Showing posts with label functioning. Show all posts
Showing posts with label functioning. Show all posts

Thursday, December 12, 2013

Duck and Cover

I am so overwhelmed by SB right now that the last thing I feel like doing after the children go to bed is writing about it or thinking about it in any capacity. I feel stuck in a constant state of loathing for SB and all of the baggage that comes with it. But for the sake of documenting this little chaotic phase of my life, here is what we're dealing with. 

The Ugly: Yeah, that stuff. We're onto the next phase. I kind of thought, 'hey, we'll start this next procedure and it will work (or not) and that will be it.' Nope. It takes a lot of trial and error and tweaking and adding, subtracting, adjusting. Ugh. I'm so over it. More than anything, I wish I wasn't flying solo on this. I wish there was some professional here who knew about these things and could support and advise us. The first couple of weeks I felt quite desperate and flailing, like walking around blindfolded. Fortunately, my SB peeps have pulled through and I've tapped into the underground world of Moms Like Me who are willing to talk about the unmentionable stuff. Thank God

Speech: King is in speech therapy again. He flips his she/he, her/him all the time. At first it was awkwardly funny when he'd call a man 'she' or a woman 'he', but now it's downright frustrating. We're also working on F and the elusive K sounds. 


Food: I just finished an OT feeding group where I spent two hours a week trying to figure out how to get Kingsley to eat. I swear, my life revolves around getting things in one end and out the other. He hasn't gained weight in the last year, has barely grown. I need him to eat more and eat something other than cheese. It would be nice if he would voluntarily eat it as well. You know that saying 'kids won't starve themselves'? It's not true. For real, that's part of what I learnt. Kingsley falls into the small percentage of children who just doesn't want to eat a lot of the time. There's a long history about why, but I'm so tired of thinking about it. Long story short, he is making some gains here. I think I've managed to boost his caloric intake and he is getting more brave about trying new foods, and food in general. Yay!

Fine Motor: Kinger is also doing his own OT group, this one for fine motor school-related things like colouring and cutting. It's aptly named 'Cut and Colour'. He's doing great with it. For some reason, he is incredibly interested in doing both when in a small group. Not remotely interested at home. Ah well. Maybe that means he'll do it at school next year. 

Sports: This hasn't happened yet, but I've enrolled him in an amazing program called Making Waves. Starting in January he will have 1:1 swimming lesson, which is awesome. We've also borrowed the same sledge we had two years ago and I'm pumped to get him out on the ice... when our days are a little less booked. 

Surgery Recovery: He is doing great, now that his casts are off. His incisions have all healed ridiculously quickly and his legs are still good. I am super paranoid about them tightening up again though. Twice a day, I give him a leg massage and go through a bunch of deep stretches, then two more times a day I just do the stretches. It's time consuming and sometimes, the last thing I feel like doing. He also wears his leg splints to bed, which he's not complaining about. He's also had a bazillion appointments related to his legs. OK, maybe not that many, it just feels like it. He has new AFO's now, which required new boots and check ups. 

Other Stuff: Then there's all of the monsters lurking under the bed, the things I notice and wish I wasn't noticing. I feel like his back is wrong. I'm not sure how to explain it or what is going on exactly, but he's not straight. I don't know how to fix/prevent it. I'm not sure I want to think about it very much, but obviously I can't bury my head forever. He's also been coughing/choking a lot lately, which is where my brain goes crazy and tells me that he'll need a decompression RIGHT AWAY. That is the stuff of nightmares. Of course, it could be the dry air giving him a tickle or a cold or something simple like that. Oh, I just want it all to go away. 

And between all of this SB overload, we have Christmas. I adore Christmas and love extending the Holiday Joy as much as possible. I am trying very hard to not let SB trump that joy. 

Laura did our photos again ;) http://www.everylittlephoto.com/

Monday, November 18, 2013

Casts Off

The casts came off today.

It was a very strange day. Kingsley didn't want to take the casts off. He kind of gets set in his ways that way, once something is a certain way it has to be so. I don't think he was actually attached to them, but we did make the mistake of calling them 'Thomas blue' to match his Thomas costume and so he was very sad that he'd have to have his Thomas Casts taken off. He's very sad that Halloween is over.

His casts were cut off without any drama (though don't you have that moment of panic where you're sure that the saw is going to accidentally slice through skin??) and his surgeon came in to check on him and see how his legs had healed. She was very happy, they're straighter than even she thought they'd be able to be.

Kingsley lay there as the three of us stood over him - the man with the saw, the surgeon and I. I was watching his legs as we were chatting and suddenly I noticed something.

"He can't kick."

His surgeon tried to reassure me, he'd probably need some time to strengthen the muscles again, he'd get the strength back...

"No, I mean he couldn't kick. He can't do... that."


video

This whole thing came about because Kingsley has a bit of hamstring, but no quad. He can pull his legs up, but not put them back down. He bends at the knee, but not straighten. Not at all, ever. He pulls his legs up, bending his knees and unless gravity pulls them back down, they stay there, bent. 

"IT'S A CHRISTMAS MIRACLE!!" the saw guy seriously said that with a huge grin and I almost high-fived him. 

His surgeon thinks it's more likely that he was so tight he wasn't able to push back against it, but she couldn't say for sure. We will have to see what happens next. 

I made him do it over and over and over and over. We got home and I made him keep doing it. 

In. Out. In. Out. In. Out. 

I was so excited! 

You know the term 'bittersweet'? It pretty much defines SB. Right in the middle of giving King another thumbs up for kicking me I heard this bored voice in the back of my head: so what?

So what. 

Really, what does it matter? He isn't going to walk. He isn't going to stand. It's very sweet that something new and unexpected happened, that the surgery was such a success, but nothing really changed, that's the bitter truth. 

Wahn, wahn, wahn....

I am very thankful that the surgery was such a success. I'm trying to see this new little movement as a sign that he really did need the surgery to happen. As a parent, entering the world of 'elective surgeries' is a very scary place to be. Potentially putting Kingsley through a surgery that ended up being useless somehow making things worse would be dreadful. That didn't happen, so huge sigh of relief there. 

Before and After: the top is before, which should be obvious. This is as straight as his legs would be when he lay on his tummy. His feet are upside down, sorry, but you can still see how pronounced his 'ballerina foot' was compared to now when it's just a foot. 

Tomorrow, we see his orthotist and he will be fitted for new AFO's and we will talk about RGO's. Kingsley has loved being able to be lifted into standing at any time with his full leg casts/splints on the last 5 weeks. He has finally expressed an interest in standing and walking, which has never happened before. This is perfectly timed with new gear that will get him more independently upright than his stander. He will need a lot of motivation to use RGO's and he seems to have it. Fingers crossed for our next adventure.  


Sunday, October 20, 2013

Recovery

Kingsley's recovery from his tendon lengthening has been so interesting to watch. It fascinates me especially since I had my own ortho surgery last spring. To say that our recoveries are night and day would be an understatement - he puts me to shame.


Kinger was discharged Wednesday, the day after surgery. They were able to modify his own wheelchair with a foam covered board to rest his legs on. His casts make it difficult for him to sit back all the way in his chair, so he ends up being slightly reclined all on his own, like they wanted him to be. Huge relief.


He also fit in his own carseat! All of these things I was worried about and so far both are just fine.


And, he can (just barely) fit in his stander!


As for how he is doing, he is amazing. They gave him Tylenol and Advil in the hospital, but I haven't given him anything since we got home. He hasn't shown a moment of discomfort or complaint. He was tired the first two days, going to bed early and sleeping solidly, but that's it.  He can commando crawl, dragging those beastly things along behind him and he can even roll himself over both ways still, it's quite amazing to watch. He's also figured out how to sit on his own. I realize these things seem like mundane feats for a 3.5 year-old, but considering he cannot feel anything from about his waist down, he has to work out balancing without feeling what he's balancing on and now his two biggest props (his legs) are bound in a completely different position than he's used to. So... amazing, yep.


Tomorrow, he has these casts removed and new ones put on. I'm not sure if he'll be wearing these zimmer splints the whole recovery or not. Right now, he kind of reminds me of a hockey goalie. How very Canadian ;)



Friday, October 11, 2013

Counting Down

I love count downs. Count downs to holidays. Count downs to Christmas. Count downs on the radio. Turns out, though, I hate count downs to surgery.

Kingsley's surgeries so far have been like this:

#1, back repair
Doctor: Congratulations, it's a son. I'm going to prep him for surgery now.

#2, shunt
Doctor: Remember that shunt I said he'll likely need? He needs it. I'm going to prep him for surgery now.

#3, decompression
Nurse: the doctor just looked at the images. He needs surgery. You've got less than a week to get things organized.

#4, detethering
Nurse: the doctor just looked at the images. He  needs surgery. You've got less than a week to get things organized.

#5, tendon release
Doctor: when do you want it? Five months? OK, see you in October.

Five months is far too long to sit around thinking about the worst things that could happen and all the ways that this could go badly. The last month has been the worst. Between Kingsley's endless stream of doctors appointments regarding his bowel fun, there has been the consult for surgery, pre-admit appointments, a urodynamics (which he did like a boss), OT appointments, PT appointments, SLP consults, preschool discussions, and finally, a tour of the hospital to desensitize Kingsley to what was going to be happening. It's been a lot to take in and I'm just drained from it all. Spina bifida's impact on our lives ebbs and flows, and lately it's flowing over my head.


I think the hardest part of all of this has been not knowing what will happen after the surgery. Word on the street is that it could go one extreme way or the other: either he will carry on as normal, but with casts or our lives will go into a dead stop for 4-6 weeks while he has the casts on. His PT does not think we will be able to modify his wheelchair to accommodate casts and so will have to use a loaner from the centre which I haven't seen, but has been described as a beastly thing. If he can't get around in the wheelchair, can't crawl, can't sit unsupported, and can't go in his stander, the poor kid will be immobile. We have requested a scooter board be made for him, but it's not ready yet. Another huge issue is how he's going to fit in a carseat and where his legs will go while he's in one. It's another thing we won't be able to work out until he has the casts on him. And of course, how heavy are these casts going to be??  Even if I get him in a carseat, will this modified wheelchair fit in our van without breaking my back?

I am looking forward to this being over. Not only because I'm beginning to dread the casts, but because I'm excited for when the casts are off and he is able to do more. I can barely get his AFO on his one foot now and hate putting him in his stander because I can't get his legs straight enough and I'm constantly worrying if I'm doing more harm than good.

And so, we count down the last few free days before surgery. It's a nice long 4-day weekend that we have to visit with family and just hang out. Tomorrow, we are going to a wedding, Sunday is Thanksgiving, and Monday we will spend just enjoying our time together. Tuesday at 8am, his surgery begins. Counting down...

Saturday, September 7, 2013

The Little Fish

Jeff and I met as lifeguards, have I mentioned that? We both grew up in water. I did swimming, he did diving and waterpolo. We both love being in the water and are completely comfortable there.

Rach is reenacting our lifeguarding days

Having a child who can't use his lower body stumped me. How in the world would he fit in our family? How would he go to swimming lessons? How would we take him to the beach? What in the world would he do in our backyard pool??


I started taking Kingsley swimming when he was a baby at our Centre which has a very, very warm little therapy pool. At the time we moved into this house last spring, I'd say Kinger was the most comfortable in the water of the three of them. He didn't panic when he was dunked (though he didn't like it either), he could float almost on his own on his back, and he really loved just hanging out in the water.


Through sheer exposure to water, the girls have magically learned to swim this summer. It's truly blown my mind. Rachel has gone from a timid floater to swimming in the deep end all day, every day. Cordelia isn't comfortable in the deep end yet, but she's gone from freaking out if her face got splashed to swimming underwater.


Kingsley is finding his way. He wears a puddle jumper in the water, which is a fabulous invention, in my opinion. In June, I had to be thisclose to him to make sure he didn't tip over and get a big mouthful of water. He didn't know what to do with his arms, couldn't stay level, and only went where we took him. I predicted the most boring summer in the world, having to stand in the shallow end keeping him from drowning while everyone else got to actually swim.

workin' on the chest muscles

Fortunately, I was totally wrong. King is a little fish! I don't even have to be near him, he just swims around using his arms. If his face goes in now, it's because he wanted it to (or because Jeff dunked him). He likes to hang out on the stairs and play with his trains (aka bath toys), take the dog for a walk (aka hang onto the tube for the automatic pool vacuum), do push ups on the lane rope, and ride on my back as I swim around. He's also good at jumping in (aka sitting on the edge and throwing himself into the pool).


I don't know what the future holds for him in the pool. I know there is a place I can access for 1:1 swimming lessons that I'm going to tap in to soon and see if they can teach him to swim without his legs. I'm confident that he'll find his way.

Monday, June 10, 2013

What's a Kid to Do?

The past year or so has been quite educational as far as what is accessible for children in our city. Kingsley has now had his wheelchair for 16 months and in that time I have been endlessly brainstorming about ways to keep him busy. Some places have been awesome. Some are total flops. There are so many things to do, places to go when you have children. So many places that you take for granted. You might notice how hard it is to maneuver a stroller through Gymboree, how inaccessible shopping is downtown, and even get irritated when the automatic door buttons are broken, but until you have an independently wheeling child, those annoyances suddenly become barriers in the most real sense.

Here is my run-down on the places in our 'hood that people hang out with kids:

1. Parks: there are designated parks in London that are meant to be more accessible and disability-friendly. It's a bunch of hooey. These parks usually include a play structure with a single ramp that Kingsley can roll up and hang out on a platform that then has steps up or down to get to the action. Sometimes there might be a bubble thing for him to look through. Wow. They also have dips in the concrete pathways that lead down to wood chips, I assume so that he can roll down into the wood chips? Brilliant. Unfortunately, the wood chips aren't usually topped up, so no matter where you're rolling into this section, you're dropping off a curb to get there. Into wood chips.

 yay! woodchips!!

wow! a ramp to stairs and a drop in the curb to roll on into those fun woodchips

There is usually a swing there that is for people with physical disabilities, in that it's a huge chair with a bars that come over your shoulders and connect between your legs, kind of like on a rollercoaster. They're adult sized. I read the fine print on the swing once, just trying to find out it's purpose as it is so big it fits two of my children at once. It says there are additional straps to support smaller people. The straps are not there.


There is ONE park we have found and - gloriously - it's the one closest to our new house! It has three whole ramps for King and each ramp leads to an actual activity, a piano, a finger maze, and I forget the other thing. Kingsley loves it. There are still wood chips, but (at least last summer) they were topped up to curb level and he loved to sit and play in them. It's a big playground with a lot of paths. It's not perfect, but it is somewhere that we can all go and have fun.


the school playground is also partially accessible

2. StoryBook Gardens: this is a big thing in our city and kids love it. I LOVED it when I was a kid, though it's changed a lot since then. When Kingsley was a baby, this was a great place to take the kids. Kingsley would nap, nurse, people watch, play in the huge sand pit, and have a great ol' time while the girls played. Now, not so much. The park itself is accessible and has lovely paths, but none of the structures, rides, or activities are wheelchair friendly. Kingsley is no longer content to sit and watch, so this place is out. Sadly.

3. Children's Museum: another huge thing for kids in our city and was when I was a kid as well. This place is accessible, has an elevator and ramps, activities at his level and that he can access, lots of fun. However, the museum has HUGE safety hazards in the form of big wide open stairwells on the upper levels. They are central stairs, right in the middle of the action and there is nothing to stop Kingsley from flying right down them or have another kid bump him in that direction. I am shuddering even typing that. There is also a big wide open stairwell down to a mermaid sand pit, where of course King loves to play. It gives me nightmares. It's on my to-do list to email them and tell them to put in some flippin posts at the top of the stairs, for Pete's sake. Until that happens (and I'm not holding my breath), we can't hang out there unless I'm one on one with King.

4. Indoor Playlands: there are basically three in this category - Adventures on Wonderland, Kidscape, and McDonald's. McDonald's is pretty much the same everywhere and they aren't accessible, not even remotely. And it's McDonald's. Kidscape and AOW have the same problem, being that they aren't accessible. They are big places with different spaces within them, lots of kids running here, there, and everywhere, back and forth. He can get in. He can sit and watch. As a baby, there were big mat areas where he could play, but that got old when the only thing I could do with him was PT exercises. Boring mommy ;)

5. Skating Arenas: they are accessible! We haven't been able to go this year, since my PT laughed at me when I asked if I could skate with a torn ACL, but last year we went and King had his borrowed sledge and did great. I have heard that you can even borrow sledges if you call ahead, but I don't know if that's true. The change rooms are just benches, like any skating place, I suppose. I'm not sure I've ever seen a change table, nevermind an accessible change table. We don't hang out long though, so have never needed one.

6. City Swimming Pools: they're kinda iffy. I mean, they are accessible, but not overly. A couple of them have lifts or ramps, but the city-run pools don't really have accessible change tables or spaces to change King other than a bench. It's fine now, at this age and with his abilities, but I know others have had issues with this. It's part of why we've put in a pool at our new house.

7. YMCA: oh, boy, I had high hopes for this place. ;) Fortunately, they have not let me down again! It's great. The change room is great, the pool has a ramp and a lift (though not to the shallow end, but this doesn't bother us right now). The gym, the playrooms, the activities for kids, and the whole place is very inclusive. Kingsley can go anywhere and do (almost) anything. They have a Treehouse room with a structure similar to the indoor playlands, but different in that there are things on ground level that King can wheel into/under. I've only gone to the one in the north end, but I hear the other Y's are also good.

8. Libraries: I can't say enough about how much I love our public libraries. We've been to a handful now, and not one has disappointed us. They all have train tables, books (obviously!), computers, tables at Kingsley's height, toys, floor space to sit and hang out... they're just awesome. We go weekly, sometimes more, all year round. All three kids love them. I love them. We love them. Except the family bathroom in the Westmount one has a hugely heavy door that does not have a button to open it. It's ridiculous. But other than that, love. ;)


9. Movies: Jeff and I have always been drive-in people. We used to drive his half-dead car with the dead stereo to the outskirts of the city and listen to the movies on a beat up old ghettoblaster that ate batteries for breakfast. It was cheap and we could bring our own snacks. Anyway, it's also a great place to bring babies because you can roll up the window or strap them in a wrap and go for a walk if they started to cry. Now, the kids understand what 'adult movie - go to bed' means so we wait until the first movie is a family movie and pack up the kids. The location itself is not accessible, not the bathrooms (unless there's separate one I've never noticed?),  not the gravel paths, nor the playground. But, we can all go and hang out by the van and play, get comfy in chairs and make it work for now.


We took Kingsley to his first movie theatre a week ago! It was great and he did surprisingly well, quite surprisingly considering how big and loud the theatre is. The only issue is that the wheelchair spaces are all down in front and the good theatres are the really big ones which means you'd have to be looking up to watch the movie. Not my favourite place to sit. We parked his wheels and he sat on my lap, which is where he wanted to be anyway.

10. Other People's Houses: this is one that is starting to become a problem and I don't see that changing. He's outgrowing his Bumbobile. His little bum and skinny legs fit in the seat just fine, but it's low to the ground and at his age, kids start to stand up more. To be at the level of his peers/sisters, he prefers his wheelchair or stander. Unfortunately, people's homes are not generally designed to be accessible so his big wheels don't fit and kids don't stay put. They run upstairs to show you their room, run downstairs to grab more toys, want to play outside... And Kingsley is left there with me and the other mom. I am getting better at inviting people to our house to play, since it's pretty kid friendly and King can obviously get anywhere. Even going downstairs, other kids are very eager to wait for Kingsley since it means they get to ride the elevator. This is one hurdle that won't get any easier as he grows up, but I'm not dwelling on it yet. We will tackle it as it comes.

11. Bowling: this is one rare gem that we've stumbled upon. There's a cool place here called the Palasad where you can play arcade games, bowl, eat, and a bunch of other stuff. There was one right by our old house that underwent big renovations and one of the things they did was make it completely accessible! I took the kids to a birthday party there recently, full of anxiety, and as soon as I walked in the door a staff member appeared out of thin air asking if King was going to bowl and they had a ramp there before we even got to the alley. I haven't been to the other big bowling-fun place here, Fleetway, but I'm told they are connected with an organization for adults with disabilities and have made sure it's accessible for everyone.



That's about all that I've found. The malls are also all accessible, but Kingsley's not a huge fan of shopping without an ice cream bribe. Fortunately right now we are surrounded by construction, which is still endlessly entertaining for Kingsley. When we get really bored, we walk up the street to the end of the subdivision where they are preparing the next field for an apartment building. There are a lot of diggers and dump trucks, cement trucks, and cranes around here. The construction crews are so friendly to Kingsley, waving and honking their horns. He loves it.

If there are more places to go that I don't know about, let me know! It's going to be a long summer. :)

Thursday, March 14, 2013

R.G.No.

In the midst of our crazy move and unpacking frenzy, we had an appointment to have Kingsley casted for his RGO's. RGO's are Reciprocating Gait Orthosis. They are basically braces up to his waist/torso with a spring action so that when he leans back the right way his foot will kick out. Lean the other way, the other foot kicks out. It simulates walking for someone who cannot walk themselves.

They receive mixed reviews in the SB world. Older generations remember them as torture devices, but current parents of younger kids like them. From talking to some PT's about the way things used to be, there used to be more of an attitude of 'walking at all costs', which I don't feel like there is anymore. Wheelchairs weren't even mentioned until kids were 3yo and all walking options had been addressed. Jeff and I know that RGO's are not going to be a functional means of walking for King. We have realistic expectations of this being an exercise for him, another way for him to be up and doing something. I don't plan on taking him out around the town or walk to school or anything.

My reason for wanting Kingsley to have RGO's is that I see a future for him in which there will be some way for him to be upright, functionally, if he wants to be. I don't know what it will be or what it will entail, but technology is progressing so quickly that things like Segway's and Exoskeleton's are only going to open doors. I want him to be confident being upright and for his body to know what it feels like to move this way. I want to provide these opportunities for him now, just so that nothing is closed to him later.

Which brings me to his casting appointment.

We had our initial appointment with the orthotist a few months ago to discuss it and get the paperwork started. Sidebar - these fun little braces will cost over $12 000. For real. Fortunately, we have a program here called ADP that covers 75% of the majority of equipment we will need for Kingsley, but do the math and *choke*, these are no joke.  There was very little chance that ADP wouldn't cover them, we weren't worried about that, but they were a little slow on their approvals lately, so we just let them take a few months to sign back the form while we dealt with house stuff. Now, the approval was in, we were set.

Unfortunately, the orthotist gave us some bad news. Kingsley's legs are too tight. He can't straighten his knees and his hips are getting tight now also. Kinger has some unique functioning of his legs that doesn't always work in his favour. One is that he can flex his hips and bend in his knees a bit. This tucking action allows him to lift his feet a couple inches up off the floor when he's seated on a chair (use your abs and hips only to do this, that's what he has). It allows him to also tuck and get into an all-fours position. He can't, though, squeeze his knees in to close his legs, nor does he have any quad at all, so when his legs tuck in, he can't push them back out, they either fall down naturally or they stay. Mostly, they stay. He sits crossed legged, he sleeps frog legged on his stomach, he kneels all splayed out. He's only ever stretched out when he's in his stander and even being in that 1-3 hours a day is just preventing him from getting tighter, not loosening him at all.

What this means is that Surgery #5 is coming up. They will have to release his tendons, both legs and his ballerina foot/ankle, followed by casting for 6 weeks. Yikes. This will allow him to have straight legs again and a foot that more easily gets to 90 degrees. It's not a surprise, we knew at some point this would have to be done.

It is important that we do this surgery first, even though technically they could accommodate all of tightness in his RGO's. Accommodating may make them harder for him to use them and for all of the reasons mentioned above, we really want this to be something that Kingsley does not hate or resent. We will be heading back to ortho in a couple months and see what she thinks, start to plan. I'm hoping to wait until the fall. I have my own ortho surgery in two weeks (eeek!!!) and it'll be a couple months before I'm back to normal, followed by summer with a brand new pool - hello! Can you imagine how horrid that would be for poor King?? Six weeks in casts will be hard enough.

This surgery doesn't scare me that much. Surgery is surgery, so it doesn't thrill me or anything, but surgery on his legs seems so much less intense than, you know, brain surgery. One day at a time.

Wednesday, February 20, 2013

The Back Bone's Connected to the...

We got in to see ortho! I was sent an email this morning about a last minute opening this afternoon. Craziness, but we made it happen.

I really like our ortho. She's new, but seems to really know what she's doing. SB isn't the most popular diagnosis these days, so I sometimes get the impression that some of King's specialists or people are kind of dusting off cobwebs to remember SB details when we talk. I don't get that with her, she asks the right stuff and looks at the right things.

Anyway, she was not concerned with his back. She said a degree or two a year is to be expected and he looks alright to her. She and I talked over tethered cord, what I'm seeing, why she's not concerned about that. Lots of relief. She sent him for x-rays afterward (which he did not like) to see how much he's changed/if he's changed. She also recommended that his wheelchair get adjusted since the kid is growing and this is likely impacting his stability, which is totally true. We also talked a bit about long term scoliosis, what it involves, what it would look like if there were actual problems, what those problems would mean. Nothing I need to worry my little head with now.

She also checked out his feet while he was there and asked about his ballerina foot and whether it was getting worse. She thinks that he will likely need a lengthening in the back of his ankle at some point, to keep his foot at 90 in shoes. Right now, his AFO's are doing the job.

So, phew! She's going to call us if there's something on the x-ray we need to know about, but otherwise, let's get on with the move!! :)

Friday, February 15, 2013

When it Rains...

Isn't it funny how you can have months and months of nothing go by and then all of a sudden you find yourself faced with multiple things all at once? No! It's not funny! It's horribly stressful and it's making me grouchy.

First, exciting stressor: we are moving. In two weeks. Or maybe three. Not entirely an exciting stressor since it's hard to move really quickly when you don't know when you're moving. We need to act fast because my knee surgery is coming closer and closer and we need to be settled before that happens. However, I like things like this and it could be just fine if that's all that was going on.

But. Of course it's not the only thing.

Kinglsey has mild scoliosis, which is kind of normal for people with SB. He was assessed last year and it was only about 13 degrees. I don't actually know what that means, but it was no big deal.

He's always leaned to the left, mostly just when he was tired. He has one side stronger than the other, but a slight curving of his wheelchair seat and giving him something to hold in his hands is usually enough to get him upright.

Nope, this isn't the case anymore. Lately, he's leaning a lot. His elbow is always on the wheel getting filthy, he slouches when he's eating, and the lopsidedness in his back ribs is obvious to me more than it's ever been.

This could be his scoliosis getting worse. This could be Cordelia's super late bedtime tantrums making him really tired. This could be his cord retethered, since it has come on pretty quickly. I don't know. But the calls are starting, the appointments will follow. It's starting to pour.

Friday, May 4, 2012

I Love You

Kingsley is talking endlessly now and imitating everything we say. He'll imitate labels, names, sounds, phrases. He's doing amazing.

I was waiting though. After your baby first says MOMMY, the next thing you wait for is I LOVE YOU. Nothing melts a mama's heart like those three little words. They're usually all jumbled up and mushy, but there's no mistaking it when you hear it. 

Three days ago, Kingsley said it. He was in his stander watching Sid the Science Kid, I was running around cleaning up just before we went to get the girls from school. I walked in the room. King's eyes were glued to the TV as he said:

"Sid," [pause] "I wuh wu" [pause] "Mom."

Then he looked at me. I'm not sure if he looked at me because the 'I love you' was meant for me or if it was because I was laughing so hard and that pulled him away from his beloved Sid. Either way, it was a priceless moment. 

Since then, he's said, "I wuh wu" to random strangers at the library, the neighbour, one of Rachel's classmates, and today, he really truly said it to me - the TV was not on. ;) 


Be still my heart. 


Wednesday, February 8, 2012

Dirty Clothes

It's a little odd, but I get so happy when I see dirty clothes these days.  

Dirty clothes because it's Kingsley that is dirtying them. For so long, his clothes looked pristine, like they weren't even worn. I've made a lot of money reselling them, but that time has passed! 

His clothes get food stains because he is eating food and feeding it to himself. Such a strange hurdle that has everything and nothing to do with SB, but one that we are getting over one meal at a time. His diet just continues to expand and he's starting to eat as much as the girls. No fruit or vegetables though - that's just craziness. 

His clothes are also getting stains all up the sleeves because he rests them on his wheels - his bumbobile wheels, his wheelchair wheels, his dynamic stander wheels. He rests them on there when we're outside the house doing stuff and they get just filthy, but it's awesome because he's out there, getting around. 

His clothes are dirty because his belly sweeps my floor as he crawls from one side of the house to the other. He used to be so passive, we worried that he'd never learn to crawl. He'd just lie there or sit propped somewhere, content to just be. He's not remotely content with staying still now.  He moves from sitting to lying to rolling to crawling to lying to sitting... and then all over again. But it's on the floor where the girls spill and dribble and stomp through in their boots, so he's messy. 

His clothes are getting markers and glue and paint and glitter all over them because he loves to play with his sisters and do what they're doing. He's so much more interested in toys and games and crafts. He colours pictures, he stabs paper with markers, he freaks out when he gets glue all over his hands and wipes it across his shirt... okay, that's not totally awesome, but it's still progress.  ;) 

At night when I take off his clothes and put on his pajama's, I love looking at the mess he was wearing. I used to feel guilty about tossing his clothes in the wash since they pretty much looked the same going in as going out. 

Who gets excited about dirty laundry? This mama. :)  I'm not taking any of this for granted. 

Sunday, January 15, 2012

*TWO*

My sweet little boy turned two today.

TWO.

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


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


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


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


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

It has been a big year for my little rockstar.


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


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


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



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




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

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

Happy Birthday, Kingsley!!

We love you so much!

Wednesday, December 21, 2011

Christmas Miracle

Kingsley is fine, just fine.

We saw his neurosurgeon today. She said his syrinx is still there, still significant, but stable. She asked a whole bunch of questions about what we've been seeing, what Kingsley has been doing, what the concerns are, what changes he's had. She believes they are because he is doing so much more, using so many more muscles in different ways and so there are some side effects - his hamstring is tight because he's realized he can bend that knee to move around and so bends it (he doesn't have the quad muscles to stretch it straight again). The increased twitching is enervation and conscious movement where before it was passive. He's just doing well.

One small shadow: his Chiari area is a bit tight. She asked about his eating and if he chokes and whatnot. He isn't showing any symptoms that concern her, so no surgery now. She is not keen to jump in and open it up more without a really good reason, as doing so could cause more problems so there's no point in putting that risk out there without a very good reason. The same with putting a shunt in his spine to drain the syrinx - there are no guarantees that it would help the situation and no guarantees that it wouldn't make things worse. So, while everything is stable, no surgery. If he has significant changes, we'll have to look into those things.

More good news! His brain is perfectly wonderful. His shunt is working perfectly. There is nothing there that would be causing language problems, as far as she could see, so the delay is just a delay that he will work through, as far as anyone can tell.

This is all pretty much beyond what I could've hoped for. I was imagining terrible things and not a single one of them came true. It's like Christmas morning, his birth day and winning the lottery all in one.

Uploaded from the Photobucket iPhone App

This afternoon, my sister came home to celebrate with us. Really, they came home for Christmas, but this was a pretty good second reason. ;) Christmas can officially begin again. All is well.

Wednesday, November 30, 2011

All I Want for Christmas...

My two nieces and my sister watched Never Say Never, the Justin Bieber movie. And when I say 'watched' I mean they had it on Netflix and watched it about a dozen times in about as many days. And when I say 'a dozen' I really mean three. They became big Bieber fans. So, when I was at Costco a couple weeks ago I was thinking of them and I grabbed Justin's new Christmas CD with the intention of listening to it a few times and maybe ripping it for them passing it on to them. However, it turns out my nieces aren't the only ones who love "Justin Beaver" because all three of my children have clung to this CD like it's the best music in the world and they insist on listening to it all. day. long. Truthfully, I don't mind. I love Christmas music and if you haven't heard the CD it has a remix of Mariah Carey's All I Want for Christmas which is one of my favourites.

Over the last couple of weeks while this CD has been on repeat, the words of all of his songs have blurred together and played in my head even when it's not on. There's one message that comes up over and over in so many of the songs: All I want for Christmas is you. Tell Santa I'm good this year, my present is standing right here. If you're the only thing I ever get for Christmas then everything I've wished for has come true. I realize Biebs is probably singing about a girl, but when I hear these words, I look at the kids and I think: YES.

I have been walking around the house, just savouring the drawn out Holiday buildup. The lights are up outside, Buddy the Elf has returned, the mail has gotten really exciting, we're going to put the tree up this weekend, lists are being made and checked twice, pictures are done... we're in the Christmas spirit and there's this feeling of just soaking it in and enjoying it all. A true appreciation that we are so incredibly lucky to all be home, to all be healthy, to all be together.

When I was thinking last week about Kingsley being in the hospital a year ago, I remember the rush to do things in the week leading up to his surgery. I remember doing my online shopping from beside his hospital bed. I remember the heavy reality that with one sudden fever, we could be spending our Holiday season in the hospital instead of at home. Getting released on December 2 was one of the best Christmas presents ever.

And the year before that with the sudden scare and hospital stay mid-December before he was born.

We just don't have a lot of luck with this month. Kind of like September.

Which is why I have one wish for Christmas. Just one.

I want Kingsley to be home. 


Because what I didn't want is for his PT to have concerns about his legs. And I didn't want the concerns of September to be brought up again. I didn't want to see their faces when I mentioned some things I had noticed. I didn't want to see the look on my moms face when I told her the concerns that people are mentioning and see that she has the same concerns.

I don't want to hear back from the neurosurgeon and I don't want to know what the inevitable MRI is going to show. I want to continue appreciating that we are all home together and not subconsciously start planning how we are going to get through this month if we get bad news and have to be split up.

It could be nothing. It could all just be explained by... something else.

Or these changes could all be related.

I think we might need a Christmas miracle on this one.


Wednesday, November 9, 2011

Awesome, Awesome, Awesome

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

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


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

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

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

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

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

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

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

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

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

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

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

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


And on that note, I want to link you to something that has stuck with me since January. Cassie is another mom blogger out there. It's funny how you can feel so close to someone you've never met, isn't it? Cassie is a huge source of encouragement for so many of us mom's of younger kids with SB. Her son Caleb is 6 and he defines Rockstar. Cassie was constantly telling me that Caleb was just like Kingsley once. Caleb took a long time to get where he is. Caleb wasn't always a walker. I have to be patient, Kingsley will show me in time. Then with this post, she showed me what she meant: http://themclellands.blogspot.com/2011/01/taking-scenic-route.html  Rarely does a week go by that I don't think of this post at some point or another. I have no idea where Kingsley will end up or what he will accomplish, but reminders like this and days like today make it very clear to me that I can never say never. 




that's for you Kris ;)

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: http://thelittlekingsley.blogspot.com/2009/09/diagnosis.html  In a nutshell, it's horrible.

And then he's born and the whole world becomes full of rainbows and sunshine! http://thelittlekingsley.blogspot.com/2010/01/hes-here.html


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. http://thelittlekingsley.blogspot.com/2010/02/kingsleys-video.html

And then you live.

You have good days http://thelittlekingsley.blogspot.com/2010/06/rockstar.html  and bad days http://thelittlekingsley.blogspot.com/2010/06/stop-ride.html and sometimes even worse days http://thelittlekingsley.blogspot.com/2010/09/heavy.html


You go on vacation (imagine that!) http://thelittlekingsley.blogspot.com/2010/06/kingsleys-first-vaca.html Yikes http://thelittlekingsley.blogspot.com/2010/08/three-kids-three-days.html 

You live http://thelittlekingsley.blogspot.com/2010/10/living.html


Your other children continue to live http://thelittlekingsley.blogspot.com/2010/10/spidipida.html


You have blips http://thelittlekingsley.blogspot.com/2010/12/kingsleys-decompression-with-music.html

But when you look at your child, you still believe you are the luckiest person in the world, because they are yours http://thelittlekingsley.blogspot.com/2011/05/best-case-scenario.html


This is what it's really like to live with a child with SB http://thelittlekingsley.blogspot.com/2011/06/living-part-2.html






Tuesday, September 13, 2011

The Green Monster

I have been doing a lot of thinking over the last month, a lot of reflection on certain behaviours I find myself doing and wondering why I'm acting so oddly. Some things are pretty obvious, some I'm embarrassed to admit. It turns out, I have a big bubble that I live in over here. It's part denial, part survival. I remember talking to a social worker about this back when Kingsley was first born and she said it's not that I'm pulling a bag over my head, it's that I'm recognizing that I don't need to put energy into certain things because I'm saving up for bigger things. I will just say she's right. ;)

So... what am I talking about, right?  Well, I'm avoiding things. I'm avoiding pregnant women, birth announcements, baby boys, and little boys in general.  I'm also avoiding one year olds, pretty much across the board. One year olds who have just turned one and are toddling around without a care in the world. One year olds who are pushing two like Kingsley and have struggles like Kingsley and who are now all starting to get up on their feet.  I'm avoiding other kids with SB, my blog world, and any general reminder that the life we have is not perfectly normal.

I don't know why I'm doing it. In 2 days it's the anniversary of our D-Day and I'm so far away from that day, it feels like another life in some ways. Kingsley is doing awesome. I have no worries about him regressing or needing another surgery anytime soon. He's happy, he's healthy, he's moving forward. Great things are happening for him! Tomorrow, we're going for his first wheelchair consult and I'm really, truly excited about it.

I think what it comes down to is that ugly green monster: envy. It jumps out and catches me off guard at the most unexpected times. The way babies stand up and bounce on your lap or the way they stuff food in their mouths like they're starved. The way they babble and talk and toss out words, so effortlessly. The way they race around getting into toys and destroying your house. The way so many of Kingsley's little SB buddies are now up - whether standing or walking on their own or with help - they're up.

I am happy for my friends who keep having boring pregnancies and all kinds of labours and have kids who drive them mad with their endless talking and running, and I am overjoyed for those little ones out there defying the odds and slowly, slowly making their first baby steps. But I also want it for myself, for Kingsley. And since it's just not in the cards, I just can't think about it that much.

So, I don't.

I just avoid situations where I have to think about it. I make up excuses and tell myself how I'm too busy to check in with anyone, too busy for playdates, too busy to catch up on blogs. Instead, I watch Kingsley make his little gains at his own little pace and I celebrate them as if he's meeting every milestone right on track. It's very one-sided of me, I know this. It feels rather selfish. I'll get over it soon enough, but for now, I'll just go back to my bubble where I don't have to think about what Kingsley isn't doing and just focus on what the kids are going to wear for their fall pictures or for Halloween, all the new gear Kingsley is going to be getting in the next few months, playgroups, swimming lessons, and all of the regular, boring life stuff that I love so much.

go away smelly green monster

Thursday, June 2, 2011

Some People Go on Shunt Watch...

I go on leg watch. And today we had a big scare.

To recap a bit - in the first few months after Kingsley was born, he was able to bend his legs at the knee, move his ankles slightly and twitch his toes, which meant that for all intents and purposes, he was going to walk. Enter the syrinx, a horrible winter, two huge surgeries, and finally 4 months of recovery, calm and progress. There are currently no plans for Kingsley to walk; he can move his legs from his hip, a bit of hamstring and random twitching down to his toes.

That's where we sit now. After watching him lose functioning twice and not even notice it one of those times, I am hyper aware of every kick and twitch his legs do. Every few weeks, I videotape him moving and watch them all to see if there are any changes. Every other day or so, I will tell him to move his legs and watch to make sure he is still doing it.



Last night, he did not move his legs. At all. I begged, I pleaded, I tickled, I ordered. Nothing. This morning, it was the same. I was absolutely heartbroken. My mind started working overtime, trying to count the weeks and see if we could get surgery over with before my sister and nieces come to visit, wondering if it would the start of a neverending series of cord releases or (no! no! no! no!) another decompression, and whether it would even work.

I made one final attempt to get him to move and...


You hear that desperation followed by the huge relief?

What's that thing over there? Oh, yeah, that's a huge weight that just fell off my shoulders.  I can't tell you what a relief it was to see that. I don't know where he was hiding it. Maybe this kid is already in the tempermental toddler phase? Maybe I should be worried about that sporadic showing.  Time will tell, but for now, I'm breathing easy. Too bad shunt watch can't be resolved this quickly!

You know, you can go days and weeks and months without giving it a second thought and then you get a day like today and suddenly you begin to appreciate every moment, every hour, every day that this lousy thing leaves you alone.

Thursday, May 26, 2011

Best Case Scenario

I have an ugly confession.

On the SB forums, like any other support forum, when someone new joins and announces that their baby was just diagnosed and asks what to expect, what do our kids do, what are they capable of, are they defying the odds? I freeze. I read the other responses. Then I type. Delete. Type. Delete. And finally describe Kingsley as a newborn.

I remember perfectly how scary that diagnosis is. I remember reading about other kids. I remember zeroing in on any kid who had a defect around where Kingsley's was. Jeff and I would read them over, pick them apart, compare and contrast: Well, that kid is where Kingsley's is and he can walk. That one has AFO's, that one doesn't. That kid has had FOUR shunt revisions!! Holy, that one has had a whole bunch of surgeries. That kid you can't even tell she has SB, what's her level?  All we wanted was reassurance that what everyone was telling us was true: the doctors who diagnose give you the WORST CASE SCENARIO. Your child will be a rockstar.

There are so many examples of children with SB defying the odds, karate chopping SB in the teeth, doing all of the things 'they' said they'd never do or wouldn't be able to do, accomplishing things they'd never achieve, meeting milestones right on track, despite the dreaded predictions otherwise. Take that, spina bifida!

Kingsley doesn't exactly do that. Kingsley is one of the kids that would've made me dissolve in tears for days if I had read about him when I was pregnant. That one is S1 but functions at L1!! He's getting a wheelchair and has had FOUR surgeries already!! *sob* He can't even eat normal food yet!  The end of the world! The worst case scenario come true! And that's why I hesitate when new moms ask for reassurance. They want to hear about the other kids, not my boy. I know this and I don't blame them in the slightest.

The thing is, it's hard to describe in words how incredible Kingsley is. It's hard to understand how he completes our family, how he lights up a room with his smile, how he smells like heaven when he wakes up in the morning, and how he can charm the pants off anyone he meets (What's that Kingsley? You want a new house? Sure! I'll build you one! ;)).  His laugh is electric. The faces he makes can entertain me for hours. He's brilliant, pure and simple, you can see his mind working and figuring things out whenever he plays. He's such a happy, good natured, adorable kid. And the wheels he rides are pretty cool.



The level of functioning, the number of surgeries... they really don't matter. People say it over and over and over, because it's true. When it's your child that you are holding, it doesn't matter. With Kingsley, it's the way his lips move when he says Mumma, the way his arms wrap so tightly around my neck, the sparkle in his eye when he sees me walk in the room, the way he's entertained by his sisters, the way he says Dadda? Dadda? when he hears the garage door, the way he pounds on his toy piano, the way he dances when he hears a good song, the way his lips pucker when he's trying really hard to do something, the softness of his skin, the way he throws his head back when he laughs... those are the things that matter. Those are the things that make me feel every day like we got the Best Case Scenario. So, take that Spina Bifida.

Fresh eyes for you, Kristin.

Tuesday, April 26, 2011

How Old is He?

"How old is your boy?"

"Fifteen months."

"Fifteen months. Right..."

There's a pause. I wait, wondering if he's figured out how he's going to ask it.

"He's a cutie. Such big eyes!"

"Thanks." I smile, finish putting my boots on and pick up Kingsley who is sitting propped against a wall by the doorway.

This is not the first time this other Dad at preschool drop off has asked how old Kingsley is. He has a 14 month old who squirms to get out of his arms, toddles up and down the hallway, and runs crying from strange adults she bumps into. We see him twice a week and he's begun to notice that Kingsley doesn't walk.

The first time he noticed and asked how old he was, he sort of nodded in that empathetic way and I could tell he was thinking: late walker. The last few weeks, I've noticed him noticing more. Like how Kingsley doesn't try to walk, doesn't stand, doesn't sit independently even. How I carry him everywhere and rarely put him down. And how Kingsley is just fine with that. I can see the wheels turning and I know he can't figure it out.

He's a very nice man and his questions don't bother me at all, nor does the way he stares and puzzles over Kingsley's stationary state of being. He's not rude about it and I know he's trying to find the right way to ask without being impolite. I should just tell him, but I'm also still trying to find the right way to say it. Still.

I understand that Kingsley is not going to walk, not the way I imagined he would. Almost all of the time, I am okay with this. But that tiny little part of me that isn't okay, that is a teenie bit sad about wheels, that can't allow myself to think more than a year into the future - that part of me is having trouble blurting it out: My son has spina bifida. He isn't going to walk.


At 15 months old, Kingsley looks like any other toddler. He smiles and babbles and waves and plays shy. He accepts kisses from his sister and then pushes her away. He whines because he sees all the toys and wants to stay and play. He twists in my arms to have one last look as his sister runs off. If you look very, very closely you can see the faint line of a scar down the back of his head and neck, but hoods hid that all winter while it healed and only the woman who cuts his hair would notice it anymore. His legs don't work. That's hard to figure out, to pinpoint when you're just seeing him for short amounts of time.

My son has spina bifida. He isn't going to walk, but he is going to amaze you.


I will find the words soon.

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