Maybe I caused it. Maybe I didn’t. Here’s why that doesn’t matter.

October means it’s Spina Bifida awareness month, so that means everyone and their mom is up in arms about prevention. If you follow any Spina Bifida-affiliated organization, then you’re totally gonna get an earful this month about folic acid and how SB is totes preventable if you JUST TAKE FOLIC ACID FOR THE LOVE OF CHRIST. (Sara from Ernie Bufflo does an excellent job of explaining why that isn’t always the case, and how SB prevention often gets in the way of serving the people who are already here.)

I don’t talk much about prevention on this blog, because it’s totally irrelevant to us and a majority of the people who read this. Like Sara said, we’ve got SB, and it’s not going anywhere. It’s part of who Henry is, and no amount of folic acid is going to change that. It’s not really something I talk about, because it’s not really something that affects us now. But I’ll talk about it today.

One thing that saddens me greatly during October (and, to be honest, every other month. But particularly October because the push for “awareness” and “prevention” is so high) is the scores of mothers on our SB support groups who admit to feeling haunted: “Could I have prevented this?” They ask. “Was it my fault because I waited to take prenatals once I found out I was pregnant, instead of before?” My friend Mary Evelyn echoes this, and she wrote a post this morning about folic acid and guilt that ought to be mandatory reading for every newly-diagnosed parent.

 

 

My heart goes out to these women completely, because I’m among their ranks — Did I cause this? Did I not take enough folic acid? Truthfully, I don’t think about it often, but I do think about it some. And I’ll admit that while most of the time it’s not something I concern myself with, during my worst moments (and we all have those, right? Those wow-I-suck-I’m-a-terrible-mother-and-human-being-moments?) I believe beyond a shadow of a doubt that I’m the one who caused his defect:

We waited only a year between pregnancies, and I was breastfeeding June when we conceived. (Who knows — maybe she sucked all the nutrition out of me?)

I’m chronically anemic (I have been my entire life), which goes hand in hand with folate deficiency (which I didn’t know at the time).

I ate pretty much nothing but baked potatoes and Panera soup during my first trimester (but I’m gonna go ahead and blame the baby on this one. If he wanted me to eat tons of folate-rich spinach, he shouldn’t have made me throw up every time I ate anything.)

– Here’s something that really haunts me — something I’ve come to accept and make my peace with, though it still lashes out at me in my worst moments. The minute I found out I was pregnant with Henry, I remembered how agonized I was after June’s delivery. During the pushing stage, I think I pulled just about every muscle in my body trying to get her out, and I was so woefully out of shape it took me weeks to recover from childbirth. So right after my positive pregnancy test, I went out every morning with June and took her for a walk in the stroller. In mid-July. In ninety degree weather. It was hot as balls, but I thought I was getting healthy for him. I knew vaguely that high body temperatures (hyperthermia) increases your risk of neural tube defects like spina bifida, but I took that to mean no hot showers or electric blankets, which I stayed away from religiously. I didn’t think that meant I couldn’t exercise. I thought I was doing a good thing.

Does that cover it? The millions of ways I could have given my son spina bifida? I took prenatals, by the way. I even took a folic acid supplement — more than the standard recommended dose. And another thing I loved to eat when I was pregnant was Total cereal — which is fortified with folate and has 100 percent of the recommended dose. So who knows — maybe it wasn’t folate deficiency. Maybe I didn’t wait long enough between pregnancies — a known reason that Latina women are in a high risk category for neural tube defects (Latina women tend to have more babies and space them closer than any other population). Maybe it was the fact that my dumb ass went out every single morning during my first trimester and sweated my balls off, determined to get in shape for his delivery, raising my body temperature to potentially unsafe levels.

Maybe I caused it. Maybe it was my fault. Maybe. I’ll never know.

Now let me tell you why none of that matters.

Being a mother has always been of utmost importance to me. We waited about five seconds after we were married to start trying to get pregnant, and four months later we were pregnant with June. When June was just a year old, we both got a strong urge to try again for another. We were in a good place financially — paying off our debts, saving a good amount. Lou had a steady job. June was an incredibly easy baby, who we thought could benefit from having a sibling. There was nothing stopping us. So we tried again, for Henry.

The funny thing about trying for Henry was that I knew I would be having Henry. Henry was the only baby name we could agree on, boy or girl, and I strongly suspected that when we got pregnant, we’d be having a boy (boys run in the family, on both sides). Right after June’s birthday (at the end of June), I heard a small voice in my ear. You’re fertile now, it said. If you want to get pregnant this month, you’re running out of time to try. So we tried.

(Only one other time have I ever heard this small nagging voice in my ear. In college, Lou and I were spending a lot of time together, getting to know each other, but not yet dating. I remember sitting in a Political Science class one day and hearing, out of the blue, someone telling me that if you date this person, he’ll be the last person you ever date. Writing that seems creepy, though, like he was going to murder me or something.)

I tell you, the minute he was conceived, I knew we were pregnant. I knew it “took,” on the very first try. And for weeks afterward, I took pregnancy test after pregnancy test, knowing we had conceived him, but not getting a positive result. Finally, on July 17th, we got one. Pregnant. On the first try. With Henry. Bam. Henry, whose namesake we now know, is the patron saint of disabled people.

My point is this: I was always meant to have this child. He was always Henry, and he was always mine, which takes the sting out a little bit when I think of maybe how I could have caused his defect. Whether I “caused” it or whether it was just a totally random happenstance, it doesn’t really matter to me any more. Because he was always Henry. He’s always had a special purpose. He was always mine, from before he was conceived, and I think the significance of his namesake points to the fact that he was always going to be disabled, and that he would use that disability for the glory of God. To help other people, somehow, in some way, that were disabled like him.

Maybe it was my fault. I don’t care anymore. He’s here. He was always supposed to be here. He gives my life purpose and joy, and that overrides the guilt I have any day of the week. If I gave him spina bifida because I took long walks in the heat for my first trimester, then that lands me among the ranks of parents who totally screwed up their kids by trying to do good by them. And I can live with that.

Like Mary Evelyn said so poetically, I’m moving on. I’m letting go. I’m thanking God for the gift that is my child.

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And as Jesus passed by, He saw a man who was blind from his birth. His disciples asked Him, “Rabbi, who has sinned, this man or his parents, that he was born blind?” “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.” John 9: 1-3

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.

Bonding with the babies, in spite of myself

Four in the afternoon is what I like to call white-knuckling time. Right around four is when both children get really tired (that’ll happen when you wake up at 5:00 AM and refuse to take a nap — go figure) and one of two things happen. One, they either get inexplicably hyper and run/crawl back and forth from the kitchen to the living room, demanding graham crackers, or they get crying-angry. Crangry. Everything upsets them — they want peanut butter toast instead of the delicious organic dinner and probiotic-laced chocolate milk I prepared for them. Henry wants to take the knives out of the dishwasher and crawl around with them. June wants to watch Daniel Tiger’s Neighborhood but NOT THAT EPISODE YOU DUMB BITCH, and cue the screeching, art-supply-throwing meltdown in the middle of the living room floor. From about 4:00 onward Lou and I start white-knuckling it and counting down the minutes until we can throw them in bed and enjoy some motherfucking SILENCE, REAL TALK.

I have this horrible habit of staying up long after I should have gone to bed (like ten thirty, you guys) because I love the feeling of not being hounded by two demanding little tyrants. I’m really tired every morning but oh, the freedom of eating peanut butter toast and watching Netflix for hours and hours is the only thing that keeps me going some days. So immediately after we put them down for bed, I head straight to loft with my laptop and a bag full of those honey-mustard pretzels and nobody is allowed to talk to me or ask me to do anything for the rest of the night. My husband joins me in the loft eventually and sits in his reclining chair and draws awesome comics while he watches old episodes of 30 Rock. And that is romance, y’all. That is why we’re happily married and have been best friends for seven years now. Deep conversations? Candle-lit dinners? Take that noise somewhere else. After a full day of toddler tantrums, I just want to be left alone to eat pretzels and scroll mindlessly through a bunch of hilarious gifs.

Inevitably, every single night, I end up on facebook scrolling mindlessly through pictures of my own children, because I am addicted to them like crack. I cannot get away from them. The first hour or two after they fall asleep I’m like, yes, I am going to stay right here with my netflix and pretzels and I’m not getting out of bed unless there’s a fire, and even then probably not. After a couple hours, though, I pull the earbuds out of my ears and start telling Lou about the hilarious things June said during the day. “Oh! I forgot to tell you what Henry did!” is how most of my sentences start after 8:00. By 8:30 I’m wandering in their room “just to check” on them, hovering over them like a crazy ex-girlfriend, because they are just so breathtakingly beautiful with such pillowy cheeks. You can’t not kiss them. And then maybe you kiss the baby and he wakes up and starts whimpering because he wants to nurse but that’s okay because you missed him anyway.

Ewwww! Creeper, no creeping! But yeah I’ve totally done this to my children.

Maybe it’s because I have a panic disorder but I have this weird anxiety that I’m not “bonded enough” with either of them. I don’t know how much more love it’s possible to feel for these people, but I always have this nagging fear that if I’m not constantly enjoying them, it means I haven’t bonded with them enough and they’re going to develop Reactive Attachment Disorder and turn out to be stabbers.

God knows I didn’t get to hold either one of them right after they were born. Not that I’m bitter — it was a decision borne out of choice and necessity, and with both of them I remember feeling very zen about it at the time, and even now. I have years and years of getting-to-know them ahead of me, I thought, as the nurses wrapped up June and brought her over to my husband. But then a few weeks later, in the hormonal, sweaty hell that was post-partum anxiety, I cried as I wiped off my back-sweat with a towel: What if I hadn’t bonded with her enough?! What if I didn’t really love her?!

June’s birth was relatively easy, as births go. Not even a day of labor, just a few hours of really hard labor (mitigated by the epidural, thank you Jesus), less than an hour of pushing, and she was here. Afterward, however, was when it all fell apart — already anemic, I retained my placenta and hemorrhaged everywhere. Two hours later I woke up — weak from blood loss, loopy from the drugs, exhausted from the delivery. I was still half-awake when my husband handed me the baby — swaddled and sleeping, not the screaming newborn I had pictured squirming naked on my chest post-birth. I didn’t feel a rush of love — relief, maybe, that we had survived. Contentedness, knowing that the hard part was over and I was free to enjoy my baby. But mostly I just felt like going back to sleep. I had been awake for 36 hours at that point and was on the verge of needing a blood transfusion; sue me.

Three days later, we were home and I still felt like I had been run over by a truck — shaky, aching, and overwhelmed with that new-mom exhaustion you can feel all the way down to the marrow of your bones. At one point, my mom scooped the baby out of my arms and shooed me into my room to take a nap. Wide-awake but nauseous with exhaustion, I burrowed under the covers, closed my eyes — and nothing. I waited — ten minutes, fifteen, twenty — on the verge of sleep but unable to fall all the way under. My heart started to race. Dear God, I thought, if I don’t sleep now, June will wake up and need to eat, and I won’t have another chance to nap for who knows how long. Until night-time, at least. Oh wait, she doesn’t sleep then, either. Go to sleep, dummy! Sleep NOW! Amazingly, this didn’t help me sleep. I pulled a sleep mask over my eyes. Put headphones in my ears. Waited, waited. Nothing. My heart started beating faster. I started whimpering, then full-out sobbing. I was never going to sleep again. I started dreading the baby, fearing the baby. I never wanted to see the baby again. I just wanted to sleep and sleep and sleep. Oh God, I begged, please don’t let her walk in here with the baby.

Right on cue, Mom walked in with the baby. I was crying so hard I could barely see them through my tears. And then I did see them — my baby — and my heart soared. “Hiiiiii!” I screeched, probably too loud, suddenly feeling the weirdest mixture of miserable and elated. My baby! She was here! I was still tired, terrified, and every muscle in my body ached, but now, as a consolation prize, I got to hold my precious, pink little baby girl and smell her fuzzy head as she nursed. I was the poster child for post-partum anxiety — sweating, unable to sleep, overwhelmed — and sick with love for my little baby. Yay! I thought, holding out my arms and making gimme-gimme-gimme hands at her feverishly. The baby’s here, the baby’s here!

At some point in the first few days, completely unbeknownst to me, June had gone from a mewling stranger that I tolerated nervously to a snuggly, precious little creature whom I loved — genuinely loved, conventional “bonding” be damned. We didn’t do skin-to-skin with either of them right after birth — the hemorrhage got in the way of that for June, obviously, and Henry had to be whisked off for his myelomeningocele surgery — so that fabled rush of post-birth oxytocin is something we all missed out on. But we bonded. I started loving her. I don’t know when it happened, but it did. It felt like crazy, hungry, desperate fear for her safety until I got my antidepressants straightened out, but it was love, it was attachment, whatever you want to call it, and it was there.

I still feel it at four in the morning, when Henry wakes and shrieks like a falcon until I stumble over to his crib and thrust a sippy-cup under his nose. God I’m so tired please go back to sleep oh hiiiiii sweet baby boy, look at those precious little lips! When I crawl back in bed there’s a lump taking up most of the space on my pillow, and I remember that June crawled into bed with me last night at midnight. I yuv you my snuggly girl she tells me, so I let her climb up into my bed, but just this once (yeah right.) And I think, They’re here, they’re here, my babies, they’re here.

Idea Potluck: Like a Gatsby party (without the murder)

I had an incredibly fun night in Chicago on Tuesday. I had the great pleasure of speaking at an event called IdeaPotluck, run by Mac and Cheese Productions. I say “event” because it makes me sound super professional and important, but really it was like an improv party with a bunch of fun, eccentric people and delicious beer.

Like a Gatsby party. Except without the fireworks. And the murder.

The Potluck is hosted once a month by Saya Hillman, who I had the pleasure of meeting through Listen To Your Mother, and her husband, Pete. The gist of it is that a handful of speakers get up in front of a usually-sold-out audience and just talk. About whatever. Whatever they’re passionate about, they riff on for six minutes, to a hugely supportive audience. I squeeed in excitement when Saya asked me to be a “dish” (the nickname they give their speakers), while my introvert husband shuddered. “That sounds terrifying,” he said. It kind of is. In a fun way.

Your host, Saya Hillman.

Your host, Saya Hillman.

The most fun thing about Idea Potluck, to me, is that all the speakers have such varied interests and passions. One speaker talked about website design. Another talked about craniosacral therapy. Another gave a powerpoint presentation about quitting her job and traveling throughout eastern Europe. In the past, the Potluck has had musical performances, beatboxing, you name it. It’s a fun sampling of different people’s lives, and each presentation is only six minutes, so it’s not really possible to get bored of any particular subject.

There were way too many awesome performers to summarize in this blog post, and my crappy iPhone pictures probably won’t make a very compelling blog. But all of the performers are listed on the Potluck website and are worth checking out. Some highlights for me were:

Laughter Yoga! Lauren gave a pretty entertaining  rundown of how she got kicked out of AA, maintained her sobriety, and punched fear in the face so she could launch her own acupuncture clinic. What a cool lady!

Laughter Yoga! Lauren gave a pretty entertaining rundown of how she got kicked out of AA, maintained her sobriety, and punched fear in the face so she could launch her own acupuncture clinic. What a cool lady!

and:

Brit Belsheim blew me away with her speaking abilities. Brit is an actress/improv-er working in Chicago, and she shared a funny and powerful story about loss and restoration. She reminded me of Jennifer Lawrence, actually. She was way cool.

Brit Belsheim blew me away with her speaking abilities. Brit is an actress/improv-er working in Chicago, and she shared a funny and powerful story about loss and restoration. People who can get up in front of an audience and just riff without cards or prompts amaze me to no end, and Brit did just that. Plus she reminded me of Jennifer Lawrence a lot, so overall I’d say she was pretty darn cool.

finally:

Rude Hippo Brewing Company also made an appearance and brought some of their delicious libations. Their beer -- oh my gosh. I have tried IPAs before and have though "Meh, they're okay." I'm not a big beer drinker. But their brew -- their IPAs -- my God. The world stopped spinning. It was so delicious. They are currently raising funds to open their own brewery, and if you like delicious IPAs, you should probably go support them. Like, now.

Rude Hippo Brewing Company also made an appearance and brought some of their delicious libations. Their beer — oh my gosh. I have tried IPAs before and have though “Meh, they’re okay.” I’m not a big beer drinker. But their brew — their IPAs — my God. The world stopped spinning. It was so delicious. They are currently raising funds to open their own brewery, and if you like delicious IPAs, you should probably go support them. Like, now.

Throughout the night I kept thinking, man, I wish this was a thing when I was in college! I would have been all over this kind of thing like white on rice. In fact, it really made me miss the days when my husband and I were married, without kids, and living in the city, where incredibly fun things to do were just a short ‘el’ ride away. If I still lived in Roger’s Park, I would be at the IdeaPotluck every single month.

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My face, right after performing. I read my essay, “If healthy pregnancies were treated like special needs pregnancies,” which you can find here.

So, for anyone who can make it to Idea Potluck every month, do it, I implore you. It’ll remind you of a Gatsby party. It’ll make you wish you didn’t have kids (if only for “two couple minutes,” as June likes to say). It’s the most fun you’ll have on a Tuesday night.

 

Happy Father’s Day

It’s such a lovely feeling to be married to someone that you’re proud of.

My husband doesn’t say much, so you will never find him on Twitter or Facebook or any other kind of social media promoting his work. I, on the other hand, never shut the hell up, so I’m just gonna go ahead and do it for him:

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Awesome cartoon courtesy of Lucius Wisniewski. Isn’t he talented?

 

My husband is not only a stellar artist, but he’s a phenomenal father who loves his children more than he will ever articulate. I know this because he bites his lip to keep from laughing at June when she openly defies me or throws a tantrum. I know this because the minute Henry feels a tiny bit warm or is in the slightest amount of pain, he starts pacing and frowning and snapping at people because he’s just so worried. HIs love for his children is in the bite mark on his lip, the terrified feeling in his stomach. He adores them; he agonizes over them. He doesn’t talk about it endlessly, like I do, but I can see it.

And I can see it in his artistic ability. Flipping through his sketchbooks, you can see pages and pages of cartoons — all of them starring our children. All their little personality quirks. Snippets of conversation. Portraits. If an artist draws what he loves, then we are very well loved.

Happy father’s day to my sweet husband. Thank you for loving us — in thought, in deed, in expression, and in art.

“I smell an agenda…” You bet your balls you do.

One of my favorite sites, Sociological Images, shared one of my blog posts on their facebook and twitter pages this week.

To say I “fangirled” would be an understatement. I was all, whaaaaat?! CHYEAH! I LOVE THEM! They shared my stupid blog post?! They called it a “fabulous satire”?! BRB GONNA DIE OF HAPPINESS NOW!!!! 

(I’ve noticed that two things make me downright giddy, by the way — eating sushi, and being syndicated by a respectable publication. In the past month, my blog posts have been picked up by the Huffington Post (twice!!!), The Mighty, and MamaHealth. Someday I’ll write a piece for the New York Times and I’ll be scarfing down a big-ass Firecracker Roll as it goes live. That’s the world I want to live in.)

I have a vice, though. I gotta admit. I read the comments when my articles are shared, in whatever context. Twitter, Facebook, Pinterest. I really want to not do this, but I’m half-curious and half-thinking that it might be a good idea to read some constructive criticism (ha). Anyway. I’ve read a fair share of snarky comments about my writing, and it doesn’t bother me. But one comment last night, on the blog post that Sociological Imaged shared — it bothered me.

“I smell an agenda here,” someone said. 

I don’t know why it bothered me. But she was absolutely correct. I do have an agenda.

You smell that? It’s an agenda. And it STANKS.

First on my agenda is to write, because I like writing. I try not to do it and it doesn’t work. I just keep coming back to the keyboard. Two years ago I gave in. Fuck it. I’ll write because I can’t not write. And whoever wants to join me is welcome to.

But my other agenda? I want to change the way we talk about disability in this culture.

I am not an expert on sociology, or language, or (least of all) people with special needs. All I know is that every day since we learned Henry would have spina bifida, we were conditioned to think the worst about his diagnosis. We were advised to terminate, by more than one person, seemingly because a life with spina bifida is so terrible that it’s better to not live it at all. Can you comprehend that? There is such a disconnect between the beautiful children I see who happen to have a disability, and the sorry, deformed, faceless nobodies that our culture makes them out to be. And the disconnect didn’t hit me — not really — until right after Henry was born.

I was holding him, actually, when I got the phone call. It was a nurse from some county office, wanting to let us know that, because of Henry’s condition, we qualified for food stamps and other assistance (which we declined).

“I’m calling,” she said, her voice dripping with sympathy, “because we hear you’ve had an adverse birth outcome.”

What? I thought. He died? And then I realized she was talking about Henry. What the shit? I mean, he’s got some issues, sure. But adverse? A “birth outcome”?

The thing about defining moments is that you don’t really realize they’re defining at the time. My response wasn’t one of righteous indignation. I didn’t deliver some Sorkin-esque speech. I said “Wow. Uh, no?” And then I laughed. Because it was ridiculous. I wasn’t mad, don’t get me wrong — I’m sure she was a very nice woman who was tasked with having a very uncomfortable conversation with a hormonal, post-partum stranger. I get that. But damn if what she said didn’t knock my socks off. So that’s how you see them, I realized. That’s how you see my baby.

Let’s stop with all the bullshiz. People with disabilities are people. They aren’t inspirations or heroes, necessarilybut they aren’t outcomes either. They’re endowed by our Creator with human dignity, by virtue of their status as human beings.

Yes, we should keep them. We should cherish them. We should change the way we think about them, and the way we talk about them. That’s my agenda. That’s where I’m going. And whoever wants to come along is welcome to.

A Fifteen-Month-Old in a full leg cast: How it’s going

In a word? Splendidly.

Remember last week when I wrote a post about Henry’s casting situation, and how it was going to be sooooo harrrrrd, you guys?! (Well, I mean, it is going to be longer and more costly than we anticipated, and we are going to have to drive up to Park Ridge a lot, and that’s gonna be expensive). BUT. Happily, to my surprise, Henry doesn’t even seem to notice that he has a cast on.

HALLELUJAH PRAISE THE LORD

So far, Henry has been able to crawl/scoot anywhere he wants. To my sheer and utter amazement, he really hasn’t been slowed down much, if at all. He plays with all the same toys. He enjoys the same level of mobility. He seemingly hasn’t been in any pain.

I hesitate to say this, given that we’ve only had this cast on for a week, but this might just be an enormous blessing in disguise. I was a little deflated when I heard that the doctor couldn’t cast both feet at once. But Henry (and the rest of us) would have been nowhere near as happy and mobile had he been in two leg casts instead of one.

(Would it be too self-centered to say that I think there’s a pattern in my life — of God taking seemingly unsurmountable difficulties and turning them into huge blessings? Who knew, when Lou told me that Henry couldn’t have both legs casted, that it might actually be easier for us in some ways? BAM. Huge blessing. Who knew the horrific morning sickness and debilitating anxiety that accompanied my first pregnancy would result in my beautiful little girl? Who would have thought that my “problem pregnancy” would turn into this snuggly, ropy-poly little blonde fatty who gives hugs and kisses all day? Like God dropping a little love-bomb straight from heaven. Next time something crappy happens to us, I’m just gonna sit back and wait for the blessings to start rolling in. As they inevitably will.)

The challenge now is finding activities that don’t soil or dampen his cast, and that’s easier said than done. Chalk? Gets all over his body and inside his bandages, along with the dirt and gravel from the driveway where we’re coloring. Same with paint. Putting a plastic bag over the cast is an option, but since he likes to crawl, he drags his gimp-leg around on the pavement and the pavement rips into the bag and exposes the cast. So the splash park is out. So far we’ve been playing in the sandbox, taking some walks, and watching TV. It’s frustrating to take him out since he insists on crawling around on the floor (and by “insists” I mean shrieks like a falcon until one or both of us comply with his demands) and we can’t always let him, depending on the floor surface. All this to say, any ideas are welcome for toddler activities that are dry, don’t involve mess, and won’t compromise his bandages. There’s only so many times I can stick him in his high-chair and have him play with Jello.

Thoughts? Suggestions? They’re more than welcome.