As long as it’s healthy. But what if it’s not?

Six months into our pregnancy with Henry, after our spina bifida diagnosis, my husband and I would make regular treks up to Park Ridge to see the Maternal-Fetal Medicine specialist, who kept us abreast on how the baby was doing in-utero. Since I’m extroverted and I adore small talk, I started chatting up the receptionist as we were filling out some paperwork, post-appointment. At this point, we had already been told by two separate doctors that Henry would be totally paralyzed from the waist down.

We started talking about her kids — three girls! — and I asked her if she preferred girls, or if she might try for a boy. We both quickly agreed that the baby’s sex wasn’t really that important — boy or girl, they were blessings.

“Oh, I like girls, but it doesn’t matter to me!” she exclaimed. “You know, as long as they’re healthy and running around!”

I felt it and Lou felt it, simultaneously — that hot knife of grief in the belly. I think he actually winced. I laughed, bewildered, and said something like, “LOL I KNOW RIGHT? HAHAHA OTHERWISE IT WOULD BE AWFUL, WOULDN’T IT, IF THEY COULDN’T WALK???” and then slumped back to the waiting room with my paperwork.


Later, on the ride home, Lou bristled. “She works for a maternal-fetal specialist,” he grumbled. “What was she thinking? Healthy and running around? What the hell?”

That phrase has haunted me, ever since we found out that our child would be born with a birth defectAs long as it’s healthy! People chirp at you, when you talk about finding out the gender. Boy? Doesn’t matter! Girl? Who gives a shit! Nothing else matters but perfect health! And once you discover that your kid isn’t healthy, it almost feels like a threat.

Because what if it’s not healthy?

What then?

That phrase terrifies me. Because we’re talking about our children — an arrangement that’s supposed to be unconditional — and as long as they’re healthy! is alarmingly conditional. Everyone’s happy for a new baby and congratulations are in order — but only under certain criteria. Right? And if baby doesn’t meet that criteria, well, all bets are off. All the congratulations vanish. Your support system bottoms out from under you. People start whispering. Doctors start talking about going in another direction. Changing the course of the pregnancyDisrupting the pregnancy. Termination. Because, clearly, if your child isn’t picture-perfect, a SWIFT DEATH is preferable.

It’s not wrong to want a healthy baby, make no mistake. Nobody prefers a medically fragile baby. Nobody wants to see her child suffer. So we wish for health. We make ominous, defensive, vague statements. Everything will be okay — unless it’s not! 

Let’s retire that phrase. Shall we?

It’s time to stop putting health on a pedestal.

Is health important? Uh, yeah, duh. Is it the summit of our human experience? Is it the sole quality off of which we should determine the worth of our children? No.

We need to move past this fatalistic attitude we have that says a life with a disability is tragic and hopeless. We need to get over the idea that a handicapped baby is better off dead. We’ve had handicapped presidents, for God’s sake. We’ve had handicapped olympic medalists. One of the most sought-after motivational speakers on the planet has neither arms nor legs, and I’ll bet you a hundred bucks he’s smarter and more physically active than I amFor the love of God, one of the most poetic and well-written books in existence was written by a man who could only blink his left eye.

And when we say as long as it’s healthy!, we’re negating all the unlimited potential we have as human beings. We don’t need to be “healthy” to be heroic. And we shouldn’t need to be able-bodied to be considered human beings.

And when we say as long as it’s healthy!, we’re telling parents that our support as a society is conditional. Have a healthy baby, and you’re golden. Come back from your ultrasound with a special needs diagnosis, and we’ll need to start discussing your options.

Come on, society. We’re better than that.

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A Day in the Life of a Mom and a Wife

Look. If I have to read one more debate about stay-at-home mothers (SAHMs) and Working Mothers and who works harder and sacrifices more, I’m going to puke.

SAHMs work hard. Working Moms work hard. Everyone works hard in different ways. Why is THIS the conversation I keep seeing over and over again in the blogosphere. Can we move on now?

Even less do I like the self-congratulatory treacle I keep seeing on the Huffington Post and my Facebook news feed — letters from SAHMs to working moms, and vice versa, about how amazing the other one is, and how hard they workYou’re the best! No, YOU’RE the best! YOU work harder — no, YOU do! 

UGH. Like, who farted, right?

Can we quit blowing each other for a minute? How about we agree that moms are moms, and different methods of mothering have different advantages and disadvantages. Both have their unique challenges. Why do we need to quantify these challenges, and debate them, and dissect them endlessly? I don’t know about you, but I have a hard enough time getting them dressed and halfway presentable in time for preschool. I’m not going to concern myself with which mom is working harder, and who deserves more praise, and why.

Whether you work inside or outside the home, you deserve one of these. Every single day.

I stay at home with my two children, Henry (12 months), and June (2.5). I fully acknowledge that I’m very privileged to be able to do so. I will also fully acknowledge that it’s hard, and grueling, and sometimes I’m so desperate for grown-up conversation, I want to gnaw my own arm off so I can chat with the paramedics. It’s hard. It’s boring. Is it harder than going to the office and picking your kid up from daycare every day? I don’t know. I suspect not. And what does it matter?

I mean, that would be sweet, though. Don’t get me wrong.

So. I’m not going to sit here and try to make the case for being a SAHM or a Working Mom. All I can present to you are the facts. I’m a SAHM, and here is how I spend my day. You can judge for yourself. Or not. Here we go:

Who run the world? These people.

7:30 AM: Wake up, immediately catheterize Henry and change his diaper. Dose him with his medicine. Clean half of it off the floor when he spits it out in disgust.

7:40 AM: Change June’s diaper and put her in underwear. Change her underwear approximately four times because she can’t decide between Dora and Hello Kitty.

7:50 AM: Run around getting breakfast for both children. Usually a colorful array of berries, bananas, and dry cereal, which is then smeared into a collage on their clothes, floor, seat, and walls.

8:20 AM: Inhale some food and check e-mail until one of the children start throwing food on the floor, signifying that they are finished eating. Clean the children and strip them down so I can wash all the berries and crusty cereal out of their clothes and hair.

8:30 AM: End up completely bathing them in the kitchen sink. Throw all the berry-smeared clothes, the high chair covers, and the towels in the washing machine.

9:00 AM: “Oops, Mommy, I think I have to go –” Clean up puddle of piss on the floor. Clean up piss footprints leading into the bathroom. Clean up piss-soaked Dora The Explorer underwear that June threw in the sink, for some god damn reason. Bleach the sink. Wipe down the toddler’s piss-streaked legs and feet. Grab a random pair of underwear out of the diaper basket and ignore the shrieks of protest. NO MOMMY NO MOMMY I WANTED HELLO KITTY!!! HELLO KITTY MOMMY! DORA IS A BAD IDEA!!! Yeah, well, so was your conception, I want to fire back. Throw the piss undies in the washing machine.

I usually start praying fervently right about now.

9:25 AM: Henry crawls around on the floor and upends the recycling bin while I set up a “craft” for June. Our crafts include a) mixing snow and Ovaltine into a cup to make a milkshake, b) painting on paper with a mixture of water and food coloring, and c) gluing googly eyes on fuzzy pom-pom balls to make a “creature.” Those are the only three things she wants to do, on any given day, ever. Any one of these will entertain her for a full ten minutes, until she moves on to the next craft. Henry upends the recycling bin, open and shuts the kitchen cabinets, and scavenges for snacks on the floor. I forget what I’m doing at this point, between crafts. Probably sitting on the ground, staring off into space.

10:45 AM: Time to catheterize Henry again. Henry, in case you aren’t a regular reader, has some special needs, due to being born with Spina Bifida Myelomeningocele. The only special need of his that really affects us on a day-to-day basis is that he needs to be catheterized four times daily. Catheterization is really no big deal. Basically, we stick a pee-tube in his wiener and empty his urine into his diaper so he won’t have to overwork his bladder or something. I would link a YouTube video showing how it’s done, but I don’t want to get put on some list. Think of it as threading a needle: We stick a tube in, pee drains out, and then we take out the tube. Simple.

It’s like threading a needle. Except with pee spraying everywhere.

What’s not simple, however? Trying to navigate the pee-tube up his pee-hole while he’s twisting and turning to get away from me. So a procedure that should take about thirty seconds somehow turns into a five-minute wrestling match, Henry writhing on the floor and trying to crawl off into the other room somewhere, while I’m pinning his arms down with my legs and swearing quietly so June won’t hear. I give him my phone to play with so he holds still, and make a mental note to wipe the pee off of it later.

11 AM: Time for naps. Children won’t nap. This isn’t how it happens with my Sim family. Try to comfort them in vain:

Tell June for the hundreth time she can have cereal after she takes a good nap — because God forbid she’d have to wait more than an hour between eating. Comfort her when she cries I NEED CEREAL I’M SO HOOONNNGRY like she lives in a Sudanese refugee camp. Take her out of the room and change her diaper so Henry won’t have to hear her yelling about being hungry. Hold June down with your arms and legs and forcibly strap a diaper on her, ignoring her cries of I DONT YIKE DIAPERS, I NEED DORA UNDIES.  Drag June back into the nursery and dump her on the bed. Pat Henry on the head absentmindedly while he tries to writhe his way out of his swaddling blanket. Praise Jesus and all the angels and saints when they both stop crying and drift off to sleep. Eventually.

11:30 AM – 1:30 PM: Go downstairs. Half-heartedly fold a basket of laundry and leave the clean clothes sitting in the basket for the next six days. Shove some granola in your mouth as a snack. Join the children in their room and sleep like the dead.

2:00 PM: Henry wakes up. Time to cath him again. Tell Henry to stop being such a douchebag and hold still; make a mental note to go to confession.

2:05 PM: June wakes up. Change her back into Dora underwear.

2:06 PM: Prepare lunch.

2:08 PM: “Mommy, I smell poop! It’s coming from my butt!” Clean up poop smears on the floor. Empty out June’s poop-filled underwear. Gather the poop-streaked toilet paper (“I wiped myself, mommy!”) and dump it into the toilet. Bleach everything. Wash hands. Multiple times.

2:30 – 4:00 PM: Feel incredibly, insanely guilty that you’ve spent all day running around laying out crafts for June and changing her underwear while Henry has been digging through the recycling and eating cereal off the floor. Play on the floor with Henry. Revel in how beautiful and intelligent he is. Read stories to him. Lovingly pry his hands from your head when he wants to pull your hair. Alternate between paying Henry attention and paying June attention, as they are both competing fiercely for it.

4:00 PM: Put on Daniel Tiger’s Neighborhood and let both kids watch like six episodes. Lay on the floor and pretend to do yoga but really take a mom-nap.

4:30 PM: Remember you forgot to defrost something for dinner. Crap.

4:31 PM: What can I make for dinner? Text Lou: can we order pizza for the third time this week? No? Allrighty then.

4:32 PM: BAKED POTATOES. I AM GENIUS.

4:33 PM: Throw a few baked potatoes in the oven and set it to 400 degrees. Bam. Dinner served.

4:35 PM: Run around cleaning up clutter, sweeping, wiping down counters, shoving more berry-smeared clothes in the washing machine, and throwing sippy cups in the dishwasher so the house is some semblance of clean before Lou walks in the door.

5:30 PM: Take the kids on a walk around the neighborhood. Yell exercise time, exercise time! Yay! Mmm — smell that fresh air?! Ignore how the kids are clamoring to get back inside the house. Walk two blocks and then come back.

5:45 PM: Shove the children into Daddy’s arms the minute he comes through the door. Collapse on the couch and tell all of them you’re going to check some VERY IMPORTANT E-MAILS and demand that they not disturb you, as you are VERY BUSY and IMPORTANT. Proceed to check Facebook while ignoring their cries for dinner.

6:00 PM: Realize you’ve burned the baked potatoes. Order pizza.

7:00 PM: Serve pizza to starving children. Strip off their sauce-laden clothes and throw them in the washer on top of their berry-and-cereal-smeared clothes. Catheterize Henry. Rinse June off in the sink. Diaper them both. Clothe them both. Carry them up into our bed, where they both insist on sleeping, and dump them there. Tuck them in lovingly and then run the hell out of there before they can protest.

7:30 PM: Collapse on the couch. Watch maybe one episode of The Wire before starting to fall asleep. Go back up to your room and watch your children sleep quietly. Stroke their hair and kiss their eyelids. Thank God for these precious gifts. Resolve to do better tomorrow. Resolve to be the mom they deserve.

7:35 PM: Polish up your resume. You know, just in case.