Is A Chronic Illnesses Really A Secret Superpower?

Have you ever had a “light bulb moment” about an issue that completely changed your perspective? I’ve been struggling with the challenges my chronic illnesses present for years, but motherhood was a curveball I didn’t expect. But was I really as unprepared as I thought?

Light bulb moment!

What if…?

 

Today I had the privilege of sharing my story of chronic illness, motherhood, and attempting to achieve superhero status. Head on over to Mom Babble to check out the post and let me know what your “light bulb moment” was!

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How to Survive a Four Hour Drive with a Toddler

Prior to becoming a mother, I told myself I wouldn’t be caught dead driving long distances with a child. I figured I could put off accepting any kind of out-of-town social event until the kid was say, oh I don’t know – how old are they when they stop misbehaving? Oh right. Never. My genius pre-motherhood plan lasted less than two years. Last week my husband, eighteen month old son, and I set off on a cross-state drive for a wedding and I’ve lived to tell about it!

If you want to survive a long, family car ride without needing to call someone for bail money (presumably for assaulting whoever woke your sleeping child), then read on:

1. Expect the Unexpected

Before our trip could even get off to a proper start, I somehow managed to dislodge the right side of my front bumper. I’m talented like that. I’m like ninety percent sure it wasn’t my fault, but let’s not squabble over details. There we were: in the predawn hours, dragging rubber and plastic down the highway, praying to the travel gods the baby would stay asleep while anxiously looking for a safe place to pull off .

This looks safe, right, Honey?

“This looks safe, right, Honey?”

Despite neatly packing snacks, quietly transferring my sleeping son from the crib to the car, and carefully hanging fancy clothes without wrinkling them, I was not prepared for this. So what do you do when the proverbial fecal matter hits the fan? Aside from performing a ritual goat sacrifice, I strongly suggest you embrace the chaos. The more you try to fight against the craziness, the less calm you (and everyone around you) will be. Just try to roll with it – even if you’re screaming internally.

Just breathe in and out.

Just breathe in and out.

2. Breaks. SO. MANY. BREAKS.

Keeping in theme with the previous rule, you’ll need to adopt the mantra “F*** The Schedule!” When the mini vehicular catastrophe was finally remedied (thank you, zip ties!), we were a solid two hours behind schedule. I thought to myself, “That’s okay. We factored in a bonus hour for breaks, so we’re really only one hour behind. I can make that up with clever driving and no breaks. It’ll be fine!” Oh how innocent I was.

So young, so full of hope I was.

So young, so full of hope I was.

A funny thing happens when you try to drive long stretches without a break. Perhaps “funny” isn’t the right word. Pee. Yup that’s the word: PEE. Pee happens when you don’t take breaks and you have a toddler with the bladder the size of a thimble. Unfortunately my seizures left me with the inability to smell (True story! Ask me about it some time) which meant I was blissfully unaware of the urine soaked car seat and horrifyingly wet toddler until it was too late. Do yourself (and your upholstery) a favor, and take as many breaks as necessary. Those with functioning olfactory receptors will thank you.

WHY, GOD? WHY?!?!

WHY, GOD? WHY?!?!

 3. Baby = “Get Out of Jail Free” Card

Okay, this one may sound like I’m a horrible person – and maybe I am, who cares? – but one of the perks to having a baby is that it is the best excuse you’ll ever have! I’m not recommending you lie and say your baby is sick to get out of a party because, ya know, karma. But if you have a legit situation which has created some negative outcome, don’t be afraid to blame your exit strategy on the baby. Just don’t get drunk with power.

drunk with power highlander

It’s deceptively easy to use the excuse too much.

The final key to being able to survive a long drive with your toddler is to not worry about what others may think. Merely showing up in one piece should be accomplishment enough, in my opinion. Yeah, we were late and probably smelled of baby pee, but we MADE IT! The ride back? Now that’s an entirely different story…

Today Would Be Her Due Date

My dear friend, Jasmine, of Emilee Plays | See June Play has graciously chosen to share her premature birth story. Below she writes about her experience on what would have been her youngest daughter’s due date.
She tells beautiful stories through photo essays and today’s story is no different.  

***

Today is my due date.

Today would have been the day I met my daughter, June. Instead, I met her two months ago. Never could I have imagined that I would give birth to a preemie, but I did. I’m not going to lie and say I don’t feel a little bitter about it, or that I don’t wish things could have been different.

I could have done without the NICU stay, the worrying, and the uncertainty. When I start getting completely caught up in my thoughts about this day, I remember: June is two months old, officially a newborn, and set to get her vaccinations on Thursday.

I can breathe a little easier and I can live a lot more with my daughter.

***

shared moment

A shared moment

first look

First look

newborn

A whole new world

Emilee + June

June 1 month

One month

Two months

Two months

On her due date

On her due date

 

Mommy Wants A Nap

Do you ever have one of those days where you just want to hit pause? Let me rephrase, do you ever have a day where you don’t want to hit pause? Lately I feel like I’ve been trying to chase an unwieldy boulder careening downhill… while wearing a blindfold… and with one arm tied behind my back.

I’m not exactly your typical working mom. My “day job,” if you will, involves working with children facing developmental or behavioral challenges and that has me driving to schools and students’ homes. My other job – and yes I consider it to be a legit job – is writing and I can fortunately do that anywhere and at any time. Both jobs require using my brain and I can’t really go on auto-pilot. Well, I could, but the outcome probably wouldn’t be great.

homer simpson job fail

“Just gonna check Facebook for a minute and – WHERE’S THE BABY?!”

Sometimes I wish I could just “check out” for a minute and not think about anything at all. I tend to be a tad neurotic and over analyze things, so when you couple that with being a working mom, you have the perfect recipe for a mushy brain by the end of the day. But that’s just the thing – there really isn’t an end of the day for most moms, working or otherwise. There’s usually not a beginning either, just a continuation of whatever chaos preceded the momentary silence. I could be a bit biased, however, since my toddler still isn’t sleeping through the night. No, that’s putting it mildly. He refuses to sleep through the night. He abhors bedtime. Perhaps my son was a Welsh poet in his previous life?

Renamed "Ode to a Toddler's Bedtime"

Renamed “Ode to a Toddler’s Bedtime”

Work becomes at best a hiccup and at worst a reprieve from the routine of the day. I don’t ever want to treat work as an escape from motherhood nor do I want to resent work from tearing me away from my son. It’s a conundrum and not just a maternal one. My husband similarly knows this back-and-forth game as well. He works a full-time, physically demanding job and usually has weekends off. He occasionally is jealous that I get, as one could call it, our son’s “best” hours. For the most part, I’m the one that has him during the fun, play time of the day while my husband is there just as Max is waking up or getting ready for bed. As the old saying goes, “The grass is always greener on the other side.” Or as parents say, “How come the baby never cries when he’s with you?”

This might have something to do with it

This might have something to do with it.

I often think, “If I just had more ____, then I could breathe easier.” Whether it’s sleep, time, money, help, etc., I’ll convince myself that it would be the miracle cure to whatever happens to be stressing me out at the moment. Yet my biggest realization about motherhood is that I can’t control everything and micromanaging is rarely the answer. Yeah, sure, I had the realization, but that doesn’t mean I acted on it. Despite my repeat viewings of Frozen, my Type A Personality prohibits me from letting it go.

Grumpy Cat gets me on so many levels.

Grumpy Cat gets me on so many levels.

Like most working parents, I wear many hats in a 24 hour period. I’m an employee, a mother, writer, wife, sister, friend, and the list doesn’t end there. I’ve found it’s healthy to complain, sometimes I should say no, and asking for help is never a sign of weakness. There are huge life lessons I’ve learned and growing pains I’ve gone through in adding “mother” to my résumé. Yet with all the soul-searching, usually the answer to my problem isn’t some grand sentiment that you’d find in an”inspiring quotes” Google search. Sometimes the solution is quite simple: Mommy wants a nap. Who’s with me?

"So that's 1, 2, 3, 4... 957,015 in favor?"

“So that’s 1, 2, 3, 4 ….. 957,015 in favor?”

What’s Your Mom Style? Part II

In last week’s post you met the “Helicopter Mom” – and her associates, Tiger Mom, Lawnmower Parent, and Peacock Mom – which might’ve felt like looking in a mirror or perhaps reminded you of someone you know.  Now for a swing in the other direction, we’ll be looking at the…

Crunchy Mama

Like the name says, these mamas are as crunchy as the granola they love to munch on 😉  Sometimes mainstream media gets a kick out of making “hippie” puns for a quick laugh, but to Crunchy Mamas, their parenting style is no joke!

 

Profile:

Crunchy Mamas can range from the casual, cloth diaper kind to the all-natural, green extreme.  But in general, most of these mamas shun mainstream parenting traditions, reject hospital births and circumcisions, and opt out of processed food and synthetic materials.  They prefer discipline-free parenting, use essential oils and homeopathic remedies, choose home births, and highly esteem breastfeeding and vegetarian/vegan/paleo diets.

Well when you put it that way...

Well when you put it that way…

Pros:

There’s a lot to be said for giving your children a technology free and fruit ‘n’ veggie filled childhood.  Crunchy mamas strongly value health and wellness in their household.  If being “crunchy” means teaching your children to eat well and respect the environment, then that’s not so bad (even if that means poppin’ a placenta pill or two!)

Look at the healthy puppy!

Look at the healthy puppy!

Cons:

Some criticize Crunchy Mamas for being too far off the grid when it comes to the extremes of this parenting style.  Breastfeeding your child well beyond their toddler years, rejecting public school and traditional education settings, and perpetuating a general mistrust of modern medicine could potentially lead to issues for both mother and child down the line.

Dependency is a possibility

Dependency is a possibility

Subtypes:

Attachment Parenting Mama: 

Where the Crunchy Mama focuses on physical well-being, the AP mother emphasizes emotional healthiness.  Even before the baby is born, the AP Mama is already preparing herself by eliminating any negative energy prior to birth.  Baby’s cries are viewed as non-verbal communication to which the mother should always respond sensitively.  Skin-to-skin, breastfeeding, baby-wearing, and co-sleeping are all trademarks of Attachment Parenting.

A perk of baby-wearing: Adorable costumes

A perk of baby-wearing: Adorable costumes

Ahimsa Parenting:

The Crunchy Momma focus on physical well being and the AP moms emphasize the emotional side of things, but the Ahimsa Mama strongly values spiritual wellness.  This yogi mommy is all about bringing up socially conscious children in a mindful environment.  Ahimsa, popular in Eastern belief systems like Hinduism, Buddhism, and Jainism, is a Sanskrit term meaning “non-violence.”  Just like Ghandi, this peaceful parent wants nothing more than harmony and respect amongst all living creatures.

If a kitten and puppy can get along, so can we

If a kitten and puppy can get along, so can we

 

 

So there’s the second installment in our series on the different parenting styles of moms.  What did you think?  Is this “Green” style up your alley or is it too “hippie-dippie” for your liking?  Share your thoughts below and make sure to check back next Monday and see if the new post is more your cup of tea!

How Chronic Illness Prepared Me For Motherhood

Math and I aren’t really best friends.  In fact, we’re barely on speaking terms.  There is one thing that Math and I have in common: a love of Venn Diagrams.  Get it?  “Have in common” haha, oh man, puns.  Point being, a light bulb went off for me recently when I was thinking about how my chronic illnesses interact with my new-found motherhood.  I started thinking about what the two things have in common and how having a chronic illness got me ready for the challenges of motherhood.

Thank you, MS Paint

Thank you, MS Paint

5. Just Dealing with It

Not all of us are lucky enough to live life without worrying about finances.  For me, I worked two jobs to put myself through college.  Looking back, I have no idea how I managed to do all of it.  Actually, I have no idea how I manage to accomplish a lot of things.  But, just like many people with a chronic illness, when I am told I can’t do something, I am just that much more determined to do it.  So you learn to deal with it.  Have to pull an all-nighter to cram for finals but you’re in the middle of a flare-up?  Tough cookies.  There are just some things in life that you really can’t bail out on no matter how much your chronic illness sucks.

If only I could fix my scoliosis like this

If only I could fix my scoliosis like this

And learning to just deal with the suckiness of it all turned out to build up this thing I call a “Stamina Callus.”  Just like you need calluses to be an awesome guitarist (I think?  I don’t know I’m not musical), you need to have a certain stamina level to survive motherhood.  So when the baby needs to be fed and I’ve only had 2.7 seconds of sleep, I can just do it.  Thanks Stamina Callus!

4. Compensating

Compensating, to the average person, means to counter-balance something.  To a person with a connective tissue disorder, it means constantly shifting your weight or changing your stance in order to prevent or manage a dislocated joint.  I was diagnosed with Ehlers-Danlos when I was a teenager, but I had been living with it my whole life, obviously.  Even from a young age, I remember wondering how my T-Ball teammates could just jump off the bench and run on the field.  Whereas if I had done that, my hip probably would have given out and I’d just wipeout before even exiting the dugout.

So funny, but so true

So funny, but so painfully accurate

So bending over to pick up a fifteen pound infant a gazillion times a day really didn’t seem so bad after a lifetime of faceplants.  I already had experience balancing, being uncomfortable, and knowing when to ask for help to avoid a really bad spill.  And trust me, once you have such precious cargo in your arms, you become even more aware of the dangerous, slippery world around you.

3. Sleeeeeep

Clearly nothing compares to the lack of sleep you experience once you become a mother.  But I would bet good money (like four bucks, maybe?) that the fatigue associated with Lupus and other autoimmune disorders could be a close second.  Lupus fatigue also comes with a pesky side of anxiety.  It’s like you can feel it coming on, yet you know you have little to no control over it.  Imagine you are driving a semi-truck on an icy road on the side of a mountain and right as you are about to go around a scary curve, this blindfold begins to descend over your eyes and you are defenseless.

Supernatural GIFs are always appropriate

Supernatural GIFs are always appropriate

The fatigue/anxiety combo actually was a pretty accurate test run for being a new mom.  In those first weeks, you’re desperately exhausted, yet every time your head hits the pillow, you immediately panic thinking the baby needs you.  I’m not gonna lie.  That panic is still with me almost eight months later.  I still hear “phantom cries” and get up to check on the baby “just one more time.”

2. Must… Remember…To…?

Have you ever walked into a room and completely forgotten why?  Well, some people with chronic illness experience these “mental fog” states on a fairly regular basis.  With the amount of times I’ve searched for my keys whilst holding them in my hand, you would think I was driving to get the early bird special with my AARP discount.  Not only do we experience lapses in both short and long-term memory, but we can be absent-minded as well – and not in that adorably awkward, professor way.

Totally believable

Totally believable

Long before pregnancy or motherhood had me putting dishes in the fridge, I was bringing the remote into the bathroom.  That makes for a really weird sentence, but you get the point.  I guess I just wasn’t as rattled or shocked by memory lapses since that had become the norm long ago.

1. Time for an Epiphany

Once, when I was walking across the stage at my hard-earned college graduation, I suspected it.  Then, again, after fighting through red tape and regaining my license after seizures, I wondered about it again.  But it wasn’t until I held my child in my arms did I realize my suspicions were true: “I AM A FREAKING SUPERHERO!”  And guess what?  You are, too!  Women living with chronic illness and balancing motherhood are amazing.  We are warriors, we produce life, we rise from the ashes again and again.  Can you tell me how that’s not the making of a superhero?  Exactly.  So go find your cape because it’s about time you accepted the truth that you are an amazing forth with which to be reckoned!!!

Whoooo! Go girl!

Whoooo! Go girl!

Why I’m Not A Mom (and neither are you)

No, no, no.  Calm down.  No one needs to call Social Services or anything, my son is very well fed (as is evidenced by his Michelin man legs).  I’m just on my  soapbox  again.  I don’t like the label “mom,” never have.  Mom is a palindrome; it’s written the same forwards and backwards.  I also have an irrational fear of palindromes, in case you didn’t know.  The “M”s on either side of the “O” are like little bookends.  They’re little, mean bookends confining the “O” in the middle.  The word is stuck as it is and can be nothing else.  Yes, I’m writing this on very little sleep.  So allow me to explain, since my previous sentences sound like the ravings of a madwoman.

Ooooh watch out!

Ooooh watch out!

Seemingly, when you become a mother and other people begin to refer to you as a “mom,” the world around you gets a little smaller.  You’re now “just a mom.”  The media isn’t interested in you as a “woman” anymore.  Magazine articles either cater to alluring, interesting young women or to “moms” and their quilting and hors d’oeuvre making.  You find yourself wondering if you should just resign to wearing sweats and always smelling just a bit like baby spit up.  The suggested ads in your Facebook are suddenly about minivans, artichoke dip recipes, and losing weight.

Yes, FB, this is totally accurate

Yes, FB, this is totally accurate

What happened to everything else I am?  I love to travel, discuss religion and politics, sketch, and watch an ungodly amount of BBC America.  I’m still an activist for animal rights, environmental issues, gay rights, and raise awareness for invisible illnesses.  I still shop at H&M, Urban Decay, and (embarrassing as it may be) Forever 21.  Why does becoming a “mom” mean to many that I am no longer that person to so many people I’ve encountered?

I FINALLY GET TO USE THIS GIF!

I FINALLY GET TO USE THIS GIF!

I am so proud to be a mother and so humbly grateful to have received a gift that many women desperately want.  Through all the ups and downs, I would still do it again for my sweet son.  I am responsible for him and to him now.  But I’m also obligated to show him what a strong woman looks like.  What disservice would I be doing to him if I sent the message that once a woman has a child she ceases to have any other identity except that of a mother?  Or what would it imply about women who are unable or choose not to have children?  Are they less of a woman or somehow less caring?   How would he then treat women?  I hope to show him that women can be nurturing yet independent, kind yet bold, and yes girls can like mud and science and Tonka trucks, too.  I hope he will in turn exhibit respect and empathy towards others and strive to be aware of his impact as well.

because babies holding hands is adorable

because babies holding hands is adorable

So that’s why I’m not a mom and neither are you.  We’re mothers, partners, artists, goofballs, chefs, secret-keepers, dancers, nerds, and everything in between.  We owe it to ourselves and our children to be a full person, flaws and all.  Children learn so much about the world by watching what we do, how we act, what we say.  Show them, tell them that you are, not were, an artist or a nerd or a thrill-seeker or a musician.  Let them see all that you are so that they might know who they can be.

They'll grow into those shoes quickly, trust me

They’ll grow into those shoes quickly, trust me