Tough Stuff

Whenever I read the words "tough stuff" together, I immediately think back to my love of Chicken Soup for the Teenaged Soul books. I had a whole bunch (that I always put on my Christmas list), and I would sit in my room on a down day at the age of fifteen and cry about broken hearts and triumphant comebacks.

I want to take this post in so many different directions, but my thoughts are everywhere, and so to streamline, I simply offer this:



That's right. A bowl of chicken noodle soup.

I have scrolled through my IG and FB newsfeeds every day this week and I have wept--for friends who have lost family, for family who have lost jobs, for acquaintances who's jobs in life have lost their luster--from business to motherhood to love and all facets of ourselves in between.

My heart is breaking for each and every one of you, and the best I can offer you is soup.

Virtual soup.

I have a friend who, during our Chicken Soup years, would be eating something delicious during late night phone conversations. For me, it was always some sort of ice cream, and for her, some sort of delectable brownie goodness her mom whipped up. I would have rathered the brownies and she would have rathered the ice cream and so we'd say, "Here, let me send you some through the phone." We'd fake "Mmmmm"s that would turn into giggles and then on to the next topic of conversation, usually which cute guy we would marry as the latest BoyzIIMen ballad played in the background.

So here, I'm sending you some soup through the blog.

It's okay to laugh and think "Really?"

Yes, really.

With it, I offer a side of this:

On the days where it hurts, and our emotions are strong, and we feel like we've been hit by a truck; on the days when you think "I can't possibly," and it all feels like too much; on the days when the expectations fall short and you find yourself muttering the word "fail"; on those days, allow yourself to experience every emotion that comes to you. Don't hold back.

And then let it go. Find something good--anything will do--and shake off the bad. Trust the bigger picture. Accept a hug, kind words, smiles. Let them fill you up with the idea that there's love in your world, and it's beautiful and bigger and stronger and brighter than any of the dark that often feels overwhelming.

I'm going to heed those words, too.

To quote an honestmom who sends me texts of encouragement when I need them the most: You got this.

-Kristin

Tick Tock

I swear, I used to be on time. I used to be annoyed by people who always ran late, running in to meetings flustered, gripping their Starbucks cup like a lifeline. I remember thinking, "They don't respect my time." That would never be me.

And yet somehow, I have become one of them, against my every instinct.

Every Sunday night, I sit down in front of my comically huge calendar and contemplate the week ahead. This practice is meant to find those hidden traps--days where the hubs, or I, will both go insane as they are currently scheduled, the times in which we are guaranteed to be late.

These are the days where tears are certain at bedtime (mostly mine), where there is a hidden land mine waiting to explode all over my perfectly color-coordinated schedule. And yet I seem to truly have the knack for setting those off, despite all the planning in the world.

Last week, instead of getting up before the boys to shower, I snoozed once (once!) and they woke up early. We raced around the house to get the day started while L whined for "one more show!" Every time I glanced at the clock, twenty minutes had passed. By the time I dropped L at preschool and got on the highway, I was (only!) five minutes late. Then I watched as traffic in front of me ground to a halt. Ten minutes late. New traffic lights by the hospital all turned red as I approached. No parking spots in the doctor’s parking garage. New construction in the hallway to the Emergency Department. Fifteen minutes late.

Did I mention that I'm also the queen of over planning? If I have a free morning then I can definitely make homemade pancakes, run to the grocery store, stop at the specialty place on the way, drop off a package to return, run down to see a friend, exercise and shower, and still make it to late brunch with friends.  Except I can't. Ever. And all of a sudden, I'm mad that I've failed--even though I clearly was never going to succeed.

On top of that, my margin of error is gone. I don’t have an extra five minutes to deal with a chatty neighbor most mornings (just reading that makes me hate myself--jerk!). A spontaneous stop at Starbucks? Ha! That could throw off the entire day unless it is diligently planned. Insert a slow cashier at Target or an unexpected wait for lunch and the entire schedule is gone. I find myself impatiently tapping my foot while my heart races and my thoughts are just me counting, "You’re now five...eight...ten minutes late." Anxiety builds, I feel myself breathing faster, and I'm going through the possibilities of how, ten years from now, I hear how I would’ve gotten that promotion, would’ve been considered, “But you were always late." I was never late pre-babies. Still wouldn’t trade them for the world, but my punctual nature is in full revolt now.

And remember the days of nursing/pumping? Oh my. I remember willing A to “nurse faster” as I watched the clock tick towards a shift start time. I lived life in three hour blocks of time, and all I could think about was when he last ate and where that put me. I was filled with hope that I could nurse when I got home, as my boobs felt like exploding during my commute, and as I walked in the door the sitter would say, "Oh, I just gave him a bottle." I would burst into tears in the middle of the kitchen as a stunned 21-year-old stared on in horror. I don't miss those days at all.

What is it about parenthood that makes time so elusive? Whether it’s grabbing ten minutes to unload the dishwasher (again), five minutes to throw in a load of laundry (again), or twenty minutes to exercise (not necessarily again), finding those tiny chunks of time seems impossible. And yet, those moments when I’m not running running running, when my schedule isn’t held together by a hope and a prayer (and seven different multicolored pens detailing when everyone needs to be where down to the five minute interval), those are the times my brain goes into hyper speed and I try to do twelve things all at the same time. 

Is this the definition of mother? Multi-tasker extraordinaire? If so, I reject that. I want to learn to live in the moment, enjoy what I'm doing, stop and smell the roses...and yet my brain just won't cooperate. 

My next post will be on mindfulness. How do we slow ourselves down? How can we focus on this moment and not the to-do list? 

-Julia

Organic Foods and Catholic Kindergarten: My Own Personal Hell

When Will was ten months old, I traveled to Europe with a group of my students, and my mom came to town to take care of him.

Upon my return, as we talked about how things went, all the cool stuff he was starting to do as he approached one, she casually mentioned she had fed him deli meat for lunch one day.

I immediately shut it down. My kid would not, I repeat NOT, be eating any processed sodium laden foods ever.

EVER.

I laugh now. He's four and a half and at one point in time he had hot dogs for multiple meals a week.

We even had them for lunch yesterday.

But I was so consumed with what I put in his body--I don't care what goes into mine; it was destroyed by binge drinking and late night Burrito Buggy (awwww yeah Athens woop woop!) years ago--but his was pristine, and all the potential links between processed foods, and hormones, and pesticides...he was going to live in a bubble and eat a completely organic diet of homemade foods for the rest of his life as far as I was concerned.

I would never cave to McDonald's Happy Meals or the allure of a Chick-fil-A playground on a polar vortex January day...

Turns out I'm human, and our relatively healthy diet is also smattered with kid-friendly, exhausted-mom options, and I don't have guilt about it at all now.

The whole non-organic thing did cause me a great deal of stress (so lame, I know), which is why I shouldn't be surprised that I just ate half a jar of Mrs. Richardson's butterscotch caramel ice cream topping with a spoon for lunch because I am completely FREAKING OUT about choosing a kindergarten for him.

KINDERGARTEN.

We aren't even talking about best-case-scenario-to-get-into-an-ivy-league-college-or-top-notch-university education decision here.

Kinder. Freaking. Garten.

Really, if we're going to be pretentious about it, which school buys off-brand finger paints in bulk and which one buys organic berry and nature dyed paints? I'll take organic please. (Who says that?)

At this point, I don't care about paint. Or class pets. Or even that every kid gets an iPad upon walking in the door. I just want three things for him: I want him to progress in reading. I want him to feel challenged academically. And I want him to make friends and not be bullied.

(Side note: At his basketball game this past Saturday, his two little friends had on stupid basketball socks that you jack up to your mid-shin, and Will doesn't have those, but I watched him want so desperately to fit in that he pulled on his ankle socks and said, "Look guys, my socks go up, too," and I actually had to leave the gym because I was crying. It's stuff like this that makes me cringe about school. It also makes me think I'm never going to make it through the formative years if I don't toughen up. Never mind him; I'm worried about me.)

We moved last summer so that we could be in a fantastic school district when this time came around, and it would be a no-brainer for us. Duh. He goes to the fantastic public school where we live.

Except for the flaw that it's only a half-day program, and, well, both parents work, so...

Seriously--what do you working parents do? How on earth do you make this work?

So we looked into a full-day option at a Catholic school. It was fabulous. They impressed me with their smart boards, and media technology library, and class pet birds, and field trips, and peer partner program. But the cheapskate in me doesn't want to pay Catholic school prices (and, ahem, elephant in the room: we aren't Catholic) when he can get something equally great for FREE. (Or nearly so...nothing is free, including that free public education.) I've just got to find an option for that other half of the day I can't be home with him...

And so here I sit, pros-cons list made, advice sought and received from multiple respected friends and colleagues, tours completed and principals met, and packets of information read and re-read and dog eared, applications to both places filled out and ready to go.

And all I have to show for any kind of decision is a butterscotch caramel drip on my lip.

And that butterscotch caramel? It's not organic, either.

-Kristin

The Fourteen-Year-Old

It's funny how blessings come in disguise, and a lot of them come in the form of pain or suffering. 

In 2006 my daughter, who was fourteen at the time, told me she was going to live with her dad. 

Just like that.

At first, I blew it off thinking it was just one of her ways she was trying to get what she wanted. Teenagers are good at manipulating situations like that. But it didn't take long for me to realize that she was really going to do it. 

I was hurt, and I was angry--how could anyone not be? I thought "My kids never did this (fill in the blank with a terrible teenage activity) or that. How could one of them choose this to do to me, to our family, to her sisters?" 

And so to help myself cope, and to stop her, I tried to make her feel guilty. 

I suppose you don't have to guess that it didn't do much to change her mind.

So it was through contemplation, prayer and love for my daughter that I came to the conclusion this was not about me. This was something she needed to do, to experience, to learn and grow from. I decided to do my best to support her, and this path she was choosing. 

Even though I knew this in my head, it still didn't take away the emptiness, pain and anger that I felt inside. Watching her go made my whole world as I knew it come crashing down. Writing about it now, I can actually feel that same pain again, but in a different way.

In order to ease the pain then, I decided to drink heavily (vodka and water is my favorite choice! It's clear and the water is hydrating!), but it didn't take me long to get out of that routine because it just made me feel worse. I had just begun practicing yoga and pilates (I'd had a tumor removed from my spine and my doctor had suggested it in my recovery). And I started focusing on the family I had left (that's how I felt) and taking better care of myself. 

I was still using the tools of prayer and contemplation and my focus started to shift…I started to ask for different things. I asked to see clearly in this situation, to love my daughter enough to forgive her, to forgive her dad and stepmom. 

Well, be careful what you ask for! 

If you're lucky enough for that to happen to you just overnight, then cheers, friend. For me it took a lot of discipline, and the ability to look at myself and notice when my judgments and thoughts were clouded. I began to pray for my "enemies," asking for them to be blessed and healed, to see clearly. 

When my daughter would call me crying and complaining about what was going on in her new space, somehow I shifted and began to support "them," even though I sometimes thought they were "wrong," and I would stay neutral in conversations regarding her issues with her new life. 

On one particular occasion, she was grounded by her dad on her birthday. Over the phone, I told her I understood how it felt to be grounded and stripped of your privileges, and that she had every right to be upset. I told her she needed to find a healthy way to express her pain and to realize this was the choice she made (to live with her dad), and she had to follow the rules they gave her. I told her there are different rules in different households, and she had to do her best to honor them (or at least not get caught!). 

Because of the physical separation from my daughter, our relationship and mother-daughter bond grew stronger.

By the time her high school graduation came around my heart had softened. I created my space. I stopped resisting what is, and learned forgiveness and love--both of and for myself and others. It can heal all wounds. 

Our relationship today is built on a firm foundation of love and stability. She knows that I love her no matter what, even though sometimes I don't agree with her decisions. She calls me when she needs advice, or a shoulder to cry on. I have given her the space to fly on her own, yet also help her keep her feet on the ground.

The best part? When she comes home from college, she wants to snuggle with me. 

You know what's funny, is how something so painful, something that brings you to your knees with such grief, can bring so much freedom. 

Michelle is momma to four: Zach, Taylor, Megan, and Anna (and wife to Dave). She's a lover of truth and life and passionate about helping others heal every aspect of their being. Michelle is also an advocate for raising awareness about Downs Syndrome--daughter Anna, born with DS, is her guru. Look for more of Michelle's posts, coming soon. 

The Best Day of my Life

Last week I became a single mom. Not full time, but part time--Monday thru Friday to be specific. And it's hard. Really hard. Before this was my reality, I saw it as a challenge--something to conquer, to exceed expectations. Two weeks in, I feel like a complete failure. I'm stressed out, tired, and one night last week both boys were up crying in the middle of the night, and I had no idea what to do to get them both back to sleep, so I started crying, too.

I'm outnumbered at dinner time, bath time, bedtime, and every time in between. My hope is that as the weeks and months go on that this gets easier. That we can fall into a routine, find  a rhythm, effortlessly cruise through our five days, party of three. But right now, it looks bleak, and May 2015 (when the casino my husband is engineering in North Carolina is slated to open) feels like a lifetime away. I have a serious case of cabin fever induced by the second Polar Vortex of the winter, and it looks like I'll never cook a dinner anyone actually eats, or successfully get everyone to sleep at night...in their own beds. I don't think I'll be able to keep the house clean, or keep my sanity. But what choice do I have? I move forward.

Last night, Jack pushed a kitchen chair over to the counter (most likely to hunt for candy canes, or M&M's or anything with sugar). The small radio mounted under one of the cabinets caught his eye, and he did what every single 2 year old in America would do... started wildly pressing buttons.

First it was static.

Then really loud static.

Then...barely audible, we heard:

I had a dream so big and loud
I jumped so high I touched the clouds
Wo-o-o-o-o-oh

I reached for the dial and turned it up. A squeal of excitement followed.

Finally, the static subsided, and:

Oo-o-o-o-oo
This is gonna be the best day of my li-ife
My li-i-i-i-i-ife
Oo-o-o-o-oo
This is gonna be the best day of my li-ife
My li-i-i-i-i-ife

And we danced.

Right there in the middle of the kitchen.

The three of us.

Waving, flailing our arms. Bouncing up and down.

I yelled lyrics at the top of my lungs, the boys chimed in with "Oo-o-o-o-oo"

Jack busted out his signature move, "the sprinkler"

Everything is looking up, everybody up now
This is gonna be the best day of my li-ife
My li-i-i-i-i-ife

We held hands and circled the room, finally dissolving into a pile of laughter and catching our breath as the song ended.

Was this the best day of my life? Oh no, not even close. But it was the best three minutes of my day. It erased everything else. It reset my attitude. It energized me. It reminded me to take this new parenting challenge three minutes at a time, and maybe, more importantly, not so seriously. Who cares if the house is messy, and the kids ate frozen pancakes for dinner, and I didn't wash behind their ears at bath time?

We are another day closer to Friday.

And when in doubt?

Turn up the volume and dance.

-Laura

Why You Can't Judge Temper Tantrums. Yes, You.

Saturday afternoon we were leaving some play time at the gym when my two-weeks-shy-of-2-year-old did what he's been doing best lately:

Laying down in the middle of the floor in a public place and just simply whiny-screaming.

And I have reached a point--especially with child number two--where I just don't care anymore.

I laughed and said to him, "Oh we're going to do this here?" and was all smiles as I man-handled him to husband who man-handled him to the car, where he continued to escalate the screams for another twenty minutes.

During this man-handling session, we received a friendly chuckle and a "Been there" from a dad and his seven-year-old, smiles of pity from the ladies who work at the gym's front desk, and annoyed scowls from some moms--yes, MOMS--who had finished up a workout and sat chatting.

After all, his screams were masking the volume of so-and-so's latest gossip.

It was en route to the car that I decided no one has the right to judge any body for a kid throwing a temper tantrum (*within reason).

My decision was based on a simple answer: it is downright impossible to predict what on EARTH would possibly cause these meltdowns.

I'll give you some examples of triggers--I'm sure you could add your own:

• Placing raisins in a bowl--as they are enjoyed every other time--instead of leaving them in the raisin box. 
• Giving the tube of blue chapstick instead of the red tube, although none was specified.
• Not letting the child open the door on his own, take his shoe off on his own, or unwrap the freaking lollipop wrapper on his own.
• Choosing the shower in the house that the child always showers in, because this one time, he wants the one that he's never showered in.
• Putting too much ketchup on a plate. 
• Playing the YouTube version of "Sweet Home Alabama" (because you're too cheap to buy it on iTunes), because that's the song he asked for, and then he demands the "Super Why" theme song in the first three chords, and well, you say no, because...NO.
• After hearing him yell that he wants the fire truck from the back of the car--the one that's on the floor that he's been yelling for for the last five minutes--and you're stopped at a red light so you put it in park and unbuckle your seat belt, find your Go-Go-Gadget arms and grab the fire truck and hand it to him and he says no. And yells for the random Lego man on the floor instead. Since the light is green, you can't grab him, and plus, shouldn't he learn a lesson in not getting everything he wants anyway? 

And all of these things, they happen without warning. Oh sure, you can maybe try to calculate it based upon time of day: Is he just hungry? Are we close to nap time? Did he not nap well? Could his ears hurt?

But the answer is generally, "Nope, he is sated and well-rested and healthy, and he's just being a pain in the arse." 

Or rather, he is just being two. And these declarations of independence are fierce.

And completely unpredictable.

Sometimes, the blue tube of chapstick will suffice. As will the orange lollipop instead of the red one. Same goes for the fire truck, the shower, the ketchup, and the raisins. 

So then the general population asks: "Why? Why must you go places with him when he's like that? He disturbs my peaceful grocery shopping and gossipy conversations, and I just don't want to hear him cry. It damages my hearing."

To which I reply: "What, and keep him home until he's thirteen-years-old and mute by choice because I'm not cool enough to talk to? No. We are completely out of milk, and it is a necessity that we go into the store anyway. I don't have time to go later because I work/have to take older brother to practice/be home to wait for repair man/have other things I like to do with my life. I will try my best to bribe with a cookie or something else, but there's a good chance this won't end well and it's a risk I have to take."

From now on, I'm holding my head high--no shame here--I promise we will be quick, and I promise I will return your looks of annoyance and perhaps disgust with a very big smile and maybe even a, "Wrong lollipop color" explanation. I know you won't care, ye judgers, but I won't be apologizing. 

That's the honest truth.

*I say this because sometimes you see a ten-year-old stomping his feet in the Star Wars aisle at Target and you shake your head--but there are always extenuating circumstances and background stories that we just don't know or understand. 

-Kristin

A Less Frizzy February

I like to torture myself by playing back the things I have said to my kids. I lie in bed at night and run through my one-woman rage production:

It’s not time to wake up—no. You need to get some more rest...Well then just lie there with your eyes closed! 

Do NOT give that dog Cheerios!

Stop rubbing your hand in that!

Are you kidding me? Hold your cup up and down! You spilled everywhere!

You want it open? Okay, bring it here. Closed? Here, please. Open? <grumble> Seriously?! Nope. Putting this away now.

NO! We are going to paint! It is going to be fun. God! Why are you whining?! YOU wanted to paint!

No. NO! Stop trying to run over your fur-sister!

Sit on your fanny! Sit! DOWN!

Monkey! Knock.It.Off. You are just looking for a reason to cry. Stop crying!

Eat! Stop talking—just eat. Please. EAT!

Please, Sassafrass, stop turning on your toys and walking away! Too loud!

Sit up! Stop pushing back!

Please! Mom just needs a minute! A minute!

Take a deep breath. CALM DOWN!

<banging on kitchen window> STOP! Did you just eat poo?! (Don’t worry--that’s directed at one of the four-legged children.)

I’ve never been into the sappy, sentimental love. I prefer romantic comedies with a bit of angst and slapstick to sweeping sagas with sinking-ships and bared souls. As a control freak, I wrote our wedding vows and poured over books and poems looking for quotes and readings that balanced the romance of marriage with my less-than-flowery worldview. My favorite was from Antoine de Saint-Exupéry: “Love does not consist of gazing at each other, but in looking outward together in the same direction.” Not the least bit fluffy—lovingly pragmatic I’d like to say.

In my family, Thanksgiving is a time to eat good food and drink bourbon slushies.  We have never gone around the table and shared what we’re grateful for. Thanksgiving’s proximity to Christmas causes me to ratchet up for the holidays instead of pausing to reflect. Don’t get me wrong, we aren’t unzipping our pants and picking our teeth with turkey cartilage, we’re just enjoying each other’s company without actually voicing how thankful we are for it.

Growing up, Valentine’s Day was always a welcome break in the slushy Ohio winter. I always disliked February: the high of the holidays had completely worn off and the promise of warm weather was too distant. I looked forward to Valentine’s Day because my mom would always have a wrapped gift waiting for us on our chair at breakfast.  It wasn’t the gift that mattered so much; it was my mom’s attention to what would brighten my gloomy month. A new sweatshirt in third grade to boost a pilled wardrobe that needed to stretch for another few months. A new set of Lip Smackers in seventh grade to refresh my dwindling collection gathering lint in my backpack. Bags of homemade cookies sent every year to my college mailbox. Thoughtful, practical gifts to show us we were loved…but no teary proclamations.

I decided this year, that I am going to start a new tradition for myself. This isn’t a Pinterest tradition that necessitates cream of tartar or Xanthum Gum, but rather a day to flip my daily script. I am going to take this holiday of love and inject a little grateful-turkey-talk. My mom used Valentine’s Day to give me a boost during the gray winters, and I want to try to do the same for myself.

So many days I review my “mom script,” and I am not proud of what comes out of my mouth. I wince when I relive some interactions with my kids, and I feel like it’s worse in the wintertime. We are trapped indoors and growing weary of our confines.

I read somewhere that parents should speak to their kids like they are being filmed and someone else is going to see the footage. Well, I would rather eat the stuff I wipe out of restaurant high chairs than be forced to see video of my cranky and snarky fits. I’ve caught a glimpse of myself in the mirror a few times when yelling at Monkey about not unrolling the toilet paper all over the floor—not pretty. Does screaming at my kids make my hair frizz or is it always that bad?

So, ­instead of beating myself up about the nagging and snapping and squawking, I am going to replay the sweet things my kids do this February 14th. Even on our worst days, one of them will do something that makes me want to cry with joy/take a picture/ hug them until they are flailing for freedom. When I obsess over my mistakes, I can forget those little things.

Mom- we da best family.

Awwwww <as Sassafras nuzzles one of our exceedingly-patient Labs>

Mom, Handy Manny would say this dinner deliciso! (After he’s gagged over the mushrooms.)

My spunky little girl looking me square in the eye and beaming while she puts a soggy Teddy Graham in my mouth—gifting me one of her most prized possessions.

We havin’ a good day mom. (Even when we most definitely are not.)

My sweet daughter flirting with me in Target, daring me to tickle her in that spot under her jaw that makes her squeal and crumple into a ball.

Awwww, Sass, you juss needa take a deep breath.  It’s okay sister--we almost home.

My dogs leaping on Monkey’s bed at the end of the night for story time…and the poo-breath is barely noticeable.

Yes, I think I see my hair smoothing already...

-Elizabeth

Top 10 Things Heard at Our House

While cooking dinner last night, serenaded by two hungry, tired, cranky little boys and one hungry, tired, cranky dad, I came up with this list.

That would also be why there are soy sauce stains on the paper.

What could you add to this list?

-Kristin

My Miracle

Do you believe in miracles?

Because I certainly do.

I gave birth to mine.

Our oldest daughter, Madelyn, entered the world a month early on March 31, 2008, under terrifying circumstances via an emergency C-section due to HELLP syndrome. HELLP basically meant that my liver was shutting down rapidly and unexpectedly, and I was suffering from severe pre-eclampsia. My life was in serious danger, but I was fortunate to have amazing doctors who worked quickly to bring Madelyn into the world. She weighed a teeny 4 lbs. 11 oz. and was 17.5 inches long, and she had a beautiful head of blonde hair. Due to her prematurity, she spent two weeks in the NICU. From those early days of snuggling her tiny body on my chest while I visited the NICU, to seeing her struggle to learn how to feed and gain weight, I knew our little girl was a fighter.

The first year was hard. Like, crying and sobbing in her rocking chair because she wouldn't eat hard. Or gain weight. Dump extreme sleep deprivation, stress, fear, constant worrying, and some good ol' postpartum depression on top for good measure, and I was a hot mess all.the.time.

My goal was to breast feed, despite our obstacles with prematurity and her NICU stay. I pumped for three months, telling myself I was "the best mom ever," only to cry endlessly when my supply tanked because she wouldn't latch properly. When I was finally told by her pediatrician that I MUST put her on formula because she was diagnosed with Failure to Thrive, it was like being punched in the gut. I drove cautiously to the store to buy Similac NeoSure, tears streaming down my face, feeling like the most defeated mom in the world.

At her one year well visit, she only weighed 14 lbs. 11 oz. She gained exactly ten pounds in one year. TEN. I was shocked. I felt like the doctor was judging me. "Are you SURE you're giving her the right amount of bottles?" We received a referral to the GI department of our local Children's Hospital for feeding therapy, and various GI testing. Madelyn was a trooper through it all, always smiling and working as hard as she could during all the tests.

These agonizing visits to the GI department and feeding therapy continued for almost a year. At last, the time came when Madelyn would tolerate Cheerios on her tongue, or would swallow miniscule bites of chicken nuggets and whole-milk yogurt without making herself throw up. The series of tests and worrying finally came to an end. Or so we thought.

At Madelyn's four year well visit, she was still way below the chart for height and weight. Our little preemie never experienced that sudden growth spurt that most premature babies eventually reach at one point or another, so her pediatrician referred us back to Children's for blood work and bone growth tests in Endocrinology.

June 5th, 2012

My phone buzzed. We'd been waiting two weeks to see the screen flash with the Endocrinology number. Results. We were finally going to learn why our girl wasn't growing and thriving as she should.

"I am sorry to inform you... your daughter has Turner Syndrome."

I dropped the phone. All air escaped my lungs like a balloon being popped with a sharp object. 

When you're told that your child has a medical issue, regardless of said issue, your typical responses sound like this: "WHAT?! How are we just now learning of this? What does this MEAN??"

I was a blubbering, crying nutcase, and the Endocrinologist had to ask me several times to "Calm down, everything is going to be all right. We would like to request that you and your husband come to the hospital for a private consultation to discuss the test results." 

If you're like me, you're probably sitting there wondering, "Huh? What IS Turner Syndrome? I've never even heard of this." 

I resisted my itching fingers' desire to type "Google" in my web browser. Surely, a more reputable web site exists in cyber space to calm my nerves and answer the 6,491 questions that were firing amongst my synapses at that unbelievable moment.

Luckily, I found this link that answered maybe about 5,276 of those aforementioned questions in an hour's time. My husband and I encourage you to click the link here below to learn more about Turner Syndrome (TS).

I will attempt to breakdown the basic information of TS that I needed to know once we learned of Madelyn's diagnosis. (Get ready to be thrust back into your high school sophomore Biology class!)

• Baby girls should have the chromosomal make-up of 46XX. Likewise, baby boys should be 46XY.
• Turner Syndrome results when all or part of one of the X chromosomes is lost before or soon after the time of conception. It is among the most common chromosomal abnormalities, yet few have heard of it. There is no known cause for TS, and it is not genetic.
• Classic Turner Syndrome results when a female in utero is completely missing a sex chromosome (resulting in 45X). Girls with this karyotype tend to have noticeable features of TS and often are diagnosed soon after birth.
• Mosaic Turner Syndrome results when a female in utero is partially missing a sex chromosome, or has other varying deletions to the sex chromosomes (45X/46XX, 45X/46XY, for instance).

It is important to note that not all girls with TS will exhibit the same physical features or medical issues. Below is a list of common conditions associated with TS:

• Short stature
• Webbed neck
• Triangular face
• High arched palate
• Slight droop to the eyes
• Broad chest 
• Low hairline at the back of the neck
• Toenails turn upward
• Heart defects (Aortic coarctation, Bicuspid aortic valve)
• Puffy hands and feet (especially at birth)
• Frequent ear infections
• Delayed puberty
• Kidney/Thyroid/Liver concerns
• Hearing loss
• Scoliosis
• Celiac disease
• Non-verbal learning disorders (especially in Reading and Math)
• Diabetes
• Infertility due to non-functional ovaries

Madelyn was diagnosed with Mosaic Turner Syndrome. She has many of the above characteristics, including a bicuspid aortic valve and Aortic Valvar Stenosis, or narrowing of her aortic valve. Her karyotype is 45X/46XY. She has a rare form of mosaicism in that she has both X and Y chromosomes.

Girls with TS can lead healthy, productive and normal lives. The typical medical treatment to help girls with TS grow to achieve a normal height is Human Growth Hormone (HGH). My husband and I must give Madelyn a shot six nights a week before bedtime until she is about 12 or 13.

Please stop for a moment and envision how bedtime at your own house looks: whining for one more book, one more drink of water, the never ending bath drama. That's our house too, but add in the requirement of a nightly shot. It's like taking your kid to the doctor for a well visit and you all KNOW shots will be involved at the end. You choose to ignore the massive elephant in the room because you're trying to fast forward to the ride home when lollipops, stickers and Goldfish are enjoyed in the car after the buckets of tears and piercing screams. This is the scene at our house. Six nights a week.

The first 6 months of giving the shot were agonizing. I'm pretty sure I cried on a nightly basis, all the while practically having to pin her down to give the medicine. It was harder on my husband and I to get used to than her. After her tears had dried, she would pick out her princess, Dora or Hello Kitty band-aid, then affix the chosen sticker to her monthly chart that she and I decorated together. Rinse. Repeat.

Did I mention that HGH is the MOST expensive drug in the United States? Yup. It definitely is. Wowza.

Thank goodness I have amazing medical insurance. I'll leave it at that.

Due to Madelyn's unique karyotype (45X/46XY), there was a strong risk for gonadoblastoma, or cancer to develop near her ovaries. I still remember the day we heard this news from her doctor: "Madelyn will need to have surgery soon to remove her ovaries. I'm sorry, but she will be unable to have children of her own."

This reality of Turner Syndrome still remains the most difficult part for me to accept. My sweet baby girl will probably NEVER be able to have children. There have been some cases of girls with TS getting pregnant via IVF, but there are high risks involved due to the mother's heart condition, namely, aortic dissection. My husband always reminds me that our youngest daughter, Olivia, could possibly one day choose to donate her eggs to her sister, so that she may have children. Simply thinking of the implications of that process tend to give me a whopping migraine, so I usually just head for le vin rouge when these thoughts dance in my head.

Every now and then, Madelyn will utter a variety of the following statements:

• "Mommy, one day, I'm going to be a great Mommy just like you."
• "Mommy, one of the teachers in my school has a baby in her belly. I can't wait until I have a baby in my belly when I get older."
• "Mommy, what will it feel like when a baby is in MY belly?" 

Most of these comments have been shared while driving in the car, and she'll just blurt them out of nowhere. My heart has stopped in my chest, and I have had to fish for my sunglasses (even on an overcast day), to hide the fat tears sliding down my cheeks.

My blanket response: "Of course you'll be a good Mommy, sweetie. There are many different ways to be a Mommy and to have a family when you get older." 

Sigh.

Our brave girl had a gonadectomy on October 18th, 2012, to remove both her ovaries and fallopian tubes. Explaining the need for the surgery was the most difficult. Madelyn knows she has Turner Syndrome--we try to educate her as best as possible on what she needs to know at this stage in her life so she feels less confused about all the doctor visits and the reason for her nightly shot. She doesn't need to know about the birds and the bees at age five.

I remember sitting in the lobby of Children's Hospital, grappling with the reality that was underway behind the doors of the operating room. My baby was lying on an operating table. She doesn't completely understand why. I was a wreck, to say the least.

She pulled through the surgery just fine, and the doctors said that she had "streak ovaries" and "barely developed" fallopian tubes. No eggs at all, no ability to conceive a child in the future. Of course, I knew this going into the surgery, but hearing it out loud from the surgeon's mouth made my heart break over and over again. Thankfully, no cancerous cells were found as a result of the surgery. Another huge sigh of relief. Madelyn will begin Estrogen Replacement Therapy at the age of 12 or 13 in order to trigger puberty and further development.

We feel so lucky to take Madelyn to the Turner Syndrome Clinic that exists at our Children's Hospital in Cincinnati for frequent check-ups with Endocrinologists, Cardiologists, Developmental Psychologists, and other medical personnel who specialize in TS. They truly make us feel comfortable at every visit, and Madelyn has impressed her doctors by growing a whopping seven inches since starting the hormone therapy in June 2012! Woo hoo!

Check out this video of Madelyn's doctor discussing TS awareness!

Madelyn's infectious smile and always-happy-bubbly personality make me so proud to be her mom. She has the kindest heart, and she is such a "people pleaser." She doesn't know a stranger, for she often approaches randoms at Kroger (Hi, there, Mr. Cashier), and talks their ear off. One day the Stranger-Danger talk will hopefully resonate with her.

She has always been incredibly strong for how small she is, and she has muscles for days! Her love is gymnastics, and she has been participating since she was 18 months old.

It never fails. I'll be sitting in the stands at her gymnastics practice, watching her flip and twirl and do her amazing candlesticks on the rings (see above!), and a random mom will say "Whoa! Your daughter has such big leg muscles! Has she always been like that?!"

I proudly beam and say, "Yes, she's always been built like this."

What I really want to blurt out is, "She has a medical condition. It's called Turner Syndrome. Would you like me to elaborate?"

But I don't reply with that retort. Even in August when she's swinging from every pole at the playground, and random parents are whispering under their breath, "Wow. Look at that little girl! How old is she? Three? How is she that strong?" Even then. Because Turner Syndrome is NOT what defines our daughter. My husband and I tell her this on a regular basis.

Future Olympic gymnast? Maybe. The girl with Turner Syndrome? No no no nope.

Madelyn's other hobbies include arts and crafts projects, playing dress-up with her little sister, any outdoor activities, and tea parties galore. She wants to be an artist, a bus driver, or a teacher when she grows up. We feel fortunate to have found a local family support group for girls and women with Turner Syndrome, and we have formed lasting friendships with so many wonderful girls and families affected by TS. It's definitely comforting to know that we're not alone.

Madelyn and her friends having fun at the annual TS family picnic.

February is Turner Syndrome awareness month. I felt compelled to tell our daughter's story, in the hopes for an early diagnosis for another girl sometime in the future. Thank goodness our pediatrician had the experience and knowledge to refer us to Endocrinology when Madelyn was four and something just didn't seem right. Sadly, so many girls with TS are not formally diagnosed until age 9 or 10 on average, when GH treatment may be too late to help them grow.

I ask that you please share this post to promote awareness of Turner Syndrome. Over 80,000 girls and women are currently living with TS in the United States with approximately 1,000 new cases being diagnosed each year. However, clinical research and funding are severely lacking. We hope that spreading knowledge and awareness leads to earlier diagnoses and a better future for girls with TS.

I've saved the best stats for last:

• Turner Syndrome affects 1 in 2,000 births of baby girls.
• 10% of miscarriages are the result of Turner Syndrome. 
• Out of the fetuses with Turner Syndrome, only about 1% of them survive to term.

Only 1% of babies with Turner Syndrome are actually born. Only 1% of these babies' mothers actually get to hug, cuddle, and LOVE their daughters with Turner Syndrome.

 

The first moment I met our beautiful daughter, Madelyn Grace.

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She is my 1% gift from above. I wouldn't change her for anything in the entire world.

She is truly my miracle.