Showing posts with label redefining. Show all posts
Showing posts with label redefining. Show all posts

Friday, January 11, 2013

A Word About Emily...

This month Parents Magazine decided to put an adorable little 3.5 year old girl on their cover. This is not surprising or particularly newsworthy, except that the little girl has SB and she's standing there wearing AFO's and holding onto her gold walker. I'm sure this is not news to most of you ;) but I will force it down your throat a little more, because it's super awesome.

Emily is on the cover because she made a great cover model. There is no article about special needs or SB or anything relating to that aspect of Emily's life. She's featured on a page showing how to make cute Valentine's cards.

It's amazing. It's such a little thing, but it has touched so many of us.

Kingsley doesn't see a lot of kids on wheels. We know two boys, both a bit older than him, that use walkers, but the vast majority of people he sees on wheels are elderly or adults in power chairs. To see a little girl his age, wearing the same kind of braces he wears, using a walker on a magazine like any other kid... it's awesome. It's normalizing.

I was out getting groceries tonight and I wandered down the book/card/magazine aisle looking for things for Kingsley's birthday party when I remembered the magazine. I zipped down the aisle and there it was! I may have shoved a bunch of other magazines out of the way so nothing was overlapping with it. They should thank me, really. It'll sell out now. ;) At check out I was grinning ear to ear. I had to stop myself from accosting the check out woman with 101 reasons why it was the Best Magazine Cover Ever.

I showed the girls the cover when I got home. Cordelia smiled and then said she wanted to eat her necklace. Rachel said it was a pretty necklace, then paused. She looked at me with a little smile, looked back at the picture, looked at me... "She has a walker-thing." I confirmed that yes, she did have a walker. I pointed out that she also had the same orthotics that Kingsley wears. She said: "Ooooh... Her skirt is like a fairy skirt." Cordelia came back to peer over Rachel's shoulder at the cover again. I'm not sure if she was looking at the walker, the AFO's, or the skirt, but she nodded and that was the end of it. AFO's and wheels are everyday things for my family to see. Thanks to magazines like Parents, they can be normal for all families to see.

Thursday, April 5, 2012


I give up.

I completely and utterly resign myself to the fact that there is no point in worrying about Kingsley in any capacity. I worry, I stress, I wonder, I ponder. I question whether he will do whatever and when something will happen.

It's useless.

My latest query is when Kingsley will learn to transfer himself in and out of his gear and how he'll do that, when he'll be strong enough... We've been trying to make some long-term decisions and his timeline for independence is a factor, see. I've been talking to his therapists about it this week, some other families, doing a little Googling and Youtubing.

I think he was listening.

Today, I heard King chase after his sisters in his Bumbobile as they ran for the stairs and then up them. I heard bumps and thumps. I called out and he responded calmly, letting me know he was fine. He sounded amused.

This is what I found him doing:

Right after this, he decided to hoist himself up on the bottom step. He didn't quite get there, but he did manage to get his chest up onto the stair. And then he stole my iPhone, turned it on, found the photo icon, and watched himself pop out of his chair over and over and over.

So, that's that. No point worrying anymore! ;)

Monday, March 19, 2012

It's Not That Bad

I think I have written and rewritten this post a half dozen times in the last few months. Things keep popping up in the media that make me feel like I have to speak up but the words aren't coming out right. There is far too much emotion attached to this one.

Life is random. The mantra we are fed as children gets repeated endlessly: life is not fair. Indeed it is not, nor is motherhood. There is no fairness in some women's ability to conceive children while others cannot. The sweet, angelic babies are not doled out to the single women with no support system, nor are the high needs colicky babies reserved for the most patient new moms with eager grandparents near by and a supportive partner. There is often no rhyme or reason to children who do not get to live long. Babies with disabilities or diseases are not given only to parents who are strong and who can handle it. We did not ask for it. We did not choose it.  No one hands us a list when we are deciding to have children so that we can run down the options and check off what we want. Blond hair - check! Blue eyes - check! Athletic build - check! Social personality - check!

I am not a supermom.

I didn't choose for Kingsley to have spina bifida. If given the choice, I would have politely declined that option, would not have checked that box. I wouldn't have checked the autism box either. Or the one with the third chromosome. Or any of the boxes that would lead me to being a 'special needs mom'.

I did choose to have a baby though. I chose him. I chose him and whatever he was coming with, I chose to take it. I don't mean that I made this choice when we 'found out', I made this choice the day I decided we were ready for number three.

It's not fair that I did everything right and this still happened. It's not fair that some women do everything wrong and it doesn't happen. It's not fair when us mothers are told things about our children that we did not expect, did not want to hear, and yes, even feared hearing above all else. It's not fair. But as a mother, we know that life is not fair. Things happen, but we now must accept that it's not just about us anymore. Deal with it.  No matter what we had hoped for, when that little baby is handed to us the other rule of childhood applies: you get what you get and you don't get upset. The checklist is gone. Your baby is here. You have one job - love them.

Because what is most unfair is the lie we tell ourselves about how accepting we are of differences. The lie we have deep down where we don't want to admit. The lie that comes out the day you are looked in the eye and told that life really is not fair. To see how unaccepting we are of people with disabilities we only need to look at the termination rates after a prenatal diagnosis or the reaction an adult has to learning that they now will be switching teams from able-bodied to disabled. Life is over. A life with a disability is not worth living, apparently. That decision is not fair.

We have such a double standard going. We pat our kids on the head and tell them that they should be nice to the little kid in the wheelchair. Don't stare at the little girl bouncing on her toes trying to fly. Don't point at the little boy who looks a little different. Be nice. Be friendly. Just don't you dare be my child.

I'm told often by the amazing community that I find myself in that living with a disability is not that bad. I have many friends who tell me that having a sibling with a disability is not that bad. Having a partner with a disability, a coworker with a disability, a neighbour with a disability, a friend with a disability... All not that bad. Most would say not bad at all. I can tell you in all honesty, having a child with a disability is not that bad. Not at all what I thought it would be. We have had a few rough patches, yes, and a few awkward moments, but that goes with having kids, no?

Six years ago today, my incredible daughter Rachel was born and I was forever changed in ways that there are just no words for. What I wanted for her in that moment was the same thing I still want for all of my children: to know in every second of their lives how deeply and madly they are loved, just as they are. It does not take an extraordinary woman to feel that love or an extraordinary child to receive it. And though I do happen to think that my three are quite extraordinary, Kingsley is not more or less worthy of such adjectives than the other two. He's just a kid. I'm just a mom. His disability isn't his whole life anymore than its mine. It may not be fair, but it certainly is not the end of the world.

If you ever find yourself in that position of discovering that your child is not going to be who you thought: relax. It's not going to be that bad. You are strong enough, you are amazing enough, you will do just fine. There's no need to panic. Remember that people with disabilities are people. They love, they laugh, they play, they communicate, they live. If you can get over yourself, you will do just fine.

Sunday, January 15, 2012


My sweet little boy turned two today.


Two years ago he was born. I get so emotional when my children have birthdays. Remembering their births is so lovely, there just aren't words for how it feels to bring a child into the world. It's magical. Kingsley's birth was no exception, but since I've gone on and on about his birth day at various times, I will spare you today. ;)

I know it's kind of cheesy to say that I'm inspired by my own son, but I truly am. He doesn't do anything that any other kid doesn't do. He just goes about his days, his weeks, his year learning, trying, playing and developing. But when Kingsley does it, he's defying odds. 

I cannot even begin to count the number of times this year I have been reminded of the brilliant words my friend, Cassie said about her own son, Caleb: I've seen him do things I didn't think he would ever do. So many moments this year, I have seen Kingsley do things that amaze me. Things that I wasn't sure he would ever do. Things that if you told me one year ago today: this is the year Kingsley will do THIS, I would probably have doubted you.

This year, Kingsley showed us for the fourth time that he is a fighter. That he will bounce back. That he will continue to be resilient. He learnt to play. He learnt to hold his own cup. He learnt to hold a spoon (although, he did also learn to throw it instead of use it to eat. Baby steps). He learnt to eat. I forget that a year ago he was barely eating solid foods at all, nevermind finger foods, that he didn't even start eating solid food on a regular basis until the spring and that I still have a cupboard shelf full of baby food because he only just stopped eating it a couple of months ago. He learnt to communicate with us... in ways other than words, but he does get his point across! He learnt to sleep through the night - ALLELUIA!!  He learnt to roll over both ways (again). With support, he got up on his feet for the first time.

This year, Kingsley learnt to MOVE. His world grew exponentially at the end of the summer when he learnt to make his Bumbobile GO. And then his dynamic stander. And then his wheelchair. And then his body as he learnt to roll and twist and wiggle and finally crawl. Alongside all of the moving, Kingsley also learnt to sit. On his own, on the floor, with his hands up, playing, reaching, clapping, slipping into an Elmo's World coma.

It has been a big year for my little rockstar.

Yesterday, we had a little party to celebrate the big year that he has had. He was not that impressed. He cried, a lot. Covered his ears, his eyes, whined, and then finally accepted that no one was leaving and so joined in the festivities. What else are you going to do when you're already all dressed up, right?

Besides, there were presents. Can't be grouchy when there are presents. 

Right beside him, cheering him on every step of the way, were his two bestest friends and biggest fans:

We did it all over again today, because that's just what you do when you're two.

 Kingsley's second year was incredible. It was not without heartache, frustration, and impatience, but those things were so overwhelmed by the joy, excitement, and pride at the incredible kid Kingsley developed into this year.

I am so excited to see where he goes in this next year.

Happy Birthday, Kingsley!!

We love you so much!

Wednesday, November 9, 2011

Awesome, Awesome, Awesome

"I don't know how to ask this, so I'll just say it..."
"I hope this isn't a stupid question..."
"That's amazing... I don't get how it happened."
"Yeah, explain that to me, I mean it's awesome, I just... how...?"
"So... I saw your Facebook status. How did he do it??"

It's okay, everyone asked. ;) The other day, I posted on Facebook that Kingsley had pushed himself up onto his hands and knees and then posted a picture of him there. I got a lot of texts, emails and phone calls. Everyone was really excited, but no one knew how it was possible! 

The truth is, I have no idea either. He just did it. 

He's been rocking from sitting in a cobbler pose to leaning forward on his hands, then back, then forward, over and over. Sometimes, one of his feet will pop out behind him (think of a really early pigeon pose if that makes sense to you) and then he won't be able to rock back and he'll be stuck until I rescue him or he wiggles the other leg free and flops down onto his belly. That's part one. 

While all of that has been happening, we've been working in PT on getting him to increase his arm strength by putting him on his hands and knees and having him hold himself there. He has gone from holding for about half a second to holding for about 30 seconds. He's so strong! 

Add those two things together and out of nowhere, five days ago, Kingsley went from cobra to table! He just pushed his hips back. He even rocked a bit, like how babies do. I was... ecstatic. I think it was a combo of his abs and hip flexors working and AFO's digging him into the carpet so he didn't slide backwards. Amazing!! 

Once he got there, he screamed. Loud. I think it freaked him out. 

Or maybe it was my screaming that freaked him out, who knows. ;)

Well, that was exciting, what can top that, right? Ha. Pssssht. 

Today, Kingsley and I were working on it again, trying to cue him to push his hips back again and get his belly up. Once again, he was hollering while up on all fours, but then he started moving his hands in under himself and I got a brilliant idea. We worked on that for awhile. I got Rachel all set up recording it on the camera... 

Sorry! The video is lousy, Rachel's five, what can I say? She doesn't get lighting angles yet ;) But, he's pushing himself up all by himself, my hands aren't touching him. 

Over and over and over I tortured him helped him do it. Then I gave up and let him relax, left him on his belly to play with a toy. I looked away to get the camera, put the cap back on and when I looked over at Kingsley again, he was PUSHING HIMSELF UP INTO SITTING ALL BY HIMSELF!!!  

Tears! Screaming! Cheering! And a chocolate bar that Kingsley inhaled in about 5 seconds. I tell ya, for a kid who doesn't like to eat, he sure can hoover back a mini Hershey's. 

He wouldn't repeat it, but I'm still giddy over seeing him do that. Unbelievable. 

And on that note, I want to link you to something that has stuck with me since January. Cassie is another mom blogger out there. It's funny how you can feel so close to someone you've never met, isn't it? Cassie is a huge source of encouragement for so many of us mom's of younger kids with SB. Her son Caleb is 6 and he defines Rockstar. Cassie was constantly telling me that Caleb was just like Kingsley once. Caleb took a long time to get where he is. Caleb wasn't always a walker. I have to be patient, Kingsley will show me in time. Then with this post, she showed me what she meant:  Rarely does a week go by that I don't think of this post at some point or another. I have no idea where Kingsley will end up or what he will accomplish, but reminders like this and days like today make it very clear to me that I can never say never. 

that's for you Kris ;)

Monday, October 3, 2011

My Friends

Hi there,

It's me Kingsley again.

You may not know this, but I'm a pretty popular guy. I'm not even two years old, but I've got a big posse.

I know you think I'm pretty cute and I'm a medical marvel and all of that, but you should meet my peeps.

Mommy says it's SB month in the States. I don't know where that is.

Because it's SB month, lots of people are talking about some of my friends. They want you to meet them, too, so you see that I'm not the only cute little guy with SB. There are loads of us. Some are like me, some are not. Some have had lots of surgeries, some have had only one. Some even had surgery before they were even born! Some walk, some run, some wheel.

Mommy says that we're all rockstars.

So, go meet my friends. Tell them I said 'hi'. Don't be shy, they're friendly.
You might want to check back and see when I get to be Rockstar of the Day.

Love Kingsley

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:  In a nutshell, it's horrible.

And then he's born and the whole world becomes full of rainbows and sunshine!

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.

And then you live.

You have good days  and bad days and sometimes even worse days

You go on vacation (imagine that!) Yikes 

You live

Your other children continue to live

You have blips

But when you look at your child, you still believe you are the luckiest person in the world, because they are yours

This is what it's really like to live with a child with SB

Friday, July 8, 2011

Auntie Kristi

My sister and her daughters have been visiting for the last week.

It's been a whole year since we saw her and my younger niece, Karis. A year is too long! We've made up for it with Canada Day celebrations, trips to the beach and Storybook Gardens, and tons of time just hanging out. She is a far better photographer than I am and has a swank camera, so I let her do all the capturing for the week. And then we couldn't figure out how to get all the pictures from her hard drive to mine. We are brilliant. Anyway, things have been good. We have been busy. Summer is off to a great start.

The girls are going to be at camp together in the mornings next week and while they're there, Kingsley and I are going to do some renovations around here. We're looking forward to it. ;)

Friday, June 24, 2011


Awareness is a funny thing, isn't it? June is Spina Bifida Awareness month and I've been thinking lately about what that means. What is it that the general public needs to be aware of? The various international spina bifida associations have inspired some recent discussion on this topic as they seem to want to focus on two things: prevention and support. First, prevention. Second, support.

I understand this, truly. Prevention comes first on the timeline, right? Sure. As such, the vast majority of ad campaigns for SB awareness involve folic acid.  Folic acid has been proven to effectively reduce the likelihood of having a baby with SB. My mom told me once that when she was working in the SB world back in the 80's (she was a PT for the SB clinic Kingsley now attends), that every year there were about 12 kids with SB born, 16 on a really busy year. In 2009, there were 4. Kingsley was the only one as far as I know in 2010. This year there are another handful that I've heard rumors or know of (one born on Monday so send out some prayers for that little sweetheart and her family!). Between my mom's time in the SB world and mine two things happened: folic acid and prenatal diagnosis.  I would like to say that it's all folic acid that is the reason for this drop in stats, but we all know that's not true. I have yet to meet a parent of a child with SB that didn't get the extremely pushy Termination Talk at diagnosis.

I know that I am overly sensitive because I have a child with SB, but the prevention campaigns sting.

Take, for example, this one for my very own SB&HAO this month. "Every healthy baby is a victory" is the slogan. At first, you can think that it might possibly mean that the SB&HAO are going to be there to make sure that your baby with SB is going to be healthy and vital and have a fantastic life, right? Go team! However, then the poster continues with the message: "One in 1300 babies is born with spina bifida and hydrocephalus.  WE CAN CHANGE THAT... DONATE TODAY." I will optimistically assume that what they are intending to say is that every baby not born with SB is a victory for research and education about the causes and thus the ability to prevent it. The overt message is that folic acid can prevent SB (which it doesn't always), but the subtle message is that when that fails, take one for the team, Mama! Next time, you can have a victory!

And if "Every healthy baby is a victory," what does that make Kingsley? Apparently he's not a victory. He's not even healthy! It's no wonder OB's are heavy on terminating.

Awareness shouldn't be just about preventing. It should be about making the world aware of what SB is really like. What the diagnosis will really mean for your child. And most importantly, that our children, friends, parents, family members, coworkers, and neighbours with SB are healthy, wonderful people who are thriving and LIVING.

If you are reading this it's likely because you either have or have someone in your life with SB, or because you know me ;) I just need you to spread the word. Let people know about Kingsley or any of the other beautiful children out there with SB. Let them know that he is amazing and that we adore him and we would not want a life without him. He is my baby boy and he is a victory.

All that being said, I don't think anything gets my back up more than someone NOT taking folic acid for a planned pregnancy. If there is any remote chance that you (or your wife, girlfriend, etc) may get pregnant in the next few months, take folic acid. If your prenatal vitamins are making you sick, take a separate folic acid pill on it's own. You cannot get enough folic acid from your diet, no matter how healthy you are. It just doesn't happen unless your diet revolves around folic acid intake and it doesn't, does it?

In the 70's, it was acceptable to drink when you were pregnant, to smoke, and folic acid was not on anyone's radar. Healthy babies were still born, yes. In 2011, people who smoke and drink when pregnant are seen as gambling with their baby's health. Why isn't the same said about not taking folic acid? Just take it. It's not a guarantee, but believe me, the last thing you want to live with would be to be in my shoes and not know if you could've prevented it.

Edit: Misty also has some comments on folic acid that are worth a read

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.

Wednesday, January 12, 2011

Keep on Running

Last April, I started running. This is not a remarkable thing.  However, those who have known me a while were quite a bit shocked and stunned. See, I sort of hate running. Whenever anyone mentioned running, I would groan and moan and reach for my yoga mat. I come from a family of runners and did distance running through elementary school and highschool until one day I stopped (literally) and asked why I was doing something I hated so much. And that was that. There were a few years there where I actually ran the Run for the Cure, but luckily babies and bellies have prevented that for the last 6 years ;) 

And now I run. I even bought a treadmill this fall and have been getting on it regularly. I won't say I love it, but it is growing on me. I'm still doing the Couch to 5K program (still? again?) and I swear I will get to the end this time.

I don't really know what motivated me to start running (other than the big leftover baby belly hanging there), but what keeps me going is Kingsley. Knowing that he may never walk, nevermind run, motivates me to not take that ability for granted. My legs will not be wasted on me.

I needed that reminder today. I sat down at my laptop, ready to dent the couch all evening and the first thing that I saw was this video. Watch it! No excuses. My only thought was: THIS IS MY SON!! I mean, okay, not literally. Maybe if he was 25 years older, black, and had biceps the circumference of his whole body... but this is exactly why I run. This is why I take the stairs. This is why I got off the couch tonight. I'm not sitting this one out and my feet don't hurt.

(to save you the trouble of googling, he does have SB and he's an Olympian)

Friday, November 12, 2010

We've Got Mail!

Guess what we got in the mail today!!

A couple of SB families created these shirts for (American) SB Awareness month in October and ours finally arrived! The smallest size they were making was 2, so unfortunately Kingsley is the only one without! I am planning on doing something for our SB Awareness month in June, so I bought us these to wear.

We likey.

Thanks Kari and Leigh and Andy!!
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