Monday, October 20, 2014

Dear Parents

On the first week of school we had Kingsley's teachers put a letter in all of his classmates communication bag to be sent home. This is something that we will likely do for the first few years he is at the school, until he's able to just talk about himself to his peers on his own.

Our reasoning for this was a few things. First, we know that people are curious. The parents of his classmates are going to wonder why a kid his age is using a wheelchair. The kids would find out, but if other children are anything like my children the parents will only hear half the story and it will be a very confusing half. We don't want his wheelchair to be the elephant in the playground that no one wants to ask about. We don't want awkward hushing when kids comment on it. We don't want Kingsley to be left out 'just in case'. There is fear of the unknown. We put the parents out of their misery and just told them outright.

Second, people don't know what SB is and this is a simple way to spread awareness about what Kingsley's diagnosis means for him and where to get more information on it.

Third, it was a quick and easy way to establish our hands-off policy regarding Kingsley's wheelchair and let families know to start watching out for latex.

And finally, we want parents to be able to talk about SB and Kingsley easily with their children. If their child does come home with a question about whether or not Kingsley can stand up for example, they have the information to answer them frankly and discuss at their child's comprehension level.

Here is the letter that we sent home (it had a cute picture of King at the top that Jeff added in at the last minute and I don't have, so I'm faking it with this one). Like I said, I have had a few parents mention how much they appreciated it.


Dear Parents,

My son, Kingsley, is in your class this year. He is easy to spot - he’s the one on wheels! Some of the SK’s might remember his sister, Cordelia, from their class last year. It’s natural to be curious about people that are different and we want his friends to be comfortable around him instead of making him and his wheelchair a taboo subject.

Kingsley was born with spina bifida - a hole in his back where the spinal cord was exposed and nerves were damaged. The hole was repaired right away, but the damage is permanent. He is not sick, it is not contagious, and he is not in pain. He is just like every other kid in the class, except that he is paralyzed below the hips and cannot stand or walk. He is okay with this! He loves his wheelchair and is very independent with it.

His wheelchair is pretty cool, but we are very strict about kids not moving it. This is both for his safety and because he doesn’t like it. It would be like another child picking him up and moving him against his will or giving him a big shove - a little bit rude and also pretty dangerous. It’s okay to look though! And if you’re quick you can get a look at his sticker collection or the flashing front wheels.

Kingsley has a suspected latex allergy. He has to stay away from it as much as possible. If you bring in something special to share at holiday times, please make sure you do not send in balloons, latex erasers or pencils with latex erasers.

If you want more information about spina bifida have a look at www.sbhao.on.ca If your child comes up with more questions that you’re not sure how to answer, feel free to email me anytime (email address).

See you at school!

Jill, Jeff, and Kingsley

Tuesday, October 14, 2014

Kindergarten

I suppose I should start off with excuses about this blog being dead (oops). I don't have much. My laptop was dying a slow death and I have a new one now.

Kingsley has been in school for a month and a half now. I was very anxious about kindergarten. In Ontario, kids start Junior Kindergarten the year they turn four, followed by Senior Kindergarten the year they turn five. Both are optional and both are full days, all day. The majority of kids go.

We had a few preliminary meetings with the school through the spring. I was feeling pretty confident right up until the week before school when I discovered that staff had been shuffled and Kingsley would be having new teachers we did not know, a new principal we had not met, a new ECE we didn't know and whether he'd have an EA in the classroom and how much and who it would be was all unknown also. And new secretaries who would not tell me anything.

I may have panicked.

A lot.

Thankfully, the school VP stepped in and we were able to see the classroom, meet the teachers and get names for everyone else before the big day.

The Tuesday after Labour Day, I dropped Kingsley off for his first day of school. He was beyond excited. Like, angry-at-me-for-taking-so-many-stinkin-pictures excited. Begging-to-go-RIGHT-NOW excited. "See ya, Mom" and not-looking-back excited. He was just so ready for it.


The girls also had great first days. They were more anxious about who their teachers were and who would be in their classes, whether they'd be with friends. It all worked out!


Amazingly, there have been very few blips. He LOVES school. He is so disappointed by weekends, asks every morning if he can go to school. He loves to be there, loves his friends, loves the playtime. He doesn't love the school work part, his pre-printing skills are feeble attempts at best. Whether this is a lack of interest or a long history of taking his time to develop skills, I'm not sure.

As with preschool, Kingsley is blending in like every other kid. I went in and spoke to the class about spina bifida and Kingsley's wheelchair in the first week. They were completely unfazed, mostly wanting to discuss their various scars or differences. I also sent a letter home for all of the parents explaining briefly that Kingsley has spina bifida, what it is, that he is paralyzed but otherwise just like their kids. It went over really well with the families I have since spoken to.

So, things are going well here. School is a piece of cake! Who would've thought?

 he's SO MAD that I stopped them for one more picture!

Friday, May 30, 2014

Hey There, Stranger

WWe are all alive and doing well ;) I'm going to attempt a recap of the past few months without boring you all. 


I guess first was Kingsley's MRI. It went just fine and the results were undramatic. Everything is stable. I have been panicking about Kingsley's scoliosis for the past year or so, I feel like it is getting worse. King's neuro did say that before we do anything with ortho to correct or stall the curve she would like to do a detethering. But right now no one thinks anything needs to be done, so basically chill out, mama. He will have an x-ray in the fall and they'll see how things are then. 


In other medical news, we have made the official, official, official decision to do the MACE and Mitrofanoff. The plan is to do them in February, right after Christmas and birthday excitement  are over, when there will be a lot of time to recover before summer. I'm. So. Nervous. I know it is the right decision for him, I'm so excited for it to be over. 


As May winds down, I'm so aware of the end of the school year coming. While I do love summer, it's dawned on me that come the end of June, Kingsley and I will not be alone anymore. The girls will be off for the summer and then they all go to school in September. My days at home with my baby are dwindling and that makes me sad! I have loved being at home with these kids far more than I ever thought I would. 


So, what have we been up to? Gardening, swimming, reading, and yoga mostly. I am forcing my interests on my children ;) Kingsley has recently gotten two new sets of wheels. Obviously, the kid cannot have enough wheels in his life. The first was a Radio Flyer Cyclone. It isn't made for kids who can't use their legs, but it works for him. Unlike the plasma car (which we also have and he likes), his legs have somewhere to rest without having to strap them on and the seat has a bit more stability. 


He also got a bike! Kingsley has been obsessed with bikes this year. He begs for one. He pleads for one. And like a gift from an angel, today one just showed up! King goes to a play group where there is a fabulous volunteer who has an adult son with SB. He had outgrown the bike, so they've given it to us! To say that Kingsley is in love is just such an understatement. He can't stop talking about it. He has made me promise over and over that he can ride it tomorrow aaa soon as he wakes up. It's such a gift. 


The rest of our days have just been filled with regular life stuff. I am on Instagram @jillbells That seems to have taken the place of my blogging lately. So much lazier. ;) 

Tuesday, April 1, 2014

Sunshine

I feel badly that I posted a mopey post and then did not come back and blog for over a month. No worries, things are a-okay. It ended up being a good reminder for me about what happens to my head when I don't look after myself: after a week of the flu, not eating well, not working out, I could feel those ugly thoughts creeping up. That's about the only time they happen now.

Anyway, a few days after that I was back to normal and we haven't looked back. Everything and nothing have happened since then. I had my birthday, Rachel had her birthday. We had the longest, coldest, snowiest winter in decades. King had an MRI today to check everything over and see if his scoliosis is related to a tethered cord and if something needs to be done there. We've been doing more school planning, which has been great. Basically, we are all just doing really well. 

Who can be grouchy in the springtime sunshine?? 

Thursday, February 20, 2014

Through the Looking Glass

Every now and again I will look at Kingsley and instead of seeing my charming, lovely little boy, I will see someone else. I'll see his diagnoses. I will see how 'society' sees him. I will see both the Kid with Spina Bifida and the Spina Bifida Kid. I'll see his future surgeries, his equipment, his therapy and procedures, his struggles and his challenges. I'll see pity and sympathy.

I won't see Kingsley at all.

It doesn't happen often, it really doesn't. I don't have time to dwell on these things, I don't have the energy. I know there is no point in wishing things were different, no point wondering what could've been done differently. I know. 

But every now and then, whether it's something I've read or something someone has said or in the way someone looks at him, I will suddenly see Kingsley as someone who doesn't know Kingsley. And it crushes me. 

Sunday, February 2, 2014

Schmanniversary

It was Groundhog Day for about 19 hours before I realized that Groundhog Day was an anniversary for Kingsley. It's been three years since his tethered cord surgery (surgery #4 for him). I probably wouldn't have remembered at all except that when I told King we had to go to the doctor tomorrow he said he didn't want to have another surgery.

It happened last week also. And the whole week after his birthday. It's not that I forgot that these dates were big deals in Kingsley's life once, but just that I didn't remember. I didn't remember the anniversary of the first day I held him. The day he got his shunt (surgery #2 - I remembered the next day). The day he moved out of the PCCU. The day Jeff first held him. The day we brought him home.

For his first three birthdays, the events were burned into my head. There were a few days leading up to his birth, then the eleven days afterward, I would relive the moments in my head as the anniversaries rolled by. I remember the dates of his surgeries. The anniversaries of the days he came home, every time. I wondered if I would always remember them... I guess not.

His first year seems a long time ago now. Life rolls on. Things just get better. :)

Saturday, February 1, 2014

School

It is February and I have a four year-old, which in these parts mean one thing: SCHOOL. I know it's different across the country and everywhere else, but here our kids start Junior Kindergarten (JK) September of the year they turn 4, which means it is now time to register my boy. It's optional, I can wait until Senior Kindergarten (SK) or even grade one, I think. But I don't want to, he's ready for this.

Step One is registration. This happens right now. It involves contacting the school for a registration package and tour of the school, which we didn't need because the girls go to the school and I've been there enough. If your child is like most children, you drop off the paperwork and that's the end of it until the orientation stuff happens later in the year. If you're child is like Kingsley, you have to casually mention that to the school secretary. It's hard to be casual. We get to fill out all of the paperwork and then move on to step two.

Step Two is a meeting with the principal. The school secretary is going to call us back with a time. I'm told this is more of a casual meeting, just to feel things out and understand who Kingsley is.

Step Three is a big meeting with all of Kingsley's people and all of the school's people. We discuss what he will need to be successful in school and then how that will all be put in place, so I'm told.

I am not all that concerned at this point. Kingsley's needs are pretty straightforward:
* he needs a barrier-free environment, which the school is as far as I can tell
* he needs help with his bathroom business and medicine during lunch hour
* he needs someone to transfer him from his wheels to the floor or to a chair and then back whenever he wants
* he needs a chair at table height that is adapted somehow so that he can sit stably to do seat work and eat comfortably
* he needs someone to help him with his outdoor clothes, especially in winter and possibly help him navigate through recess
* as of now, he needs someone to make sure he eats, drinks, and doesn't choke or puke; this could change if he just decides eating is cool

The school should be able to figure all of that out. We are hoping that there will be an EA (educational assistant) in the room to help with the transfers and transitions to/from outside and hopefully with snacks/lunch and recess. I have no idea how the bathroom/medicine stuff works, but it will be figured out. Kingsely's current PT will help get the chair ready by September.

I have homework to do in the meantime. First, I have to figure out how to answer all of this paperwork. There are so many questions that don't have simple answers. Second, I have to make one of those All About Me books for Kingsley - an easy-to-read book discussing Kingsley's strengths, interests, diagnosis, needs, and whatever else I think his school should know about him. I have seen fabulous ones that are super creative. I am not creative. This will take some figuring out.


In the meantime, we are still in the depths of winter and up to our eyeballs in snow. It warmed up enough that I was able to take Kingsley out to play in the snow today, which he loves.


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.


Monday, January 13, 2014

It's A Big Deal

A couple of months ago I was out at Target with Kingsley and being unfamiliar with the store, we wound up in the underwear aisle. Kingsley, naturally, started screaming and cheering the fact that there was Thomas the Train... underwear. My heart squeezed. I turned him quickly and got out of that aisle. Fast.

Underwear is like the Holy Grail in our world. Social continence - the ability to stay clean all day long, though with non-traditional methods - is a huge quest. The very very bottom of the spinal cord is the part that controls continence, so nearly everyone living with SB has to work to achieve social continence in some form or another.

I have probably said far too much about our quest for social continence ;) It has been a battle for about a year and a half now.  I have been googling and googling and emailing and messaging and reading and consulting and trying and trying and trying again.

And then this weekend, Kingsley wore underwear all day. And all day today.

Underwear. 

All. Day. 

Kingsley. 

Do you know how long I've waited for this day? It was pretty darn exciting. 

I kind of feel a teenie bit like we are cheating on the underwear thing. While our #2 issues have been completely, totally resolved (ALLELUIA!!!), the brand new #1 issue is still there. I can't figure it out, but as the timing was exactly when we figured out #2, it must be related. So, anyway, to address that business, I got Kinger what I call men's maxi pads. They're Gentlemen's Incontinence Pads, but let's be real - they're blue and shaped like a pear instead of an infinity loop. Whatever you want to call them, they are significantly cheaper than diapers. Although, it was more awkward buying them than when I stock up on KY (which is not a wink wink thing, it's for Kingsley and I do buy about 10 tubes at a time and get a lot of averted eyes by cashiers). 

So, with one of those guys hidden in Kinger's Toy Story unders justincase, he is good to go! 

He is still going to have to wear a diaper at night for the foreseeable future until we get that stuff worked out.  He doesn't actually care what he's wearing or even notice. I mean, other than the big underpants parties we had all weekend. ;) 


However.

As thrilling as this is, it is not a permanent fix. The things we are doing now, the way we do them, Kingsley cannot be independent. It is different for every person, there are so many relevant factors - gender, leg/body functioning, age, continence issues... but we have come to the conclusion that for Kingsley to be both continent and independent, surgery is his best (and likely only) option. This has not been an easy decision, despite my previous thoughts on it. The procedure(s) we are investigating are far more invasive and scary than we first thought. The recovery will be long and unpleasant. The risk of complications are real. But, we have yet to find someone who regrets having the procedure done. The only regret we have heard is the regret that it wasn't done sooner, when they were younger. I don't know when we will be having it done, but the decision has been made. The next chapter will begin. 

Monday, January 6, 2014

Winter on Wheels

Winter is here and it's been a brutal one. I know, I know, we live in Canada, the snow should not surprise me, but I kind of feel like we've had more than our fair share this year and now to add insult to injury, we are breaking records with the cold and wind. It's dreadful. It's only the start of January.


I think part of why this year seems worse than previous years is that it's the first time I've had to prepare all three kids for the horrid weather. Up until now, Kingsley has gone outside in the winter when I was interested in going outside... which is rare, hovering around 0C and has a nice, friendly snow. This year, he is in preschool and at preschool they go outside, no matter the weather. He plays outside at preschool, so now he thinks outside is all fun and snow is great. My glory days are over. This year, we play outside. Blech.

The weather shifted and snow hit the week Kingsley had his casts off, which was a godsend since you cannot fit snow pants or boots over casts and leg splints. I bought him Stonz boots again with a sherpa liner for warmth. They've been amazing. They fit amazingly over his AFO's and are very warm. I am going to cry when he outgrows these boots. There's nothing special about his snowsuit or any of his other gear, but putting it on is ridiculous. Dressing a typical child is not all that much fun. Dressing a child who needs endless layers to protect skin he cannot feel, who can barely sit up in that many layers, and who cannot push his foot into a boot is a downright gong show.


Remember the scene in A Christmas Story with Randy's snowsuit? This is my life right now. I work up a sweat, I'm exhausted. And many times Kingsley has laid on the floor when we're done, flailing around yelling about how he can't get up. Gong. Show.

Anyway, other thrilling escapades involve wheeling through snow, snow drifts, melting puddles of slush, puddles in general, salt and dirt. If you thought pushing a stroller through snowy sidewalks was bad, imagine not being able to tip that stroller back to get over the obstacles. Imagine lifting that dirty, snow covered stroller into your trunk over and over and over. Imagine pushing that dirt and snow covered stroller right on into your house.


I hate winter.

I'm trying very hard not to entertain the dismal thoughts running through my head about how Kingsley will cope with recess next year when he's in school full time. And when he's older and all the other kids are running through the snow. He'll be alright, right? He's not the first kid in a wheelchair in the winter.


If there's one good thing to come out of this, it's that Kingsley has started pushing his wheels with the hand rims instead of the actual wheel, to keep his hands clean.

Whine, whine, whiney, whine, whine. 

Sunday, January 5, 2014

Help Yourself

The other day, in the midst of holiday chaos, Kingsley dripped something on his shirt. This upset him. He wanted a new shirt. I was busy. 

Before that moment, the ridiculousness of such a scenario had never occurred to me. I (we all) had just fallen into that dreaded trap I swore I would never let happen: we were babying Kingsley. At that moment of frustration and annoyance, I looked at my nearly-four-year-old boy and said the most obvious thing...

"Go get it yourself." 

Despite the fact that we had built a completely accessible home, with an accessible bedroom, with an accessible closet that had low shelves and racks that he could access, I had just never before let him get his own shirt. How silly of me. 

That day, I showed him how to open his closet, pick a shirt, and take it off the hanger. Something my girls could do by the time they were two years old. 

Then came the next conundrum: he couldn't take off his shirt. Or put on the new one. I've been talking about teaching him how to do this, but always said I didn't know HOW. How do I teach a kid to put on a shirt while he's sitting on a chair? Enough wondering, we started working on it, figuring it out together. 

Today, Kingsley took off his PJ top and his undershirt all by himself. He was proud. I was proud. Another random milestone. 

My kid took off his own shirt. 

Who would've thought something so simple would give me so much joy? 

Next on our list is brushing his teeth. More excuses from me: he can't reach the sink. We brush his teeth while he's having other things done. It's another thing I have to stop and do everyday, but it will be worth it. And, really, it's past time for this stuff. 

So, I put him in his wheelchair, put a cup of water and his brush and paste on the counter and let him go. He dips his brush, opens the (Thomas, fluoride-free) toothpaste, puts some on the brush, then closes it. We each take a turn brushing, then he rinses the brush in the cup, lines everything up and carries on with whatever we're doing. He loves it. 

He's also able to be more independent in the bath, now that they aren't power-baths, trying to get him clean in the 30 seconds before he poops ;) We have time to let him wash his own body, help wash his hair... Basic stuff. Important stuff. 

Kingsley is turning four soon. Very soon. Time to let him grow up. 


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