Things that make me cry now that my antidepressants have changed: A seriously random list

Oh, antidepressants. Where would I be without you? No, seriously. I’m asking. I’m a bona fide mess on antidepressants, still wading through some untreated PTSD and agoraphobia issues, watching shit like Monsters Inside Me and Googling all the different kinds of parasites in my drinking water. Waking my husband up in the middle of the night and going, LOU. I’ve been Googling, and I think I have MRSA. IN MY NOSE.

(I was right about that one, by the way. Henry and I have both had MRSA infections this month, and they’ve sucked. So sometimes my anxiety is actually founded. Suck on that!)

My anxiety came to a head a couple months ago when the combination of a hormone plunge and Henry’s constant, hawk-like screeching conspired to give me a sobbing panic attack. For the past few months, Henry’s been making this awful noise. I can’t even really convey how horrible and ear-piercing this noise is because the depth of human language doesn’t even skim the surface of how absolutely nightmarish it is. The closest approximation I can give you is this video of a screeching falcon — when I played it for Lou, he said, “God, yes, that sounds exactly like Henry. Now, TURN IT OFF before I throw myself out the window.” So if you want to know how my days have been going, turn your volume up to eleven, play that youtube video, and loop it for TWO MONTHS STRAIGHT, ALL THE FUCKING DAY LONG. That’s how it feels to live with Henry right now, who doesn’t have the words to express what he wants and just shrieks until we bend to his will. Last month, finally, I snapped: I left him downstairs with his dad, went upstairs to bed, and just flat-out refused to deal with him for the rest of the day. When he woke up the next morning — screeching — I woke up my husband and cried. “I can’t,” I said. “I can’t anymore. My skin hurts from listening to that screech. Every time I hear it my heart starts pounding. I can’t be around him anymore. I won’t.”

So I took a xanax and went back to bed — for the entire day. Lou took off work and dealt with the screaming. Later, when I dragged myself out of bed, I called the doctor and made an appointment to discuss my anxiety meds. It looked like I was going to need something a little more hardcore, if I was going to function like a normal human being — because who knows how long Henry’s going to be doing this screeching thing? (As of this writing, he’s still doing it. We have an appointment booked with the speech therapist soon — for my sanity. I mean, for his language skills. Yeah. That.)

All day long, mom. Because fuck you, is why.

I’m not saying this to get sympathy, believe me. But you know what’s funny? When I get on the right medication and my anxiety is under control, I get cocky. I think I’ve conquered my PTSD or outgrown my agoraphobia and I start tapering off my medicine, thinking that I’ve got this thing beat. And three days later, inevitably, I’m having some small body-related freakout thinking about all the ways I could have possibly died had I been born in the seventeenth century (this is something I legitimately think about, and obsess over. People just died of NOTHING back then. Typhoid. Or infected cuts. Or rat-bites. Or boils, for God’s sake. BOILS).

My point is that situations change. Anxiety levels change. Anxiety tolerance changes. It’s not something you can just cure (apparently). It’s an ongoing, ever-lasting, ever-changing battle.

So here’s what I’m battling with right now.

1. Any gospel song. Have you ever noticed, in tons of predominantly African-American movies, that a popular trope is to have a huge come-to-Jesus at the end of the film, at a Church, set to a moving gospel song? I can think of six just off the top of my head. This one. This one. This one. Sort of this one. Oh, and this too, which makes me cry whether I’m in a hormonal upswing or not. When Lou and I are watching a Tyler Perry movie and there’s a church scene, I lean over to him and go “Someone’s gonna come to Jesus by the end of this song,” with an astonishing rate of accuracy.

Oh, and definitely this. Yup, instant tears:

Shug Avery singing “God is Trying to Tell You Something” in the Color Purple. Will NEVER NOT make me cry, I don’t care how much medicine I’m taking.

2. This stupid dance from Dance Moms. Stupid, stupid, stupid dance with stupid lyrics that remind me of my stupid daughter whom I love more than anything in the entire world. I caught some of it on TV the other night and cried so hard I couldn’t eat my huge bowl of ice cream (that’s a lie).

 

“You don’t know what a song you sing, you don’t know how much joy you bring…” Screw you forever, Dance Moms.

3. Stupid kids books with an emotional appeal. Especially this book by Neil Gaiman, which is basically a little sing-songy prayer that he wrote for a lady-friend who was about to give birth to a daughter (literally tearing up as I type this). And. It’s. JUST. SO. BEAUTIFUL.

 

 

GOD FUCKING DAMMIT.

4. This Beyonce video, which I legit cried over because it’s just. so. inspiring.

“Women are so awesome, and powerful, and I’m just so darn proud to be one….sniff…LOOK AWAY!!!”

So basically, until I get adjusted to this dose, I’m going to be a living, breathing mess of epic proportions.

And did I mention that the month of October (starting tomorrow) contains my birthday, my favorite saint‘s feast day, most of my family’s birthdays, Spina Bifida Awareness month, AND my favorite holiday of all time (Halloween)?! Hopefully these meds kick in real soon, because I will be so happy, busy and just plain emotional I might just die.

Reader beware.

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Actually, Ken Jennings, wheelchairs are awesome.

Wow. The wheelchair haters are really coming out in full force lately.

First, there was Kanye. At a concert in Melbourne, he demanded that all his fans stand up as he was about to start one of his songs. Apparently, he stopped the entire concert to single out one person who wasn’t standing — because he was in a wheelchair. Only after someone waved his prosthetic leg in the air and the entire venue knew that this guy was disabled did Kanye continue with the concert. Unbelievable.

(And, okay, I guess that’s not wheelchair hating, per se, but it’s certainly insensitive and totally objectifying: “HEY EVERYBODY — CHECK OUT CRIPPLED McNOLEGS OVER HERE! He’s in a wheelchair! He’s literally the only person not standing! He can’t use his legs like KANYE!! I AM A GODDDDDD!!!!”)

No, really … he said that.

Barely a week later, another high-profile celebrity made an insensitive, ableist comment. Ken Jennings, of Jeopardy fame, tweeted that there’s “nothing sadder than a hot person in a wheelchair.” And, um, I can certainly think of a few. What about a person who’s home-bound because he needs a wheelchair and doesn’t have one? Or how about a self-proclaimed genius who’s too blind to see past conventional standards of beauty, whining on twitter about how a life-changing mode of mobility shrinks his boner? Because that is pretty sad.

“I’ll take ‘Dumbass Things To Say’ for 200, Alex.”

Ken and Kanye’s wheelchair remarks were markedly different, in two completely separate contexts, but they both solidified what our culture, in some ways, has always said: People in wheelchairs are Other. Less desirable. Deserving, somehow, to be lumped together, singled out, pointed at, objectified, and ridiculed. (And by the way, it’s not rude to laugh at someone’s disability — it’s hilarious. It’s edgy.)

Just. So. Edgy. Like this best-selling shirt from T-Shirt Hell. Takes a lot of balls to ridicule someone whose legs work differently than yours.

The consensus in our culture, I guess, is that wheelchairs are sad and people in wheelchairs should be pitied. Or singled out. Or mocked. Or all three. Which makes no sense to me now.

But at a time it did.

Before I had a kid with spina bifida, I didn’t give much thought to wheelchairs at all. But I know for a fact that I did feel bad for people who were resigned to them. Man, I thought, what a pain in the ass it would be to have to use a wheelchair. You’d always be at butt-level with everybody else. You’d have to depend on that chair for everything, and what a pain it would be to transfer over to the toilet or into bed. Ugh. I’m so glad that isn’t me.

I didn’t need a wheelchair. But my child probably will. And when he was born, it changed everything I thought I knew about disability.

He has to use a nasal cannula and a feeding tube in the NICU? Thank God. Now his body can grow and heal without having to use all his energy for eating or breathing.

He has to have a shunt? Thank you, Jesus! A hundred years ago, and even today in some poorer countries, hydrocephalus is a death sentence. But we get a reprieve — just a thin, plastic tube that reroutes his cerebral-spinal fluid to another part of his body, and the hydro is virtually not a problem at all.

We have to catheterize him? AWESOME. Without catheters, Henry’s kidneys and bladders could get seriously messed up or infected.

He might have to use a wheelchair someday? Simply fantastic. Because this little guy might need one. Since his legs and feet don’t work like yours and mine, he’ll need special assistance to get him where he needs to go: On the bus for Kindergarten, out of the house for park and zoo trips, the possibilities are endless. With a wheelchair, we won’t have to worry about him being excluded from things because his legs work differently. He won’t have to be left out or homebound. Wheelchairs are freedom! Wheelchairs are opportunity!

And quite frankly, Ken Jennings, wheelchairs aren’t “sad.” They’re awesome.

Bifin’ Ain’t Easy: The Surgery Edition

Yesterday, my husband took Henry up to Park Ridge for his tendon release and casting surgery to correct his bilateral clubbed feet. Henry is fine and recovering well (aka sleeping a ton) but the surgery did not go as we expected.

Ignore the blurriness. Have you ever seen a little boy more adoring of his daddy?

Ignore the blurriness. Have you ever seen a little boy more adoring of his daddy?

Apparently, Henry’s little bones are all jacked up, and his clubbed feet are irregular, even for a kid with spina bifida. His talus bone, I guess, is bent at a weird angle, which complicates the surgery and the casting a little bit. Here is what I understand in laymen’s terms:

Normal club foot repair surgery: Doctor goes in, releases the tendon (shudder), turns the bones, restructures the foot with a splint, and casts the foot to keep it in place.

 What they did with Henry: Doctor goes in, releases the tendon, goes to turn the bone and sees that it’s weirdly shaped and turning it would make his foot even more crooked. Doc scratches his head. Doc sews up the leg, casts it, and hopes that the casts will do the work of flattening his feet and restructuring the foot on its own. If that doesn’t work, Doc will eventually have to remove the bone altogether.

What this means for Henry is that we have to cast his feet ONE AT A TIME, to see if the procedure is successful on one foot before we start the procedure in the other foot. The reason they can’t just release the tendons from both feet and cast them at the same time is that if the surgery doesn’t work and we need to remove the bone, scarring from the first surgery can complicate the second procedure. So instead of casting both his feet for a few months and being done with it, we have to go through the casting process for one foot, see if it flattens and straightens, and then go the tendon release surgery and the casting process ALL OVER AGAIN six months later.

So eventually, the clubbed foot is going to be corrected. But we’re going to have to take a much longer route to get there.

Not to be a Debbie Downer, but this … kind of sucks.

My sweetest little boy in his foot/leg cast. I've never seen his leg look so straight!

My sweetest little boy in recovery. I’ve never seen his leg look so straight!

Don’t get me wrong — I am so thankful that we have the resources to fix his clubbed feet in the first place. I know that for the majority of children in the world, this surgery isn’t even an option. Some people live with clubbed feet their entire lives. I’m so glad we get to have this procedure done, even if it’s going to take us a little longer to cast his feet than we expected.

The difficult part about this, though, is that our hospital is 90 minutes away. And will have to drive up there every week for several months to re-cast his feet and legs. That’s a LOT of gas. And a LOT of time. Days that we drive up to Park Ridge I consider “survival days” — we’re just doing the minimum to survive. June watches a LOT of TV (we have a TV in our Honda Pilot; it’s pretty freaking sweet for long drives), both kids eat a lot of snacks, both kids play with the iPad for far too long to keep them occupied while I talk to the doctors. It’s not ideal, but it doesn’t happen very often. This casting process means we’re going to have many, many “survival days,” and that kind of just breaks my heart. I like spending our days quietly at home, not throwing bags of Goldfish crackers in the backseat and cranking up the volume on the television so I can concentrate on finding the right highway exit.

This is one of those days where I really hate the ‘bif. It can be such a freaking drain — on your family, on your finances, on your time, on your health. On EVERYONE. And I don’t say this because I’m complaining — I’m saying this because this is what spina bifida looks like. This is reality. It’s not doom and gloom, but it’s not always rainbows and sunshine either.

So this kinda sucks. But you know what? We’re grateful for this experience. All of it. No mom really wants to see her child suffer, but I’m hoping that Henry will struggle just enough to become a young man of character. I’m hoping that not only will he eventually have functional feet, but also that he can use this experience to encourage other people as well. What if one day some kid in his elementary school class has to have surgery for a broken leg, and he’s terrified? What if Henry can draw on this experience and help assure the kid that if he can have casts for months on end, so can anyone? And maybe he’ll give the kid a smile and a hug and a promise to draw a picture on his cast as well. Wouldn’t that just be the best?

We’re gonna use this shitty situation for the glory of God. We’re gonna turn this tragedy into a triumph — one leg at a time.

Wonder

 

The drive up to see Henry’s specialists is a long one, and most of the time we need to wrassle everyone in the car and hit the road before the sun’s even come up. Clinic days start promptly at nine. We leave the house at six-thirty to avoid rush hour traffic, we drive 90 minutes (if we’re lucky) up to Park Ridge, and by the time we find parking and grab a muffin for June, it’s time to report to the radiology lab for Henry’s pre-admission ultrasound. By 9, I’m exhausted and we’re usually only still in the waiting room. Clinic days are a doozy.

Every clinic day is different, but we’ve developed something of a tradition. Every time we go to the Spina Bifida clinic, I swing by Starbucks, purchase a big-ass iced chai latte, and pull out Natalie Merchant’s Tiger Lily CD that my husband purchased at Half Price Books last year (it’s always in our car because seriously? Have you heard it? That album is great). I turn on the second track and drive into the sunrise with this song on blast. I even throw in a fist-pump or two if it’s not too early.

I love her songs. I was eight when that album came out, so it reminds me of early fall afternoons as a third grader, watching episodes of Pop Up Video and eating fruit roll-ups while I struggled to do my math homework.

I blast that shit.

“Too noisy!” June hollers from the backseat, but mama don’t care. There’s one song in particular that I have to hear.

Doctors have come from distant cities
Just to see me
Stand over my bed
Disbelieving what they’re seeing 

Maybe it’s too on-the-nose. Mama don’t care. I had heard this song before in the third grade, and it was catchy, and I’m pretty sure the Pop Up Video version made my afternoon, but when I listened to it after Henry was born the entire world melted away and I grabbed my noise-cancelling headphones and blasted it because I was hearing it all for the first time. This is our anthem. And what more appropriate place to listen to it when we travel back to the place where we were first told our little boy would never walk?

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as she came to my mother
Know this child will not suffer
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She’ll make her way

I adore this song and it resonates in my bones more than any Haas/Haugen song at Sunday Mass. It’s become our anthem. This child will be able. This child will not suffer. He will make his way. It might not be the same way everyone else travels, but dammit, he will make his way.

And it’s haunting — if I could go back in time and tell my old self anything, I would do exactly what Destiny is doing in this song. I would laugh. At the cluelessness of the doctors. In anticipation of our joy. I would whisper in my own ear — he will be able. He will be gifted. He will make his own way. You have no idea. 

I was accused a few months ago of lying. The specifics are unimportant, but basically I got into it with a bunch of strangers in an Internet combox who were asserting that a life with spina bifida is miserable, horrible, and that abortion would be a much preferable alternative. Needless to say, I disagreed. Others chimed in, saying that spina bifida was “incompatible with life” and that I was “minimizing” Henry’s “suffering.” Obviously, spina bifida was awful, and I had no earthly idea what I was talking about. Man. I’m the worst!

Is it difficult, this road we’re driving down together? Yeah. It is. And I want to write more about the difficulties we’ve faced — as a family unit, as a married couple — because sugar-coating our journey ain’t gonna help anybody. My marriage has scars, and I won’t pretend that it doesn’t.

But isn’t that what’s great about wonder? It’s a feeling of surprise, mixed with admiration. We are living this life. We’re walking down this difficult road together, our spina bifida journey. And I fully expected when we got the diagnosis — in all my ignorance — that it would be nothing but hardship and constant misery. And it’s just not. And I’m surprised. And I laugh. He is able. He’s not perfect. None of us are. But we’re able. And we’re making our own way.

And this boy? My smiley boy? So worth it.

I wouldn’t trade this fabulous life of ours, this sometimes-daunting road we’re walking down together. We’re making our own way — with love, patience, and faith. And I wouldn’t trade it for all the gold in Gringotts.

An Open Letter to Judgey McJudgerson about the iPad Potty

Dear Judgey McJudgerson,

This is the picture you shared on Facebook today. You were shocked. Aghast. Horrified. Can you believe it? There are some parents (lazy jerks, I bet) who actually use these things to get their child to use the potty. I mean, just look at this thing. What’s next? Those levitating chairs from Wall-E?! It’s sick, I tell you. SICK.

Your judgey friends chimed in as well:

“That’s so disturbing.” 

“This is only for lazy parents. I would sit next to the potty and read my daughter BOOKS when we were potty-training!” 

“Wow…really? Ever heard of INTERACTING with your child instead of plopping him down in front of a SCREEN?!” 

“Whatever happened to small treats, like a sticker or a cookie? I guess I’m just old-fashioned that way!” 

“What has our society BECOME??!” 

Judgey, let me introduce you to my son.

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I know, he’s unfairly cute. Try not to stare.

Henry has Spina bifida. In about a year, we will begin something called a bowel program for him. Henry has no bowel control. I know, I know what you’re thinking: What baby does have bowel control? That’s what I thought for a long time, anyway.

You know when babies crawl around on the floor, and then they stop what they’re doing, their faces turn red, and they strain VERY OBVIOUSLY to push something out? And that “something” turns out to be poop? Those babies can control their bowels.

For Henry, he poops (and pees) pretty much all day long. It just comes right out. No straining, no pushing. No notice at all, actually, and we’re not sure how much he’s even able to feel down there. Regardless, he can’t control his bowel movements. Poop just pops out of him randomly. (Which, let me tell you, makes me feel like a super shitty parent, no pun intended. People have been known to pick up Henry, wrinkle their noses, and hand him back to me — oops, a poopy diaper! Mommy must not have realized! What they don’t know is that I just got done changing a poopy diaper five minutes ago. And ten minutes before that. And thirty minutes before that. Kids with Spina bifida tend to have lots of really bad diaper rash — is it any surprise?)

So. My point. In a year or so, we’ll have to start a bowel program for this guy, in order to keep him “socially continent.” This means that we’ll perform something called an enema, either once a day or every 48 hours or so, that completely flushes out his bowels so he won’t poop at all during the day. This will allow him to be around other kids and other parents without being the “stinky one.” Great, right?

Here’s what you don’t know about enemas: Kids who get enemas — which is most of the kids who have spina bifida or any kind of spinal cord damage — have to sit on the potty for a long, long time. Much longer, in fact, than a child with typical bowel control. Enemas flush out a lot of poop, so they take a while to work. Kids who use enemas for their bowel program can sit on the potty for forty-five, sixty, or sometimes even upwards of ninety minutes.

Judgey, when was the last time you had to get your toddler to do anything for upwards of ninety minutes? 

Will we purchase this iPad toilet? That remains to be seen.

But, Judgey, you better believe that if this thing gets my son to sit on the toilet for ninety minutes, I’m going to purchase the hell out of it. And I won’t be one bit sorry.

Know what I think? This thing is freaking great. It’s a masterpiece. Potty training is hard, with a bowel program or without, and whatever keeps your kid socially continent and potty-trained before they go to kindergarten, I’m all for.

And you know what else? I’m just gonna say it. All types of parents buy these kinds of things for their kid. Maybe they have a child who is fully potty-trained EXCEPT for poop, and getting her to sit still and poop in the toilet for more than thirty seconds is an impossibility without some screen time (I have one of those children). Maybe they have a kid with really bad sensory issues, and they need some hardcore distraction because poop just feels weird. Or maybe their kid just won’t sit still and kindergarten is fast approaching and they’ll try anything because they’re desperate.

My point, Judgey, is that there are millions of different kinds of people, and there are millions of different ways of parenting. You’ve appointed yourself the Official Worrier of Other People’s Children and Society In General, and you’ve decreed it a crime against humanity to use one of these things to toilet train, because technology will rot their brains!. And relationships will suffer. And WON’T SOMEONE PLEASE THINK OF THE CHILDREN?!?!. But if you step outside of your self-righteous little bubble, maybe you could learn to appreciate a parent whose kid hasn’t potty-trained as easily as yours. And maybe instead of judgment, you can offer compassion. Or understanding.

Or maybe just mind your own freaking business.

 

 

No love,

Wifeytini

What Spina Bifida Looks Like (So Far): An Update

A few weeks ago, the kids and I went to weekly Rosary at our church. (In the interest of full disclosure, lest you think we are super holy or something, we showed up late and I knew about half the words to the Hail Holy Queen prayer. What I did remember sounded something like, “Hail, Holy Queen — sit down! — our life, our sweetness, and our hope. To thee — sit on your bottom! Now! — do we cry — stop crying! — poor, banished children of Eve — just take this candy. EAT THIS CANDY AND BE STILL!

 and et cetera.)

 I was chatting it up with another woman afterward, and I casually mentioned something about Henry having special needs. (I don’t know how these things come up in conversation. Honestly, whenever I’m first meeting someone, I just want to blurt out Henry has spina bifida! — not because I think it’s relevant, or that it defines him, necessarily. But because people are always shocked when we’ve been talking for a while and it inevitably comes up. I feel like I’m hoodwinking people. This woman was no exception.)

This woman was stunned. “Special needs?” She said, visibly taken aback. “What’s wrong with him?”

“Not a thing,” I said. “But he has Spina Bifida, so he has some mobility problems.”

“He does?”

“Yeah, along with some other things. He has a shunt.”

“What? You can’t even tell!”

“I know, right?!”

These conversations never fail to make me laugh. I will never forget Henry’s many ultrasounds, and hearing the words shunt and clubbed feet and multiple delays, and imagining myself giving birth to, well, some kind of creature. In utero, he seemed more like the sum of his various disabilities rather than an actual person. When I was pregnant, I desperately wanted a glimpse of what he would look like at birth, at six months, at one year. Would he be okay, in spite of his problems? Would be be deformed and eternally pitied?

And the ultimate question — Will I be able to love him? Will other people?

Fourteen months later, you’d have to be insane not to love him. He’s a butterball. He’s incredibly social — the opposite of June, who doesn’t want anything to do with you if you don’t have candy — and constantly babbling, smiling, laughing. Amazingly, he has no cognitive delays so far. He is scoring ahead of his age, developmentally, in a few areas. What I would have given to know that when I was pregnant with him. The most common question people ask me is, how’s Henry doing? I never know what to say, other than he’s incredible, he’s doing great. He’s got some medical issues, obviously, but they’re just such a small part of who he is, and they affect our day-to-day life so little, his good-natured, super strong personality just kind of eclipses all of that. He’s just great.

But anyway. Because I so desperately wanted a “future preview” of sorts, when I was pregnant, I’m hoping to provide one now, for anyone else who is wondering how Henry’s doing, and for anyone who is currently pregnant with an SB kid and wants to know what SB might specifically look like a little farther down the road. So given that Spina Bifida is a spectrum, and that all children look and develop differently, here is what Spina Bifida looks for us, 14 months out of the gate (and by “gate” I mean “vagina”).

You’re welcome, for that visual. Also jk I had a c-section.

So how can you tell he has Spina bifida?

He was eight weeks old here btw

Probably the most glaring defect Henry has is clubbed foot. By far, this was the thing that scared me the most when I was pregnant with him, other than the prospect of him being severely mentally handicapped (which, actually, is a rarity with spina bifida). The term “clubbed foot” sounds like such a horrible, grotesque anomaly. I had no idea they would be perfectly adorable baby feet that were turned inward. So not the nightmare that I was expecting.

Truth be told, we love these little hook-feet. He crawls all over the floor, and his little hook-feet catch various things and drag them across the floor with him. We’re always having to chase him down and pluck things out from between his legs. They are ridiculously soft and smooth and precious.

People ask us often when we’re going to “fix” his feet. The answer is June. We have a “tendon release” in his feet (::shudder::) and ponsetti casting scheduled for the first week of June — we wanted to wait until he was able to use those muscles developmentally, with standing and pulling up and such, so that he would potentially have a better outcome. Is it crazy that I’m going to miss these tiny feet? Is it crazy that I look at other babies’ feet and think, “Wow, those are so big and weird-looking! EW!

WRONG. Give me little hooked parenthesis feet or give me NOTHING AT ALL

One thing that’s been problematic about Henry’s SB is the lessened feeling below his knee. Since Henry has spinal cord damage, the feeling below his knee is limited. It’s kind of hard to tell what he can feel, if anything: Sometimes I swear he can feel me tickling his feet. Other times, like in January, it doesn’t look like there’s much going on down there.

In January, I went upstairs to retrieve him from his nap, and what I found in his crib shocked me. Happy as a clam, Henry was lying there with blood all over his face. When I whipped back the covers, to my eternal horror I saw that he had blood smeared all over his legs, and his toes were a mangled mess.

Like this, only not as metal

Turns out, after the husband and I stopped freaking out and calmed down enough to assess the situation, Henry was nibbling on his toes like any other baby would. Except that since he couldn’t feel any pain or pressure, he just kept nibbling…and nibbling. So in our house, when Henry’s cutting teeth, we stock up on socks, shoes, and a bunch of bandaids and antibiotics. Gross.

THOSE CHEEKS

Henry also has low trunk strength and limited hip flexion. You can see it a little bit in the picture above, how he’s kind of leaning forward and folding in on himself (granted, he was like two months old in this picture, so he wouldn’t really be sitting upright anyway). The lower trunk strength issues make him a little wobbly when he sits unassisted. The hip flexion problems make it difficult for him to stand upright.

Here’s a super-scientific diagram of what I’m talking about:

So basically, if Henry were to stand, he’d be sort of folded in on himself and standing at an angle, like a little old man using a walker. This is because of tight tendons in his hips, or something. We’re trying to stretch out these tendons in physical therapy, but there’s a small chance he might need surgery to “loosen” them. (::shudder::) Our hope is that he will be able to stand and walk, relatively unassisted. He does neither right now.

Poor hip flexion, clubbed feet, and limited trunk strength. But he's SOOO CUUUUTE

Poor hip flexion, clubbed feet, and limited trunk strength. But he’s SOOO CUUUUTE

What he can do is amazing. No, he does not walk. Yet. No, he does not stand. (Although there are kids with SB I know who can stand at this point. Like I said, it’s a spectrum.) BUT — he’s starting to pull up into a kneeling position (when I’m unloading the dishwasher and he tries to pull the knives out of the silverware rack).  And best of all, he crawls all over the place. So quickly that at preschool this week, he crawled out the door and into the hallway three times before I found him and caught up to him. Dude is fast.

Crawling! Something we were told he'd never do. Take that, bitches!

Crawling! Something we were told he’d never do. Take that, bitches!

In summary, he’s doing amazingly well, and I am so incredibly proud. This is what SB looks like for us at this moment in time.

Which is to say, better than I ever thought possible.