at each other and one shrugged before they turned away and carried on with their First Day of School reunions.

~

"How old is he?"
The little boy was standing with me just behind Kingsley, watching as he giggled and tapped the soccer players on the computer screen.
"He's three."
"That's like me!" he said delightedly, "E'cept I'm four."
I nodded, smiling.
"Can he stand up?"
"No."
"Can his legs work at all?"
"No, not really."
The boy thought for a second, then asked with a horrified expression, "But how does he PEE??"
I sat back on my heels, for once stunned by a child's question and unsure how to answer. Who was this kid and what in the world made him know to ask that? "Um... just like you..."
"E'cept sitting down?"
OH. Right.
"Yeah."
He slid in next to Kingsley and they kept playing together until it was time for us to leave.

~

The girls eyes followed us as we entered the room and sat down. Their table was not far away from us, so I heard as she turned to her mom and asked, "Mom... why can't he walk? Why is that boy in a wheelchair?"
Her mom glanced up casually at us and looked at Kingsley wheeling along behind his sisters.
"Well, some kids are just born that way. Their body can't tell their legs to move," she watched a second longer and then added, "His wheels light up, did you see that? Pretty cool."
As her daughter turned back to her ice cream, the woman glanced up at me, as if to gauge my reaction.  I smiled and gave a small nod.


Kids ask me about Kingsley all the time. Kids are naturally curious about the people and things around them. I am sure that adults are equally curious, but we have been taught to squash the urge to ask (or if that hasn't happened, we have a tendency to ask in incredibly awkward ways).

Kingsley is three. His speech is not entirely clear, when he chooses to acknowledge strangers at all. He doesn't respond or appear to care when people ask questions about him, so for now it's up to me to field the questions and I don't mind at all. I don't know if King will want to answer these questions or if he'll one day wish everyone would just shut up and leave him alone. Because of this, I feel a little bit inadequate as to what the universal 'right' way to deal with inquisitive children/people, but in my experience, most parents of children with a disability or adults with a disability would prefer you let your children ask, respectfully, and answer them as frankly and calmly as you can.

Here are a couple great tips on talking to your children about disabilities:
http://www.huffingtonpost.com/2013/08/02/disability-awareness-parents-teach-kids_n_3696279.html
http://crippledgirl.com/2011/03/tips-for-talking-to-your-kids-about-disabilities/

There was also an episode of Daniel Tiger's Neighborhood this past week that addressed a lot of the common questions I get about Kingsley when he makes friends with a girl who uses leg braces and crutches. It would make a great ice breaker for kids to get talking about disabilities: http://www.youtube.com/watch?v=jqjBSulEqYU


It's important to talk to them. To break down the fears of disabilities, differences, diagnoses, and equipment, we have to let children know that they're all okay. Wheelchairs are a wonderful thing. Communication aids are phenomenal. Hearing aids are fantastic. Feeding tubes are divine. They aren't scary, they aren't contagious, they just let kids be kids.


I talk to Rachel and Cordelia (and Kingsley) about differences and disabilities all the time. We recently read a couple of books about kids who use wheelchairs who are bullied (WHY OH WHY are all 'wheelchair' books about this?) because the other kids think they're different. They were flabbergasted. They literally could not understand why these fictitious kids could not see past the wheelchair and realize that the wheeler was just a normal kid. I love them for that and I so desperately wish that other kids felt the same way.


Sunday, September 8, 2013

The Bog

In my search to find places I can take all three kids to hang out, my friend recommended the Sifton Bog. I've been there exactly once in my life and it was with a client way pre-kids. I had completely forgotten about this little gem!

It was a nice, sunny day today and we had nothing to do, so I dragged the kids into the van and off we went. Let me tell you, it was a hard sell. When I explained it, Rachel and Cordelia kept repeating: "But that's it?? Just walking? Nothing else? But what else do we do there? That's it?..." and on and on.

The Bog is basically just a boardwalk. It starts with a stretch of gravel, which was well groved and impossible for King to push himself along. Short trip, then it was wood planks.



It's nice, even planks, very easy for Kingsley to go down. The only trouble was that it dropped off on either side, as in - one wrong wheel and King would've face planted down a foot or so into the dirt and trees. I didn't worry about the girls, but Kingsley loves to watch his wheels light up when he goes very fast (his preferred speed) and that means he doesn't look where he's going. I just held his handle the whole walk and it was all fine.

The boardwalk leads to:


There were a bunch of tween-ish boys when we got there, which ended up being awesome. They had nets and were getting right in where they shouldn't have been (so glad I'm not their mother!) pulling out turtles, tadpoles, and frogs and attracting fish for my kids to watch.


All three were in heaven. We stayed on that dock for nearly an hour, just watching and exploring.


I didn't get any pictures of Kingsley because I either had a death grip on his wheelchair to make sure he didn't wheel himself over the edge or later crawl over the edge when he was lying on the dock, dangling over so he could play with the water.

I will admit, I am not a fan of all of natures creatures. They're all fine from a distance, so it took a lot of effort not to shudder and run away when these boys were running over with turtles and frogs to show Kingsley. At one point, two dragonflies landed on my shirt. I know, dragonflies are all cool and pretty and whatever, but seriously, it took all of my energy to force a smile and not scream as Rachel took this picture. She was thrilled. I was paralyzed with fear.

GET. OFF. ME.

All in all, a gold star trip. Thumbs up for the bog, we'll be back! (with bug repellent)

Thursday, November 15, 2012

Tinsey Talk

I was swimming with Kinger today and another mom asked how old he was, then commented on what a great vocabulary he has.

Kingsley. Vocabulary.

It completely blows my mind that Kingsley is doing so well with his speech. He speaks in sentences, has little conversations with me, tells jokes, listens to everything we say and has definitely caught up to his age. He did this in six months! Six months took him from 12 months to 30 months. Rockstar.

It's not entirely clear yet. He has some sound substitutions that I'm told are normal. The biggest one is subbing the sound T for all K sounds. He calls himself 'Tinsey', which I think is absolutely adorable. He will politely put his hand on his chest and say, "Me, Tinsey," if you introduce yourself, then point to me and say, "Mommy," as if these two things are all you would ever need to know.

The other thing that cracks me up is that he calls both Rachel and Cordelia, "Waychie," as if he couldn't be bothered to distinguish one sister from the other. I think it's his subtle way of snubbing Cordelia, who adores, smothers and harasses him every chance she gets. He knows she's Cordelia and will call her "Co-die" if asked outright who she is, but when talking TO her, she's Rachel.

One of my favourite thing he says right now is all the Super Why characters names. He *loves* Super Why. I've tried catching it on video because I just have to preserve how adorable he is yelling: "MOMMY! I'm Sue-pah Why-ee! To dah wescue! Wit' Won-dah Wed! And Pin-pess Pee! And Alpa-pid!"

So, there. Another time everyone gets to say 'I told you so!' about all the panicking I was doing over his lack of speech. It was slow, but it happened. The end. ;)

Friday, July 27, 2012

The Buckets Continue

We have crossed off a bunch of stuff again on our summer list of things to do. It has been an insanely busy two weeks, where I have wished numerous times that I had a nanny so that I could stop harassing the grandparents to babysit twice a day, every day. Our house is in full throttle renovation-mode and our new house is in full throttle picking-the-details-mode. As if that weren't enough, toss in a handful of doctors appointments for Cordelia and I, PT appointments for Kinger and I, and a day at the hospital for routine tests for Kingsley. Can we go on vacation now??

fish tanks are very distracting when you have to wait forever to get called in

Anyway, here is the fun stuff that we've been doing:

21. Pretend Makeup: I haven't actually given this to the girls yet, but I have made it and got it all ready to break out at the perfect moment of insanity. They love to play with my old make up, they love to do/pretend to do face painting. I *think* this is going to go over well. At least Kingsley will one day thank me, I'm sure.


22. Play-doh: the ol' stand by. I'm trying to desensitize Kingsley to the feeling of stuff on his hands. He freaks out if he has ANYTHING on his hands, which is crazy making for me. 


23. Crafts for Grandma: my mother in law gives the kids pink flowers on their birthdays every year. This year on her birthday we did the same! 

it's their hand prints!

24. Jello: I take no credit, I found this in one of my pins somewhere. I hate jello, I think it's rather gross and I associate it with vomiting. Playing with it seemed like a good idea. I wanted this to be one of those desensitization things for Kingsley, but the girls were driving me bonkers one nap time so I brought it out early. It got disgustingly awesome. Afterward, their hands were completely dyed red, which reiterated my distaste and decision to never eat this nasty stuff again. 


25. Mini Volcanoes: I think everyone and their uncle has done this pin, except us. It had so much hype and build up that I was certain it was going to be a bust. We finally got around to doing it and it was a 5 star success! All three loved it and there was a solid 40 minutes where the three of them completely got along. That's a rarity.


26. Ice Block Toys: this also had a lot of build up. Rachel saw me pin it ages ago and has been begging to do it since. I finally got around to doing it. Another winner! It was a good morning under the tree on the front lawn. The 12 year old neighbour came over with her 2 year old brother and both were intrigued and wanting to play as well. Not quite sure why, but this was a winner. Save it for a HOT day to facilitate.



27. Catch bugs: there was a moth in my kitchen. The girls are in love with ladybugs, butterflies and by default, moths. I'm hoping Mothy lives until the morning when they've promised to release her into the backyard.


28. Shaving cream: not sure where I saw it first, but I thought playing with shaving cream would be another way to desensitize Kinger a bit. Other kids love this! Mine did not. Kind of a fail. Kingsley freaked out and wanted nothing to do with it.


29. Swimming: I cannot believe I have only been in a bathing suit once this summer and my kids weren't even with me. This knee is slowing me down. Thankfully, my mom and Jeff's mom have taken the girls swimming. Pretty soon, I'm going to take them all. 

30. Date Night - no kids! For his birthday, Jeff wanted tickets to an annual outdoor concert downtown. Four bands were playing, but he was only interested in two of them. We don't get out much, so it was fun, even though it poured partway through. 


The coming week will not be very exciting, I'm afraid. I am in Olympics mode now. The Opening Ceremonies were awesome and I'm so excited for the games to begin! I'm doing my best to get the kids hyped up. So far, Kingsley is not impressed. 


Wednesday, December 28, 2011

1, 2, 3, 4, 5...

So... Pinterest, right? Weird site. I don't entirely 'get' it, but I do find myself opening the app and suddenly hours have passed and I regret it when I have to get up in the morning. On one of those random nights in which I look at things done by people far craftier than me, I stumbled upon a picture of a row of cousins all wearing shirts with their age on them. Awesome!

My brother does not have children and my sister has two who happen to be born on the alternate years that I did not have kids. That means that from September 2 until January 8 of any given year, our kids are sequential in age - so right now they are 1 (Kingsley 2010), 2 (Karis 2009), 3 (Cordelia 2008), 4 (Kamille 2007), and 5 (Rachel 2006). In two weeks Kam will turn 5 and ruin it all ;) but for now, we decided we should try recreating that very cool idea.

We gave it a valiant effort.

first, add the big girls

second, add the little ones. give numbers. so far, so good. 

practice smiling. hmm...

add backdrop and hold up your numbers!

demonstrate how to hold up numbers for Kingsley - which he thinks is funny

intervene with the little ones. 

Kingsley is annoyed with my attempts to get him to actually HOLD the number.

ok, numbers on the toes then. pretend I'm still holding the backdrop correctly.

fleeting attempts to revive the photo shoot. 

...and we're done.

Now scroll back up and look at Cordelia in all the pictures. She makes me howl. 

Rachel is a pro. 

We plan on doing this whenever they/we visit. I think it'll be cute to see over the years. 

Whole Lotta Christmas Going On

I know Christmas is generally a busy time for everyone, but for us, this year was/is exceptionally insane. We have been going nonstop for about two weeks now. It started on the 15th with Kingsley's MRI and my aunts passing, which of course meant family time as my relatives came to town for the visitations and funeral. The funeral blended into our first Christmas when my brother and sister-in-law were home. The next day we hosted Jeff's extended family. Then we got our Christmas miracle and had our second Christmas with my sisters family. A triple date to see Stuart McLean was next and both girls had their Christmas concerts and last days of school that week as well. Then another Christmas party and we had Christmas Eve and of course the big day itself. Boxing Day was lower key, but was followed by early birthday parties for Kingsley, my sister and my niece, which rounds us out with today when the girls went to the theatre with Jeff's mom and I did a little too much online shopping with all my free time (oops). We have two more parties this week and 5 playdates to arrange for next week while everyone is off. No biggie. ;)

Fortunately (for me) my sister being home means that I got to have someone with a really awesome camera take all the pictures! There are so many cute ones, I cannot possibly post them all, but here's a glimpse at our awesomely insane Christmas 2011.

day one of the insanity - waiting for the MRI with Daddy

my brother and sister-in-law gave King this ridiculously cute hat. he loves it and wears it all the time.

put my girls and my sisters girls in a room together and what do they do? 
Jillian Michaels workouts. 
for real. 
even Kingsley was entertained.

pretty much sums up my thoughts on that first week.
(can you see his scar? people have noticed it a lot more with his recent haircut)

hey! it's me! still feeding Kingsley. sigh.

tracking Santa's progress on Norad. 

could hardly handle the cuteness on Christmas Eve. 

it is really really really really really hard to get a good picture of all 5 kids at once.

time for bed! 
um. yeah, those are the same pj's as last year. they still fit! if it ain't broke...

Christmas for 11 = a very full tree

one of my favourite gifts for Kingsley.

wowing my sister and brother-in-law with his wheeling abilities. I can't count the number of times people watched him with amazement as he rolled around over the past few weeks.

"So many girls. So much giggling. So much squealing."

Phew! OK, I'm done. I have a lot more exciting news, but that's another post! ;)





Saturday, October 1, 2011

Awareness Month Deja Vu

Hello, welcome to October! Otherwise known as Spina Bifida Awareness month for the USA. We live in Canada and ours is in June, so I posted about it then. Instead of repeating, I'm going to repost. You can say that is lazy or you can say that I was so brilliant the first time that there is no topping it. ;)

I'll pretend you're agreeing with the second option.

I like to let people know what living with SB is really like. Not just the bad stuff, not just the good stuff. I don't want to gloss over anything because it's ugly and I also don't want to make it seem like it's horrible because mostly things are just pretty awesome.

Things weren't always so awesome though. Here is what it feels like to get the diagnosis for your baby: http://thelittlekingsley.blogspot.com/2009/09/diagnosis.html  In a nutshell, it's horrible.

And then he's born and the whole world becomes full of rainbows and sunshine! http://thelittlekingsley.blogspot.com/2010/01/hes-here.html


The rainbows fade with the lovely drugs, unfortunately. The post-birth hospital stay is one long rollercoaster, but the end is worth it because you get to go home and start your life. http://thelittlekingsley.blogspot.com/2010/02/kingsleys-video.html

And then you live.

You have good days http://thelittlekingsley.blogspot.com/2010/06/rockstar.html  and bad days http://thelittlekingsley.blogspot.com/2010/06/stop-ride.html and sometimes even worse days http://thelittlekingsley.blogspot.com/2010/09/heavy.html


You go on vacation (imagine that!) http://thelittlekingsley.blogspot.com/2010/06/kingsleys-first-vaca.html Yikes http://thelittlekingsley.blogspot.com/2010/08/three-kids-three-days.html 

You live http://thelittlekingsley.blogspot.com/2010/10/living.html


Your other children continue to live http://thelittlekingsley.blogspot.com/2010/10/spidipida.html


You have blips http://thelittlekingsley.blogspot.com/2010/12/kingsleys-decompression-with-music.html

But when you look at your child, you still believe you are the luckiest person in the world, because they are yours http://thelittlekingsley.blogspot.com/2011/05/best-case-scenario.html


This is what it's really like to live with a child with SB http://thelittlekingsley.blogspot.com/2011/06/living-part-2.html






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