A Henry Kind Of Update

Wow, are you tired of reading about my panic disorder yet? Let’s switch gears, shall we?

We are coming up on one year of Henry’s Spina Bifida diagnosis.

 

Last year on November 7th, during our gender ultrasound, everything changed. We learned that our precious son had Spina Bifida, and despite being a writer, I cannot convey my devastation. Or my panic. My first reaction went from no no no no not doing it lol sorry to how am I going to deal with this? Paralyzed? Incontinent? Wheelchair? Shunt? Surgeries? The possibilities were infinite and completely overwhelming. Foremost in my mind was the certainty that because my son had a “birth defect,” our lives would be miserable and tinged with sadness from here on out.

 

So, are they? Are our lives sad and burdensome and full of suffering?

 

Judge for yourself:

 

As you can see, this poor child is miserable.

 

One of the things that terrified me before giving birth to Henry was that there was really no “face” of Spina Bifida. If you did a Google images search of Spina Bifida you would see a) aborted or stillborn fetuses, b) gruesome meningocele lesions, and c) pictures of John Cougar Mellencamp because apparently he has a very mild form of SB called occulta. You can see why this was such a confusing time for us. When we’d try to “research” Henry’s birth defect on Google, there were few families we could look to as an example, despite Spina Bifida being one of the most common birth defects in the world. I can’t find it now, for the life of me, but when I googled “spina bifida stories,” the first one I came across was a little girl who had actually died during her myelomeningocele closure as a newborn (something that is very, very rare). Needless to say, I was all:

 

So nearly a year later, I am happy to say that Spina Bifida has a new “face” for us, and hopefully for everyone we know. It’s a seriously cute face that is perpetually smiling, with super chubby cheeks and huge blue eyes. I don’t know where I keep getting these blue-eyed children because my family is Italian as hell, but I digress.
I struggle with telling people what Henry can and can’t do at this age, because I fear that they’ll think of it as some unbearable hardship. Henry has had two surgeries in his young life — one to close the opening in his back, and one to put a shunt in his head, in order to control his hydrocephalus. Although he can sit up mostly unassisted and meets pretty much every developmental milestone, for some reason he still has not been able to roll over on his stomach by himself. (His hips are at a weird angle, so it’s hard for him to maneuver himself onto his stomach. It’s one of our goals for physical therapy.) He’ll need surgery and casting to correct his (adorable) clubbed feet. I’m not sure when he’ll crawl. His prognosis for walking is good, but it’s not a given. We don’t know if he’ll walk with assisted technology or use a wheelchair. But he can definitely move his legs purposefully and he has feeling in his legs and feet, which is a far cry from what our doctor’s initially told us he would be able to do.
Aside from the doctor’s visits and learning how to navigate the healthcare industry, this kid is surprisingly low maintenance. Recently we learned (for a lot of complicated reasons) that we’re going to have to start intermittently catheterizing him throughout the day. What I expected to be super inconvenient and devastating and a huge pain in the ass was really more like

Meh, whatever.

Basically, from here on out, we have to stick a tube in his pee-hole four times a day, and it’s surprisingly not a big deal at all. Funny, because when I was pregnant with Henry, the thought of catheterizing a baby scared the shit out of me. I would think about it and get cold and sweaty and immediately overwhelmed. It was firmly in the category of “things I couldn’t do.” And guess what? I can do it. I’m still practicing, and sometimes I mess up, but it doesn’t hurt him. In fact, he actually seems to like it. Sicko.
I think even now I have what I’d call “able-ist” leanings. When people ask me how Henry is, I immediately say “he’s totally like a normal baby!” I try to distance him as much as I can from his perceived defect, because I just can’t stand the thought of someone thinking he is lesser-than or deficient in any way. I have to stop saying he’s “normal,” because he isn’t. He’s got a shunt and now he has to pee through a pee-tube. But I guess what I’m trying to say is that you wouldn’t know that just by looking at him. He has a disability, but he’s not miserable. Our family isn’t miserable. Managing his disability is sometimes a lot of work, and a lot of doctor’s visits, and a lot of phone calls to the doctor’s office to get referrals, and that’s a headache. But at worst, it’s a mild annoyance.
Believe me when I say we are blessed to have this child. He has made my life better in every conceivable way. And if I had to choose between having this child with Spina Bifida and not having him at all, I would go back and pick Spina Bifida again, and again, and again.
October is Spina Bifida Awareness month, and this is what I’d like to contribute: If there’s anything you need to be “aware” of, it’s that Spina Bifida can be hard. It can be grueling and annoying and complex. But it can also be full of joy and blessings.
 It’s not easy. But it is so, so worth it.
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It’s a Wonderful Life

Three years ago, I was fighting off panic attacks and an IBS flareup, stepping into my wedding dress, trying not to mess up my hair. It was gorgeous outside, and warm, and it smelled like summer. I had hydrangeas in my bouquet. I was getting married.

Despite my deer-in-headlights look, I was actually pretty excited.

Our wedding was the bomb, despite the anxious diarrhea and the uncontrollable, nervous sweating (TMI, but such is life with an anxiety disorder and PTSD. Did I use enough acronyms in that sentence? LOL WTF BBQ). The best part about our wedding was that Lou and I had been engaged for three years at that point, and as Catholics we had (somewhat reluctantly) agreed not to live together before marriage. Now was the culmination of three years of anticipation and we could finally finally finally FINALLY start living together (and, you know, like, live together, wink wink nudge nudge I’M TALKING ABOUT SEX SORRY FAMILY WHO READS THIS.) That day was exciting in so many ways. And also there was steak. Lots and lots of steak. And almost every member of our family. And our close friends. Dancing and eating steak. So maybe the best day ever?

(We had some pretty delicious chocolate cake, too. Just saying.)

Three years later, I’m nursing a sweet 3-month-old and my almost-two-year old is taking a nap. My life is so full and rich. Metaphorically rich. We’ve had at least $2k in car repairs in the past month and we’re still recovering from the month of unpaid leave that Lou took from work when Henry was born, and for the love of God, you guys, if you don’t have an emergency fund start one right this second because we would be so unbelievably screwed and in debt without one. But I digress. Apart from car repairs and NICU stays and other “character building” life events, our life together is really quite rich and full and happy.

I don’t write about Lou a lot on this blog. I’m hesitant to over-share — primarily because I think it would embarrass him, but also because our marriage is the most important thing to me in the world, and what we have is so unique and precious I’d probably ruin it with words. And try as I might, there’s no GIF to describe how wonderful of a match we are, or how happy he makes me, or how he helps me be a better person, in spite of myself. Nevermind, I found one:

We’ve started going to counseling together, every other week. Not because our marriage is in shambles or we can’t get along — on the contrary, we get along so well that he can make me laugh even when we’re fighting and I’m screaming at him in frustration — but because we need help working out some stuff that we can’t work out on our own. I can’t tell you everything. It’s really not even my story to tell. But I want to say publicly that I am so proud to be with someone who values his well-being and our marriage so much that he will voluntarily go to a counselor and do something that makes him incredibly uncomfortable — talk. About himself. To a stranger. And he does that for our sake. That is love.

Did you know when I was little — maybe nine or ten? — I wrote in my diary a list of qualities I wanted God to find for me in a husband. I wanted my future husband to know Jesus. I wanted him to love children. I wanted him to be hilarious and smart and loving and talented and crazy about yours truly, of course. Most of all I wanted him to encourage me, and just let me be who I am, warts and all, and see me at my worst and love me in spite of myself. And like every single other time in my life, I totally didn’t believe God would give me what I asked for as a child, in earnest. But He totally did. When we got married, in church, in front of the Eucharist, before hundreds of family members and friends, it was like God was saying, see how much I love you? I gave you all the things you asked for — and things you didn’t even know you wanted yet. And then, with our babies, it’s like our marriage is the gift that keeps on giving. I seriously sometimes want to say, okay, enough, God! This is too much! It is RIDICULOUS how blessed I am! What gives? 

Three years after I put on that super heavy, super tight dress (and subsequently had a panic attack about not being able to get it off in time if I wanted to pee), I’m legit living the life that I dreamed I would someday live. I have two beautiful babies. They are hilarious and cute and I get to stay at home and enjoy every second of them. I get to write in my spare time and just have a tiny little perfect life with my best friend and our kids. It doesn’t get any better.

My life is the bomb and I have Lou to thank for it. It doesn’t get any better than this.

Thank you for our wonderful life, Lucius James!

(“Sweetie, can I write about our anniversary and how we’re in counseling right now?”
“Not a problem at all. If you wanted to throw in something about my weiner, that’d be cool too.”)