the moment we realized just how “normal” our daughter’s disability has become to us

Today I took Etta to get her second filling in 5 short years of life. This is hard for me, because I didn’t get my first cavity until I was like 28. (I’m blaming pregnancy for ruining my perfect record. It’s a thing.) Anyway, we’re pretty into good oral health and hygiene, and with her first filling, I felt like a failure for letting it happen.

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Our new dentist here in Denver is awesome, and she said it looks like Etta just doesn’t have good enamel (something about her teeth being hypoplastic?), that it didn’t form right on her baby teeth, and leads to grooves and weaknesses where cavities can form, despite our good oral hygiene. The good news is, on X-rays, her permanent teeth look better, but we may be spending a lot of time at the dentist for these baby teeth.

After we left the dentist, my husband said to me, “Man, Etta sure got the short end of the genetic stick.”

It was only a beat later that I realized how absurd that comment sounds. I mean, we have one kid with spina bifida, but here we are agreeing that it’s actually the “healthy” twin who lost the genetic lottery. And it’s actually kind of true! Etta’s the short, tiny one (finding school uniforms to fit a 3-year-old-sized Kindergartener was a struggle). Etta inherited my cardiac mutation. And now it turns out that she got crappy teeth?

Meanwhile Claire’s differences have just become normal to us, and normal to her as well. Strapping on AFOs, using catheters, scheduling doctor’s appointments and therapies, monitoring for signs of shunt malfunction, wondering if she’s getting a cold or a UTI, they’re just part of our life.

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And remembering how we felt on diagnosis day, or when we came home from the hospital, I realize how huge this mundane life actually is. What at first seemed insurmountable and life-shattering, turns out to just be another way of being a person in the world. Aren’t we all just adapting and trying to use the bodies we were given to the best of our capabilities? Don’t we all sometimes need extra help in certain areas?

So, in case you’re a parent or person who just got a big scary diagnosis, I hope you can read this and take a little comfort in knowing that one day, it may very well all seem very very normal. Just part of life. Not a tragedy at all.

Here we are today, thinking just maybe it’s our able-bodied daughter who got the bum end of the twin genetics dice roll. What an amazing thing.

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to kindergarten they go

Today, Etta and Claire headed off to kindergarten, two tiny girls with giant backpacks. This year, they will be in different classrooms, but they will be right across the hall from each other, and will have recess and lunch together.

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There’s another set of twins in kindergarten this year, two boys, whose blond hair seems to have a counterpoint in each of our girls. They are both in Claire’s class. Their mom, and many others, asked me if I chose to keep the girls together or apart. The truth is, we saw a lot of benefits in both options and decided to let the school handle it. They’ve done great together at Montessori, and all of their teachers there remarked on how they are neither clingy or dependent on each other, nor antagonistic and fighting– they just kind of coexisted like any other two kids in the same class. They are also very different little humans, though, and I think being on their own could give them each a chance to shine and grow in a way they can’t together, and I’m excited to see how this will go. We’ve been reading a great little book called Twindergarten about a set of twins who are in different kindergarten classes, right across the hall from each other, but who are together for recess and lunch, and it’s really helped them prepare for this change.

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I realized at Back To School Night that I’m mostly just excited for them as they embark on this big journey. Their teachers had big sheets of paper on the wall where we answered questions like what we are most proud of about our children, what they are curious about, what they like to read about, etc. To me, the most interesting question was what our hopes and dreams are for our children in their kindergarten year.

I want this to be the year they fall in love with learning and school. I want them to be, like I was, excited to learn and to be with friends. I am excited to watch them learn to read and have the world of books unfold for them, a world that has always been my happiest and safest place. But most of all, I hope they continue to grow and stretch their kind and loving hearts. “Brave” and “kind” are much higher on my list of desirable traits than “smart” or “successful.”

I mostly don’t feel sadness that my “babies are growing up.” I am so thrilled to see them becoming who they are. I am so excited for the adventures that await them. I woke up before my alarm, just buzzing with excitement. I can’t wait to pick them up (about to head out on our bikes to get them!) and hear how their day went!

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can it be? a light at the end of the long dark tunnel that is THREE?

EttatudeUsually, I am not one to cotton to other parents who tell those with littler kids “just you wait, it gets worse.” Because each stage in this journey has its own set of hard and its own type of beauty, and there’s no use worrying about the next stage when you are already knee-deep in the current one. But one of the best things anyone did for me was to tell me that the “terrible twos” are a myth and three is where shit really gets real. Because OMG. The last year of three squared has nearly killed us. Thank God I didn’t go through two thinking we were in the worst of the toddler years, only to get walloped by three. Three. GOOD LORD. THREE.

This is my brain on THREE YEAR OLDS.

This is my brain on THREE YEAR OLDS.

Three has been emotional. Three has been obstinate. Three has been irrational. Three has been straight-up exhausting. It has brought us to the edge of our patience, ability to form rational thoughts, and self-control. Three has made me want to run away screaming more than a few times. Yes, three has had some magic in it, as imagination has continued to explode and the twin bond has gotten tighter and they’ve been oh-so-eager to be big helpers, but mostly three has been the hardest year of our lives.

Claire tude.

But lately. Lately we see glimpses of the promised land: FOUR. It’s three months away, and we’re getting close enough to see some landmarks. Four seems less ruled by emotions. Four seems silly, always looking to make us laugh. Four is playful and imaginative. Four is independent and actually becoming capable. Four can make a sandwich! Four can put on her own coat! Four is getting better about putting on her own shoes! Four is really affectionate, and comes up with new ways to “show love” every day. Four is obsessed with “ballet music,” and will listen to Beethoven in a ballgown while playing with LEGO. Four loves snuggles with mommy and park time with daddy.

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I’m sure a lot of the time four will also drive us right up the freakin’ wall, but it finally feels like we’re reaping some rewards from all the hard work three has required. And if four is actually a nightmare, please don’t tell me. I can’t handle the news. I’m still recovering from three.

not so incompetent: it does get better

When my twins were babies, a woman told me "It doesn't get any better." I'm here to say it does.

“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.

I wrote those words three years ago today, when I had tiny twins in daycare, a husband finishing up his Pediatric ER fellowship, was adjusting to life with a heart defect after “catastrophic” heart failure, and I was trying to finish grad school and feeling like a straight-up failure.

Now I’m the one whose twins are three, and I want to punch that other mom in the face. Because you know what? It does get better. It gets better and better all the time.

When my twins were babies, a woman told me it wouldn't get any better. I'm here three years later to say it does.

For one thing, everyone in my house now sleeps through the night. It took a long time to get there, but sleep is no longer a thing I agonize about, struggle for, or don’t get. Being tired all the time is just really really hard, and it makes you into a frazzled, emotional wreck. Not being tired all the time? It’s kind of the best.

For another, I can actually leave the room and get some stuff done while my kids PLAY TOGETHER HAPPILY. They can have tea parties in princess dresses, jam out on their instruments, cook up a masterpiece in their play kitchen, color in their coloring books, work on puzzles, build with Legos, and look at books, all without much involvement from me. Not for like, hours at a time, but often enough time to take a shower or get dinner together. That makes a big difference in my ability to feel “competent” at more than just the zoo keeping of keeping two tiny lumps alive.

Also? I realized I didn’t actually want to keep doing the grad school thing, and now that I have let that go, and also let go of defining myself by academic achievements or lack thereof, I’m much happier. I don’t have to “be” anything other than who I am right now, because it turns out I’m in a pretty good place. And maybe when my kids start school next year, I’ll get more serious about pitching and working to actually make this writing thing I love so much work for me. But I think the work I’m doing raising these kids is valuable and important, too, even without an M.A. after my name.

I remember being so scared three years ago to admit that I was feeling so low. I remember how desperate and overwhelmed I felt. I also still remember the sweet comment my friend Patrick, who is a little further down the parenting road left for me:

She’s wrong. It does get easier. We didn’t have twins, but 3 in five years. I can’t do the advanced math it takes to work that out, but I’m pretty sure I changed diapers for 14 consecutive years – and the oldest is only 13 now. Anyhow… It does get better. I promise.

There are a lot of great days ahead. The day you change your last diaper is a great day. The day the Bufflo Girls can buckle themselves in their car seats by themselves is a great day. The day they learn to ride a two-wheeler is a great day. The Saturday morning you wake up and discover they have gotten up, made their own breakfast and entertained themselves while you slept in is a great day. Your life is loaded with great days ahead.

I have found that my antidote to feeling like life has ganged up on me is to use gratitude as a tool. Not the kind of false gratitude your man Daniel is talking about up there, where gratitude is measured against others having it worse, or a guilty gratitude where we berate ourselves for having it so good, but the kind of gratitude that realizes that this feeling will pass and that today, I have everything I need, even if today does kind of suck, and tomorrow is another day filled with wonder and struggle and love and work and surprise and sorrow and joy.

The truth is, some days just plain suck and that’s ok. It will pass. Every single day of our lives aren’t meant to be filled with rainbows and unicorns and hobbits. When I can manage to use gratitude to find something genuine to feel grateful about without comparing myself to others, I can usually turn my day around. And some days, the only way I can find my gratitude tool is to tell others that I’m having a shitty day, and give them an opportunity to help me find it. And that’s a pretty joyful thing.

We’ve already had a few of those great days. And part of the reason I can celebrate them now is that I’ve been through the sucky days, too. I have struggled and grown and received so much grace in this process, a reason to be grateful for even the really hard days, too. Because I know that what I have and who I am? They’re enough. They’re not perfect, but they are GOOD. Even on the hard days. And especially on the good days.

So, now, when I see a mama struggling with little ones, I remember NOT to be the Debbie Downer with the three year old twins. I want to be the one who says: “I see you. I know it’s hard. I know it’s overwhelming. I know it’s beautiful and huge and heart-exploding, too. You’re doing enough. You are enough. And it will just keep getting better and better.”

 

serenity now

Serenity Now: how parenting is like being a super hero in training

Lately, I’ve had the feeling that having children is like becoming a super hero. Not in the get exposed to nuclear waste and suddenly find yourself in possession of amazing mutant powers sense, but in the receive a call to greatness and head off for some really intense training with some kind of fighting master who kicks your ass and teaches you to calm your inner storms and harness all of your strength in the service of something greater. Only in this scenario, my ninja masters are about 3 feet tall and their methods seem a little questionable. Like, they might violate the Geneva Convention. Luckily they’re really cute, because they push me to just about all my limits at least 10 times per day.

I never thought of myself as a super patient or gentle person, but when I think about how much those powers have been tested and grown in the last 3 years of this bizarre baby-led boot camp, I might as well be a super human in comparison to my former self. I don’t always get it right, but luckily my little teachers are very patient and determined to keep testing me until I learn.

They’re so good at it, in fact, that I’ve thought about lending them out so that others can get this sort of zen training themselves. Every time I drive past the ecumenical meditation center, I fantasize about dropping off my two little zen masters to give the folks inside some real mindfulness training. Finding peace in a tranquil room while listening to the soft sounds of a babbling brook? That’s the easy level. Finding peace while two master interrogators pepper you with questions every 36 seconds is some next level stuff. Finding it while someone needs to potty, the other is starving, they’ve just gotten into a hair pulling match over a dollar store toy, you’re 10 minutes late to get somewhere, you haven’t had time to feed yourself all morning, and suddenly everyone hates everything they’re wearing and YOU GAVE ME THE WRONG CUP, MOM, EVERYTHING IS TERRIBLE…well, that’s super hero type stuff.

Most days, these little fantasies make me laugh. When I think about all the ways even my most exasperating moments in parenting are helping *me* to learn and grow, it’s easier to feel something closer to appreciation than desperation. It especially helps to think of myself as Batman and the girls as my little martial arts masters. Because I may not be Super Mom yet, but every day, I’m learning a little more.

a good nap, spoiled

I probably need to do some self-examination to truly get to the bottom of these feelings, but as the mom of two preschoolers, I cling to the quiet of naptime like a life-preserver. Parenting small people requires every ounce of patience and energy I have, and I begin to run low after a few hours. I need a respite in the middle of the day to gather my reserves and recharge a bit, to refill the patience and energy tanks so that I have more to give in the hours before bedtime. And on days when my kids won’t nap? I feel actual rage. It’s like I can feel them actually stealing MY TIME away from me, and I start to feel desperate– how will I find more patience and energy to last me until bedtime?

I should have known as Etta Jane drifted off in the car on the way home from the daffodil festival that we were borking any chance of an actual nap. But visions of some quiet time on the couch to read danced in my head as we attempted to put both girls down for a nap after their short car snooze. I went back in twice to get them back into bed. I handed them books and begged them to just lay there and be quiet. But eventually it became clear that the nap  rocket was not leaving the launchpad. I pictured my husband going in to work at four. I wondered what I was going to feed us for dinner, something that seems to occupy at least 75% of my brain most of the time. I wondered how in the heck I was going to make it to bedtime on current patience and energy levels. I got mad.

“Why don’t you leave and go somewhere and let me take them?” my sweet husband offered. Blinded by my desperation for the nap time that wasn’t happening, all I could feel was trapped. “Where would I go? There’s nowhere for me to go!”

I heard him telling small people to put their whiny voices away, heard him finding them shoes, and as he led them outside where he had planned to spend naptime working on the garden, I snuck away. I sat on the couch and tried to gather some patience and energy. Small people soon returned demanding snacks, so I fixed them a cheese stick–no, cwackers!–no, the orange ones!–no, the ones she has! I got exasperated and raised my voice to ask them to OH MY GOODNESS JUST SHARE WITH YOUR SISTER THERE ARE PLENTY OF SNACKS, WHY DON’T YOU EVER ACTUALLY WANT THE ORIGINAL THING YOU JUST ASKED ME FOR?

I realized maybe I needed a snack and some quiet time too. I fixed myself some cheese and crackers. I retreated to my bedroom with a book and the cat, who I am worried about lately because he’s been sick, who keeps getting put on the back burner because life is sometimes so very hectic with small non-napping constantly-snacking insanely-picky preschoolers running around.

I ate my snack and read a chapter and enjoyed the fact that the cat is such a quiet, lovely companion. I felt the patience and energy meter start to creep up, just a hair.

Soon a small white-blonde head bobbed in next to my bed. “I sowwy mama. I sowwy I made you mad by not shawing wif my sister.” I melted. “I’m sorry too, baby. I’m sorry I got so mad about the nap and the snack. I love you very much.” I read two more chapters as my little sprites wandered in and out, catching worms with their daddy outside, pausing to come in and try on some of my necklaces, wandering back out again. I appreciated the sound of their stompy little kid feet in the hallway, snuck some kisses on top of soft hair warmed in the spring sunshine. I helped Etta wash her hands and returned to my perch. I helped them find “the widdle bubbles” and then returned to my perch. I got out my laptop and felt moved to write this post, confessing my sins to the page, releasing them as I typed. The brittle edges of my bad mood began to soften. I forgave them for not napping, forgave myself for being tired and impatient. To be a mother, for me, is to have to forgive myself at least seven times a day. Thank heaven grace abounds. I’m still growing, too.

strange bedfellows?

Once upon a time, the gals could share a basinet!

Once upon a time, the gals could share a basinet!

Lately, I’ve noticed a new trend in the bufflogals’ sleeping arrangements. They sleep in toddler beds and can get in and out on their own, but up to this point have mostly slept in their own beds until morning. Usually, the girls get up and play together for 20 minutes or more before we have to retrieve them (just one lovely reason I love that they share a room– extra sleep for us!), so it probably took me longer to notice than I might have, but there were clues– Etta’s stuff would all seem to be in Claire’s bed. Her pillow, her blankey, her stuffed loveys, all in sister’s bed. I thought it was happening in the mornings during play time, but when I heard a crash and a cry the other night, I realized Etta was trying to sleep in Claire’s bed. I put her back in her own bed, but later heard stirring and went in again to find her curled up at Claire’s feet. After my heart exploded from adorableness, I tried to extract Etta back to her own bed, but she clearly did NOT want to be moved. I asked Claire if it was OK with her if Etta snuggled with her, and she sleepily agreed, as if she’d be willing to do anything if it meant her sister would let her catch some zzzz’s. This would have worked fine except two toddlers in one crib-sized mattress is cramped, and they woke each other up later in the night.  Continue reading