Wednesday, February 4, 2015

Countdown to Number Six

One week from now, Kingsley will be in surgery for the sixth time.

The big M&M.

I'm having a lot of trouble with this one. Like the tendon release surgery last year, this is elective. It's our choice. His life does not depend on this . It falls under the category of "quality of life", as in, we hope to improve Kingsley's by doing this surgery. This massive, long, complicated surgery.

Also like the last surgery, we have had a lot of time to plan this one. To sit and ruminate. To think of all the things that could happen. All of the things that could go wrong. So, I've had a headache for about a week that just quietly throbs behind my eyes. In a way, it's like when I was pregnant with him and just had to act normally while inside it was the one, single thought always in my head: the countdown.

One week.

Seven days.

Actually, less than seven. We go into the hospital on Tuesday so that Kingsley can be prepped in advance, which I hear is quite unpleasant.

I have five and a half days to finalize all of the childcare arrangements for the girls, clean my house from top to bottom, pack for him, pack for me, spend as much time with the girls as I can, and somehow get Kingsley ready for what is about to happen to him.

Kingsley knows he's having surgery, he knows what the outcome is going to be. He's not altogether impressed with the idea, but he knows that I will be with him the whole time and I will make sure that he's not in pain. He knows about the drains, though I'm sure he has no idea what that actually means. Sometimes it's hard for kids to wrap their head around these things. And adults, sometimes it's hard for adults to wrap their head around these things.

My biggest (okay, second biggest. Maybe third.) fear right now is that the surgery will be cancelled. That all of this anxiety and planning and preparation will be for nothing. I want to put Kingsley in a bubble and protect him from any germs. Then I want to fast forward to about 3 days post op and have everything healing smoothly.

Breathe....

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. :)
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