Wednesday, July 15, 2015

The surprising things about this summer


I’m going to come right out and say it. This is NOT the summer I had envisioned for us. The girls were supposed to be at summer camp and preschool respectively, and I was supposed to be busy with freelance work. And possibly some house projects.

But then sickness happened, and suddenly, plans veered off course and here we are, having a completely different kind of summer altogether.

When I first realized that I would be home with the girls 24/7 while suffering debilitating pains from my freak condition, I panicked. How the hell am I going to do this?

It’s been a month now, and I think I figured it out. It’s pretty simple actually. I decided to just let summer be summer for all of us.

You know, the idyllic childhood school break that most of us remember from our past - big blue skies and the great outdoors in hot, hot heat with no big plans and no place to be, doing mostly that which is led by our whim? Yes, just like that, minus the great outdoors for my girls, because, according to them, what’s that? Unless it involves a pool.

With my limited mobility issues, I hesitate to commit to anything beyond play dates because the thought of rushing to classes and following a schedule feels exhausting, let alone having to go through with them.



The family command center

I have a family calendar that I try to fill with possible things we can do together around the city, but if something else comes up, no big deal. There’s always the next day or the next week. This laidback approach isn’t usually my style, but as part of my healing process, laidback is all I can afford, and you know what? For both my sanity and my recovery, laidback is good.

Glorious Sleep
Apparently it’s the summer of discovering strange yet wonderful new behaviors for us because the female species in this house have been sleeping in. It is uncommon for the girls to wake after eight, but when they’re crawling out of bed closer to nine, sometimes after, you know this is a fantastic new era for us.

I’m usually a morning person myself, but with my ailment, I allow myself all the sleep I need because a) it’s good for healing; and b) deep in dreamland is the only time I don’t feel pain.
As someone who thrived on little sleep, operating on no more than six hours of sleep every day, this abundance of sleep - Seven to eight hours? What?! - is almost unheard of for me, yet it’s probably one of the best changes that my condition inadvertently brought me.

The strangest part is when I wake to the streaks of morning light that shine through the sheer curtains in my room, feeling fully rested, and I find the house is silent because the girls are still asleep. I then make my way to the porch to listen to the chorus of birds in my yard with that exquisite first cup of coffee in hand, just slightly unsettled by my solitude at this time of the day. No kid to interrupt my reverie, no one’s asking for more milk, more’s like The Twilight Zone.

Not that it all goes to hell when the girls are up. In fact, they deserve credit for often starting the day quietly, each in their own way. Little Miss will be in her own fictional world with a book; Pickle either climbs in bed with me for a cuddle or sits in the craft corner, coloring and humming some nameless tune. Or she’d sing Tove Lo’s, “I’m high all the time, to get you off my mind, ooooh ooooh…”  At four, she has no idea what she’s singing yet, which makes it that much funnier for those of us who do.

When we’re all awake, My Guy takes a break from his work to make us breakfast. Unlike us, he begins at 4AM or 5AM when his girls are still slumbering and the owls are making eyes at him from the trees in our yard. (No, seriously, he showed me pictures of the three owls that were flirting with him.) Sometimes he would eat with us; sometimes he’d scramble back to his office for his next conference call, which has become such a familiar soundtrack of our summer days. That and NPR from our kitchen radio, my constant companion.

Unless the girls are in the mood for Disney tunes or Katy Perry. But if I’m lucky, we’ll get on the Pandora station set to Vampire Weekend as we slowly ease into the rest of our day.

Passing time
While we wake to unstructured time each day, there’s still a rhythm that involves weekly activities that the girls have learned to expect so we’re anchored by familiarity.

We go to the gym at least three times a week so they can play at the child watch center while I try to rehab myself into better mobility. Sometimes, we’d plan to meet friends at the outdoor pool there or we would randomly bump into them. Now that Pickle can swim, both girls will play in the water with their buddies until they turn into prunes while I enjoy adult conversations with fellow parents.

Sometimes we’ll invite friends and neighbors to our pool at home instead. Or the girls just jump in and spend a couple of hours in there on their own while I prepare dinner and tend the garden. In short, my water babies don’t stray too far from the pool, but with our scorching summers here, it’s a Texas thing to do.


On Mondays, we hit the library for books and attend some kind of performance held there weekly. There was a clown show once, where lucky Little Miss got picked to be his helper. The girls also watched a puppet theater and the Austin Opera perform while learning all about a genre that seems strange to their ears.


Apart from the gym and library, I would plan an excursion - a museum jaunt, the park, a movie - either with friends or with just the three of us. Sometimes there would also be a play date for Little Miss while Pickle and I spend some time together.

IMG_2250 At the Thinkery, a children’s museum


These outings, planned or spontaneous, break the monotony of our daily routine at home, although with summer, there really isn’t a real routine. I had envisioned a carefree summer for them, not unlike the one I had when I was a kid, but at ages six and four, sometimes this “carefree” needed some planning.

Like intentionally creating a “Busy Box” - a crate filled with coloring books, word games, mazes, etc. - so they can easily fill their own down time. It’s not like my girls don’t get to indulge in TV. They definitely get more of it this summer, although I try to hold off until later in the day to capitalize on their morning energy, when they’re more likely to try something new, explore, be creative, play together and even comply to my requests.



I am of the “let the kids be bored” camp of parenting, where I neither try to fill their every hour with activities nor do I help structure their play time, because it’s good for them. They’re expected to devise their own entertainment in between Pokemon episodes and the iPad since screen time is still not a free-for-all in our house. The funny thing is, I rarely hear complaints of boredom because eventually, with a little bit of imagination, they do figure it out.



Recently, My Guy introduced Little Miss to Minecraft, and he has since been relishing every opportunity he gets to bond with his daughter in the way gamer dads do. He’ll occasionally take a short break from work in the middle of his day to play with her for a bit or she will get to stay up a little longer in the evening while they build something in the game together. They now share a lingo that’s alien to me, and I think it’s a beautiful thing.

IMG_2101 (1)


I guess there is a bright side to my unfortunate disease. I get to slow down, hang back, and notice the little things I otherwise might have missed. Like the connections that are happening around me.

The father-daughter minecraft connection. A secret club between sisters.




This has to be my favorite part of this summer - watching our connections morph from one that’s formed purely out of need to one that’s shaped by desire. I’d spent every summer with my girls since Pickle was born, and each time, I’d been an active participant among them because they needed to be supervised, needed to be close to me. Sometimes I would be roped in to (begrudgingly) play the part of the witch or whatever villain concocted for me because, well, if I had to be there, I might as well join in, whether I liked it or not.

This time, however, my role as mom is secondary to their role as sister to one another. They’re far more likely to go off on their own to create an elaborate scene for themselves, each playing a character of their choosing. When they hit a wall and come running to me for ideas, I do just that - I give them ideas and tell them to “run along now”, which they miraculously do. As a parent to young children, this “run along now” moment used to only happen to parents on TV but man, now that it actually works for me, I find myself getting things done in the middle of the day (like writing this blog!), or, if I so choose, sit back and relax myself, which, frankly, is rare.

I’m just not the sit-by-the-pool-with-a-book-while-the-kids-swim type of person, not that there’s anything wrong with it. I’m just not wired that way, much to My Guy’s chagrin because he’s always encouraging me to relax. I would rather use that opportunity to maximize my efficiency to stay on top of things.

However, it’s not like I don’t notice what’s happening around me even if I choose to check off my task list. The one thing I notice above all else is the blossoming of this sisterhood between my girls. Of course they squabble and fight and tattle. But they’re sisters. As an only child, I’ve been told that’s what sisters do.

But I also see an abundance of love. They’re old enough now to have real conversations, they share secrets that belong only to them, they build a world of their imagination together - even if it’s just to battle one another in a Pokemon arena. Sometimes, when one gets in trouble, the other stands up for her. They’re also starting to band together to make their case against me, but I’m secretly okay with that too.

Sisters first has always been my plan, only they don’t know it. Because, really, what an honor and privilege it is for me to see this relationship, as complex as it is beautiful, take shape right before me.

In the end, sure, it can be annoying to chalk every misfortune to “everything happens for a reason”, but I suppose this is how we, the blighted, cope. It does feel better, knowing that this pain that derailed our plans for the summer actually gave us something even better instead.

It gave us each other.


Thursday, June 25, 2015

Just call me Pollyanna: Coping with my still-mysterious ailment

After a month’s wait, I finally saw the rheumatologist about my broken body over two weeks ago. I knew I wasn’t going to miraculously walk away with answers, and I didn’t, but by the next day, test results showed high levels of strep bacteria in my bloodstream. In hindsight, that was most likely what I had that weekend in Dallas when I powered through my sickness to enjoy my first weekend away from my family only to succumb to mysterious and debilitating joint pains the following week.

The doctor prescribed antibiotics to rid the body of the bacteria that he suspected caused what he diagnosed as Reactive Arthritis, and I was put on a higher dosage of pain meds, which, at that point, I gratefully accepted.

OK...I guess that’s better news than something chronic and untreatable, but he wasn’t 100% about the diagnosis either. Of course. So now I play the waiting game to see if the treatment works.

While it’s great that I finally have some kind of plan to tackle this thing instead of fearing the worst for the past few weeks from not knowing, the news isn’t the best either: according to my doctor, my joints will take multiple weeks to heal. Groan… According to Google, “the pain should go away within a year.” Gasp! Yes, yes, I know - serves me right for going to Google. Again. Didn’t I learn the last time?

This protracted healing feels particularly excruciating and annoying to someone who is generally active. These days, I waddle like a penguin because the joints in my hips, knees, and butt are on strike, and I move like a robot in dire need of WD-40 because of the pain in my neck, shoulders, elbows, and rib cage. I feel hopelessly trapped in my own body.

Meanwhile, it’s summer break, and I’m staying home with my girls, operating in slow motion while my girls are in fast forward. It’s been challenging, but I have to give them credit for being so understanding throughout this ordeal. When a friend of mine, an inspiring cancer survivor herself, tried to dissuade me from feeling guilty for not being the mom I want to be for my girls, she said, “this will help teach your kids compassion.”

And I was so pleasantly surprised at just how right she was.

Little Miss is mindful of my impediment and has been quite helpful around the house, offering to put Pickle down to nap or read to her sister so I can rest, or to tidy up an area because I can’t bend. Being a bookworm means she is out of my hair most of the time, reading two to six chapter books a day in some corner of the house, giving me ample space while she’s on an adventure in some fictional world. Sometimes, I even get to read next to her, which is the best.


Pickle, who has witnessed both my good and bad days, will wistfully ask “are you all better yet mommy?” when she sees me more mobile on my better days and when I admit no, she plants a kiss on my hand as if to say, it’s okay, you’ll get there soon. Once, when we walked across a field and happened upon a dandelion, she picked it up and handed it to me: “Here mommy, this is for you so you can make a wish for your pain to go away.”

Oh, this girl.


And here I thought it was going to be hard with the girls, when in fact they’re the ones who keep me going. Literally. They keep me active as I’ve been taking them places, preparing meals, and cleaning up after them, which can be exhausting, but it also helps with my condition because constant motion prevents my joints from stiffening. It’s the movement after a period of rest that hurts the most.

Every time I stop moving, I feel my body contracting. I imagine it to be like rigor mortis. Only I’m still alive.

Alive and grateful, I should say. I may be slow and in pain, but I’m here with my family. A blogger friend of mine recently lost her 30-year-old sister to cancer, and I felt foolish for complaining about my aches. Perspective is a sobering, humbling exercise, and every time I feel myself sinking, I think about those who have suffered more - the recent flood victims in Texas, those afflicted by far worse diseases - and it clears my murky thoughts. Despite my complaints, I’m still one of the lucky ones.

Perspective also forces me to focus on the “can’'s rather than the “can’t”s. Like a frickin’ Pollyanna with my rah-rah think positive campaign, I refuse to revel in the sadness and misery of my condition.

I can’t run, do yoga or lift weights, but I can swim. Slowly. Any activity helps not just my joints but my emotional state. I find I can better cope when I feel stronger from a few laps in the pool. Plus it feels great to feel light and buoyant in the water after all this tedium of mobility on land. Lately I’ve been able to use the elliptical machine too. Progress perhaps? But I won’t allow myself to get too excited. I’m still waddling after all.

With kids at home 24/7, the mess is harder to contain, but I’m also someone whose emotional well-being is easily influenced by clutter. That means there’s no letting things slide just because I’m unwell. I can’t, however, easily bend to pick things up, but I can purchase a grabber that can help me reach better. I named it Grippy, my new best friend. We’re together a lot.


It actually hurts to sit at my desk to work for prolonged periods, so it’s a big reason why I can’t contribute financially to my family, but on the flip side, I can spend that time with my girls instead. At six and four, they’ve hit this magical age where they’re far less needy and clingy with me and more dependent on each other for company, which omigodisthisforreal?? I’m so in love with this evolution of parenthood right now, especially since it couldn’t have arrived at a better time.


Thanks to record rains, Lake Travis is full (yay!) and I can’t keep up with the weeds in our yard on my own (boo!), but, with a little incentive, my girls can help.


All this to say, thanks to my sweet and supportive family, I’m coping. I won’t even go into how My Guy has been so amazing during this difficult time, because that could fill another blog post, which kinda did this past Father’s Day, but he knows just how ridiculously grateful I am to have him.

While none of this is easy on us, I have to say it’s pretty remarkable how we’re capable of adapting to a new normal - even when there’s nothing normal about it - so quickly. We’ve developed new routines around my pain, like having My Guy crack my back every night before bed so I can breathe better. Or going to the gym on Tuesdays and Thursdays so I can use the elliptical and the pool for my laps. I could do these at home, but at the gym, the girls get to interact with other kids at the facility’s Child Watch center that often involves Kid Fit activities of their own. They make new friends; I fight disease and depression. Win, win.

My follow-up visit to the doctor yielded more questions, X-rays and another prescription since I’ve steadily gotten worse, not better, from the last time I saw him. This new medication is a steroid to reduce the inflammation. I’m not sure if I’ve improved from it yet as it’s only been a couple of days, but I’m already feeling one of the side effects, insomnia, as I compose this at two three in the morning with too-bright eyes for this time of night.

Sure, it sucks that I can’t sleep, but at least I can finally finish this post that I started over a week ago.  

See? I’m totally getting a hang of this Pollyanna thing aren’t I?

Sunday, June 21, 2015

To the man

This post is dedicated to the man…

…who makes us breakfast every morning, no matter how busy his schedule is. Sure, it doesn’t always look like this delicious breakfast taco that he’d make on weekends or on “Weggsdays” (Eggs on Wednesdays) but waking to his dedication to his family will always feel wonderful.




… who takes our girls exploring with him and teaches them the value of adventure and curiosity.


Bull Creek





…who pushes them to do more, even (or especially) when they’re afraid, promising to always catch them and he does.




…who is the bedtime routine guy (bed, bath, teeth, books and songs) because he breezes through it better than I do. Besides, for the girls to begin and end their day with their daddy who’s often times busy with work in the middle the day, what could be better?



…who is the resident geek and gamer, and because of that, our girls will easily know their way around technology.




…who has a knack for goofy antics, which always, always get the biggest belly laughs and frenzied giggles from our girls.







…who will never accept that his girls can’t do something just because they’re girls. In fact, he makes sure they know that they can do anything he, a man, can. Even toilet repair.



I would go on and on, except I don’t have pictures for all the big and little things this man does for our family. But from what I have here, it’s not hard to see how lucky we are to have him in our lives.

Happy Father’s Day to our favorite guy. Thank you for all that you do for us and for loving us the way that you do.

Thursday, May 28, 2015

A birthday letter to my four-year-old Pickle

My dearest Pickle,

Today you turn four, and while I go through the usual wretched emotions of seeing the last threads of your babyhood slip from my grasp, you’re “super excited” to be this big girl of your dreams - one who can do more, be more, except you’re already there and don’t even know it.

Sure, you still can’t read the stats in your Pokemon book, and you’re not quite tall enough for the bigger water slides that you've been desperately wanting to try, but what you’re capable of with your heart? I tell ya, you could move mountains. 

I’ve never seen anyone as generous as you, happily giving up your share of ice cream ("ice cweam!!!") for your sister who you know loves it too and making sure everyone around you gets to delight in what you enjoy. Admittedly, you can get a little overzealous with your sharing: “HERE! YOU HAVE TO TRY THIS!” but I know it comes from a good place.

This good place that has said, countless times, “I just want to make you happy” when you go out of your way to do something unexpected just so you can make the other person smile. And when someone thanks you for your loving gesture, you let out that little giggle that tells us that you derive more joy from giving than receiving, which is pretty incredible for any age, let alone a three- and now four-year-old.

This good place that is also fiercely protective of Little Miss, who’s 2.5 years older than you and who you absolutely adore,“Stop yelling at my sister!” and then you turn to gently say to her as you try to embrace her in your pudgy arms: “It’s okay, I’ll make you feel better. What do you want? Tissues? I’ll get that for you ‘k?”

This good place that created this conversation:

Me: You know what my favorite thing about you is? Your heart. Because you’re so kind and so giving. You always share what you like with other people.
You: That’s because when I make other people happy, it makes my heart happy too.

That right there. That’s perfectly, unequivocally you.

That is not to say that you’ve been an angel - I’ve never called either of my children because, come on, I know better. You’ve had your Terrible Three moments, and boy can you make a scene. But that part of you is par for the course - you’re growing, you’re testing your limits and pushing boundaries. I get that, and while that’s not my favorite part about you, what comes after sure makes up for it.

Being a little shit is just one of your many talents

Your ability to be self-aware after a difficult episode and walk up to us, unprompted, to apologize often melts us: “I’m sowwy Mommy...I’m sowwy Daddy…” You hate being on the wrong side of our affections, and we can never stay mad at you so it always ends in a teary embrace and wet kisses on your soft cheeks that still, much to my delight, hold traces of your baby fat. We recognize the moment when all is right with the world again when we see that light radiating from within you. That light that shines bright enough to help me find my way on days that I am lost, especially now with this mysterious pain that has descended on my joints, leaving me hurt, baffled and weary every day. Which you often ask about because that's just the kind of person you are, always aware of the feelings of others: "Are you feeling better today mommy?"

I love, as family clown, how funny you are (as your Daddy says, "you’re a goofnut”, which sends you cackling) and how smart you are (despite declaring “I can sing Twinkle, Twinkle Star in  Spanish!” when in fact it was in Mandarin. Ahem - we'll work on that). And how, at four, you’re already swimming gracefully on your own and making new “fwiends” easily everywhere you go. 

You can be fearless, but when you have a nightmare, you climb into bed with me at night, "just for two minutes", and you can be so sweet because when that time is up, you willingly uncurl yourself from my arms and head back to your room, saying "I don't want my sister to wake up and not find me there with her."

It amuses us to no end that you continue to struggle with rolling your tongue for “r” words and your lisp seems to be stuck to you, but I also secretly celebrate this impediment because we can fix these little hiccups in your speech when you’re older, but we can’t ever have our little baby back once you decide to leave it all behind.

However, instead of fearing and fighting the inevitable, I realize I should just be grateful for every moment I get with you because you know what? Whether you’re 1, 4, 10 or 20, it’s going to be extraordinary no matter what. I’m so incredibly proud to be your mom, Pickle, and I love you more than words can say.

Happy birthday my sweet. Thank you for being the light and joy of our lives.



Thursday, May 21, 2015

The thing I don’t want to talk about

I don’t want to talk about this mysterious and debilitating pain in my joints that has been plaguing me ever since I came down with the flu for the first time in years.

I don’t want to talk about how, in the past week, I’ve barely been able to walk or sit, let alone play with my kids or get outside to run. Heck, I can’t even do yoga.

I don’t want to talk about the guilt from seeing My Guy step in for all the things I can’t do for my family or myself, like getting the girls ready in the morning, making dinner (or breakfast or lunch!), picking them up from school, laundry, dishes, groceries, every *#@&$^@^ thing, although I do want to say just how AMAZING he has been for being there for us every time we’ve needed him.

I don’t want to think about what’s wrong with me, although I can’t help it. Hours of poring over pages and pages on the Internet gave me a Fibromyalgia scare that had me in tears for days. So yeah, not only do I not want to talk about that, I don’t ever want to do that again either because the strain from worrying is bad enough, but the stress from a wrong self-diagnosis was much, much worse. But not knowing? That’s killing me too.

I don’t want to talk about the desperation - and even the betrayal - I feel, not knowing what is happening to my own body. A desperation that has led me to try acupuncture, cupping, and Chinese herbal medicine for the first time because the June 30 appointment with the Rheumatologist seems forever away.

I don’t want to talk about how it feels to see my family bustling around me and I’m helpless to join them. How my heart breaks a little each time I say no to a request to see the fort the girls built, watch the birds with them, tuck them in their beds. Because it physically hurts. And this guilt is emotionally draining.

I don’t want to talk about this crippling fear I get occasionally - what if this never goes away? what if this gets worse? what if...what if...what if <all the worse things that can happen> is happening right now?

I don’t want to talk about how it feels better today than it did yesterday, and I think I see the light at the end of the tunnel, but I’ve seen that light before only it was extinguished the next day when the pain didn’t just linger but was magnified.

I don’t want to talk about this hope that appears in and out of focus with each day, depending on what my body has in store for me, and it can get exhausting, trying to lift myself off of my own despair with this hope. Maybe I’m on the mend, maybe it’s a fluke, maybe it’s all going away...

I don’t want to talk about how I’ve been waking up every morning disappointed because well, it still feels like hell, and I have to force myself to painfully endure all the things I love doing and could usually do with ease for another day.

I don’t want to talk about any of the awful stuff, hoping that staying positive will do the trick, hanging on to whatever fucking platitude that will get me through the moment - this too shall pass, we will get through it - but I guess I’m failing spectacularly on that front too, just like the way my body is failing me.


Don’t be fooled; pain can look like this.


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