February 2013 archive

What It’s Like to Be An Allergy-Mom

My son is a funny, kind, curious 9-year-old kid who likes to draw, swim, learn about whales and play Legos and tag with his friends… oh, and he happens to have food allergies. Let me be clear on the phrasing; he’s not an allergy-kid. He’s a kid with allergies. While they are very much the largest consideration during his daily life, food allergies do not define him.

In an ironic twist, if you ask him to define himself, he’ll say he loves food. In his lunchbox he carries an epi-pen and a key chain that he made that says “Jack K. Loves Food.” It doesn’t matter to him that dairy, egg and all nuts aren’t included in that food because they have never been an option for him. He doesn’t miss them because he’s never known any differently.

He was rushed into intestinal surgery when he was 3 days old. After a full recovery, he went into anaphylaxis when he had formula for the first time at 15 weeks old. So our household has been dairy, egg and nut free for nine years now, and as parents we’ve also never known any differently.



And that’s what this story is about. Not curing, treating, studying, diagnosing or even living with food allergies. It’s about parenting with food allergies. While my son is a child with food allergies, I on the other hand, know that I am one of those allergy-moms. The reason for the distinction is because it seems to me that kids are more accepting of food allergies than adults are.

Fortunately, my son is socially and emotionally okay with his food allergies. At this age, he seems to approach his allergies with the appropriate level of seriousness and respect, yet not be frozen in fear over them. Other kids have been supportive and matter-of-fact about his allergies and even look out for him during lunch and playdates. As we have all heard and read in various studies, allergies are on the rise with today’s generation of kids. Food allergies have always been a part of their world. Many children’s musicians sing about food allergies and popular cartoons have characters with allergies. In fact, thanks to Disney’s Prep & Landing, our kids think Santa has a nut allergy and leave him safe cookies.

But not us adults. Food allergies are pretty new to us. Most of us never grew up with a friend or sibling with food allergies. Unfamiliarity leads to a misunderstanding and a missed tone about food allergies. So while our kids seem to get it just fine, there’s a great deal of mental reconditioning and a real shift in mindset that needs to happen for us adults.

We all know that we parent best when we parent together. So I’m providing the below perspectives on parenting with food allergies so all of us can better understand what the collective we is all about and keep all of our kids — your kids and my kids — happy, healthy, supported, loved and safe.

1. As the parent of a child with food allergies, it makes us crazy when people make any sort of assumption about food allergies other than this one assumption — a food allergy is a life-threatening condition that causes children to stop. breathing. immediately. It’s very real… and it’s very scary.

2. As the parent of a child with food allergies we want you to know that this is not a lifestyle choice. While it’s admirable that some people choose to eat healthy and be aware of the ingredients in their food, we aren’t standing in the grocery store aisle reading the label on everything that goes into our cart as a hobby. We’re studying those ingredients to make sure there’s not an obscure ingredient that could kill our children. (Did you know that caramel coloring is made out of dairy? Are you familiar with the difference between sodium lactate and potassium lactate?)

3. As the parent of a child with food allergies there is not a playdate or school activity that our child will attend without us having a discussion with the hosting parent, event chaperone or teacher first. Every event my child has ever participated in (ever!) from t-ball to school to summer camps has always been preempted with a medical conversation first. We know we’re perceived as high-maintenance parents. And we feel badly about that because the level of diligence we’re forced to have about the subject of food allergies may not be consistent with the level of diligence our personalities would normally reflect.

4. As the parent of a child with food allergies we have laid awake at night, wondering if we’ll be able to spot the signs of our child’s throat closing.We’ve been told that anaphylaxis can happen in less than two minutes, so not only do we wonder if we’ll be able to identify this emergency, we wonder if our child’s teacher, babysitter, grandparent, recess monitor, friend or coach will know when our child can’t breathe.

5. As a parent of a child with food allergies we have laid awake at night, wondering if our child will ever be able to attend a keg party in college or share a random kiss. And if he does, who will carry his epi-pen?

6. Speaking of which, as the parent of a child with food allergies we leave the house remembering the basics like phone, wallets, keys — and epi-pens. We know not to leave them in a car that is too hot or too cold and we always carry at least two, if not seven. Even with insurance, they are $25 a pop, so we treat them with the utmost respect for the year that we have them before they expire. But that’s all ok, because those little devices carrying a shot of adrenaline could save our child, or at least sustain them, until the ambulance arrives.

7. As the parent of a child with food allergies, we sit outside every birthday party or sports practice while other parents leave. 

8. As the parent of a child with food allergies, we balance the emotional impact of being a helicopter parent against the medical threat of having our child go into anaphylaxis when we’re not around. We feel guilty and scared of both.

9. As the parent of a child with food allergies, we have never relaxed, sat back and actually enjoyed or tasted a meal in a restaurant. Never. You see, we spend those meals playing and replaying the emergency plan in our head while quietly observing our child’s breathing as he enjoys his meal.

10. As the parent of a child with food allergies, we regularly attend medical appointments in big time children’s hospitals where we can’t help but see other patients and deeply suffering families. And upon this realization, we are humbled and grateful and reminded of just how fortunate we are that we are the parents of a child with only food allergies. While our child has a life-threatening medical condition, it is manageable. And as long as we have help from you and others in managing it, our child is alive — and that’s really something!

So yes, living with a constant threat to his life is quite a big weight for my 9-year-old son to carry on his small shoulders. And he carries that weight pretty well. But he will never carry that weight alone. As his mother I carry it, just as his father carries it. His sisters carry it and his grandparents carry it. His aunts, uncles, cousins and friends carry it. And just by reading this, you too have lightened his load. So thank you for reading. Thank you for taking a moment to try to understand. And thank you for helping to keep all of our children safe.


Have Mini-Van, Will Travel

Today we traded in our mini-van.  I have waited a long time for this day!  Can you tell by the big goofy smile how I excited I am?  Then why does it feel like some sort of bittersweet moment and significant passage? Because it is.  

As we cleaned out the mini-van we found pacifiers that were once used by the kids who now tote around sports water bottles.  We stumbled upon long lost DVDs filled with smiley, happy characters and lyrics, that after hearing them fifteen times in a row, we once cursed.  Those DVDs have been replaced, first by Leapsters, and later by activities on the iPad…that after hearing detailed descriptions of the games, we now curse.  (Maybe we shouldn’t have been so hard on The Wiggles.  Are they really any more annoying than a Minecraft creeper?)

While the kids are occupied with such devices, its in the mini-van during long drives back and forth to our home state of Ohio that my husband and I usually do most of our life strategizing.  Once upon a time, during one of those big life-planning/decision-making conversations, we broke down childhood/parenthood into three 7-year stages, each with somewhat different needs:

  1. The young kid stage.  In this stage, the main concerns are safety and survival.  Your eye is trained to spot every uncovered electrical outlet in a room and you cut all food into small bite sized pieces.  You’re tired and messy in this stage and so is everything around you…carry baby wipes.
  2. The school-aged kid stage.  In this stage, the main concern is hauling everyone around to various activities and events. Well that, and trying to foster a connection to family all while laying the groundwork for social emotional confidence for the upcoming teen years.  If anyone has any tips for me on how to achieve both, those important touch-point family dinners and an evening sports practice, please do share.  You will spend a lot of time sitting in school and sportsplex parking lots in this stage…carry a magazine.
  3. The teenage stage.  I’m not here yet, but I for one am just planning to hold on tight, buckle-up and know that I once again won’t sleep, but for different reasons.  I can think of about a half dozen things I anticipate carrying at this stage…none of which are entirely appropriate to mention right now.

Those are our stages and that was one of our more productive road trips.  There have been many.  From New York, to Florida, Boston, to Ohio, Chicago, to Washington DC, and Canada, in the seven years since we’ve had it, our mini-van has logged 134,000 miles…its got some distance under its wheels.  From Times Square to the preschool carpool line, the mini-van has not only been our shuttle for great family travel adventures, its also been our carriage for that first, young kid stage.

From nursing, to potty-training, teaching the ABC’s, explanations about dinosaur bones and Heaven, discussions about medical decisions, and inquires about homework.  I guess in the last seven years as a parent I can say I’ve got some distance under my wheels too.

When we first surrendered to the idea of those convenient side sliding doors, I was just transitioning from East Coast urban (self-proclaimed) big shot career woman in her twenties to Midwestern suburban stay-at-mom in her thirties.  Lets just say the transition wasn’t going so well and a mini-van didn’t exactly help the identity crisis which was underway. 

We made jokes with our friends about our big purchase and called it GABI for ‘grin and bear it’.  We laughed about our sixteen (16!!) cup holders and even told the poor, confused kids working at drive-thrus about them as we smiled and handed back the cardboard drink holders they tried to give us.  

I watched the viral videos spoofing mini-van parents and half laughed, half cringed.  After a while I accepted my mini-van lifestyle and even told friends about its attributes once they found themselves in the market for this vehicle that they too said they’d never buy.  And believe it or not, I eventually grew to be grateful for the mini-van — because I was very grateful for the reason that we needed a mini-van.

But the time has come to part ways.  And while the kids are a little messy with sentimental thoughts for the mini-van, I’ve had my moment to give thanks for the many safe journeys.  For the long journeys, short journeys, literal journeys and figurative journeys.  Thank you.

So now, as we embark upon the car that will carry us through this next stage of parenthood, I’m making a few rules of things I would like to strive to not do in this next car…or this next stage, for that matter (true stories: all of these things did indeed happen in the mini-van…yep, its a good thing that we’re all growing up and moving on):

1.  No fruit snacks.
2.  No stickers.
3.  No coffee (boo!)
4.  No Diet Coke (double boo!)
5.  No french fries.
6.  Lets just go big and say no drive-thrus.
7.  No screaming during left hand turns.
8.  Every Elmo song will be immediately followed by a Wilco song.
9. All potty moments will happen outside of the car from now on. 
10.  No cracking the windows, and letting the kids play inside the car while I sit on the porch steps and read a People magazine.
11.  No breastfeeding…parked or moving.  Yes, proud to say in a moving car, child still in the carseat and no, not as the driver.  
12.  No playing with rear overhead lights, causing them to be left on overnight.
13.  No raccoons in the car (side sliding doors don’t pinch fingers, but they do have an unexpected hazard when you forget to close them overnight).
14.  No squirrels in the car (see #13).
15.  No mouse in the car.  Don’t know how it happened, but it did and that’s a post for another time.

XOXO to my GABI:  well beyond just grinning and bearing it, I think I can give you credit for several full-on belly laughs over the last seven years and 134,000 miles on the road trip of life.  Ahhh shucks, I never did use all sixteen of those cup holders!

Our Family Love Story

I originally published this post on The Huffington Post on February 13, 2013.  It has also appeared on iVillage Australia.  My hope was that it would reach just one person who needed it, at just the time they needed it.  I’ve been deeply moved by the many responses and my heart has broken and mended many times with the stories I’ve heard from people who were moved by it, could relate to it on some level or had gone through something similar…some 40 years ago, some truly the night before.  Love spreads, love spreads.  Thanks to you all for helping me spread some love this Valentine’s Day.
Our Family Love Story
Valentine’s Day is a tricky holiday for my husband and me. Seven years ago, in 2006, Valentine’s Day stopped being Valentine’s Day and started being simply “the day.” As my husband hurried off to work he gave me three cards, one from him, one from our 2-year-old son and one from the baby that had been growing inside of my stomach for the last 38-1/2 weeks and who we were excited to meet just 8 days later.
As I opened the card from the baby, a feeling of dread came over me… I had been worried about a lack of fetal movement since the evening before, and I felt that pang of panic that all pregnant women experience right before the reassurance sets in. I read the card from “Baby” and thought, I don’t even know if this baby is alive anymore. About 90 minutes and some phone calls later, I’d find myself next to an ultrasound machine in my OBGYN’s office, cold jelly rubbed on my stomach and hearing an anguished phrase from my doctor that is forever etched in my mind, “I’m so sorry, Carissa. There’s no heartbeat.”
The remainder of that February 14th was filled with consultations from medical professionals and perinatal loss specialists, phone calls to our parents and siblings four hours away and emails to friends. Having a priest come and sit in your living room is not usually a part of Valentine’s Day celebrations. We spent the day making decisions and deliberations that no parent should have to make. It’s never natural for a parent to plan for their child’s funeral arrangements… but it’s especially unnatural when it’s done at the same time they are planning for their child’s labor and delivery.
I don’t even remember if my husband and I originally had plans for that Valentine’s evening. In seven years, I’ve never thought to wonder that or try to recall that memory. Its doubtful, given that it was the middle of winter in Chicago, we had a toddler at home, few babysitters and I was at the end of my pregnancy. But if we had made plans, I am certain the reality of our evening was far from what we would have done on that lover’s eve… we spent that evening in a hospital where laminaria, which were described to me as “seaweed sticks,” were inserted into me to induce labor for a deceased child.
Doesn’t sound very romantic, does it? No. It wasn’t. But while this is a story about heartbreak, it’s also a very true love story. A true love story between my husband and myself. And a true love story between us and our children.
Together, we faced one of those terrible and beautiful life moments. For better and for worse… we did it. My husband/life partner/co-parent held my hand during the laminaria insertions and patted my back when I awoke a few hours later, back in our home, to contractions. Together, we tossed and turned overnight until at 4 a.m., together, we kissed our toddler and drove on a cold, gray morning to the hospital. Together, we parked the car in the garage and quietly put one foot in front of the other and walked to the check-in area. Together, we tried to ignore the happy faces of expectant parents in the elevators with us or the balloons that bopped up and down tied to floral arrangements that said “Its a Boy!” Together, we looked the other way, choked back tears and steadily made our way forward.
Together, we delivered our baby. For many heartbreaking hours, I labored and breathed. He paced and analyzed my contractions on the eerily silent monitor. There was no baby’s heartbeat to listen for. And when it came time to push, there was an ironic wave of adrenaline that swept over us both. While we knew the outcome was going to be tragic, we still were eager to see the beautiful child that we, together, had created. And so I pushed, and he locked eyes with me and together we heard our beloved nurse inform us in a whispered voice, “It’s a girl.” Together, we processed the silence which was immediately filled not with a newborn baby’s wail, but with her mother’s wail.
We spent the next 12 hours together with our daughter, admiring her, bathing her, taking in every single thing about her beautiful, perfect body… knowing that our time with her was fleeting. Together, we gave her the name we had always hoped to give a girl. Together, we beamed with pride while her grandparents held her and admired her features. When it was time to leave, our son arrived to briefly see his sister and together we left with no wheelchair, flowers or fanfare. We looked back at our daughter and our little son turned around and said, “Bye, Baby.” Hand in hand, we stepped out of the hospital and back into a life that would be forever changed.
In the seven years since our daughter’s birth and death, our family has grown and happiness has returned to not just most of our days, but to all of our days. Together, my husband and I grieved — and continue to grieve. Side by side, we went to support groups and counseling and doctor appointments. Together we met with specialists around the country who told us there was no explanation for this event that happened in an instant. Together, we prayed and cried and screamed… sometimes at God, sometimes at Life, sometimes at each other. When one of us would wake to the other silently sobbing in the middle of the night, we never said a word, but just quietly grasped our hands together. Together, we continued to be lively and fun and busy with our toddler. We left him with grandparents and took a trip together and drank way too much wine together. Together, we made the painstaking and brave decision to go through more pregnancies. Together, we have welcomed two more daughters and wept with joy and relief upon hearing their borning cries. Today we are a chaotic, busy, grateful and happy family and together we have created four beautiful children, each of them a miracle. But only three of them are living.
We’ve made our daughter a part of our story. As a family, we reference her often. Early on, we decided that we didn’t want this day to be associated with sadness or despair, so we decided that every year on February 14th we’d earmark it as a special day for our family to celebrate each other. We take a vacation or spend time at a special place and call it her “Birthday Trip.” We laugh and play and think about each other — and we think about her.
So on February 14th, we don’t celebrate Valentine’s Day, we celebrate something else: a gift from our daughter: our love story. It’s a story that begins with us being wiser, more confident and more protective of our emotions and one another. A story that shows us the resiliency of our marriage, and allows us to love more deeply. In this story we have perspective. We are better, more compassionate listeners and friends in this story. As a family we will always LIVE, have adventures and fun. We will find a way, not find an excuse. And in this story, we have a depth of gratitude that was impossible before. We know just how low the lows can be, so we cherish and savor and defend these highs. I’m so proud of our family love story.
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Taking Time for Curiosity

We live in Chicago.  Its cold in Chicago in February.  Yet, I allow my 2-year-old to venture outside to go to and from our car in a light weight (pink!) raincoat, short (animal print!) capri pants and a miniature (polka dot!) baseball hat.  Partly because I subscribe to the natural consequences theory, but mostly because she’s the third child and we have places to be….in fact, we have many places to be throughout the day due to the busy schedules of her older brother and sister.  And frankly, there’s not a lot of time to negotiate with a toddler.

When her big brother was her age, we had the luxury of time and choice.  I often comment on what a handful my 2-year-old is as I chase her up and down and all around the sidelines of one of her siblings’ practices.  But then I remind myself that when her siblings were her age, I wouldn’t choose to leave the house after 4:00 pm.  Not during the witching hour!  Why would I bundle up a toddler and take him or her outside on those cold, dark evenings?  On the rare occasion that I did venture out at that time the activity would have been focused on something that was meant for them, not something as utterly un-toddler friendly as the sidelines of a dance class or basketball game where the little one is expected to simply watch, but not participate.

Not only is my 2-year-old dragged out of the house in the evenings for her sibling’s activities, I wake her up from her nap at precisely 2:50pm every single weekday so we can pick her brother up from school.  No time to ease back into the warm and cozy day….pulled right from the crib to the car seat or stroller depending on the weather.

That’s all ok.  I feel a little badly about it, but I know it’s the reality of birth order and the reality of the finely choreographed schedule that our family of five keeps.  I sincerely take all of our needs into account when booking activities for any member of our family to ensure that we run as smoothly, and peacefully as possible.  Keeping us just booked enough to participate in activities we all enjoy, but not so overbooked that we are all exhausted and grouchy.  Its taken some practice and quite a bit of fine-tuning, and we’re mostly there…yet still, my 2-year-old is often leaving the house in the attire and manor described above because as I said before, we have places to be.  Places to be, now!

Racing out the door, moving in auto-pilot mode, I grab my coat, wallet, keys, phone….and child.  Just another thing to move, to transport from point A (our backdoor) to point B (our car).

“Mama, I walk,”  the 2-year-old clad in mix-matched prints says.

“Oh Vivi, come on,” I try to convince (thinking:  “No way, little lady!  Its just easier if I carry you.”)

“Mama, I walk,” she gives a firm, and adorable, expression.

“Ok, ok, let’s go then,” I give a sarcastic smile (thinking: “Lets just hurry, come on, come on!’)

“Mama, I walk,” she repeats

“Yes, Vivi walks,”  I reassure (thinking: “Yes, I know…we just talked about that”)

She runs ahead 5 feet, then back tracks 7 feet…turns and giggles, then runs ahead again and reminds, “I walk, Mama”.

“Vivi, come on…aren’t you cold?” I say getting a bit more firm (thinking:  “I’m cold!  You must be cold in that light weight coat you insisted on wearing.”)

With that she falls to the ground and fakes a cry.

“I cry, I cry,”  She declares.  Followed by a request, “hug, hug?”

“Ahh, honey, here’s a hug,” I offer outstretched arms (thinking:  “I-yi-yi!  But hey, here’s my chance to swoop her up and carry her the rest of the way!”)  And I start to do just that.

“NO!  Mama, I walk,” she screams as her legs swing wildly.  I place her down again.

“Ok, you’re a big girl.  You walk,”  I surrender (thinking:  “Victory for Vivi.  Whatever you want, lets just get going.”)

“Mama, I walk,”  she giggles and takes off in a trot.  Abruptly stopping, she points down to the ground, “Mama, what that?” she says and puts on an exaggerated puzzled look and her palms to the sky.

“That’s a leaf,” I answer (thinking:  “Darn it! I saw that leaf on the sidewalk this morning, I should have known to remove it before she saw it.”)

“A leaf?  I touch?”  she asks.

“Yes, you can touch it…its a leaf.  It grows on trees,”  I explain (thinking:  “She doesn’t yet have the context for a leaf in her little mind.”)

“A leaf?”  she picks it up and studies it, turns it around and repeats, “A leaf on ground, not on tree?”

“Ahh, yes, Vivi…this leaf is on the ground.  It fell from the tree.  Tree said bye-bye to the leaf,”  I explain some more (thinking:  “How do I explain the life cycle of a leaf to a toddler?”)

“Tree say bye-bye to leaf?”  she seeks more information.

“Yes, in the fall, after summer….a leaf falls off the tree and lands right here on our sidewalk,” I elaborate (thinking:  “Keep it simple.  Remember this is all new to her, as it once was to the other kids.”)  Its hard to imagine a time when my third-grade son didn’t know this since he can now explain photosynthesis better than I can.

Before I’ve decided where to take our science lesson/conversation, she drops the leaf to the ground and says, “bye-bye leaf”.  With that we’ve moved on.

“Bye-bye leaf,” I repeat (thinking:  “bye bye leaf.”)

“Mama, I walk!”  she circles back.

“yes, Vivi walks,” I echo (thinking:  “yes, Vivi walks…and Vivi explores….and Vivi learns…and Vivi grows her mind and curiosity and sense of wonderment”)

And suddenly I’ve forgotten about what a hurry we are in.  It would have been so easy to just pick her up, despite her protests and carry her to the car hollering and screaming the whole way.  Instead, she walked to the car, chatting and learning the whole way.  And for that, its ok if we are just a bit tardy for one of those many places we need to be.

Life’s (5 ft x 5 ft Illuminated!) Sign

Ever wish the universe would send you some sort of sign?  I once saw an interview with Gwyneth Paltrow where she described that the signs of the universe are all around you, as long as you are open to receiving them.  I love that concept and would like to think of myself as a peaceful, Zen individual, sitting in the position my kids would call ‘criss-cross-applesauce’, palms to the sky, open to my sign.

But the truth of the matter is, I’m caffeinated and busy.  I fret and pace and twitch and my analytical side gets the best of me and therefore I’m really, really horrible at making decisions.  Pros, cons, what if this or what if that….I can play a scenario out a million different ways and find the right or wrong to each.  When friends call me for advice I’ll say, “which do you want?  Because I can talk you in or out of either.”  And its true…I can.

That’s the thing. I want to make the decision…I want to control it.  Once in a while, I’ll throw a bone to the universe and play a silly little game between myself and a digital clock where I base decisions (yes!  real life decisions) on whether or not the time ends in an even or odd number.

“isn’t that how it works sometimes – the big decisions, I mean.  You don’t actually make them, you just roll into them once they’ve become inevitable” – David Ebershoff

So I’ve been keeping this secret blog.  Just as a place to capture my thoughts and work things out.  Not entirely sure of what I want to do with it all.  Last Monday night, I put the kids to bed and hunkered down, typed and three hours later had written a piece I’m pretty proud of.  Before I could think twice I sent it The Huffington Post.  The next day sitting in the parking lot of my daughter’s dance class, I got an email asking if they could run my piece next week.  I’m excited and scared…but hopeful that it will resonate with just the person who needs it, at just the time they need it.

And so yesterday I brought my secret blog out of the hiding and nervously told friends and family about it.  It was a bit scary, but actually very validating to hear so much positive feedback.  But it still sets those butterflies in my stomach a flutter.

Feeling both emboldened and vulnerable I went to dinner with friends for Chicago’s restaurant week at a cool, hipster spot.  As I walked past the tables I noticed this huge back-lit sign decorating the walls.  When I stopped and read it, I laughed…..there was my sign!  Its perfect. 

So thank you, universe, for making it an obvious…I mean really obvious, giant 5 foot x 5 foot, illuminated sign obvious!  

None of my friends noticed the sign on the restaurant wall, so another thank you universe, for letting me see it and therefore opening me up to receive my sign.  

And lastly, thank you universe, for allowing me to share some words and thoughts that might just land on someone who needs it and help point them to their sign.

Has Motherhood Made Me Lazy?

I’ve been beating myself up a little lately.  New Year’s resolutions aren’t in full swing.  The house is still a mess, dinner is always a scramble.  Sure I’ve been to the gym, but not as much as I thought I’d be.  I panicked, “Oh my gosh!!  Has motherhood made me lazy?!”

I used to be one of the hardest working people I knew.  Others had skills I admired, even envied, but hard work and toughness….those were right in my wheelhouse. I’d spend 14 hours at the office, then 2 more at the gym.  Now it feels like a colossal pain-in-the-patooty just to pack-up a toddler in her winter coat and head out to her big brother’s practice.  When I have a bit of time away from these little darlings I’d like to think I’ll go exercise, or write, or socialize…or maybe get a hair-cut.  But really, when I have a bit of time away, I just want to sleep!

And then it hit me:  motherhood hasn’t made me lazy.  Motherhood has made me tired.