Dear Governer Rauner, 

I’m writing to you as a person who rarely gets politically involved. Regretfully, I didn’t vote in Illinois’ last election cycle. I thought politics didn’t really affect me personally. I was wrong.

Yesterday I got the news that our Early Intervention coordinators were closing their doors for good. Unbeknownst to me, the agency has not been paid since June. They no longer have money for payroll or to keep the office open. And as a result, we are losing services for our two-year-old son. I had heard peripherally that the Early Intervention program was “in trouble,” but naively I assumed it would all get worked out somehow. Unfortunately — it hasn’t. The Illinois’ legislature’s failure to reach an agreement about the budget has started to negatively impact my family. And I need to speak candidly with you about this, in the hopes that you can help us.

Our family, who benefits from EI services every single day. Ignore what my husband is doing.

When I was pregnant with my son, Henry, we learned that he would be born with a severe birth defect called spina bifida. What this means is that Henry’s spine refused to form properly in utero, and as a result, he lives with a host of medical conditions that affect his day-to-day life. Kids with spina bifida can have significant delays and permanent paralysis.

Henry is fortunate in that he has some mobility (he uses a walker to get around) and has above-average intelligence. He’s a smart little dude. But even with Henry being relatively high functioning, EI has been a lifesaver for us. I can only imagine how much more necessary it would be for other families.

Two years ago, when I brought Henry home from the NICU, a terrified new parent, it was our Early Intervention coordinator that stepped in to save the day. Lisa, our coordinator, came to our house and sat with me at the kitchen table, patiently explaining to me how we could help him catch up to other kids with Early Intervention. She explained to me that we could get speech, developmental therapy, occupational therapy, and physical therapy for Henry, at minimal cost to us. Lisa helped me navigate a really daunting and complex system — our health insurance — with ease. Lisa got Henry his first walker. While I was busy taking Henry to his doctor appointments and adjusting to life with a special-needs newborn, Lisa was able to coordinate physical and developmental therapies for Henry through EI.

Believe me when I say that I could have done zero percent of this without Lisa’s help. Hell, I had to google for fifteen minutes before I even found the link on your website to send you this e-mail. Lisa, and Early Intervention, by extension, has made it possible for me to raise a child with special needs. Early Intervention made it possible, yesterday, for Henry to wheel up to another kid in the library with confidence and ask him if he wanted to play. They are directly responsible for so many of his successes.

I realize that you want to limit the availability of EI and not cut it altogether. You want to preserve EI for the “most vulnerable” children by reserving it for children who have a fifty percent or greater delay. Even with these restrictions, Henry could probably still qualify for EI by virtue of his diagnosis. But please believe me when I say that cutting eligibility at all, for any child, is an enormous mistake. For so many families, a diagnosis is evasive. And to have a fifty percent delay, in most areas, is major: Only now, for instance, at two years old, does Henry have a gross motor delay of fifty percent. He is able to crawl by himself and stand with assistance (something a typical kid would have been able to do a year ago). Had he waited to get services until he reached a fifty percent delay, it would have done nothing — he ages out of the program in February. The research shows that it’s so much more effective to combat delays as early as possible, before it gets significant.

In your campaign, you stated that you wanted to make abortion a rarity. Please realize that by cutting Early Intervention, or by failing to re-instate it, you will make abortion more prevalent, not less. Because I blog and write about our son’s disability, I often get e-mails from other moms with daunting diagnoses, terrified and considering abortion. But because of programs like Early Intervention, I’m able to reassure them that their special needs child will get the medical assistance and the support he needs once he is born. I don’t have that reassurance any longer. By slashing EI, you are making it harder for mothers in Illinois to carry their children to term, knowing that there is no safety net to fall into once their children are born. You are making it easy for abortion supporters to say, “See? Republicans only care about babies before they’re born.” And you’re making it hard for me to disagree with them.

I am naturally a very cynical person. I am apolitical. In the past, I haven’t had much faith at all in the political system, and I’m asking you, as your constituent, to help me restore that faith. Please re-instate EI and approve the budget for it in full. Please find a way to “bring back Illinois” that doesn’t directly impact families of special-needs kids who are already struggling. Reinstate EI, and help special needs families find a reason to vote for you again.

Wifeytini

Crying is stupid. The last time I cried in public was in high school, in eleventh grade. I loved high school because I adored theatre and speech team and all of my English classes, but math and science were my bane, and especially math. I constantly felt like I was secretly retarded and every one of my friends — overachievers who took advanced calculus and physics and shit — were just too nice to tell me. While my friends took AP Calc tests and got “tapped” for the National Honors Society, I was in remedial Algebra I, struggling to graph a line.

The only thing that I hated more than math class was the fact that I just always failed math. English I could always BS my way out of — there are no wrong answers in English, and maybe that’s why I loved it so much — I could always kind of finagle my way into a “right” answer. But not in math. In Algebra, there are right answers, and there are super-wrong-holy-shit-where-did-you-come-up-with-that-answer kind of answers, and I consistently got the latter. It was always one super small thing, too: A misplaced decimal. A negative sign instead of a positive. One minor detail that destroyed the entire equation. It was always some tiny misstep that I just couldn’t get a handle on. And it infuriated me.

This one particular test, I was determined not to fail. I don’t even remember specifically what the test was about (something about the x-axis and the y-axis, though) but I remember feeling fed. up. with failing. Like, not this time, Satan. I was smart. I was going to ace this. Or at least get a “B.”

The day of the test, we had a pop quiz in another class, Political Science. The teacher split us up into three or four smaller groups and then had us pick a representative from each group to stand at the dry-erase board and answer questions on behalf of the group. Whichever group won would get a buttload of extra credit. I have no godly idea why, but during Political Science that day the clouds parted, Jesus came down, and the teacher announced that the subject of our quiz was not political science, in fact, but 1980s pop culture.

MY DAY HAS COME

So I’m all, stand down bitches. I got this. And my hand to God, I marched up to the dry-erase board and won the entire game for my team single-handedly. Alf. Perfect Strangers. Mork and Mindy. There wasn’t one damn answer I didn’t know. And I felt like a God.

And then I went to fourth period and bombed my Algebra test. The test I had studied two weeks for.

Walking back from class after the test, I ran into my best friend, Joe, and before he could even say Hey Watts, I threw myself on him and sobbed into his shirt, just a spigot of snot and hot, humiliated tears. I’m inconsolable. I’m a puddle. I’m Julianne Moore in every Julianne Moore movie that’s ever existed. Poor Joe probably thought somebody died (if you’re reading this — sorry, buddy). After I stopped blubbering long enough to tell him what had happened, he, utterly confused, was like, Oh. Dude, it’s fine. But it wasn’t fine. I could see now — the difference between the person I wanted to be and the person I actually was. I wanted to be a braniac, like every single one of my braniac friends. I wanted to effortlessly glide through AP Calc and get “tapped” into the National Honor Society — and when you’re seventeen years old, you’re still young enough to think that if you just want to become that person bad enough, then you just magically will be. And I wasn’t. I wasn’t. I just wasn’t.

I don’t know why I’m telling you all this. I’ve been thinking about this lately — the kind of person I want to be, the person I am, and the person I’m slowly becoming.

Man this sounds angsty and navel-gazy, but whatevs: Growing up I wrote all the time, lots of fiction, because I wanted to be Stephen King. I didn’t just want to sound like Stephen King, or have cool ideas and make millions of dollars like Stephen King — I legit wanted to HAVE HIS BRAIN AS MY OWN. I wanted to dig through his garbage and smell his sheets (Not really, because ew, but I was for real obsessed with him and everything he wrote). As far as I was concerned, Stephen King was a rock star, and I modeled everything I wrote after his writing. It was all creepy, gothic, paranormal, profanity-laced. I loved him. And I would write these literal novels, upwards of fifty thousand words, at the age of twelve, and then cry and cry because what my voice sounded like on paper was nowhere near what Stephen King’s voice sounded like. I wanted to sound like a thirty-year-old male fiction writer and I was so incredibly angry and devastated that I didn’t.

I’ve taken some time off this blog, unexpectedly. Partially because life with two kids is hectic, and I’m on the phone every single day with a doctor, a therapist, or an insurance person, trying to get Henry the best possible care. But I’ve also not been writing as much because I’ve been writing elsewhere.

In January, I decided to start freelancing full-time (or, about as “full time” as you can get with two young children). And in the six short months I’ve been doing this — pitching articles, sending out letters of interest — I can’t even believe what I’ve been able to do. In February, I published an essay in the Washington Post. In April, The Atlantic. In May, the Daily Beast. And the most recent clip? The mother. fuggin. New. York. Times.

I share this because I feel like I’m slowly becoming that person, that person I always wanted to be, the person who has that “writerly” voice I always wanted to have. I’m starting to develop a writing style that’s distinct and totally my own and I’m starting to have that authorial voice I’ve lusted after since I was nine. The person I’ve always wanted to become, and the person I am becoming, is starting to merge together. Like, those writers I’ve always admired? I’m becoming that. It’s wonderful. And exhilerating. And fun.

So I can’t promise I’m going to write here more often, although between deadlines and phone calls and screaming toddlers, I definitely am going to try. But I wanted to share how positively scared and excited and euphoric I am to be easing into that person I’ve always wanted to become, and to like who I’m becoming. I’m not Stephen King — not even close. And I still can’t graph a line to save my life. But I’m going to keep writing, and learning, because that’s who I am: A writer. I am. I am. I just am.

I figured out a couple months ago that the combination of having two babies in two years, eating a shit-ton of candy every day, and spending all of your free time on the Internet searching for reality TV gifs has resulted in about forty extra pounds of fat that’s just sitting on my midsection. It’s bad, guys. It’s really bad.

But … like … I found this hilarious, inexplicable gif and I can’t stop laughing. So totally worth it, right?

As of today, I weigh three pounds MORE than I did when I was nine months pregnant with June. Ouch.

Apparently you’re supposed to lose all your baby weight between pregnancies, but because I’m an unbelievable dumbass, I did the exact opposite. When June was about a year old, I looked at my enormous, stretchmark-laden thighs and my belly pooch and thought, hmm. Should I start an exercise routine and lose the extra weight? Or should I just have another baby, eat a bunch of candy, and fill out the pooch?

I chose the baby. Seriously. That was my actual train of thought at the time. I thought, well, since I already look four months pregnant, I may as well just be pregnant. Right?!

It made a lot more sense back then.

Anyway, I’m kicking myself for it now. Not the baby, obviously, because I was always meant to have him, exactly when I did. But I do wish I had tried — even half-assedly — to lose something. Even if I had done a plank. Just ONE plank. ONE PILATE, singular. Maybe if I had tried just a little bit, I wouldn’t be forty pounds overweight. But I didn’t, and I am, so here we are.

Me, refusing to exercise. I’m that enormous fat monster in the middle, in case you didn’t catch the symbolism.

So for the first time in my entire life, I’m actually trying to lose weight. And it sucks. It hurts so bad. I have to give up delicious candy and limit my meat intake and occasionally run even though nobody’s chasing me, and exactly WHAT is the point of living again?! Indeed, the only thing worse than not being able to eat candy is feeling like a fat little troll who looks six months pregnant and can’t fit into her XL yoga pants. When even your maternity jeans are too small for you, it really makes you rethink that third Snickers bar. Most of the time.

(The sushi cravings are ubiquitous, though. I don’t know that I could ever stop craving delicious, fatty tuna smothered in wasabi mayonaise. The other night I just went through Pinterest and “liked” a bunch of pictures of godzilla rolls that people had posted. You know. Just sittin’ around, liking pictures of sushi on a Friday night. Like people do.)

This RIGHT HERE. This right here is all I aspire to have in life. Side note, I found this on Google Images with the title “Godzilla Sushi Challenge.” Challenge? More like an APPETIZER. Bitch, please.

Side note: I really have to get off Pinterest before I wreck this “diet” thing.

So here’s what I’m doing to try and lose this “baby weight” (more accurately it’s “sushi weight”, but let’s just pretend like I have a little self-respect and pretend it was from the children):

1) Running. This is the most painful part of all. I love doing nothing. I lead what you call a “sedentary lifestyle.” I would so much rather sit on the couch and scroll through my tumblr account looking for gifs than hit the gym. In fact, for the past few months, since I’ve been trying to raise awareness for spina bifida in addition to getting more widely published, most of my time has been spent at the computer trying to accomplish both of these goals (in addition to copy-writing on occasion to earn some extra cash). Unfortunately, in order to lose weight I actually need to get off the couch and move faster than a snail’s pace. So I’m doing intervals of jogging/fast walking 2-3 times a week for 45 minutes each. Which is about as fun as you might think.

Sigh. Not anymore.

The upside to exercising (I hear), is that eventually you get “addicted” to the endorphins you get from exercise. Hoping that’ll kick in any day now.

2) Eating green shit instead of bread. All I have to say is THANK GOD for green smoothies, because eating 3-4 servings of green veggies a day is surprisingly hard. But thanks to green smoothies, I’m actually doing it! Here’s my favorite recipe. (And yeah, it has orange juice in it, which is loaded with sugar. But look at all the veggies I’m eating!):

One handful of frozen broccoli

1-2 handfuls of chopped fresh spinach

1-2 tablespoons of chia seeds

1/2 cup of frozen peaches/pineapples

1 chunk of fresh ginger

some avocado, if I’m feeling adventurous

half a bannana, if I need a sweet treat

orange juice

It’s unbelievably delicious, y’all. I don’t have one every day, but when I’m in a rush and I need green vegetables, it’s a total lifesaver. Try it.

3) Drinking so much water I might explode.

I do love a good can of soda. And none of that “diet” crap that tastes like drinking cardboard — what’s the point? Right now I’m drinking a few liters a day, or trying to. I’m not sure what a liter is, exactly. Let’s just say I’m peeing every thirty minutes. But my skin looks really, REALLY clear! Yeah, water!

4) NOT weighing myself obsessively every few hours. I’ll be honest — I’m the kind of person who wants immediate, drastic results. Otherwise, I get bored and discouraged. And hangry. Imagine my surprise when I stepped on the scale after day 1 of my diet and discovered that I had gained a pound. I looked at the scale and was like

Come to find out, you actually weigh more at night than you do in the morning. Who knew?! (Apparently everyone, but hey, I’ve never actually dieted or weighed myself with regularity before.) So when I weighed myself in the morning, I felt inspired (“Woo hoo, I dropped two pounds!”). And when I weighed myself at night, hoping for some fast results, I’d be devastated (“WHAT?! I gained it all BACK? I HATE MY LIFE. WHERE’S MY CANDY???”)

There’s a reason that Weight Watchers participants only weigh themselves once a week. So it looks like I’ll be following suit.

Right now I weigh (gulp) about 160. My goal weight is 125. Wish me luck!

Spina bifida can be scary. There’s no doubt about that.

When we got Henry’s diagnosis, we were both utterly terrified. I don’t think there are any words to describe the terror, other than the sinking, falling feeling you get on the first big drop of a rollercoaster. Nope, no, no, stop, I want to get off, you think. It’s too much, it’s too scary. I can’t do this.

The doctor’s words fell on us like cinderblocks: Neural tube defect. Hydrocephalus. Enlarged lateral ventricles. Myelomeningocele lesion. Severe case. Bilateral clubbed feet. And after he was done, I kept asking the same question, over and over in various ways, wanting to ease the fright: But what does that look like?

Henry’s diagnosis was very accurate. The terminology was very medical. The problem was, it wasn’t very descriptive — at least not to two terrified parents who hadn’t been to medical school. Words like “neural tube defect” didn’t tell us anything. We had no idea what lateral ventricles were or what it meant for them to be enlarged. We could piece together what hydrocephalus meant, but it told us nothing about our baby’s quality of life.

“But what does this look like?” I kept asking. “What does this mean?”

Could he grow out of this?

Would he be in a wheelchair?

Would he walk?

Would be be deaf? Blind? Paralyzed? Mentally retarded? Would he live? Die?

These are all things we ached to know. And of course, it was impossible for them to tell us. There is such a wide variation of ability in kids with spina bifida, that it’s simply not possible for them to look at Henry on the ultrasound screen and say “Yup, he’ll definitely walk.” or “Yup, he’ll definitely be paralyzed.” (Although they did tell us, with certainty, that he would be paralyzed. And they were wrong.)

As we left the doctor’s office, the nurse pulled me in for a big hug, bless her heart. She whispered in my ear, “Do not look on Google Images. Google Images is not your friend.”

Lo and behold, she was right. Later that afternoon, after I came home, fell into a zombified sleep, and cried all afternoon, I finally got the courage to google “spina bifida”, with one hand held cautiously over the screen, shielding myself from anything upsetting. And it was quite upsetting. All of the images I saw were aborted babies, open myelo lesions, and pictures of John Cougar Mellencamp (apparently he has a “mild” form). I shut the computer off, too terrified to look any further.

Well THAT’s comforting….

It was scary. as. fuck. By the way, I am completely, unmovedly opposed to abortion, but I can absolutely see why it would seem like such a healing balm. The fear is all-encompassing. And termination can take all that fear away. I get it. I do. (The only reason I even bring it up in this post, thereby “politicizing” it, unfortunately, is because the diagnosis and an offer to terminate goes hand in hand. Ask any mom — it does. It was part of our experience, it’s part of nearly everyone’s who was given this diagnosis. And it does make me sad to see that people have aborted their children out of fear of this disability — because although it sounds terrifying, it really is not that much different than raising a “typical” child. More doctors appointments, certainly. More surgeries. But It’s not miserable. It’s certainly not a fate worse than death. And while I don’t shame or look down on people who have chosen termination, it does make me sad to think what they missed out on. Somewhere around 60 percent of spina bifida pregnancies are terminated, and I do want to bring that number down, in the most respectful way possible.)

A few days later, I summoned up enough courage for another Google search. This time, I stayed away from the images page. I saw a baby hooked up to wires in the NICU and I lost it — briefly. When I recovered, I started looking for blogs.

And what I found changed my life.

The kids on these blogs? They were beautiful. They were happy. They had a light in their eyes just like “normal” children did, even if they had braces on their legs or shunts in their heads.There was a lot on these blogs I didn’t understand — lesion levels, different terminology (like L4-L5, AFOs, KAFOs, etc) — but it was obvious from these pictures that the medical terminology that the doctors used had not given us the whole picture of what spina bifida was. They weren’t just a laundry list of diagnoses, they were precious children.

A picture is worth a thousand words, indeed! This photo is courtesy of a blog called Catholic Cafe Con Leche, the very first spina bifida blog I found, whose pictures floored me. What a happy kid! What a beautiful family! Was THIS what SB really looked like? Well…allrighty then….

I’m eternally grateful to the parents who shared pictures of their beautiful children with me, ultimately giving me the courage I needed to welcome Henry into our family. I truly believe that showing, not telling, people about spina bifida is what’s going to make the difference as far as education and awareness.

And that’s exactly what I want to do at Wifeytini this month.

On my facebook page, 200 people have already shared their children’s pictures with me as part of our #embracethebif campaign. Just a few days ago, I started an album called “Embrace the Bif!” so that parents could show other people “this is what spina bifida REALLY looks like!” And the response has been overwhelming. And so, so heartening.

Every time I type “THIS is what spina bifida looks like!” I feel like karate-chopping the air in victory. I feel like I’m traveling back in time and calming down the terrified, nauseated version of myself who dreaded raising a disabled child. Spina bifida is so much more joyful and happy than our doctors initially led us to believe, so much more than what we first saw on Google images. If even one prospective parent can see this album and have that fear quieted just a little, then I will consider #embracethebif to be a resounding success.

Just to clarify, our campaign is not a “pro-life” campaign. Anyone is welcome to participate, regardless of their stance on the issue. Our mission is education and hope — not shaming and condemnation for anyone who has made a different choice. So, while #embracethebif is not a “pro-life” campaign, I do think awareness is a “pro-life” issue: If you want to eradicate the negative stereotypes and the fear surrounding this diagnosis, making it ultimately easier for parents to welcome disabled children into their homes, disability education is so important. Spina bifida is not the devastating diagnosis that many doctors make it out to be. It is not a miserable, horrible, existence that’s filled with suffering. It’s happy, crazy, sometimes hard, sometimes wonderful, joyful, purposeful, active, fun. It’s dancing around to a Taylor Swift song with your siblings. It’s something I wouldn’t trade for the world.

And here was mine and Henry’s contribution. Because obviously!

Erase the fear, embrace the bif. Like, share, tweet. This is how we change hearts and minds. This is what we’ll be doing for October.

Join us.