Claire Bear: an update

It’s been a while since I updated all of Claire Bear’s fans on how she’s doing these days. Most readers know that she has spina bifida, that she had surgery just days after birth, and that we’ve been sort of waiting to see how much her spinal defect will affect her.

The short answer is: she’s doing great. She’s a chilled out, happy girl who is a bit of a ham. She can charm any stranger with her bright eyes, big smile, and penchant for waving, giggling, and clapping. She is also a very observant little person, and seems to constantly be watching and figuring the world out. Even though she’s not into eating solid food yet, she loves to swipe pieces of it off her sister’s high chair tray, and before she got moved into the older room at daycare, would sit on the mat and swipe toys from smaller babies as they crawled by. She even figured out, on her own, from observing Etta, how to get from sitting unsupported down to her belly so she can roll around to wherever she wants to go. Where I used to be able to count on finding her wherever I left her, now she’s known to roll out of her room and down the hall. They even call her “the mechanic” at daycare, because she likes to roll under all the cribs and appears to be inspecting and fixing them.

Medically, she is doing really well also. She had a looooong day at the spina bifida clinic yesterday, and we saw rehab, urology, and orthopedics. Ortho continues to be impressed with how much function and sensation she appears to have in her legs considering the location and severity of her spinal defect, and the good news from urology is that we don’t have to start using catheters or anything at this point (bladder issues are very very commonly associated with spina bifida). Rehab, formerly a sore spot for us since one doc declared “she will never walk” after a very poor examination even after we said that she supports her weight on her legs for short periods, went OK too. We actually got to show the doctor how she can stand with support, and we got our first prescription for some AFOs, essentially her first pair of leg braces, which we hope will support her ankles and knees and help her learn to crawl, stand, and walk.

She’s been going to physical therapy for a couple of weeks now, and we are so happy to finally have that started. The therapist turns out to be the older sister of a friend from high school, and I have to say I just love her. Despite a very teary first session in which Claire *wailed* the entire time (her stranger anxiety has really ramped up lately– she also recently wailed at ZaZa’s, a local pizza joint, when the most grandmotherly, sweet-looking woman in the world dared to approach her), Claire has realized her PT is pretty cool and has neat toys, and now only cries when tired or frustrated with an activity.

Because Claire needs 3 PT sessions per week, 3 OT sessions per week, and now we’re talking about adding in speech therapy to help with her oral issues, we are working on getting her into a developmental preschool where she could receive all these therapies on site. With another one year old to wrangle, coordinate care for, and generally deal with, taking her to and attending that many sessions per week myself would really just be a logistical nightmare, and we’re so thankful this is even an option, that I could drop her off and know she was getting care from folks who don’t have a single issue accommodating her needs. Much as we LOVE LOVE LOVE our current daycare, the fact that she’s the only kid in her room who can’t feed herself or take a sippy cup is a bit of an issue. Even better, the preschool takes siblings, too, so if I get a job in the fall, Etta could join her. And the best news of all? Claire’s Medicaid TEFRA, a benefit she qualifies for because of her disability, for which we pay an income based premium, which covers basically all of her care not covered by the insurance we get through my husband’s work, would completely cover the cost of the preschool for Claire. AMAZING!

So, now I’m on the hunt for cute shoes that fit over AFOs (I’m thinking a sweet pair of mint green Vans might be my choice), and just generally excited that our sweet girl is finally getting the help she needs to make some progress in the mobility department. She’s starting to realize that Etta can do things she can’t, and it has her raring to go!

 

Etta and Claire’s First Fiesta

Well, it’s official. My baby girls are now leaving the baby stage behind and headed toward toddlerhood, as they are ONE! I’d be sad about how quickly time has passed, and continues to pass, but they are mostly so much fun right now that who can be sad about that? They’re exploring and learning and growing and really coming into themselves personality wise. They interact with each other more than ever, and their relationship is so cool to watch. Etta will be walking any day now, and we hope Claire will be catching up soon, as she’s getting started with PT and OT (I promise a complete Claire update soon). Basically: having one year old twins is just crazy and busy and cool, and I don’t have time to be too wistful.

We celebrated the first year of their lives, and the fact that we survived it, with a fiesta full of people we love and who love us. My fashionista sister not only came all the way from Nashville with her new FIANCE and two pugs in tow, but she also took lots of pictures with her big fancy camera. So, now you get to share in what was a truly lovely day, despite gray, drizzly skies that forced what was supposed to be a back yard party indoors. Not that location matters much when you have a margarita machine, you know?

nothin’ says lovin’ like something from a jar

It’s hard to believe the Bufflo Gals have gone from this:

To this:

And as they’ve grown, things have changed with the way we feed them around here. Some things have worked great, others haven’t worked out.

I really wanted to make my own baby food.

And then I met my babies. One wants nothing to do with being spoon fed (as I mentioned in an earlier post) and the other vomits the minute she tastes my homemade food. Not just spits it out. Vomits.

At first, I was sort of offended by this. I thought I had a picky baby, since she would happily gobble down jars of purees both veggie and fruit, and then immediately gag and choke on my homemade stuff that, to my eye, seemed exactly the same as the stuff in a jar. In fact, I remained irritated and offended by this for a few months.

And then I finally googled “spina bifida texture issues” and learned that this is common to many babies with spina bifida, and often requires occupational therapy to fix. And then I felt like a jerk.

We’re looking into our OT and PT options and will be getting a referral soon, but in the meantime, I have accepted that homemade baby food is just not our thing. I can make a few very thin varieties that she will eat (like tomato carrot!), but, since straining every puree through a fine mesh strainer is a huge hassle, I will just be buying jarred purees for Claire. There’s a huge variety of organic Earth’s Best foods available, so that’s mostly what we’re going with. I even got over my aversion to pureed meat, because if she’s gonna be on these things for longer than average, I want to let her have some proteins, and the only other option is lentil dinner.

Meanwhile, Etta is doing a sort of half-assed version of Baby Led Weaning. I haven’t read the books, but I’ve read about it on the internet, and, like most of the rest of my parenting, am sort of doing what feels right. She gets soft chunks of things cut into pieces she can hold in her fist. Sweet potato, pasta, carrot, watermelon, cantaloupe, cheese, and toast are all favorites. It’s going pretty well.

Etta loves eggs. Or did. Until she had an allergic reaction this morning. No more eggs for a while.

Next step: transitioning from formula to milk in about a month, and also trying to transition from bottles to sippy cups. Anyone have tips on that? Both of my girls still have issues with fast-flow nipples, and they nearly drown in sippy cups.

She’ll gnaw it, but she won’t drink from it.

she will know that i am mother

I’m in my next to last week of classes for my MA program. I’m in the middle of a bunch of academic writing on books like Beloved, Ceremony, and Salvage the Bones, all of which explores the power and ferocity of woman- and mother-hood.

I’m also quietly in the trenches, dealing with a sick baby who’s been running a high fever and barfing so much she had three baths in one day yesterday. It’s a funny thing, the juxtaposition of all of my intellectual thinking about motherhood as some sort of abstract force against the raw power of literal motherhood as this thing that I do, this person I am as I hold a tiny person and just go ahead and let her finish vomiting all over me, just sit there and let it happen, because I know she’s not done yet and attempting to move, or get out of the path of the flow will just exacerbate the mess.

The last lines of Salvage the Bones (which, I swear, this isn’t a spoiler) are “She will know that I have kept watch, that I have fought…She will know that I am a mother.” In this case, I am the she. I am the one who knows. And I am the one who is. In caring for my sick baby, just as I have already many times before in my 8 month stint, just as I will many times to come, I just become unblinkingly confronted with this new fact of my existence. I am a mother. I am the heart that beats the rhythm of comfort under the skin and bones upon which rests the fevered cheek of the one who is flesh of my flesh. What a strange and wonderful privilege it is to provide that resting place. To encircle that tiny, weary person with my arms. To know that I am her mother.

Reading Salvage the Bones with Claire resting in my lap. Etta was napping in the bouncer that I rocked with my feet. It’s how this mother gets her schoolwork done.

the wonder of opening up

Me and one of my sick, sweet babies. Still smiling!

The other day, I wrote a really honest post about the exhausting hardness that is being a parent to two small children and trying to do just about anything else. I was feeling incompetent at life, and because I’m a writer, because literally that is who I am, because even the code of my DNA probably spells words, the way I worked out those feelings was to write them. And cry.

And then something amazing happened: that post got (as of this writing) 21 amazing comments. And on Facebook, where I also shared it, I got 12 other amazing comments, plus a couple of supportive private messages. And the support continued on Twitter. And this morning, a lovely friend took the time to send me an email that warmed my heart and brought tears to my eyes. While one commenter called me a downer, every single other woman who commented did two things: they affirmed that my feelings were normal and OK, and they assured me, things do get better. Time passes. Nothing stays the same. It was an amazing experience of the best of the internet and its power to bring us together and let us know we are not alone. I am beyond grateful. Today, even though I’m home, still in my pjs at 3 pm with two sick babies who have croup and are just beyond pitiful, my heart is lighter. And I feel strong and confident.

Buoyed by this love and more than a little indignant at the downer comment, I posted this on Facebook:

And while I’m actually kind of proud of that line and think it really says it all, I’ve been doing a lot of thinking about what it means to be a woman, a mother, and a writer, and what it means to put my heart out into the world through my words, and I’ve found (shock me shock me) that I still have some more to say.

Despite a comment that would minimize and silence my giving voice to my experiences with the more painful side of motherhood, I will not be minimized and silenced. Tellingly, that comment, the only one that wasn’t encouraging in some way, came from a man. I’m taking a course on women writers this term, and over and over in the works I’ve studied, women writers depict women writers with men in their lives who don’t understand why they can’t just be content, grateful even, with their lives as wives and mothers. Why they feel a yearning for more, why they simply must write. Any woman who, like me, attempts to express anything but sweetness and light concerning motherhood feels the need to qualify it with caveats about how much they really do love their children, husbands, and homes, for fear of being criticized by a society that constantly tells us to be grateful and enjoy every moment.

All that does is leave you feeling guilty when you inevitably fail to live up to that standard.

Based on the love that was poured out to me when I poured out my heart, I have to say: it is worth that risk. Because when you pour out your heart, you invite others to do the same, and they will, and you will feel less alone. The great Flannery O’Connor wrote in one of her letters: ”In the face of anyone’s experience, someone like myself who has had almost no experience, must be humble.” We don’t get to tell other people how to understand, frame, or feel about their experience. But we can let them know that they’re not alone in having it.

I’m so thankful to all the folks who let me know that I’m not alone this week or in this life. You have been a model for how I hope to respond the next time the shoe is on the other foot and someone opens themselves up.

incompetence

“Mine are three. It doesn’t get any better.”

That’s what she said to me as I wheeled my two baby girls into daycare this morning. “I’m sure they keep you busy. Mine are three. It doesn’t get any better.”

Well, I guess there’s no “It gets better” project for twin moms.

Which sucks, because for the last few days I just feel like life is hard. I feel incompetent. Like, not only can’t I do it all, but I can’t even do the little bit that I want to do. The little bit that I thought was achievable.

All I want to be when I grow up is an English professor. I’m beginning to think it will never happen. I’m beginning to think I won’t even get my freakin’ masters, let alone a PhD, because it’s all I can do to take two classes per term and stay on top of my coursework. A full load for most people is three courses, but two seriously puts me at my limit. And don’t even get me started on studying for my comps exam, which I’m supposed to be doing somehow on top of and outside of my course work. I truly cannot find the time. Not that I know where the time goes, except that there is always someone to be held or fed or changed, forever and ever, amen. Sometimes I manage to make dinner, or do a little laundry, but please don’t look at the tumbleweeds of dog hair on my floors or my dirty toilets and sinks. We’re just getting by here. Every night that we put two babies to bed feels like a victory.

And yet a few of my profs found out I hadn’t signed up to take the comps this term, and they told me I should take it, so I decided to give it a try, despite the whole not studying thing. And then I had a disaster morning and a baby peed on me, and a car seat came unbuckled in my moving car, and earlier daycare drop off was a nightmare, and I was ten minutes late for the first day of the test, and the door was barred to me, and there were many many public tears. And then someone fought for me, and I got to take it after all, and I’m still pretty sure I failed. And I still rallied for Day 2, the essay portion, and I think I did ok on 2 essays, but I needed to write 3, and I just didn’t have an answer for any of my other options, so I came home, and went to bed. I am not used to feeling this incompetent

I can try again in the spring, and I will make a study schedule and try again in the spring, but I just feel so defeated. I feel like it is such a battle to just make time for my academic pursuits, and I know that it’s not going to get any better, and then I wonder about all of it, and what I’m doing with myself. And we have to maybe move again at the end of this year, and I have to maybe start a new life in a new place all over again, and make a life for two small people, and it’s just exhausting.

I feel like a broken record lately, “But I have two babies.” Two babies. So small. I underestimated them. Perhaps I overestimated myself. It’s just so very hard sometimes, and I can’t even really explain the hardness, except to say that it is. And right now it feels a little too much for me. Two classes I can do very well on top of two babies, but graduating might just prove to be too much.

So there’s that.

I was afraid to even write this because I know my family reads this now, and I know they will freak out and also give me a bunch of platitudes about how I can do it. But I just need to feel my feelings, right now, and this is what I’ve got.

 

labyrinth

Last weekend we took our first baby-free weekend to visit my sister in Nashville while the girls stayed with their Nonni and Poppi. A good time was had by all.

We also visited my heaven, aka the most amazing new and used book store called Bookman Bookwoman.

On the trip, I still had to do some reading for grad school, and this week it was Jorge Borges, an Argentinian writer. His short stories kind of warped my brain a little bit, as they explore themes of infinity, truth vs. fiction, what is truly real, the way fiction influences reality,and other crazy themes. They also feature a lot of labyrinths. At least two of the stories I read featured books, particularly 1001 Nights, influencing reality in strange ways. And then I began to feel the stories themselves were influencing me…..

First, I read a short story in which a man has died of an overdose of a drug called “veronal,” only to realize I had just read a completely unrelated story by a totally different author for another class that featured a woman trying to kill herself with the same drug. Coincidence, or books reading my mind? Then, I read a story about a labyrinth right before we went to check out a corn maze! (You can check out my sister’s post on the subject here.) Verdict on the corn maze: it was maybe 30 minutes too long, but hey, at least it wasn’t infinite! Also: do NOT tell us not to pick corn. Also: thank God we didn’t have a small child with us, because even we were very much DONE by the time we found our way out. And: essentially, any kind of scenic activity for my sister and me becomes an Instagram field trip. We may have even “styled” some cornstalks for better shots.

Many jokes of the “what the shuck?” variety were made.

 

 

 

American Gothic

Seesters.

Jon reaps a freaky-assed harvest. (If you aren’t squeamish about cuss words, check out the McSweeny’s piece “It’s Decorative Gourd Season Motherfuckers.” You will not regret it.)

Also mind-bending was the simultaneous feeling of absolute freedom to be away from the girls, staying up late, having cocktails, sleeping in, and also missing them to pieces at the same time. We squeed over every picture and video Nonni sent of the good times they were having. Overall, it was very needed. We had a blast and came home overjoyed and re-energized to see our girlies.

This week we face a challenge possibly even more mind-stretching than a labyrinth: flying to Denver with TWO BABIES. If you have any tips, I’d love to hear them. Right now my plan is to strap them to us in carriers, and possibly to bake and hand out cookies (and possibly earplugs) to everyone unfortunate enough to sit near us. I know if I were on a plane and saw two people lugging two babies come aboard, I’d seriously be praying “Oh PLEASE let them sit far far away.”

Awareness

I found out today that October is Spina Bifida Awareness Month. My first thought was: what a crap choice in awareness months. I mean, everyone knows that October is Breast Cancer Awareness Month, as pink has pretty much blanketed everything we see.

But then I thought, well, it’s just as well, since I’m generally skeptical of “awareness” in general. I mean, I’m not usually sure of what it accomplishes. Half of the pink I see this time of the year seems to have no real point, as most of us are aware that breast cancer exists, and the pinkwashing is often unaccompanied by anything about breast exams or early detection or risk factors or anything.

Feeding tiny Claire in the NICU.

I guess people are less aware of the realities of spina bifida. SB is a congenital defect of the “neural tube” which is the part of a fetus that eventually becomes the baby’s head and spine. Claire’s neural tube didn’t close properly, and when she was born, she had 4 centimeters of her spine visible from the outside. As a result of this defect, things like nerves weren’t hooked up properly, so she has/will have certain amounts of disability in her legs, bladder, and bowels, in addition to hydrocephalus, or fluid building up in her head (which for many people with SB requires surgery to place a shunt and drain the fluid, though we haven’t had that yet). While her spinal defect was one of the more severe types, she seems to have good enervation and musculature in her legs, and her doctors and physical therapists believe she will walk and will only need braces to support her ankles, though some people with SB require more extensive bracing or even use wheelchairs.

I certainly didn’t know all of this or really much about SB at all, and it really wasn’t even on my radar until my birthday last year, when we went in for a 20 week ultrasound, excited to finally learn our babies’ sexes, and instead learned that the baby we’d later name Claire had SB. It was a really scary, sad day.

But the thing I needed awareness of that day wasn’t just “spina bifida” as some vague concept. I needed to be aware of the beautiful reality that would be my daughter’s life. Yes, we both had a rocky start. She had surgery at two days old. She was separated from me for 9 days. She was in the NICU for two weeks. She had to stay on her belly for 6 weeks while her back healed. But despite all of that, she’s really just a baby. They’re all very needy. They’re all very fragile. They’re all very tiny. They’re all amazing little creatures. If you looked at my two girls today, you might not be able to guess which one has SB.

If I could go back to last December 16 and make myself aware of anything it would be this: Claire is beautiful. She is funny. She is sweet. She has a radiant smile. She loves to eat. She loves her mama and daddy. She is exploring and learning and growing every single day.

I was so worried about all the ways she’d be different from her able-bodied twin sister, but the reality is, they’re both just babies. They are completely different and yet so very much the same. And almost all of my worrying was completely unnecessary. That is what I needed to be aware of: that there was nothing to be afraid of.

So, no, you likely won’t see NFL teams raising awareness for SB this month, or yellow covering all your favorite products in the name of raising funds. And while you may not personally know anyone affected by SB, now you know a little more about our story, and a little more about my baby Claire, who is special, just like everyone else.

Claire the Bear today.

they come in peace (I hope)

Today, I have 6 month olds. I am still trying to wrap my mind around it, because in my crazy mom way of thinking, it’s like their babyhood is half over.

I’ve also recently come to a new understanding of the babies. I know in the past I’ve said that babies are pandas. And I still stand by that comparison. But I’ve come to a new way of understanding these tiny beings: they’re aliens, sent to learn about our way of life and report back to their people.

They watch us, but they don’t really understand what we’re saying, and we don’t exactly speak their language, either. They find our culture strange and often bewildering, but they’re generally willing to humor us, with our strange rituals and insistence on things like giving them baths and changing their diapers. They’re observing us and compiling data for their report to their leader, usually with a sort of detached wonder, the appropriate posture for a tiny scientist or anthropologist sent to another world, but occasionally their faces betray other emotions, and sometimes, they break down altogether under the strain of their difficult and top-secret mission.

I often wonder about the stories they’re going to take back to their leaders, but sometimes, when they scream in the middle of the night, I’m not so sure they really come in peace.

on re-reading The Awakening

The graduate student in her native environment.

While driving home from school today, I was thinking to myself about all of the stuff I’ve been reading this semester. I’m taking a women’s lit seminar and a “literature of the Americas” seminar (Latin American and Native American) and really enjoying the readings for both, which has stirred up a lot of thoughts. I realized, in a sort of meta way, that I tend to think almost in essay form. I’m not sure if it’s because of all the school I’ve had, or if I like all this school precisely because I’m constantly composing essays in my head, but my musings tend to become thesis statements and paragraphs in my mind. Of course, the problem is, I rarely get a chance to write them down, what with actual assignments to do and something about two babies to take care of….

But, I do have a blog, and I can at least get down these essay embryos and maybe one day return to them and turn them into something if I want.

One of my most striking realizations stems from re-reading The Awakening by Kate Chopin. It’s the story of an 1800s wife and mother experiencing a literal awakening to herself and her place in the world and her realization of her profound unhappiness the more she gets to know herself. When I read this novel for the first time, I believe I was a college freshman. I was 18, and it was a purely academic exercise. Now, I’m reading it nearly 10 years later as a wife and mother, and I’m practically a completely different person reading a completely different book.

Upon first reading, I vaguely remember feeling sad for Edna Pontellier, but I didn’t really understand her in any meaningful way. She wasn’t a very sympathetic character to me, and I found her largely selfish and annoying. She has a live-in nanny, for crying out loud, and she’s supposedly stifled by her role as a mother?! Of course, she’s still a little annoying, with her privileged white girl problems, and I think even Chopin would admit her protagonist is selfish (though how hilarious is it that Edna reads Emerson, perhaps the paragon of selfish male introspection, and he doesn’t get such criticisms). However, now I have a much greater personal window into Edna’s frustrations, even as I realize that maybe it’s precisely because I read The Awakening and other books like it before I became a wife and mother that I largely do not share her pain.

It is precisely because of characters like Edna Pontellier that my greatest fear before becoming a mother was that I would somehow lose myself. Edna argues with the great mother-figure of the book, her friend Adele, about what she would be willing to give up for the sake of her children, baffling Adele with her insistence that while she would give up her life for her children, she would not give up her self. Adele does not understand the difference. And of course, Edna does not understand Adele’s happiness, either, unable to comprehend that a woman who sees almost no distinction between herself and her role as a mother could be truly happy and fulfilled.

The problem for Edna is not that there is something inherently wrong with being a wife and a mother, or that no woman can be fulfilled in those roles, but that not all women are, and for Edna, there were few other options. She is not an Adele Ratignolle, joyfully consumed by her children, but neither is she content to remain a single woman like musician Mademoiselle Reisz. For all her supposed failings as a mother, the Edna we see in the novel is a woman who deeply loves and is very tender with her children. One scene that stands out is her tender rocking of her child to sleep when “the quadroon” is unable to get him to bed. She misses them when they are absent at their grandmother’s house. She would miss them were they not in her life at all.

She is a woman of privilege, even has the much-coveted “room of one’s own” in which to paint, and the childcare to give her time to do so and to think and wander the city as well, and yet she has no meaningful activity outside of her home, and no one in her life who truly understands her. She is a woman who favors the relationship of motherhood but is not well suited to the jobs of motherhood, a distinction made in this very compelling post from Ask Moxie.

Unlike Edna, perhaps because of Edna, I have remained determined to finish my graduate education and continue pursuing my dream of being an English professor. Because of Edna, I know how crucial it is that I get time away from my girls to tend to my other interests, because it makes me a better person and therefore a better mother. Because of Edna, I am grateful for a marriage to a partner who knows me deeply and loves me as a person, not for any prescribed roles I might fill. Unlike Edna, I got to go to college and get to know myself, to become an adult on my own terms before I became a wife and mom, and to discern what it is I want to do with my life and how to define my place in this world. Unlike Edna, I have options.

Somewhere between reading The Awakening for the first time and reading it for the second, I have had many, many awakenings that have made this experience of Edna’s story completely different from my experience the first time around. And in that difference, and in the difference between her life and mine, there is much much gratitude.