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!

5 Stages of The Countdown

We’ve all heard of the 5 stages of grief, and for many high-risk mamas out there, the countdown to your little one’s birth can feel very similar.  You’re excited but terrified, ready for this pregnancy to be over but not sure what will happen when it ends, and the ever-present hormones are wreaking havoc on your sanity.  With less than a week to go until the “Big Day,” here are some of the roller coaster emotions I’ve been going through.

1. Denial

Maybe if I just don’t think about it, I can delay labor indefinitely?  I mean, that sounds pretty logical, right?  It seems like the closer I get to the big day, the more people want to tell me about all the scary aspects of labor, delivery, and the first few weeks home with a newborn.  Apparently it’s considered rude to just plug my ears and run away?

My usual response these days

My usual response these days

So I’ve buried my head in the sand.  Sand takes many forms, though.  It can take the form of binge-watching my favorite shows on Netflix, spending (too much) time on Etsy/Pinterest, or starting laborious arts and crafts projects.  All of which seem completely acceptable.  And worst comes to worst, I’ll just cross my legs really hard and keep the little bugger in there until I’m really ready.

2. ANGERRR!

WHAT?  You mean I can’t just cross my legs and will the baby to stay inside until I’m ready???  Preposterous!  Facing the inevitability of the situation can drive anyone to anger.  I thought I was already used to the whole “lack of control” thing when it came to my health and this pregnancy, but with time slipping through my fingers, I just wanted to yell and yell until something happened.

Yup, this is happening

Yup, this is happening

Maybe it’s because I’m pregnant, but nothing feels as good as “Angreating.”  Yes I made this word up.  It’s a combo of angry and eating, and it means exactly what you think it does.  You’re mad, feel like you’re out of options, so you pick up that tray of Oreos and just start shoving ’em in.  So feel free to shout “I’M ANGREATING!” when your significant other fearfully asks what you’re doing surrounded by Dove chocolate wrappers.

3. Bargaining

Okay, okay, you’re right.  I went a little overboard there, covered in Doritos dust and shame.  So if I start reigning in my crazy just a tad, perhaps the Universe can do me one teensy tiny little solid with this whole labor and delivery thing?  Shall I resort to yelling again until I can convince the world to cut me some slack?

This is my mantra as of late

This is my mantra as of late

I’m sure there has been some point in the middle of the night when you can’t find a comfy position, your hips are about to disintegrate, your mind is racing with WebMD photos of c-sections, and now you have to pee, that you have called out to a Higher Power for some kind of relief.  Don’t feel embarrassed, we’ve all been there, desperately offering up whatever we can think of in exchange for a shred of sanity.

4. Depression

Clearly bargaining doesn’t work, you’ve eaten all the cookies, and there is no sand left in which to bury your burdened little head.  Oh don’t mind me, I’m just going to spend the rest of my days in bed, staring at the wall, wondering where it all went wrong.  Sigh.

This is my life now

This is my life now

And according to all the forums on baby/pregnancy websites, I’m undoubtedly going to be the worst mother ever.  Perfect.  With only a handful of days until my baby is here, the reality of the situation has moved to the unbearable stage.  In less than a week, a tiny human is going to be completely dependent on me for survival, and I can’t even manage to work up the necessary energy to put on pants.

5. Acceptance

If I’m being completely honest, I haven’t fully embraced this stage yet.  I am optimistic, though.  What I’ve realized is that, whether I cross my legs or not, this baby is coming.  While it may be easy to just sit around (pantless) and eat my feelings, that’s not going to change the situation.

It sure is!

It sure is!

Alright ladies, the big day is indeed approaching!  So let’s try to put all the unsettling thoughts and unwelcome advice on the back burner and focus on really taking advantage of every moment leading up to the minute you get to meet your baby!  Get your partner or family or friends to help you with any last minute errands, treat yourself to something you’ve been putting off, and rest up mama!  GET READY FOR LIFE!!!

5 Things Your Partner Puts Up With

Yes, you are growing a little human inside of your body, so you have every right to be grumpy.  Yes, most people are jerks and life can be really hard sometimes.  But you know who is there to listen to you grumble about all your aches and pains and mean friends and rude strangers?  Your partner.  Whether you have a husband, boyfriend, life partner, whatever, let’s take a minute to stop and appreciate all they do.  Because if your partner is anything like my husband, he has put up with A LOT!

1. Trying to Understand What the Flip You’re Talking About

Attempting to read our mood swings is already hard enough for our partners.  Now they have to decode our hormone-induced rants?  Sometimes when we’re venting about girl problems or health issues, we forget that other people have absolutely no clue what we’re saying.

Me: “My RLP is really intense today.  I can’t tell if it’s my Ehlers-Danlos acting up, too.  Maybe I should do some hypermobility stretches to try to relax my pelvic floor.  Ugh, this Lupus fog isn’t helping either!”

Justin’s response:

confused-mark

Wheels are turning…

Poor Justin.  I could tell from the look on his face that he wanted to help but had no clue how to do so.  So remember, your partner is listening, but keeping your communication clear is helpful to everyone.  If you want a massage, just ask for a massage.  Your partner will appreciate your directness, trust me.  But in turn, verbally show your appreciation for their effort.

2. Being Grossed Out On the Regular

Morning sickness, hemorrhoids, hairy legs, and sitting in on awkward OBGYN visits are all par for the course for your partner now.  My poor guy has had to see some really weird stuff but he has never once made me feel like the repulsive monster I am.  He has seen me at my lowest:

This is an understatement

This is an understatement

And as much as he’s been tempted to, he has never had this reaction to my grossness:

He's thinking it, though

He’s thinking it, though

God bless him, he has seen things no man should ever have to see.  Yet through it all he has always managed to offer a kind smile, stroke my greasy hair, and even give me a hug (while holding his breath, of course).

So sweet

Now that’s true love!

3. Feeling Helpless

This was one thing I never even thought about until my husband expressed it.  As frustrating as it is to be a high-risk pregnant woman dealing with all your struggles, imagine what it’s like to be on the outside.  Your partner has to watch the person they love most in life go through unimaginably painful ordeals, and there’s not a darn thing they can do about it.  My heart broke a little the day he told me how helpless he felt and that he would give anything to be able to take away my hurt.

Gets me every time

Gets me every time

Whether your partner has said it out loud or not, I guarantee you they have felt helpless and vulnerable at some point during your pregnancy.  Stop and realize how amazing it is to have someone love you that much and be thankful that same person is going to be the one who is by your side to help you nurture this new life.

4. Suppressing EVERYTHING

Let’s have a moment of honesty here, ladies.  We complain.  About everything.  A lot.  Hey, we deserve to, don’t get me wrong.  But your partner is often left mute in the wake of your rage.  My husband works two jobs, both of which are physical and he rarely gets a day off.  But will you hear him complain about how his legs hurt or how frustrated he is?  NOPE.

Quiet rage

Quiet rage

Although I would like to think I wouldn’t go all Oxygen “Snapped” on him if he were to complain to me, I can understand why he stays silent.  And whenever I ask him if he’s hurting, he usually just says, “I’m fine,” or shrugs it off.

Poor guy

Poor guy

We should remember to hug our partners because they’re hurting sometimes, too.  Sure, they don’t have to worry about pushing a baby out of their delicate downstairs business, but that doesn’t mean they aren’t frustrated or in pain as well.  So pick up a card, or hug him, or do a little something to let him know that his emotions are valid and you are there for him, too.

5. OMG YOU’RE HAVING A FREAKING BABY!!!

Though you would think this goes without saying, sometimes it actually takes a while for this realization to dawn on your partner.  Every person (even you) has that “HOLY GUACAMOLE!” moment where it hits you that everything is about to change.

Totally understandable

Totally understandable

Even if your pregnancy was planned, it is completely normal to have a freak out moment.  Where you get off easy, though, is society thinks it’s more acceptable for women to be emotional.  If your partner is a man, he has it a little tougher.  Whether it’s from peer pressure or decades of society making him feel this way, your guy is having trouble reconciling his realization with the emotions he’s feeling on the inside.

Yes.  Yes you can

Yes. Yes you can

Let him know that it’s okay for him to feel nervous.  The worst thing you can do is buy a one-way ticket to “Denial Land.”  If you try masking your concerns and he’s busy stifling his emotions, you’re just asking for things to blow up in your face.

You asked for it

You asked for it

Even if your partner isn’t big on talking and feelings, make the effort to have a little sit-down and lay your worries out on the table.  Chances are you even have similar fears.  The sooner you both acknowledge that this is indeed a big deal and it probably won’t be easy, the sooner you can start moving ahead together.  Don’t fall prey to the trap of each person having to bear his/her own burdens.  And when in doubt, breathe into a paper bag for a minute and look at this adorable bunny eating a flower:

SO CUTE

SO CUTE

In conclusion, remember that your partner has feelings, too, and that this is scary for both of you.  Verbally and physically demonstrate your appreciation for all the things they have to put up with during this trying pregnancy.  Kindness matters.  And hey!  Who knows?  Maybe that sweet note you left him will get you a back massage tonight!  But seriously folks, be nice to your partner.  They’ve had to hold your hair while you’ve puked.

How to Be Freaking Classy!

With all the raging hormones flowing through your body, your patience may be wearing thinner and thinner as the days go on.  As for me, I started out trying to be really polite and friendly all the time.  You know, never wanting to be a bother, or some nonsense like that.  But as time went by, I had less and less tolerance for the weird and awkward things people would say to me – or worse – behind my back.  Don’t you just loooove frenemies?  So I decided I wasn’t going to kill them with kindness, I was going to kill them by being fabulously classy!

“Are you sure you should go through with this pregnancy?”

First off, rude!  Let me point out, this was an actual question I was asked within the first few days I made my pregnancy public.  Sure, most anyone who knew me was aware of my health issues, and I can see how that may raise questions about my pregnancy.  But for the love of God, don’t ask a woman – especially not a high-risk one – if they are going to keep the baby!!!

What I Wanted to Do:

Slap-Happy-futurama

Don’t act like this wouldn’t feel great

Boy did I want to do this, but I didn’t.  Instead I chose to be freaking classy!  I’m talking Don Draper level classy!

Don't smoke, kids!

Don’t smoke, kids!

 

The Classy Thing to Do Instead:

So when someone asks you if you’re going to keep your child, say, “It means a lot to me that you’re so concerned, but choices regarding my baby’s life is a private and delicate matter and I would appreciate it if you treated it as such.”

There’s one thing that is crucial to this working.  As soon as you say your devastatingly classy line, RUN AWAY!  Don’t give them time to utter an ignorant response.

RUUUN

RUUUN

 

“You think that’s bad?  Let me tell you MY way worse story…”

There’s always gotta be a one-upper.  Whether this is a friend, coworker, frenemy, or an eavesdropping stranger, the dreaded one-upper will find a way to take any story, any experience and attempt to make you feel insignificant.  Which is exactly how you want to feel when your emotions are all over the place and you’re worried about the health of you and your baby, right?

What I Wanted to Do:

We all know this person

We all know this person

Aside from cutting the drama queen off, you have only two choices.  One, you let the person finish and say something snarky like, “Okay, do you feel cool now?”  But that’s probably best left as a scenario you play out in your head to amuse yourself.  Second choice, the classy one.

The Classy Thing to Do Instead:

Let the one-upper finish, and respond with, “I’m sorry for your experience, but I’m going through a very trying time right now and would appreciate the same sensitivity and empathy you expect from people when you tell your stories.”  And then, as always, make a quick exit.

So true, Mary, so true

So true, Mary, so true

 

“Maybe you’re doing something wrong.”

“And maybe you’re a giant doodie head!”  But seriously, it’s like your pain and struggles can’t just be the results of an illness, you must be somehow responsible for jeopardizing your baby’s health.  For every one-upper out there with an awful story, there is a Disney princess who just can’t understand why you’re having a hard pregnancy because hers was just so darned magical.

cinderella-spin2

What I Wanted to Do:

When hearing about their blissful, worry-free experiences while I was in the midst of my own personal hell, I just wanted to shout, “GOOD FOR YOU!” and stomp out all sassy-like.

*stomp stomp stomp*

*stomp stomp stomp*

 

The Classy Thing to Do Instead:

Be honest.  You may not want to be so candid, but it’s your best bet.  Whenever the princess starts going on about how when her water broke, rainbows and fairy dust spilled out instead, just smile and say, “I’m so happy that you had an unusually easy pregnancy, but it’s really hard for me to hear about it when my pregnancy is so uncertain and filled with problems.”  Sometimes laying it all out on the table like that will shut up any rude people.  And then peace out as usual.

Deuces, I'm out

Deuces, I’m out

 

“If you think the pregnancy is hard, wait ’til the baby comes!”

Gee, thanks.  As if I wasn’t already nervous enough, now I have to worry about how I’ll be able to take care of my baby.  I started thinking, “What if my illnesses are too much to handle?  Oh God, what about the actual delivery?  What if something goes wrong?  What if the baby is sick?” 

What I Wanted to Do:

Solid comeback

Solid comeback

How exactly did that person want me to respond anyways?  “What?  You mean I have to feed and change him everyday?!  Whoa whoa whoa, this changes things!”

The Classy Thing to Do Instead:

“Wow!  You really know a lot about post-pregnancy life and babies.  So you won’t mind helping me out if I need it then?”  BOOM!  Either they’ll laugh it off and run away or they’ll awkwardly agree to helping you.  It’s a win-win!

kthxbai

Love ya, mean it!

 

“You Need to Gain More Weight!  You’re So Small!”

I know most women get flack for the opposite, getting judged for putting on too much weight.  But because of my Lupus flaring up and making it difficult for my body to process fats, oils, and fiber, my morning sickness mutated into a debilitating battle with food.  Before I was pregnant, I weighed 106 lbs (which is healthy for my 5’2 frame).  At the lowest point in my pregnancy I only weighed 90 lbs.  For someone of my petite stature, the weight loss took a more drastic toll on my body and it made me extremely concerned for my baby.  So when this woman thought she was being funny, cute or paying me a compliment, she was actually reinforcing my fear that my inability to maintain or gain weight was going to be bad for the baby.

What I Wanted to Do:

Fear>Sadness>Anger. Repeat.

Fear>Sadness>Anger. Repeat.

Sometimes you just need to have a big ol’ ugly cry fest full of pillow punching and dying whale sounds.  But sometimes you have to just rise above it and channel your inner diva.

Ya betta werk!

Ya betta werk!

 

The Classy Thing to Do Instead:

Most of the time, the people that make comments about your appearance are not going to be friends or family.  So if it’s a stranger or acquaintance, you have a little more leeway with your sass level here.  How I chose to respond was, “Thank you!  Baby is doing fine for now, but I guess I better start eating more Krispy Kremes, huh?  And can you believe I don’t even have stretch marks?”  Just try not to waste your time on people who fixate on the superficial things.  You’ve got more important things to think about, and their snark comments aren’t one of them!  Focus on you, booboo!

people-worst-nick

Nick is so wise

So those were the top five rude/awkward/weird things I have actually had people say to me during my pregnancy.  I try to remember that most of the time these people are just incredibly oblivious to the fact that what they are saying is awful.  I also try to remind myself that these people think that what they are saying is well-intentioned.  Either way, you’re the one who is in charge of how you let people make you feel.  And, honey, you are you too freaking classy to let these haters bring you down!!!