Let’s Talk About Car Seats: Proper Buckling Edition

I realized this week that it’s been 2 months since I completed my courses and became a child passenger safety technician (CPST) and I really haven’t done much with what I learned. Mostly this is because I am bohemethly pregnant, which makes it tougher than you’d think to install car seats. But I realized that being giant shouldn’t stop me from sharing the things I’ve learned that can help keep kids safe.

I frequently see pictures of kids on Facebook, twitter and Instagram who are in their car seats, smiling their hearts out, and all I can think is how terribly injured they would be in an accident. I know this isn’t because their parents don’t care about them, quite the opposite, they’re in a car seat in the back seat because their parents care, but somewhere along the line, the proper buckling/safety got lost or missed. And those kids, and thousands of others, are at risk for serious injury in an otherwise survivable car collision.

So today I want to talk about how to properly buckle a child into a 5 point harness, including some common mistakes and why we need to be careful about not making those.

This is Eli, he’s 2 years and 1 month old and he rides rear facing 100% of the time and will until he outgrows the limits of his car seat. We can talk about that another time, but he’s clearly not unhappy about it. In fact, he cried when I took him out of the car. I’m not even kidding. It might have been more because he had to put his pacifiers away, but still. He loves his seat and rides happily in it.

properly restrained 1

Here he is properly restrained. His harness is snug enough, the chest clip is positioned properly, the straps are on the right setting and his seat is properly installed (another post for another day). This is how he rides 100% of the time, regardless of whether he’s put in the car by mom or dad. We take the time to do this every single time. Even when we’re running late, which is 100% of the time.

properly restrained 2

Now, let’s look at some common errors and how to correct them.

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1. Chest clip placement. This is probably the most frequent error and is a big one. I know it probably doesn’t seem that critical, but the chest clip plays a huge role in keeping your child safe in a collision. The chest clip keeps the straps properly positioned on the shoulders. In the event of a collision, if the chest clip is too low, the straps can slide off the child’s shoulders and the child can be ejected from the vehicle. Also, if it’s positioned over the belly, it may cause abdominal injuries in a crash.

chest clip

How do you know it’s in the right place? The chest clip belongs at armpit level (or nipple level, same difference). It should not be anywhere near the belly at any time.

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2. Loose straps. I get how this one happens. We don’t want our kids to be uncomfortable, so we make sure the harness isn’t too tight. But in doing so, we are putting our kids at serious risk. If the harness is too loose in a rear facing seat, the child will “ride up” the seat and can be ejected. If the harness is too loose in a forward facing seat, the child will have significantly more movement forward, which could cause them to collide with the front seat, injuring arms, legs, brains and spines.

loose straps

So how do you know if the straps are tight enough? The pinch test. The pinch test is the best measure to make sure the straps are tight enough. Once you’ve tightened the harness, attempt to pinch the webbing (horizontally) at the collar bone. You may need to remove or unvelcro shoulder pads to do this, but doing it at the belly is not valid. If you cannot pinch any of the harness, it is properly tightened. If you can pinch the harness, it needs to be tighter.

Here, I can pinch the harness, so the harness is too loose.
pinch test 2

Here, when I try to pinch, I can’t grasp any of the harness webbing between my fingers, so the harness is tight enough.
pinch test 1

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3. Aftermarket products on the seat. As you can see, I did this. I did it for a full year before I knew better (we can also discuss how the straps are too loose, I too made almost all these mistakes before I knew better). I thought that Eli would be more comfortable with these strap covers on and I clipped his pacifier to his harness. Why are these things wrong? Well, for starters, any object that isn’t crash tested with your car seat shouldn’t be used. Your seat was intended to work a specific way and there’s no way to know if adding something is going to be dangerous. For strap covers, the issues are that they can make the straps slippery and cause them to slide off your child’s shoulders, or, in a crash the fabric can compress (much like if you put your child in a puffy coat) and cause the harness to be too loose in the moment you need it to be tight. The pacifier should never have been clipped there because it could damage the harness and reduce it’s ability to perform correctly in a crash.

smile

So, how can you protect the neck from strap marks? You can call your car seat manufacturer and see if there are any strap covers that they can send that have been crash tested with their seat, and many companies have these available. If that doesn’t work, you can put your child in polo shirts, you can pull their shirts up under the straps, or you can just live with it. It’s not a perfect answer, but when used properly, the harness shouldn’t damage the skin.

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4. Combination loose straps and low chest clip. This is the worst. I don’t mean for this to come across meanly, but if this is how your child is buckled into a car seat, you really shouldn’t even bother putting them in a car seat. This will provide absolutely zero protection in even a mild crash. The child will be ejected at least from the seat, if not from the car, and very likely severely injured.

loose and clip

This actually happened to an infant in my area recently. The car accident was entirely survivable, but the child was ejected because she was in a seat with the chest clip at belly level and the straps too loose. It is an absolute tragedy and that’s why I’m telling you this. We all get told repeatedly by doctors and family members how to feed our kids, what the safest products are, but no one takes the time to teach parents about car seats. Car crashes kill thousands of kids each year and studies have found that more than two-thirds of car seats are used incorrectly. We need to take the time to correct our mistakes and change our ways so that we can keep our kids safe.

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It takes less than a minute for me to get Eli properly strapped into his seat. I know when we’re in a rush it feels like every second counts, but safety should never be rushed. Taking those extra 30 seconds to adjust the chest clip and check the tightness are absolutely critical. I am not exaggerating at all when I say that it can literally be the difference between life and death for a child. Please take the time, pay attention and now that you know better, make the conscious decision to do better.

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On one of the Facebook groups I belong to, people often ask questions about clothing and other important baby gear. This summer there have already been at least 5 posts inquiring about swim diapers, and the same answer kept being repeated by mom after mom: i play reusable swim diapers. I had been intending to buy a couple new swim diapers before we start swimming lessons this summer, but hadn’t gotten to it when I got an email asking if I wanted to try one of the new i play swim diapers with a matching rash guard. And I jumped at the chance.

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Eat Your Heart Out, Adele Dazeem

As a pick me up from yesterday’s downer post and as an uplifting preparation before a sponsored post tomorrow, I give you Eli singing For the First Time in Forever (from Frozen). He sings like this all the time and it is the greatest thing ever. Knowing the exact words is entirely overrated.

Also, part way through there’s a bird on the video and he gets distracted and starts quacking. Repeatedly. If you’re not interested in hearing repeated quacking, I’d skip from 2:06-1:40 (the video counts down, which is…odd).

Two has proven to be the most challenging age to date, but damn if it’s also not the very best. Eat your heart out, Adele Dazeem (and Kristen Bell).

Cocooning

This past month has been…interesting. It’s frustrating because I can’t freely write about a lot of it in detail, which basically has me here saying that things are interesting without being able to describe how and why.

The very short versions of everything is that:

1. My grandfather has tongue cancer, which I’ve written about already, and is going to be undergoing intense radiation. He’s having trouble swallowing even his own saliva, and is currently in a lot of pain. And it’s not good and it is just terrible for him and there’s not much more I can add. It’s a really crappy situation and we are all helpless.

2. At the same time, my father-in-law is sick, which is not something I will be writing about at this time. There are layers of bad here that I can’t get into, my husband is caught in the middle and to put it mildly, what’s going on is devastating. I realize that I haven’t exactly written love sonnets about my mother-in-law but my father-in-law is a really great man, he loves my husband and my son and this whole situation is just terrible.

3. Eli has had something funky going on with one of his legs that we can’t quite get to the bottom of. It’s not life threatening by any means, just worrisome and confusing mostly. We’re watching it for now since so far everything has come back okay.

Anyway, things are just suddenly feeling very personal. Writing has always been an outlet for me, but right now I feel like I’m overexposed. Like the things that are going on in my life are too intimate to share with everyone and that’s why I’ve kept some of it quiet.

And it’s why I locked down my twitter this weekend. I don’t usually like to shout into an echo chamber. I value criticism and input and don’t mind people disagreeing with me. I don’t mind sharing things with people, even those I don’t know. And I don’t know if it’s the hormones or if it’s just feeling raw from life, but I’m just not in place where I feel like I want to share things with the entire world. And yes, I realize many of you are thinking then hey, how about don’t share it on twitter, but you should understand that I have a lot of friends there, a lot of people who lend me a tremendous amount of strength and support and I don’t want to give that up.

So, it’s locked. I’m being somewhat judicious with the follow requests for now, but it’s not like I’m kicking anyone out. I just need a little cocoon. I need to wrap myself in people that I care about, people that care about me, and give myself a little break from everyone else, at least on one social media platform. Plus, I feel like a little privacy isn’t an inherently bad thing and maybe this is something that has needed to happen for a while. I don’t know when or if I’ll unlock the account, but I do know that for right now, this is what I need.

I will continue to write here (I have a good giveaway coming up this week, as well as the greatest video of all time to share), hopefully even more than I have in a while, especially since my maternity leave is starting soon.

Thanks for sticking around.

School’s in for the Summer

When we had originally planned our move, we weren’t going to do it until July. That way I would be heading towards maternity leave right when we transitioned away from Eli’s daycare. It was a good plan right until crazy people were on our patio and our laundry detergent was being chronically stolen. And thus, we moved up our move. The upside was a safer environment (yesterday I left my phone on the roof of my car for 2 hours and no one stole it, though I don’t recommend this as a test for your neighbors), but the downside was a major child care conundrum. Again.

So, we began looking for a place for Eli. I had not intended to have him in daycare while I was on maternity leave both for financial and germ related reasons, so I was just looking for short term options, but I quickly discovered that it was much more easily said than done.

And so the hunt began. The one I wanted required potty training, which ha. hahaha. hahahahahaha. No. Others were not able to accommodate my T/W/Th work schedule. Others still had 6 months wait lists. We finally found a few that checked all the boxes and began visiting. And finally, we had a winner. We were going to send our tiny little boy to preschool.

The school is a Montessori, but that’s not why we picked it. We do a lot of Montessori things by accident so it’s not that we’re opposed, it’s just that we didn’t seek it out. After an initial meeting and visit, we decided, at their recommendation, to ease Eli in with a few hour long visits.

The first time went better than we imagined. We arrived just as his class was going out to the playground and he could not have cared less that we were leaving him there because guys, there is a SUH-LIE-DUH here and my husband and I left both sort of feeling like it was the most anticlimactic milestone ever. We picked him up an hour later and he was sitting at a table with the other kids, happy as a clam.

(Walking in the first day with his “pack pack”)
preschool1

The second time was a disaster. My husband dropped him off and he screamed “I want my daddy!” over and over. When my husband came to pick him up an hour later the other kids were dancing and he was sitting in the teacher’s lap holding his blanket. When he saw my husband he burst into tears again.

At that point, I almost gave up on the whole thing. I wasn’t sure how I was going to get Eli taken care of for the 2 weeks my husband is out of town this month, but hell if I was going to let my baby cry all day. Mama bear and all that.

I spoke to the preschool and they gave a not so reassuring, “if he’s not a good fit, we’ll let you know” but we pushed forward and set up a plan to do 2 half days the next week and 2 full days the following.

To my surprise and delight, the half days went really, really well. A few tears at drop off, but the rest of the day he participated and was happy at pick up time. We were going to do 8:30-2:30ish (basically through nap) the second week, but as usual life intervened and instead of a “school” day, today Eli went to his first full day of preschool.

My baby.

I was supposed to pick him up after my last patient at 5, but they ended up canceling and so I bolted out the door at 4 sharp and made it to preschool by 4:20. When I got there he was walking from painting to the sink to wash his hands, which are basically 2 of his favorite activities. He saw me and squealed and I basically did the same.

The teacher stopped to introduce herself since we had not officially met (most of the drop offs and pick ups were mostly done by dad) and she told me that he was “incredibly well behaved.” I briefly brushed it off as something she said to everyone, but the tone and seriousness made me feel like maybe she was being really serious. Plus, he’s an awesome kid, so there’s that too.

(Walking out today, my big preschooler. Bonus unintentional gigantic shadow sort of showing my gigantic pregnancy girth)
preschool2

And now he’s a preschooler. My baby. I have all the feelings, but mostly I’m just hopeful that this will be the right place for him this year and that we continue to have lots of good, easy days where teachers remark about how well behaved he is. I’m sure that last part is super likely.

Face First

I don’t have a lot of parenting advice because at least 85% of the time I have zero idea what I’m doing, but please take this one piece of advice from me: Don’t let your kid fall and hit their face on cement. And if you insist upon ignoring this seriously important suggestion, then let me just recommend that you especially do not do this on a Sunday.

Which is what we did yesterday.

After Eli’s nap, he and I were going to head to the pool for a little water time. This kid could literally spend all day in a pool if we’d let him, so it was just going to be a little time for the 2 of us while my husband worked on a presentation. I was probably more excited than the situation called for, but he’s just so damn fun these days and I so enjoy spending time with him.

We walked out the door and Eli started requested to walk with his towel wrapped around him. We made it about 10 feet out of the hallway and he tripped. As he was falling I though, well, I really shouldn’t have let him wrap his hands in that towel, now he can’t catch himself and he’s going to hit his face. And sure enough, he did. I hate when I don’t see the risk until it’s too late and I will harbor some guilt over that stupidity for a while.

He cried and cried and it was so sad. I could tell he was bleeding and was hopeful that maybe it was just his lip tie that tore, but no, the blood was coming from around his top left front tooth. I finally got a decent look and realized in horror that the left tooth, which was previously even with the right tooth, was notably pushed back. My heart sank.

I know it’s silly and it’s shallow, but I love Eli’s front teeth. I find the gap adorable and even the slight protrusion that I know is a result of his dedication to his pacifier and my unwillingness to take away his soothing mechanism, makes me smile. I couldn’t believe I’d let this happen. It took him a great long while to calm down, during which time I remained amazingly calm, and then finally he relaxed and asked to watch Planes and have ice cream. And then while he watched Planes, I had a complete and utter breakdown, sobbed like a baby over the possibility that they’d pull out one of his adorable front teeth. And then I pulled myself together and started figuring out what to do.

I called the on call pediatrician who a) told me she could not help me because we needed to see a dentist and b) chastised me for not taking him to a dentist sooner. I politely explained that we only waited because we asked both our regular pediatrician and our dentist (our dentist office has a pediatric wing), both of which who said to wait until 2 to bring him in, which we are what, 3 weeks late on? And she rather rudely fired back that the American Academy of Pediatrics recommends the first visit 6 months after the first tooth erupts or at 12 months and I was like HI, MY CHILD’S MOUTH IS BLEEDING AND MY TIME MACHINE IS BROKEN. I am seriously still livid over this. He’s 24 months old, he’s not been to a dentist, which is not something I can fix right now and he may have damaged one of his teeth. What about this seems like the time for a lecture?

Anyway, 25 calls later and guess what, there are no emergency dentists that see kids on Sundays. There just aren’t. So we went to our ER where they have an emergency dentist, and then realized it was going to be 10pm before we saw him and so we left. Eli wasn’t in any significant pain (he ate dinner without issue, though we didn’t let him bite into anything) and was pleasant all evening. He even would’ve probably slept through the entire night had one of his window alarms not broken at 2am, causing it to start shrieking 12 inches from his face.

Sidenote: this particular incident was kind of a hilarious shit show. I heard the alarm on the monitor and knew what it was and that it was probably malfunctioning and not someone breaking in. Sometime between when I fell asleep and when the alarm went off, in a pregnancy induced hot flash I had apparently shed my shirt. As I was getting up to run into Eli’s room, grabbed what I thought was my shirt from atop the laundry pile, but was instead a pair of my husband’s (clean) underwear. So I’m running across the living room trying to put on underwear as a shirt, quickly and oh, I almost wish I could’ve seen it, except not at all. Thank God the house was dark. I think I might have traumatized my toddler more with my giant nakedness than with the window alarm. Thank goodness my husband came with me and helped calm Eli down while I tried to modesty patch myself with the underwear.

Anyway, we went to a dentist this morning who basically said that because Eli’s pacifier use had caused his front 2 teeth to protrude, falling had really just knocked that tooth back into proper alignment and it would probably be fine. It might discolor, but should re-whiten and mostly we just need to watch out for future abscesses, which would necessitate extraction. He has to go back next Wednesday when hopefully the swelling will be down, to have an x-ray (also when his dad can come since I can’t hold him down for an x-ray unless I want his brother to have 12 heads) to make sure the root isn’t damaged. Also, we found out Eli doesn’t have dental insurance, so yea. Good times for all of us. He’s on a soft foot diet for a week and was pretty crushed about having pancakes for dinner tonight.

So like I was saying, don’t let your kid fall on their face and especially not on a Sunday. And especially not when you’re pregnant because this weekend is what alcohol was made for.

Where to Start

While I write relatively openly about Eli and our lives, I try to keep some things private. You will never see his naked butt on any of my social media (though it is truly the cutest butt ever), you’ll not hear about potty training in great detail, nor will you ever see a picture of him sitting on a toilet. I have firm boundaries that are important to me. And this is one of those areas where if I didn’t feel like I needed some guidance, I would probably not share. But I do. Because I’ve never had a child before.

Eli has some…quirks. He’s always been a quirky kid, from infancy on. He had weird sleep patterns and weird eating patterns, but they worked for us and we rolled with them. He hated his crib with a passion of a thousand suns, and we rolled with it. But for the past 3-4 months, we’ve had a hard time rolling with things. All of this pre-dates our move, and though we have discussed the baby with him, I can say with great confidence that he has no idea what’s happening there.

A lot of it is normal toddler stuff, I know that, but other parts aren’t, and we’re struggling to figure out how to best support him right now, because frankly, we have no idea what we’re doing.

The first thing we noticed was the lining up. I know, I know. Lining things up is NORMAL. It’s a normal stage, it’s a good thing, it demonstrates good spatial awareness, as does the sorting. These are all true and I know it. And if he was just lining things up, I wouldn’t even mention it. But it’s not just lining things up. It’s spending hours lining things up and freaking out when they don’t stay, or when the space isn’t quite right, or when it’s time to clean up, or if, God help you, someone touches the line. When it was just cars, I was not terribly worried, but now it’s everything. It’s balls, it’s chalk. Last week at soccer, he lined up all the extra cones and screamed when someone dared touch one.

And I was less worried when he was playing with cars typically in addition to the lining up, but I have scarcely seen Eli drive a car on the ground or do anything with them other than line them up lately. I just have this weird prickly feeling about it and as much as I want to dismiss it, instead of the behavior fading, it just seems to keep escalating.

At the same time, he’s social. I mean, unbelievably, undeniably, loves to be the center of attention social. He’s his dad. He smiles, he hugs, he gives kisses, he makes eye contact, he talks in multi-word sentences that are mostly intelligible. He does all kinds of cool stuff. Our pediatrician gave us an autism screening tool and we had several concerning areas but the doctor said that Eli’s social skills are so astoundingly appropriate, that he didn’t even want to refer him for anything. Which was like 10% comforting and 90% confusing as all hell.

The big thing is that he’s struggling with is play. He has these rigid rules about things. Today he was playing with play dough with his cousin and I spotted the problem from a mile away, well before it began. My sister was rolling play dough into small balls and putting them on the tops of the play dough containers and Addie was taking the balls and squishing them. You know, playing. Eli came in and I knew the instant he saw the play dough that he was going to freak out because he could not deal with Addie taking a ball. Not like, he wanted it and was being possessive and she took it, but because then one container didn’t have a ball on top. And he screamed and cried. Not like cried because something had been taken away, cried like he couldn’t function. Couldn’t stop crying, was beside himself and unable to be redirected in any fashion. Just an absolute mess (this after a 3.5 hour nap).

And it’s not the first time it has happened, it’s not the 10th time it’s happened. All I want for my child is for him to be successful at what he chooses. I want his life to be easy in the sense that he can achieve what he wants without any unnecessary struggles. I want him to have friends and enjoy school and activities, but the way he interacts with his peers makes that a huge challenge.

And again, he’s a toddler. They’re rigid, I know that, it’s just, he seems to always be noticeably more rigid than his peers.

The last thing that has given me the greatest pause is his sensitivity and what seems to be coming out as anxiety. He has always struggled with loud noises, literally for as long as I can remember. We can’t run a blender, vacuum, dust buster or anything of that nature without him hiding or running and crying. The tape we used to close boxes scared him every time. Motorcycles that are a huge distance away terrify him. Public bathrooms (toilet flushing and hand driers) are an absolute nightmare. And okay, fine, he’s sensitive, we’ve known that for some time. For a few months now, when something scares him, he’ll say “you’re okay! you’re okay!” in a quiet high pitched voice, just to himself, as if to calm himself down (the wording he got from us). And for a while, it made perfect sense.

It doesn’t anymore. There are times where there is no stimulus we can spot that is making him uncomfortable, but he’ll start sort of panicking and then we’ll hear “you’re okay! you’re okay!” several times. It will happen when he’s otherwise happily at play, in the car, in his bed, basically anytime. Like he’s constantly reassuring himself that he’s okay. And it breaks my heart because no 2 year old should need to comfort themselves 20 times a day when they’re playing safely at home.

And I’m just…I don’t even know. It’s something I don’t know how to deal with. I don’t know how to help him. I don’t know what he needs. We could have him evaluated by the Regional Center, but our local one is terrible and he doesn’t have delays in other areas and likely won’t qualify for anything. We could go to a developmental pediatrician or a psychologist, but I don’t know if that’s unnecessary and if it’ll just freak him out more. I just don’t know.

I don’t know the difference between normal toddler rigidity and all of this, if there is one. I don’t know the difference between being a sensitive kid and this, again, if there is one. I just don’t know. And I feel like in doing nothing, I’m potentially failing my child, but I feel frozen and unsure of what to do for him. It’s not denial by any means, I know some of this stuff is probably not typical, I just don’t know how to go about managing it.

I love this boy more than anything in the universe. He is the most lovable incredible boy, he does so many great things and he is my favorite person on the earth. All I want is for him to be happy and successful. I just feel like I have no idea anymore how to provide that for him with the things that are happening.

So, this is sort of a half-hearted request for suggestions or experiences or reassurances. Please know that it’s sort of a tender situation for me, so handle with care.

All the Happenings

This is going to be like a stream of consciousness only longer, probably, because it’s been a busy few weeks and I haven’t had enough to say about any one thing, but too much to say about too many, and basically that’s why it’s been quiet.

First, we had Eli’s birthday party, which was delightful. We had it at the same park as last year and decorated with Sesame Street. Eli had an absolute blast, which was my biggest concern. He played on the slide for a solid hour, hung out with his cousins and only stopped briefly to eat. We had ladder golf and corn hole tournaments (with prizes) for the adults and goodies for the kids. I will never forget the expression on Eli’s face when everyone say happy birthday and he has pretty much been obsessed with singing it since then.

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eli birthday party

birthday

The next weekend, we moved. Well, first we packed. I cannot convey how much I hate packing and I always procrastinate and then stay up way too late the night before the move and it’s the dumbest thing, but I’ll never learn. It took hours to load the moving van and hours to unload. My poor husband did the lion’s share of unloading because most of our (lovely, very appreciated) family volunteers had to leave before we finished. When we move again next year, my husband said that we’re hiring movers, not because we need them, but because he’s willing to pay money to keep his parents away. The movers are apparently just a bonus. His words, not mine.

moving

Then it was my birthday, which was relatively uneventful, not in a bad way. We took Eli to his 2 year check up where he was pronounced in good health, though we are keeping an eye on a few concerning behaviors (which are another post for another time). He even escaped without any shots, which was a fun surprise for all of us. Then we went to lunch at the hospital cafeteria (we fancy), took Eli home for a nap, checked out a preschool (also another post for another time) and then went to dinner. I also bought my very first set of brand new pots and pans, which I love so much I kind of want to sleep with them.

pediatrician

Other big news includes Eli transitioning from his crib mattress on the floor to a (hand-me-down) twin bed. I made my husband take the frame off because it’s SO tall and he’s SO little, but we’ll add that on eventually. The move combined with the new bed have essentially ruined Eli’s sleep, but he’s quietly sleep fighting, so I have zero complaints. And he loves his new bed and his “airpane” sheets.

bed

In less positive news, my grandpa has had a recurrence of cancer. He had a tumor removed from his tongue about 3 years ago and was told that it was very slow growing and he’d probably be fine. We don’t know exactly when, but he had regrowth and started having trouble eating in January. Being the stubborn man he is, he didn’t tell anyone and has lost well over 15 pounds in the past several months from not being able to swallow food. He finally went to his doctor and it’s not good. He met with a surgeon and an oncologist this week and his options are just awful.

He can do radiation, but it probably won’t work (not a responsive type of tumor) and will be brutal on his mouth. There is a surgery, but it’s 16 hours long and involves unhinging his jaw and the surgeon said a lot of 40 year olds don’t survive it, so they won’t do it on an 88 year old. Or he can do nothing, and basically he wastes away and can’t eat and that’s the end of his life. I’m so angry about this because it is just miserably unfair. He is a good man, this isn’t how his life should end. I never imagined a scenario where there were no treatments that would make things better in some way (we’re not delusional enough to need remission, just comfort) and I am just angry. He couldn’t get his knees replaced 15 years ago because his heart wasn’t in good enough shape, yet he’s lived the past 15 years just so he can have this terrible end? I just can’t. I’m so mad.

And that’s pretty much it. Very abbreviated, but it’s the goings on. I will post pictures of the new apartment when everything is finished. We’ve unpacked all the boxes but hung (hanged?) very few pictures and Eli’s room needs some color. It’s a really, really nice place and we’re really happy here. Eli’s room is huge, the patio is huge and it feels very much like home already. The community is also great and the 15 minute work commute is just a heaping pile of awesome. Overall things here are going very well and someday I will write in more detail about just one or two things. Probably.

toys

patio

“Different”

I have been treating a little boy in my clinic for well over a year now, in fact, I saw him just today. I’m not going to tell you his name, age or diagnosis, not just for legal reasons, but also, because for the purpose of the story, it doesn’t matter. But I will tell you that I adore him. If I was allowed to have favorite patients, he would be high on my list and he has captured my heart in a special way.

A few months ago, I ordered a special piece of medical equipment for him. It took months to get it created and adjusted properly. We had to go through his pediatrician, the company that makes it, repeated appointments to fix things that weren’t right and on and on. And finally, about a month ago, he got it. This is not his first piece of equipment, but it was the first that he might actually use and it is important for his wellbeing and function.

We worked hard to get him comfortable using it and made a BIG fuss over how cool it was and things were going really, really well. Last week, he and his mom went to Target to do some shopping. As they were walking through the store, a young boy sitting in the shopping cart noticed the piece of equipment and like any kid, was curious about it. And so he asked his mother why my patient had that.

And her reply was “well honey, he’s different.”

That one word, that one 3 syllable, 9 letter word, undid months of work. It crushed a little boy’s self esteem and it set him back weeks in terms of his function.

The question in and of itself is completely appropriate. That boy in the cart had every right and reason to ask his mother, and there are a million great ways to answer that question (“why don’t you ask him?” “It helps him do x, y, or z” “It makes him jump really high!” etc, etc, etc). But instead, she chose not to explain it at all, but instead to label.

Her response was possibly the worst thing that she could’ve chosen to reply with. It instantaneously created an otherness, one that we had all been desperately trying to avoid, and set it right in my patient’s lap. It was an otherness he had not yet come to fully recognize, but is now hyperaware of. That one stupid word literally changed his life.

The problem with labeling someone as different, especially with the tone that is so often used, is that it separates people into typical and atypical. It makes the group that are somehow atypical feel like they don’t belong or can’t fit in. And in the case of my patient, all he wants in the world is to belong. To have a group of friends, to play in a typical fashion, to be anything but different.

And he isn’t different. He’s a little boy. He loves Disney movies and pirates and cars and everything that kids his age love. He skips the number 17 when he counts. He is obsessed with superheroes and will do just about anything if you can make it into a game about Spiderman. He is not “different.” He may move in a way that the rest of us don’t or require help with things that other kids can do alone, but he isn’t different. He’s bright and fun and loving and everything that you want a child to be. His sameness is so much greater than his difference, but for some reason, no one can seem to get past the things that don’t fit.

I wish I could’ve met the mother in Target that day. Not because I want to scream or yell (though I do, a little), but because it could’ve been an incredible opportunity to open someone’s eyes to how powerful their words are. I wish I could’ve shown her how important a question that was and how important her answer was. I wish I could’ve educated her on all the ways my patient is not different, or on all the ways that using different in that tone is a terrible thing to do. I wish I could’ve helped her to understand how different can be good, how different can sometimes even be better.

We must do a better job of explaining and introducing disabilities and differently abled people to our children. By making these differences a negative we do a great disservice to these children and adults who have incredible talents, amazing personalities and bright futures that we completely miss because of our preconceived expectations about them. We need to teach our children to look beyond the things that give them pause, to push through their unintentional prejudices and realize that underneath what we may see as differences are often layers of sameness.

What a Difference 2 Years Make!

Well, we’ve done it. Pictures monthly for 2 years. It is likely that we’re going to continue to do them monthly for a while, but I will probably just put them on flickr and post yearly or semi-annual updates here. It’s not like I’m going to stop posting pictures of the boy in the meantime, just, I probably don’t need to crash everyone’s internet with millions of pictures a month. I don’t know his official stats, but I know he’s at least 32 inches and around 23.5 pounds now, so he’s grown a whopping 2.5 inches and 4 pounds since his first birthday. But what he has lacked in physical growth, he has made up for in maturity. I can’t believe how much this boy has changed in a year.

(For the entire first year of pictures, click here)

1 day old!
lion1

1 year and 1 day old!
lion12mo

1 year, 1 month and 1 day old
lion13mo2

1 year, 2 months and 1 day old!
lion14mo9

1 year, 3 months and 1 day old!
lion 15mo5

1 year, 4 months and 1 day old!
16mo5

1 year, 5 months and 1 day old!
17mo5

1 year, 6 months and 1 day old!
18mo6

1 year, 7 months and 1 day old!
19

1 year, 8 months and 1 day old!
20molion

1 year, 9 months and 1 day old!
21mo1

1 year, 10 months and 1 day old!
22mo1

1 year, 11 months and 1 day old!
23mo1

2 years and 1 day old!
lion 24
My sweet big boy.

Welcome!
I'm Katie, a 30-year-old, wife, mom, former teacher-turned PT, who also had brain surgery in November of 2007. This blog chronicles my daily life, from mundane to crazy, often with far too much detail. Sit down, get comfortable and stay for a while.
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