Showing posts with label awareness. Show all posts
Showing posts with label awareness. Show all posts

Monday, October 7, 2013

Rockstar Milestones

Kingsley has hit another milestone. This one is so... strange. New-normal-strange. 

He moves his legs. With his hands. 

It's a pretty big milestone, if you think about it. He's going to have to move his legs around to get dressed on his own, transfer himself from his chair to wherever, and I don't even know what else. 

It's been so strange watching him come to this realization. The first time I saw it was when he was sitting and he had moved, which traps one leg underneath him - he leaned back and then pushed his foot forward with his hand to get back into a crossed-legged position. Prior to this, I had always had to adjust his legs for him. The next thing I noticed was in the van, in his carseat. Apparently he has a preference for how his legs dangle, so he moved them. 

Before now, his legs have just been there. He touches them, he knows what they are and that they're his, he'll move what he can if you tell him to, but that's about it. Now, he'll lay on his back, lift from the hips and ask me to help him pull his legs up with his hands, tucking his knees to his chest. 

Something so simple. I'm guessing there are a whole bunch of these milestones that he will hit that I'm completely oblivious to right now. I can't think of what they would be, but he will. 

That's pretty freakin cool. 

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?"
"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.
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:

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:

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.

Friday, June 21, 2013

The Big Wheels

“Why are they all staring?" demanded Albus as he and Rose craned around to look at the other students.
"Don’t let it worry you," said Ron. "It’s me. I’m extremely famous.” 

I have had that quote in my back pocket for two years now, just waiting for either Kingsley or the girls to notice the staring. People stare at Kingsley all the time. Sometimes blatantly, sometimes (not so)covertly. We have been at the girls school a lot in the past month so once again, I'm/he's getting the children gawkers and occasional brave question when they've slipped away from their parents: 'why does he use that?' Adults are different, they either avoid looking entirely, as if the wheelchair was wearing a wig of snakes, or they treat King 'special' because of it with waves, honks, extra candy (Halloween and Parades), and big 'HELLO!'s while ignoring his sisters.

People make assumptions about people in wheelchairs, that is becoming abundantly clear to me. Two major ones, I find. 

The first assumption is that they don't want to use their wheelchair, that it's some sort of burden. Let me clear this up right now: it's not. Kingsley LOVES his wheelchair. It is not as though he has the option of wheeling or walking and this is second place. His options are wheeling and being independent or staying where he is put down, waiting for someone to move him. Independence, at any age, is always preferred. Parents of kids like King often panic about this one: a life of confinement in a wheelchair, the horrors! How can they do that to their child? I can't speak for all kids, but I can never say enough how much Kingsley's life changed for the better when he got wheels. He was so passive before, never exploring, never moving. Now, he tortures me by trying to find ways to launch himself down any ramp at top speed. I am not burdened by his wheelchair. I love it. I love what it does for him. I love the independence he has. I do not love the lack of accessible kids activities, but I don't think this would be much better if he used a walker or any other mobility aid (were that possible, which it's not). 

I believe this assumption comes partly from our language, about which volumes have been written by the disabled community about our ableist biases. Right now, I don feel I need to get up in arms over whether Kingsley is IN a wheelchair or ON a wheelchair - I will one day take his lead on that - but I had a convo with my brother recently that I had to correct him on. He is a paramedic and was telling me a story about a call with a cool guy who was in his twenties, totally independent, nice guy, who uses a wheelchair. It went like this: 

BRO: ... so I was thinking about King the other day on this call, blah blah, and the guy was wheelchair bound so we got to talking about my [awesome] nephew and - 


BRO: what? 

ME: with what? Is that why you were there? 

BRO: with what what? 

ME: what was he bound with? Ropes or chains? Did you have to cut him out of his wheelchair? Who did that to him???

BRO: oh. (Pause) Ah. Ok, ok. How do I say it? 

ME: he uses a wheelchair. Unless he was legit bound to it, but that would be abusive... Unless he's three and it's just a belt 'binding' him for safety... 

People aren't bound or confined to wheelchairs. They aren't torturous things. Like I said, the alternative is the state of confinement for Kinger. 

Wheelchair = freedom and independence
No wheelchair = bump on a log

The other assumption people make is a strange one. People assume he is intellectually disabled. I'm not sure what to make of this one. For starters, I'm not insulted by it as I do not think being intellectually disabled is an insult. I am just always caught off guard by it. Also, with SB there's a chance King may have learning disabilities once he gets to school. As of right now, we have no indication of any problems, he appears to be right on track with everything. 

The strange thing to me is how it's brought up. It's often by people I'm acquainted with. People who I'm closer to have just come out and asked if King's cognitive development has been effected and I'm fine talking about it. The main way others ask is by asking if King will go to the same school as the girls. I was so confused the first fifty or so times I was asked this. Of course he will? Where else would he go? I know in some places there are segregated or special schools. We don't have that at all here. There are a few classrooms in a couple schools for kids with ASD and then some for children with intellectual/developmental disabilities, and not all kids who fit either of these two diagnoses automatically go in those programs either, it's all case-by-case. Kingsley does not fit either criteria by a long shot. In fact, at this point I don't anticipate King needing any accommodations other than space, a private bathroom, and someone to help him take his mid-day meds, which we ensured when we switched schools. So, either people don't know that we no longer segregate kids with disabilities (which would be strange, since I'm pretty sure that hasn't happened in my lifetime) or they think he may belong in a special class. Which is a strange assumption since his wheelchair is the only thing indicating something different about him. 

There have been other comments also, like how I can keep him in high school until he is 21. Same idea, if it's needed, great. But I have no indication right now that he will need to make those victory laps to get through high school. Why would anyone else think that?

I have heard that as he gets older, people will start talking to me about him in front of him as if he can't understand or answer for himself. It happens now, but it's not abnormal to do this with kids his age.

People are strange about wheelchairs. I have tried thinking back to how I would have responded previously to someone using a wheelchair and I honestly can't remember. Maybe I was immune to stereotypes because I have spent most of my life working with people with physical and other disabilities and have had people-first language shoved in my face at every turn. Or maybe I was totally ableist and didn't even know it. Either way, I'm glad Kingsley is around to break down stereotypes for others. 

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.

Saturday, September 8, 2012


"Hey, look!"
"Look at that kid..."
"Did you see him? Over there!"
"Mom! That boy is in a wheelchair!  LOOK! Mom! Mom! Over there! Mom, no wait Mom, look!"

Rachel and Cordelia just started school this week. Since we are moving at the end of this year, we were given permission to begin the girls at the school by our new house instead of the one that Rachel went to for JK and SK. As a result, we are at a big new school where no one knows us.... which lasted all of 1 minute.

It turns out, a two-year-old on wheels makes quite the spectacle. I kid you not, kids gather in crowds around us when we're waiting for the girls to go in the school or come out. The just come up and stare, in herds. It's one part rockstar status, one part a tad creepy. Most don't say a thing, just stare. Some like to touch his wheelchair, as if to confirm that it is not an illusion. Others try to talk to him. A handful ask questions, which make the other kids around stare harder with their eyes bulging, waiting to see if the brave kid is told off for asking questions or if I'll actually answer what they're all wondering: why is he in a wheelchair? 

I'm not really used to this. I suppose in the last year we have spent more of our time around adults, at stores, the library, the neighbourhood or in places where people just know Kingsley. At the school, there are just so many kids and so few adults to yank them away or hiss to be quiet. Kids are so blunt, so curious, so innocent.

The whole experience this week has made me very happy that we have a few years before Kingsley starts school there. He's so young now, he doesn't really notice the crowds, the stares and the questions. By the time he is four and in JK himself, the kids there will be used to him. They will just know him and his wheelchair will not be such a spectacle. I like that after one week in school, so many of the teachers and support staff are already on a first name basis with King and say hello when we come and go. I like that the school is only seven years old and is completely accessible, right down to the play equipment and the large, private, accessible bathroom.

The staring and the crowds don't bother the girls at all, nor me. Kingsley does stand up for himself when needed and has learned to say "Don't touch me, please!" (though it doesn't quite sound like that) when anyone touches his wheelchair. When asked, I tell the kids that Kingsley's legs don't work, that he was born this way, that he'll never walk and no, he can't stand on his own.

I also tell them that his name is Kingsley, he's two, and, yes, he is usually this grouchy in the morning.

Wednesday, June 20, 2012

June, June, June

It's June, which means it's Spina Bifida Awareness month. I have been trying and trying to come up with some kind of post to address it, but I'm blanking. It's taken me three weeks to realize that we're just not in a SB state of mind lately. I guess that in itself is indicative of something that people should be aware of: SB often takes a back seat.

We've been busy doing the usual June things. Cordelia is done preschool, Rachel is wrapping up SK, Kingsley and Cordelia's playgroup finished. We've been swimming, gardening, swinging, biking, rolling, reading, and playing.

I've also taken a detour from my yoga and occasional running, did I mention that? I started playing soccer, which I have never played before in my life. I'm generally horrid at team sports and anything involving moving objects, but kind of figured, why not? Everyone else was playing ;)

Week one, I pulled a quad. Week four, I rolled my foot and pulled something there. Week seven (this past Sunday), someone went Tonya Harding on my knee. I'm not entirely sure what happened. I remember going for the ball, then I was hit and there was a disturbingly loud and gross sound from my knee and I dropped. The doctor today said I have a tibial eminence avulsion, which he explained as a chipped bone. I googled and it's apparently something that most often happens to preteens who fall off their bikes. Fantastic.

ohemgee, Mom, you are such a klutz

Kingsley and I now have matching knee immobilizers. Mine is called a Zimmer splint, but it's basically the same thing only mine is more rigid and I have to wear it all the time. I get crutches, too.

So, that's where we are at the start of our summer. I can't carry Kingsley anywhere because I can't walk without crutches, I can't drive, I can't swim, I can't do much of anything. I'm not really sure where we are going to go from here, but it's going to be interesting!

**Go here to find out more about Kingsley's awesome shirt

Wednesday, April 18, 2012


A few months after Kingsley was born I stumbled upon the Couch to 5K running program and started running. I am not a runner, really. My mom, my brother, and my sister all run and when I was in school I was on the track teams doing distance running, but I did not like it. It's one of those things that I am moderately alright at doing, but hate... Until baby weight starts jiggling and then I was desperate to try anything! ;)

Running may seem like a symbolic choice of activity for me - doing something that Kingsley can't do - but I choose to look at it in the other way: running is something that I can do. No, I don't love it, but occasionally I get a mild euphoric rush when I feel moderately good about doing it and it allows me to do some good by participating in a few (very few) select races that raise money for things that are important to me. 

One of those races is coming up in 11 days (*gulp*). It's called The Forest City Road Race and it raises money for the centre that Kingsley gets services from. So many of the services we access are not government funded and are free to us because of donations and fundraisers like this one, so I am happy to help them out a little bit by participating.  My mom and I are doing the 5k together. Like I said, she is a runner, so although she is almost 30 years older than me, she's faster, more fit, and has been training better for it. I'm getting nervous! 

And when you get emails like this, how could you possibly not do something? 

Forest City Road Race top banner
 Issue: April 2012    
Thank you for registering for the   

Have you set up your pledge page and started collecting pledges?  100% of the pledges go directly to services and programs at TVCC, that support kids like Kingsley.  There's still time. 

Meet KingsleyKingsley
Kingsley is just one of the shining stars at Thames Valley Children's Centre. He was born with Spina Bifida. 

Like many of the children and at TVCC, Kingsley and his family need help and support to give Kingsley the life he deserves. That is all made possible by you. It's your dedication and support of the London Life Forest City Road Races that make it possible.    

Please spread the word and share this Newsletter with Family and Friends   

beyond disability 

If you would like to make a donation or pledge, click here:  **Note: those are not my legs ;) 

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.

Monday, November 14, 2011

We Met

I know you're all dying to know ;)

So, on Saturday our little clan all headed out for the SB workshop day at our centre. It was great! It consisted of a few information sessions on the anatomy of SB with levels/functioning information (check, check, memorized that bad boy last year), a discussion on equipment (which featured pictures of Kingsley in all of his various equipment pieces).

Probably the one piece of equipment we were not yet familiar with there were RGO's (reciprocating gait orthotics). For those of you who aren't in the SB world, I have no idea how to really explain them, as I never fully understood them until I saw them. They're basically bracing that goes up to the chest and if the person wearing them tips their chest backward, it pushes one of their feet/legs forward and mimics a walking motion. I think. I may be confused still. I only mention this because we've been looking into them for Kingsley down the road. They wouldn't mean functional walking like most of us do, it would mostly be for exercise and experience.

There was also discussion of hydrocephalus and shunts (check!), chiari malformation (check!) and tethered cords (check!). It made me realize that Kingsley is really making the most of his SB experience, haha. During this talk we got to see a SB doll. For real - a doll! It has SB, hydro, a shunt, Chiari and can have all kinds of spinal issues. You can even cath it and make it a boy or girl. I can't imagine ever needing one of these dolls myself, but it's cool to know they exist.

There was a presentation on the bowel/bladder issues. Nothing new their either! And a discussion of recreational activities for kids with SB. That was cool to hear about different things that are available in our area.

But my favourite part of the day was talking to other families. The day was geared toward kids with children 3 and under. I think there were 2 three year olds, 1 two year old, Kingsley, a 9 month old and a 6 month old. I feel like I'm missing someone here.... Maybe not. They had two families, one who we adore who has a son a year older than Rachel and the other who have a 15 year old son named Eric. Meeting Eric and his family was amazing. I imagine it would be the local equivalent of meeting Aaron Fotheringham. Eric is a wheelchair basketball superstar and he also plays sledge hockey. He and his parents were just so... reassuring. I sat there listening to them and thinking: THAT is the kind of family I want to be! They were just awesome.

We also had the chance to meet and talk to the other families there and a representative from the SBHAO. All of our kids were pretty different, but all definite rockstars. All in all, a very good day. I am really hoping we can do things like this more often!

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, 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

Tuesday, June 21, 2011

Living, Part 2

June is Spina Bifida Awareness month in Canada.

In the US it is in October. Last October I participated in a blog link up where a whole bunch of people living with SB blogged about what life was like. I wrote about what life was like with Kingsley who was 8.5 months back then: Living There wasn't a lot that made Kingsley different from any other baby his age, other than a few moments of my day where he required a bit of attention. Eight months later, things are quite similar.

However, they haven't always been that way. Between October and now, that proverbial stereo had it's volume cranked to 10 for a good solid 4.5 months. Not only did we have to face the music, but it was the kind of music that gives you a headache and that is nearly impossible to dance to.  It was stressful, it was consuming, and it was really painful to see my baby boy have to go through the things that he went through. I guess that is what living with SB is really like though - the stream of months or years of just life, mixed with episodes of panic and anxiety and dread that slowly fade back to life. Right now we are just living and life is really good.

Kingsley is almost 17 months old and has five diagnoses on paper now: myelomeningocele spina bifida, chiari malformation II, hydrocephalus, neurogenic bowel and bladder, and something else which means his legs don't move much, but I forget how it's worded.  Last year, the shunt, medicine, cathing and therapy were the only small things in our life that reminded us about the SB. The shunt doesn't scare me anymore, I barely think about it. We are fortunate that Kingsley (*knockonwood*) has not had any trouble with Billy at all. ;) He does his job and doesn't cause us stress and that's just the way I like it. The medicine is equally mundane. I give him his meds on schedule (at diaper changes so I don't forget), they work, everybody is happy. Likewise, cathing is just still part of our routine four times a day that I barely think about. I still avoid doing it outside the house and usually I'm able to work it out so that it's done at home without causing us too much trouble. Jeff can do it, obviously, and Jeff's mom is able to do it now, which means that if she's babysitting I don't have to time my outings around it. My mom has also offered to learn whenever we need her to, but we just haven't had a need yet. I guess I don't get out that much ;)

Therapy wasn't too cumbersome for the first year and it's still not, however everything to do with therapy is bigger and more involved. He has AFO's that he wears on his lower legs and feet every day. I don't know why, but people tend to think they are sandals. Maybe because of the velcro strap? For whatever reason, they don't get a lot of attention. They protect his feet from bumps and squishes, as well as keep them in the correct position for standing. They don't bother me at all and they don't bother him at all.

King has a bunch of 'equipment' now.  He has a seat (basically a seat back with a strap around his waist) to help him out when he's playing on his own on the floor since his sitting is not 100% yet. He also uses a Bumbo seat on the floor, but it's a bit trickier to get to the toys when he's raised off the floor and has that between his legs.  I only use these at home when I'm not with him. He gets to play independently and I get to make dinner. Win-win ;)

He has his awesome Bumbobile that is teaching him the basics of wheeling. Our house is not yet conducive to wheeling, so his practice space is limited to the front hall and the kitchen. He uses it when we're playing outside and at his playgroups where he gets to be low to the ground where his friends and toys are.

Lastly, he has a stander. He cannot bear weight on his legs, so this holds him in a standing position to get the physical benefits of standing. He doesn't have any set guidelines for how long and how often he's supposed to be in it. I aim for every day for as long as he wants to be in it. He loves it and as long as you keep the toys coming, he's fine for an hour.

In the next six months or so, we plan to get him a mobile stander (think: stander + wheelchair) and a wee little wheelchair and that may or may not round out his equipment for the next few years. Things to consider still, but that's another post. ;)

I'm not sure that Kingsley's (lack of) eating qualifies as an SB issue or not. In a roundabout way, it does, but since there are plenty of kids without SB who don't love finger foods, it's not totally. He is still working on expanding his diet. It's getting better, but it's slow. He will eat most finger things like dried cereal and puff/chip/cheesie types of things and bread or bagels. Otherwise, oat cereal and fruit, yogurt, and those yucky jars of pureed casseroles. Blech.

He's laughing at his sister's running around the house.
Eight months ago, Kingsley's SB was still invisible. Now, it is less so. People notice that he doesn't walk. They notice that he doesn't stand or crawl or sit on his own. I am constantly being asked and then asked again and again how old he is, as if they had heard wrong or remembered incorrectly the first few times. Then there's an awkward silence while they debate whether or not to ask and I debate whether or not it's worth explaining. I have heard about everyone's son/daughter/niece/nephew/grandchild/neighbour who ever was a late walker in the meantime. ;) 

People said that SB would become our new normal and I've been thinking about that a lot lately. It doesn't feel like a new normal, it just feels like normal normal. Some kids have wildly curly hair, some babies have colic, some kids are really small or really big.  I don't have to adjust to carrying Kingsley around the house because I've never known any different. He gets carried (and snuggled), he gets cathed, he gets meds, he has therapy. It's just the way he is.

Also, Kingsley is almost 17 months old now. He's about 22lbs, which is on the small side.  He still has his big blue eyes and his hair is still blonde. He likes cars, rocking on his bike, playing in the sandbox and water table, loud banging, funny stories, tickling, looking out windows, reading books, and he thinks his sisters are hilarious. He prefers me over everyone else. He is pretty quiet when we're out in public, but when he's comfortable he has a whole bunch of words like Mama, Dada, and Nana, approximations for Rachel, more, milk, book, ball, nigh-nigh, burp, bath, bubbles, up-up (to stand up in his stander), down-down (to come out of his stander), Grandma, Grandpa, and bye-bye, and signs for all done, no, and bye-bye.  He also likes to sing. He's started to colour on the art easel, stack blocks, roll or throw balls, and put things in and out of toys. He rolls both ways and wiggles to get himself around.  He sleeps through the night. :)

Right now, we're not really living with SB, it's mostly living with us. We pass in the hall, nod and say hello, and then carry on with our day.

The other blogs that were involved in the first link are these:

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.

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:  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. 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, February 28, 2011

Does he Walk Yet?

Of course this was coming. The point of no return. The time when it becomes blatantly obvious that something is 'up' with Kingsley. The time when people start outright asking me.  Perfect strangers asking me innocent questions I have no idea how to answer.  I've had a handful of encounters in the last month, each one equally awkward and full of me fumbling for the right words. It's not like I've had a year and a half to prepare myself or anything ;) I think the problem is threefold. One - these people jump out of nowhere with their darn questions.  I just get caught off guard. Two - I am one of those people who smile and giggle at the most inopportune times. Serious conversations, bad news, someones sickbed, I am the girl who reacts by smiling. The more inappropriate, the harder it is for me to wipe the stupid grin. Three - although I know full well that people mean well with their questions, sometimes people say stupid things. I usually have to pause and restrain myself and while forcing myself to say something polite, I usually just mumble mumbles in response.

So, here is how a few of these fabulously wrong conversations have gone. You know, so you can learn what not to say. You're welcome. ;)

Number 1, hospital setting

Lady wandering the halls: Oh, how beautiful, yadda yadda, how old is he?
Me: 13 months
Lady: Is he walking yet?
Me: No, he has spina bifida
Lady: Oh, I only wondered if he could walk.
Me: Um.
(Lady walks away fast)

OK, I blame the hospital setting for my assumption that people would know what SB was. She clearly did not. She looked at me like I had said 'No, he has a broken finger' like she had no idea why this random label would be relevant to her innocent question of whether or not he was walking.  Not that SB means you aren't going to walk or anything, but it explains why he isn't walking.  Lesson One: I live in a bubble. The people outside the bubble have never heard of SB.

Number 2, model home

Real Estate Agent: You like the house?
Jeff: Yeah, it's nice. We're actually looking for something more accessible though. Our son is going to be in a wheelchair.
REA: OH NO!!! Oh my gosh! I'm so SORRY!!!
Me: (stupid grin)
REA: How old is he?
Jeff: He's one.
REA: Oh, WOW! Are you sure? OMG, that's AWWWWWFUL.
Me: (grin gets bigger)
REA gives me a very puzzled look. Looks at Jeff, then back at me. Tries to figure out the joke. Decides I'm looney toons and only talks to Jeff after that and pretends I'm not there.

In my defense, it still seems a bit surreal. But really, the over-the-top sympathy responses are weird to me. I mean, look at Kingsley. What exactly are they sorry for? He rocks. Lesson Two: people think wheelchairs are the end of the world. *ahem* Not that I've ever thought that way or anything.

Number 3, shoe store

Sales Lady: So, is he getting his first pair of real shoes?
Me: Yep, first ones.
SL: Is he walking yet?
Me: Nope.
SL: Is he cruising then, like along the couches?
Me: Nope.
SL: Standing?
Me: Nope.
SL: Probably gets into enough trouble crawling around, eh?
Me: Nope. He doesn't move his legs. He uses a standing frame to stand up and he needs some shoes to wear in that.
SL: Oh, okay. We get lots of kids in here who use standing frames. You'll want something like this... (selects perfect shoes for King on the first try and fully explains the benefits of why)

Alright, I was going off the first experience where the lady had no idea what SB was. Turns out when I later said he had SB, the lady did know what it was and asked if I found out in utero and stuff like that. It was a high end shoe store recommended by King's PT and I guess they get a lot of special needs kids coming in for shoes. Lesson Three: I'm not the only one in this bubble after all.

Number 4, doctors office

Other Mom (to her mom in a loud voice while sitting right beside me): Aw, look how cute he is.
Grandma: Yeah, he's really cute!
OM: He's probably older than (her kid), don't you think?
GM: Oh, yeah, he's probably at least one.
OM: OHHHHH!! Look at his FOOT! Poor baby. Oh, poor baby! That looks like it hurts!
[Kingsley is wearing his splint on his right foot]
GM: Aw, poor guy! Oh, that does look like it hurts!
OM: Oh, I hope it doesn't hurt too much. I wonder what happened. Is he okay? What's wrong with him? Does it hurt him? [directed at me]
Me: Uh, nope. He's not hurt. Doesn't hurt him at all. It just keeps his foot in the right position.
OM: Oh. Oh. Well, that's good.
GM: Aw, poor guy.

I just didn't feel like having The Talk with these people. I could tell it would go down the same overly sympathetic route that would leave me either laughing inappropriately or asking them what was wrong with their kid (which would've been snarky since I heard them say why he was there and it was pretty mundane). Lesson Four: people are going to assume Kingsley is suffering and will say stupid things. I need to just not let this bother me.

Now that I've had these ever-so-enlightening experiences, I should really start coming up with some simple answers to have in my back pocket. Or I'll just fumble through the next couple of years and then teach him to answer for himself as soon as he can string a sentence together ;) Save me from myself!

Monday, February 21, 2011


I got something this weekend. Something that is one part smack on the face, one part big hug. That something is: perspective.

There is this fantastic documentary that came out in 2005 called Murderball. I saw it years ago after it was nominated for an Oscar and loved it then. I rented it again this weekend because, well, it's about guys in wheelchairs.

I just lost you, right? Documentary + Wheelchairs = wahn wahn waaaaahn.  No way, Jose. It's so good. Not at all what you're thinking. No tears, no sap, no feel-good-ness. I'm not really sure how to sell this to you, other than to say that you've just got to trust me on this one: it's a great movie. Have a look at the trailer  Jeff watched it with me and loved it as well. In fact, it was rated as the #1 sports movie to date. Yup. Sports movie.

Murderball is the original name for wheelchair rugby, which is a game for quadriplegics, meaning that these guys have impairment in all four limbs, unlike Kingsley who just has some impairment in two limbs.  None of the guys featured in the documentary were born wheelchair-bound, most had either contracted a disease that put them in a chair or had been in accidents (quite the Don't Drink and Drive ad).

There was one part in the movie where they featured a guy who broke his neck more recently. He's in rehab after his accident when he's introduced to one of the murderball players and the sport. He's still new to the chair, he's still a bit vulnerable. He still asks questions like, "Would I get kicked off the team if I recovered and started walking again?" When he goes home and his mom is excitedly showing him all of the accessible changes she's made to his living space, he asks for a moment because as awesome as it is, 'he's in a wheelchair and that really sucks.'  I was feeling this guy.

However, here is where the perspective came in. These guys aren't anything like Kingsley. For one, their level of injury is up in the cervical area for the most part, a whole huge thoracic section above King.  However, to be all woah-is-them because they're so much more impaired (and even writing that!) would be ridiculous. They are world-class, Olympic athletes. Also, because they weren't born this way, they had to accept that they once walked and now will not. In a lot of ways, they are more like me than Kingsley. It's not Kingsley that would have to adjust to being on wheels, it's me that has to adjust to that reality instead.  And if these guys can get over that and become Olympians, then perhaps it's time that I did as well. It obviously doesn't happen overnight, but at some point the choice has to be made to either pull the covers over your head and wallow, or get over it.

Time to see the silver lining, because yes, there is one.  Without the chair, these men would not have met. They would not have become Olympians. OLYMPIANS. For real! Talk about making lemonade out of lemons. Obviously, I have no idea where Kingsley will end up when he's older. For me though, without SB entering our lives like this... well, I'd be back at work instead of loving up all three of my kids every day, all day. I wouldn't have met this whole world of families that are going through the same thing as us, which would be sad because so many of them are awesome in ways that have nothing to do with SB! I wouldn't be blogging ;) I wouldn't be looking at/planning for an awesome new house. I wouldn't have developed a new appreciation for normal days where nothing and everything happens. My life would've just gone on, la-dee-da, without being forced to stop and really re-evaluate what is going on and what really matters.  Silver linings abound!
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