Friday, September 28, 2012

The Things I Wanted to Say...

So give me hope in the darkness that I will see the light
Cause oh they gave me such a fright
But I will hold on with all of my might
Just promise me we'll be alright
~ Ghosts that we Knew, Mumford & Sons

This week was Meet the Teacher night at the girls' school. Since they're going to school at the other end of the city by our soon-to-be-house, it didn't make sense to go all the way back home between, so we headed over to the closest library to hang out.

In the kids section of the library, my kids moved in like they were at home. Chairs were moved so Kingsley could get up to the table with the toys, Rachel sat down to see what computer games they had, Cordelia broke out the puzzles. There was another family there. A woman, her two daughters that were also playing with toys, and her two sons that were in and out of the shelves of books. They saw the wheels. I heard them asking their mom, pointing to him, sneaking peeks at me out of the corner of their eyes to see if I had heard them asking. I heard her answering, saying the usual things, telling them it was okay. I saw her hesitate for a second, then come over.

She asked me if he belonged to me. Nodded when I said he was. She said something about him, then rubbed her belly as only a pregnant woman can and told me that the baby she was carrying only has half of a heart. I wish I could describe her face as she said it. She was trying to be casual, just making conversation with a total stranger, but we both knew there was nothing casual about it. I could see the fear in her eyes. The pain she was feeling, but trying not to feel. I could see the tears that were always just almost there. I could see the intense bravery, the sheer will to be stronger than she actually felt.

I could feel the sigh leave me. In that moment, right there, I was back to that place where I sat three years ago. Back with the eyes that never smiled, the thoughts that were always somewhere else, the heart that was just a little bit broken.

We sat there and talked while our kids came and went, my three and her four. She told me about the surgeries her baby girl would be facing when she was born, all of the appointments she had, her worries about the other kids, her concern that she wouldn't be able to breastfeed, and the unthinkable fear that her little girl might not make it.

Her journey isn't the same as ours. They're facing longer hospital stays than us, separations that we didn't have to endure, long term issues that are different. But what we had in common was that last joyless pregnancy that we will never get back, the ache that feels like it will never go away, the dread of the unknown, and the simultaneous wish to just stay pregnant forever so that we don't have to face what comes next.

As we rounded up our kids and headed on to the evenings next events, she apologized for unloading all of it on me, said she was just glad to finally talk to someone who had been there and gotten to the other side. She looked at me, at Kingsley, at my girls and her face was full of that desperate hope that maybe, just maybe, this wouldn't be as bad as she secretly believed it was going to be. I had so many things I wanted to tell her. I wished so badly to sit there and take some of the burden off of her. I can take it. I have the benefit of hindsight to know that where she's at now is not where she's going to stay.

If I could've, I would've repeated to her the slogan of the SB world: pregnancy is the hardest part.  I would've made her remember the joy she felt when her other four babies were born and promised her that this birth would be just as joyful, that she really would love this child that much, even if right now she doesn't feel like it'll be the same. I would promise her that she will bond with this baby girl, even if she can't be with her as much as she wants to be. I also would have told her that although the dark cloud of pregnancy goes away, the hard part won't be over and for that reason, she has to learn to be selfish. Get through. She has to get through the hospital phase and she has to get through in one piece, and to do that she'll need to put herself ahead of everyone else. She'll have to demand help, demand sleep, demand support, raise that white flag and call in the troops because there is no possible way that she'll get through that part on her own. There will be epic highs and epic lows, not only because life will literally be hanging in the balance, but also because she'll be a hormonal disaster, let's just be honest about that.


I would also tell her that when she gets through the next year, she'll look back in amazement. She will feel humbled by all that she has seen and done and she will never see life the same way again. She will go through times where she feels like the worst mother in the world, where she wonders how her other children managed to survive with a mother who is so incompetent. She'll also go through times where she'll look at her children and secretly gloat that her friends wouldn't stand a chance against her in a Mom of the Year competition. She'll have times where she pleads for just one day without extras and other days where the extras are so routine that they don't seem like extras at all. She'll see the beauty in a normal day, where nothing happens and no one does anything exceptional. She'll begin to celebrate the most mundane of milestones and finally see them for the incredible gift that they are.

And before she knows it, she'll find herself sitting somewhere while her awesome kids are just being awesome kids and she'll come face to face with her old, scared, terrified, brave, wonderful self from three years ago and she'll realize that thing that someone told her three years ago is true: she's okay. She will still be watching awesome reality TV every other night, still be a slave to her laptop, still be staying up later than she should be, still lusting after boots, and still eating too much candy. She won't have lost who she is and her life will have kept on going. Her broken heart will be repaired, just like her baby girl's.




Wednesday, September 26, 2012

Relief

I can't tell you what it took, what extraordinary measures I had to take, but Kingsley is clearing up. I truly can't say, because one day Kingsley will not be two years old and he will never, ever want to hear these details, nevermind know that the whole interweb heard about them. So, I'll just say things are getting better and I never ever ever want to go through this business again.

And like a miracle, my baby boy is back. Instantly.

My sincere apologies go out to everyone who has encountered Kingsley in the last few weeks. That was not my little boy. The scowling, angry, grouchy, moody, yelling kid has finally left the building.

We're not through the woods yet, but I can see the light.

THIS is what he's been doing all afternoon: playing tricks, being sneaky, making jokes.

video

Tuesday, September 25, 2012

The Post in Which I Vent

It may sound strange, but I like the hospital. We've spent a lot of time there and although the news isn't always good, it's also the place where things are made better. Things are fixed. Problems are solved. Answers are given. It's a huge place, but I usually know where I'm going, will see familiar faces, and feel comfortable being there. I've even worked there, way back in the day.

Today, I am not so pleased with the hospital. I had one of those experiences that I've heard people talking about where nothing happens and you have to fight hard to keep the stink eye from creeping up onto your own face.

Kingsley's blocked. Last week we saw his pediatrician and she said to try getting him cleared out at home. I talked to the smartest people in the world (aka my SB peeps) and they told me to give him mega doses of PEG and try a suppository, then stand back and wait for the magic. I gave him the mega doses, give him the suppositories. Four more days of nada. We went back to the pediatrician who told me to give him the mega dose of PEG and head to the ER for a clean out if it didn't work. We've done the PEG and now Kingsley is boycotting all fluids, so this afternoon I took him over to the ER.

After explaining everything that we've gone through in the last two weeks they suggested that I give him a mega dose of PEG. Really? Fabulous. Welcome to WE DID THAT LAST WEEK and he doesn't want to drink anything. He suggested juice. Brilliant. Apparently missing the part when I said he stopped drinking juice and eating fruit which caused the constipation in the first place. Then said to put it in chocolate milk, at which point I stopped talking and just nodded and asked if we could leave now, because really, if I hadn't already tried any and all fluids I'd consider myself a bit of a moron and I'm not a moron.

So, if this Brand New Idea to hide his PEG in something he really wants to drink doesn't work, then we have to take him back to the ER next Monday and he'll likely be admitted and fed the PEG through an ng tube until he clears out. Sounds like fun, eh?

One more bracelet for the pile.

Monday, September 24, 2012

The Changeling

Someone has stolen my happy, sweet, charming little boy and replaced him with a grouchy, hollering child who is impossible to please. It's been three weeks and I'm exhausted. He's had days and moments where he returns, as delightful as ever, and then just like that, he's gone again.

It's come down to this. He got a cold at the start of September which lead to a change in eating habits for Kinger. This wouldn't be a big deal for most kids, but for a kid who needs certain things to remain a certain way, it was a big deal. I'll let you work that one out for yourself... which is exactly what King is not doing ;)

After a long week of trying to make things work again, we went back to the doc, who suggested all of the same things that the wonderfully helpful SB community had already told me. Unfortunately, Kingsley hasn't responded to any of that. That leaves us with one choice left: the dreaded hospital. That's where we're heading tomorrow. Ho hum.

In other news, we also got in to see the eye doctor last week for a whole bunch of tests and King is just fine. There was a very good explanation for his crossing eyes and it's not strabismus or farsightedness or shunt-related or anything that he was concerned about. He said it will go away on it's own and that we will just need to follow up every couple months to make sure he outgrows it. Phew! Although, not gonna lie, I was a teensie weensie bit disappointed that he wouldn't be getting glasses. You know where I'm going with this? How insanely cute would King be as Harry Potter flying on a broomstick for Halloween? *sigh* Maybe next year.

Tuesday, September 18, 2012

Do You See What I See?


Haha! September did not let us off that easy. Kingsley is doing so so so great. He's feeling great, he's back to his super happy, sweet self. We went to the paediatrican yesterday and everything is great.

Except for this eye thing. Do you see it? It's not the angle. It's sporadic, not constant, and it's brand new because we watch this carefully for it. Off to call the optometrist...

Saturday, September 15, 2012

.... And Breathe...

I feel like I've been hit by a bus and then had that bus park one of it's tires on each of my eyes. I can't keep them open. I feel like gravity is exceptionally strong today. I have never been so happy to feel so lousy, because I feel how Kingsley has looked for two days.

Rachel and Cordelia are sniffing, Jeff says he has a cold.

Kingsley is acting completely normal, alert, hungry, thirsty, happy.

I'm going to go to bed now.




.... also, today is three years since Kingsley was diagnosed in utero. I'm not upset about it. See? It really does get better. I had forgotten to even mention it.

Friday, September 14, 2012

September Limbo

Yep, it's September, the month of doom around here. The month where Kingsley freaks us out and we get bad news. It's kind of getting creepy, if I'm being honest. September 1st hit and I was reminded that my nieces birthday was the next day. It hit me like a ton of bricks. Pre-Diagnosis Day. The day we got the results of the blood test that said something was wrong. I stopped my brain from going down there. It's been three years.

September curse is in my head. So what if September 2009 was diagnosis month, September 2010 was syrinx-not-gonna-walk month, September 2011 was deja-vu-scare-month? Don't get upset about stuff that wasn't happening.

The days ticked by.  The curse loomed.

OK, I'll cut to the chase. Strange things are happening and I'm about 5 minutes from rushing him to the ER at any given point. I don't know if something is going on with his shunt or if I'm over-thinking. Either way, he's not himself and something really is going on.

Right now I'm in wait-and-see mode (which I now embrace, for those of you on the early end of this SB journey ;)). He's been grouchier and grouchier, eating less and less since the girls went to school. I have been excusing it as 'he's two' and 'he misses his sisters' and 'his entire world just flipped'.  We've also had people in our house doing renovations all week, so it's been chaos. Totally justifiable to be grouchy.

Then he threw up (because he was crying and upset).

Then he threw up, again (for no apparent reason).

So, what's a shunt-fearing mama to do? I called the paediatrician and the neuro nurse.

Kingsley has had two days of total lethargy. He eats very little and didn't drink for nearly 24 hours (he is ok with that now). He doesn't have a fever, isn't fussy like he's in pain, won't tell me something hurts, no sign of UTI, ear infection, his eyes track normally and open fully (when he can keep them open), and his nose is not running at all. Just wants to sleep or snuggle all day.

I'm giving him 18 more hours and then we're trucking it to the ER if he doesn't get worse or better.

Limbo is a blissful place to be, in a way. Shunt malfunction is not fun. That means surgery, a couple days in the hospital and my poor kids having even more trouble adjusting to September this year. There's always the chance that this is related to Chiari in some way I don't know about, which is far worse. Then there's a chance that he'll wake up ravenous and ready to play. Or with a cold. Either way, we'll get through it like we always do.

Tomorrow is the true Diagnosis Day anniversary, which is still far and away the worst day of my entire life. Whatever this September brings, we can handle it.

Tuesday, September 11, 2012

A Castle for a King


Our lives are overwhelmed right now by three things: school for the girls, getting our house prettied-up to sell, and building our new house. It's going to be a long, busy fall and that's fine because the outcome is going to be so awesome for all of us, not just Kingsley.

I've had a lot of questions about our new house that we're building and what we're doing to make it accessible. I recognize that we are excruciatingly lucky in that we are able to just build a house to meet our needs instead of trying to make do in what we have like so many others.We are also very lucky to have found builders that are in every way accommodating to our very long list of needs and wants, and who have even come up with things that I didn't think to think about.

We did consider buying a house that was already accessible, but the handful that came up for sale in the past couple of years always had the same flaw: they were built for adults. While I love Kingsley dearly, I am not giving up my master bedroom and ensuite for my 2 year old son. He's a kid and this is a family home! One day, when he's all grown up, he can go find his own house and have the big bedroom ;) It's important to me that while we technically are building this house for Kinglsey, there are 4 other people living there who are just as important as him, so no special treatment.

My first wish for our house was that it was completely accessible for Kingsley. No point in doing this halfway if it's our one shot at doing it. All entries/exits, all rooms, all spaces. The only exception was the closet in the master bedroom and the ensuite, because it's my (and Jeff's) space and he doesn't need to get in my business.


My second wish for our house was that it didn't LOOK accessible. I did some reading a couple years ago when the idea of an accessible home popped into our head and apparently people with mobility aides are prime targets for break ins. Also, let's be honest, sometimes accessible things are done with the function of being accessible at the expense of looking pretty. I wanted none of that and, thankfully, the designer I'm working with agrees.

Now begins my long list of the things we are doing to make this an awesome house for us, but specifically for Kingsley:

1. Floors: I had to fight against the builder and Jeff on this one, but we're going with laminate hardwood instead of real hardwood and tile. It's more durable, not bumpy, and I won't cry if it gets a little roughed up. In Canada, we generally don't wear our shoes in the house at all, but King only has one wheelchair so it's kind of like him wearing his shoes in the house all year round. That's a lot of yuck. Also, those of you with kids on wheels will relate, but most other people will want some kind of footwear to protect their toes/ankles from the wheeling demon! The basement will have some kind of carpet. We're still figuring out what kind will work best. There will be tile in the bathrooms, but to be honest, this stuff is over my head so I have no idea what kind except that it's super chic.

2. Levels: it's a one floor house with a basement. The stairs are extra wide and there's a rough-in for an elevator. At this point, we're open to a stair lift of some kind or an elevator or both? But Kingsley's too young to make those kind of uber expensive choices right now... although Jeff is strongly urging me to consider putting in the elevator now. We're making calls and crunching numbers. Maybe we'll have an elevator right away. According to Jeff, it's inevitable.


3. Bedrooms: there are three bedrooms upstairs and three downstairs. When we move in, we'll all sleep on the main floor with the girls sharing a room (which they are SO excited about). All the doorways are wide for King to get through. His bedroom has a built in desk and lots of space for a bed that I haven't figured out yet. We've also reinforced the ceiling above his bed in case we ever need a support/lift thing to get him in and out of bed. I anticipate he'll eventually learn to transition all on his own, but it's just easier to cover the just-in-case scenarios now! If he ever finds a way to get out of one of the windows in the basement then he will be allowed to have a bedroom down there, otherwise he's stuck upstairs. The girls can take a room downstairs whenever they want.


4. Bathrooms: because of the elevator, we didn't have room for a main floor powder room, but I'm not upset because that would make 4 bathrooms in a house that's not that big, which is a lot to clean! Instead, there is a full, accessible bathroom on both floors between the kids' bedrooms. They'll have a roll in shower, a wall mounted sink that is not ugly, a big space beside the toilet and room for King to wheel around. There's also a linen closet outside both bathrooms to make up for the lack of cupboards or storage, which is something we'll add as the kids grow up and we see what's needed. The ensuite will have a bathtub if the kids ever want a bath instead of a shower, but it's not accessible.


5. Entries: the front door, back door, and garage door will all be level so that Kingsley can just roll in or out. We have a lot that was pretty level to begin with, so obvious ramps and railings won't be needed. Our builder has been fantastic about ways to work with landscaping and such to get it to work.


6. Kitchen: the kitchen has probably been the hardest thing for me to figure out. On the one hand, I want it to be easy for Kingsley to use anything in the kitchen, on the other hand he's 2 and it'll be a while before he's cooking dinner for us, right? So, for now we're getting a regular stove and in the future, we'll get a new one with knobs at the front so he can use it. It's open and has space for him to maneuver where ever he wants to go. The island has the dishwasher on it, which we've raised up a bit so that he'll be able to reach the bottom to load/unload dishes easily. The fridge will be a side-by-side instead of having an unreachable freezer on top or in the way at the bottom. It'll also have the water/ice on the door so King can help himself easily. There will be a space beside the fridge that will be open underneath with counter space and a bar sink for King to use for whatever. The microwave is under the counter where he'll reach it easily instead of up higher. The cupboards on the bottom are all pull out drawers and things that he'll be able to access instead of cupboards that he won't be able to reach in to. I think that's about it... We went with the island instead of a peninsula because it's easier to scrap and redo an island than the whole kitchen if we ever think of new ways to make it easier for Kingsley to use, you know, in case he wants to be a gourmet chef and needs somewhere to practice. ;)


7. The Yard: Jeff and I met as lifeguards. We both grew up loving the water, however where aquatics made him want a pool of his own, it gave me a healthy fear of my loved ones drowning. In the end, the fact that the outdoor pools around here aren't actually all that accessible made me cave and so we're getting a pool. *choke* In the spirit of not doing things halfway, we're getting the whole yard done right away. There will be a concrete patio that'll be slightly slanted to make the exit from the house accessible. The patio will extend via a pathway to the front of the house and driveway. The patio will meet a fence that will surround the pool and that's about as far as I know for sure since we're going to rework some of the pool stuff this week. The other half of the yard will have my garden and grass space and then the whole yard will have a tall fence around it. I asked about how to make a pool accessible for Kingsley and it seems there isn't really a lot of ways to do it. We're too far north to do a beach entry (more things that went over my head, something about a frost line), so we're doing stairs in both the deep and shallow end, which will be easier for King to bum up or whatever. We questioned getting a lift, but were told that he'll never use it, especially when friends are around. Fair enough, no point then. I want the edge of the pool to have that little flip up lip, you know? So that something will slow him down if he somehow ends up gliding too close to the edge on wheels (which makes me nauseated to even type).

8. Extra's: we've done a few other little things like lower the light switches a couple inches and raise the outlets a little bit, make sure the windows cranks and locks are reachable, the door handles are all levers, and we added a laundry chute since there wasn't room for main floor laundry.


And that's it! It should be done by Christmas. Ish.  :)

Sunday, September 9, 2012

The Bucket Overflows

Oh, my goodness, the summer is over.

I can't believe I went an entire month without a post. It's been a little busy here and really I've had a wicked case of disinterest in writing. At all. Anyway, I'm dragging my lazy butt away from Pinterest and finishing what I started here with my list of things we've done this summer!

31. Go to the beach - we went to the cottage for a week. That's an entire post that I really need to get to. It was awesome. Lots of beach time!


32. Pudding Painting - the kids loved this. Kingsley freaked out, of course, as soon as his finger touched the pudding. I prompted him to wipe it on paper and then when that failed, to stick his finger in his mouth. Game on. His new fave craft.


33. Splash Pad - ah, can't take credit for this. My mom took the girls a few times. I should've taken Kingsley, but the walk is too long for my knee. Next year!

34. Sleepover at Grandma's - KINGSLEY WENT TOO!! I had a full 26 hours without children. To say that I was giddy would be an understatement. A big understatement. Bigger than big.

35. Playground by our new house - we have gone twice! It's a great park. That's another post as well because it got me thinking a lot.


36. Glittery ice - this was a Pinfail. Ice cubes + glitter + oil. Drop cubes in big bowl of warm water for glittery bubbles floating on the surface. It lasted about 35 seconds and ended with Kingsley freaking out and all of us being covered in glitter for a day. My lawn still has glitter on it.


37. Coloured Spaghetti - very awesome. Whole box of spaghetti cooked, split and soak in a little food colouring and water. Drain and play! DO THIS ONE OUTSIDE. A house full of cold rainbow spaghetti is notsofun to clean up.


38. Indoor scavenger hunt - another girls only game. Rachel enjoyed it, but Cordelia got bored. Maybe next year.

39. Slip and Slide - I found one for cheap at an end of summer sale. It has a little collection of water to slide into that Kingsley loved.


40. Slime - ooey, gooey.


41. More volcanoes! This time we did a big one in a waterbottle. Pretend we actually made a volcano like you did in elementary school ;)


42. Campfires and s'mores. It came with the cottage!


OK, so we didn't hit 100. I'm sure we did 100 cool things, but it felt like a big blur and there was a lot of repetition. We never did read all of the books on our shelves - I had to clear the shelves and pack them all up to do some reno's in the playroom.  Our apple test with organic vs not organic ended today and it was pretty interesting. Looks like pesticides really do prevent break down of produce? OK, it's not totally scientific, but kinda cool.

The organic apple is the far left on the left and the bottom on the right


All things considered, I was pretty impressed with the fun stuff we did. When you add in the ridiculous amount of renovations I've done on our house, it's been one of my busiest summers.

Saturday, September 8, 2012

Spectacle

"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.


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