Thursday, August 4, 2016

Welcoming Daphne, and Coping with a Wait and See Diagnosis

Three and a half months later, I finally have the energy (and the napping children) to write about the arrival of my youngest daughter, Daphne.

The pregnancy was an emotional roller coaster, given her prenatal diagnosis of an Agenesis of the Corpus Callosum (ACC). 

 (read about her ACC diagnosis HERE and HERE). 

However the labor itself, didn’t seem important or as profound in comparison to what followed.  When she was placed on my chest for the first time, I was filled with both wonder and worry.  I was in awe that she was actually here but I was still worried.  I was not only anxious about her diagnosis but because of the residual trauma left over from the birth of my first daughter.  Unlike my first birth experience, Daphne and I had instant skin-to-skin contact.  

She was pink and alert and, for all intents and purposes, a healthy babe.  After being reassured that Daphne was in fact breathing, I remember wracking my brain for what to do next.

So, I decided to sing.  I sang to her the songs that she heard me sing to her sister while in the womb.  The ones that came to mind were silly and if I had thought about it, I wouldn’t have chosen.  But there I was, holding my baby girl, singing Wheels on the Bus and ABCs.

From that point forward, she has amazed me.  Lifting her head and tossing herself over to nurse wasn’t an experience I had the first time around.  

Bringing her home and getting over the hump of post partum pains provided me some time and space to begin navigating her wait and see diagnosis as I sat sedentary, trapped by a sleeping newborn.
I glued myself to the online ACC babies support group Facebook page looking for clues about our future.  I followed the stories as this FB community discovered their babies' syndromes, seizures, and received tests and MRI’s.  Parents also shared pictures and anecdotes of their thriving babies.  

No two paths were alike. 
I began living all of these stories as if they were my own

I second guessed my decision to follow the recommendations of our neurologist and not order additional tests to rule out scary potentials unless necessary. 

I took it upon myself to put in the extra initiative, by convincing myself that to be a strong and educated parent, I needed to research all possible scenarios to know if something was wrong.  This included recommendations from support group members to watch YouTube videos of infantile spasms so I knew exactly what to look for.  Instead of feeling empowered and informed, I felt awful and confused.  It was as if all of a sudden I knew NOTHING about babies, or development.  

I stared down at Daphne, not breathing her in, but holding my breath.

There are many ways to cope with a wait and see diagnosis, and there isn’t a one-size fits all approach.  The continual participation in the ACC world was not working for me even though it works for others. 

I smothered my maternal instincts, at a time when I need them the most with facts and information.

Her baby days are short and I don’t want to miss them wallowing in the unknown and living in an alternate reality.  I backed off of Google and Facebook, cancelled an additional consult with another neurologist, and looked at my perfect baby, sighing with relief.  I began listening to my gut and right now, my gut says, we're good!

Instead of anxiety, I gave myself permission to feel joy, peace, and am COURAGEOUSLY, not cautiously optimistic about her future.  

The kid smiles almost all of the time and loves figuring out how to get anything and everything into her mouth.  She knows when to wake up exactly when her dad comes home in the evening and flashes him a wide mouth grin to welcome him.   

Once again, my children have reminded me the value of being present. 

So, how am I learning to cope with a wait-and-see diagnosis?

Like any other child in my care, I listen and respond to what she needs when she needs it. 

Baby giggles, smiles, and coos included.

Resource:  A book that helped me during this postpartum journey with Daphne's ACC was The Gift of Imperfection by Brene Brown. 

Wednesday, March 23, 2016

My Baby and Her Beautiful Brain

I am soon due with a baby that has a brain malformation.   

She has been diagnosed prenatally as having an Agenisis of the corpus collasum (ACC).  A diagnosis FULL of mysteries, but the one thing is for certain, the cluster of fibers in the brain known as the corpus collasum that connects both hemispheres are missing.  Never formed. Gone.  My daughter's disability might be minor and invisible, or it might be plaguing.  There is no way of knowing until she gets here. 
(You can read about the beginning of our journey HERE).

At 38 weeks pregnant, I sprained my ankle doing this thing called, "walking to the car."  I twisted it and went and hard.  Two weeks before my due date, I am forced to just think and reflect as I sit on the couch, while my husband and daughter go out for a walk.   

Because of her ACC diagnosis, she has already made me stronger, wiser, and more open to however life unfolds. I think about how she has forever transformed the life of not only her mom and dad, but big sister, who for only the next couple weeks, can hold her throne as center of our universe.

I have not treated her ACC as a secret and have shared freely, gaining much support through honesty.  I personally don't feel it's something to hide because it's what has made our journey thus far so unique, not bad, just hard and different. 

But the reality is, there are people who will label and define her by the make up of her brain. And because people are curious, I want to educate, but I fear that others will latch onto a label that smothers her light. 

Little baby still inside me, 

I feel compelled to write you a letter.  A letter that directly and openly addresses your ACC with the hope that you are liberated from whatever labels may, or may not come your way.  

Your brain was made differently then most, but there are millions of people who's brains are made just like yours.  They aren't you, and they are different from you, but you might find comfort knowing that you have this anatomical difference in common.  You are not alone. 

Your big sister snuggling you!
You are so much MORE than your ACC.  Your ACC is only one part of what makes you, you.  Just like your smile, interests, and the color of your eyes are a part of you too.  You are born into many roles in this world, and they will only expand as you grow and change. 

To start with, already you are a sister, daughter, granddaughter, cousin, and a niece.  

As you get older, you can choose to view your ACC as your superpower where you are loud, proud, wearing your ability to overcome any obstacle as your emblem, inspiring others along the way. Or have your ACC be invisible, quietly living your life as you define your own successes, seeking out contentment, and discovering your niche in the world.  

It's your body. It's your life.  Do it your way.

As your mom, I'll be following your lead. 

With love, your Mama

P.S If you can wait to be born until I'm off of crutches that would be great.  xoxo. 

Sunday, December 13, 2015

What the Doctors Can't Tell Me...

I went in for my 20week ultrasound for our second baby girl due in April.  My husband took the day off so the whole family could get our first glimpse together.  My pregnancy thus far was very uneventful and quite similar to my previous one, but without the first time mom anxiety.

The ultrasound tech was quieter than last time, didn't smile as much, and seemed to rush out at the end, tossing us the pictures as she left.  My husband made a comment that maybe she wasn't as friendly because this was our second baby? The midwives were attending births so the follow-up appointment was cancelled.  

I received a phone call that evening.

A laundry list of what was 'normal' was given to me first which put a pit in my stomach as I waited for the dreaded...BUT...and then it came.

 "We didn't get an image of the CSP, Cavum Septum Pellucidum, it's a part of the baby's brain. Call this number, and make an appointment with a 3D specialist so he can look at the CSP. We can get some better shots and you won't have to worry all weekend."

I hung up the phone and cried, telling my concerned daughter that I was worried that something was wrong with the baby's brain.  After reassuring myself that it's common to get pictures retaken, the anxiety eased and I prepared for my appointment feeling a bit silly about my overreaction. My best friend met me during her lunch break in the event that the appointment was eventful.

Unfortunately it was.  I weeped as they captured detailed pictures of my child's brain, knowing that they were looking a little too closely for everything to be alright.  The Radiologist came in after a long wait to read the results.  His prognosis was over the top dire. He asked my best friend while I was in the bathroom if he could discuss termination.  He already had his mind made up, this baby was not viable.  

  • Missing Corpus Callosum
  • Tear dropped shaped ventricles
  • Rocker Bottom foot (sign of a major chromosomal mishap)
  • Definite severe cognitive disability 
  • Possible Trisomy or major chromosomal abnormalities to blame
  • No changing it, fixing it, and no answers.   

Then he was gone. 

I was a puddle.  Incapable of functioning. My world shattered as our baby deemed unviable in just five minutes.  I was ready for the pregnancy and suffering to be over asap.  His message was received loud and clear.  It was Friday so I had an entire weekend to wait on moving forward, to sit with this awful news.  Our family grieved. 

My best friend took pictures of me and my baby after
our first devastating prognosis.
Every time the baby moved, my heart broke a little more.  I googled obsessively, learning EVERYTHING I could in the middle of the night and then sobbing myself back to sleep.  It all felt very surreal, and devastating as I made plans to honor our unborn child who only had suffering in her future.  I focused my energy on being brave for our unborn baby, my daughter, and husband. The weekend felt like a lifetime. 

Fast forward to five doctor's appointments later....

Turns out, our baby girl, does have a complete Agenesis of the Corpus Callosum (ACC) but perfectly normal baby feet.  This was a game changer, and a miracle that I thought incapable of happening. The follow-up appointments and genetic testing pointed to the ACC being isolated.  The range of outcomes are from normal neurodevelopment, to mild delays, to significant disabilities (pending on if there are other complications arise).  Not all can be determined prenatally.  The unknowns are vast and ACC is ultimately cursed with a "wait and see" prognosis.  However, our baby at 23 weeks in utero appears healthy otherwise. Unlike the first appointment, each appointment we had in the following week restored hope, and I began to understand that the brain is capable of amazing things.

I am ANGRY at the first doctor's premature prognosis, and the immense pain it caused our family.  However, the specialists at our follow-ups couldn't give us many answers about our little girl's developmental outcome.  My husband and I often left the appointments confused, disoriented, and frightened. 

How do we prepare!?   What can we expect!?  
Is she going to be okay?!  Are we going to be okay!? 

But then I realized, just like every child,  no specialist can fully predict his/her future and developmental path.  ALL children are born with their fair share of unknowns, challenges, and strengths.  ALL people are unique in mind, body, and soul.   

It's the wonderful and ugly part of parenthood.  
It's the wonderful and ugly part of life.  

Sometimes the only option is to wait and see

Once I accepted the inevitable unknown I now find our "wait and see" prognosis liberating and comforting. 

Anything could happen, including the good stuff.  

What we now know about our daughter at this point is limited to her anatomy. Her spirit, potential, interests, challenges, and delights cannot be detected on an ultrasound, fetal MRI, or genetic testing. I will not find a child who is just like mine on an ACC support group Facebook page, and  I will not find a child just like her anywhere else in the world.  She is her own person. 

My grieving has since lifted (unavoidable anxiety at every appointment will most likely remain), but never before have I been so excited to meet this special little person who has already shaken our world in a big way.  But for now, I can only wait and see what other lessons and gifts she has in store for us come spring.  

To find out more about ACC, please visit

Sunday, April 12, 2015

4 Lessons I've Learned from Toddler Testing

My 20 month old daughter, El, occasionally likes to draw with markers on the wall.  She looks back at me as her giggles erupt.   I say, "El, please do not draw on the wall, draw on the paper."  This makes her laugh even harder and in return, I laugh too because, well, she's 20 months old and there's nothing I love more than the sound of her laughter.  

I walk over, she hands me the marker, I clean off the wall (sometimes she helps) and we move on or do it all over again. 

Setting boundaries is not an area I'm particularly strong at.  Often her bold yet playful testing some how turns into a game (which ruins any chance of enforcing a limit).  But since I'm at the beginning stages of my boundary setting journey, I have already learned a few things that will hopefully carry me through the toddler years. 

Deciding which limit to set, isn't always easy. 

  • Sometimes I find myself attempting to set a limit on something I think I should care about. This often leads to inconsistency. For example, the marker on the walls. After some reflection I realize, deep down inside, I actually don't care if she does this. She draws, I wipe, end of story.  

When my tone and face communicate I mean business, it only makes the inappropriate activity more interesting. 

  • This one needs little explanation and I've tested this theory on more than one occasion, with more than one toddler.  

Mom's acting weird, let's do it again! 

Resorting to sternness, is just not me.

  • El's best friend is 32 months and is in the prime limit-testing stage. For a while, I believed that my face and tone should convey that I am serious.  If she didn't listen, I said it again, direct, stern, and with an edge...on repeat.  I was embarrassed and surprised when my emotional state began to rise to an uncomfortable place.  I recently read Janet Lansbury's, 9 Best ways to Stay Unruffled with Toddlers article, which provided relief. 

Say it once (EXPECT them not to comply), give a choice, 
then follow through. 

Narrating what is happening on a developmental level, reminds me of the big picture. 

  • If El insists on standing on the chair,  I say,  "I know you keep standing because you are curious to see if I'll respond in the same way."  By saying what I logically know, I maintain the perspective that El (and any other toddler that crosses my path) is going through a NORMAL, EXPLORATORY and HEALTHY phase in her development.  

El is looking to me for information, guidance and consistency as she actively seeks out ways that she is separate.  At 20 months old, it's pretty much her full-time job.   As a parent of a 20 month old, it is my job to be disciplined in the art of setting limits, so El can continue to confidently defy my wishes, make choices, and learn to collaborate and compromise with the world around her. 

Sunday, January 11, 2015

Reasons to Love the Big "NO"

The word NO is a word that some parents dread their little ones learning.  People have warned me, "Just wait until she starts saying NO!"  I've even heard stories of parents avoiding the word all together in hopes that their child wouldn't learn to say it or use it.

But in the end...

NO is inevitable.  
NO is going to happen.
And there's NO way around it. 

NO is a powerful word. The first impulse might be to stop this inconvenient and threatening word as soon as passes through a toddlers lips ("Don't you say NO to me!"). Hearing NO from a small child can potentially bring on feelings of vulnerability, inadequacy or loss of power.

However, when my daughter El learned to say NO, I was surprised that our relationship transformed for the better.  With this powerful, 2-letter word, she holds me accountable to my parenting ideals and reminds me that she deserves clarity and consistency. 

Just by uttering the word NO she can say...
  • Tell me what's happening now.
  • Tell me what's happening next.
  • Slow down.
  • Let me try first. 
  • I'm frustrated.
  • Don't touch me. 
  • Show me you understand.
  • I wanted that.  
  • Give me a choice. 
  • Set a limit. 

It's hard to hide my smile and pride as she asserts her independence, challenges authority, asks questions, tries and tries again and demands respect.  NO has brought out these bold and beautiful qualities in my daughter.  Therefore, even though this word may be inconvenient to hear at times, I wouldn't trade them for the ease of a million Yes's.  

Related Resources...
What to do When Toddlers Say NO; Janet Lansbury 

Saturday, November 1, 2014

One day to get it right

My daughter, El, is almost 15 months old.  Since she was born, my husband and I rarely embark on family field trips.  Our family time is typically spent on the home front.  However, the couple of times we organized a family outing, there was an underlying sense of urgency to have a tremendous amount of fun.  One-day only events seem to carry their own unique stressors. 

Why? Well...

  1. We paid a significant amount of money to be there and share a unique experience so it better damn well be magical!  
  2. If the outing doesn't go smoothly then we may never leave the house again.
  3. Where are the bathrooms? Where do we park? Where's a map?  Where are do we eat? 
  4.  It's too easy to tune into the anxiety of other stressed-out parents and then silently judge them. 

It was the weekend of my birthday and a perfect autumn day.  I requested that we visit a local arboretum. I have visited the arboretum pre-baby and remembered the Children's Garden.  I imagined El crawling around the paths, climbing the stone stairs, splashing in water and freely exploring in nature as we observed with delight.  

After navigating the first stressor (see #3), we found the cafe, waited in a too-long of line for food, discovered that the tables with the perfect views were taken and then settled for just a nice view instead. 

We then headed straight for the Children's Garden.  El leaned over to be let down.  She began to crawl around near the entrance. People were filtering in, saying "Hi" to El and making comments like, "Watch out for that baby!"  We moved her to another location. The same thing happened. A parent said just loud enough for us to hear, "Someone is going to step on that baby."  

Determined to defy the norm and make this world a more baby-conscience place, I allowed her to continue to crawl wherever she pleased as I hovered closely over her for protection. My husband trailed behind grumbling about the crowds.  

Are we having fun yet? 

As I was being judged by other parents for allowing El to crawl around in precarious conditions, my inner critic was alive and well as I noticed parents pulling their children from one feature to another, downgrading their interests, and threatening them if they disobeyed. (See # 1, and #4). 

We were all a bunch of parents trying so hard to do it right and somehow getting it all wrong.  

My husband finally convinced me to leave the Children's Garden to sit under some trees.  I thought, while we were here, I'd capture some shots of El playing in nature.  As I got into position to shoot, my husband lifted her up onto his lap for a snack.  I crtictized, "I was just about to take a picture of her playing in nature!"  Then it dawned on me.  I had our experience mapped out before we even arrived.   

Outside of the bustling Children's Garden, we relaxed and noticed a stunning yellow tree. We decided to sit under it.  El began passing yellow leaves back and forth and tearing them into tiny, glowing pieces. Every so often she'd throw her head and both arms upwards.   

My husband picked her up so she could reach into the yellow mass of leaves and branches.  Her eyes bright and mouth grinning, all because of an up close encounter with an autumn tree.  

When I stopped chasing the illusive idyllic day in search of happiness, I looked to my family. And without fail, they helped me understand that the perfect day, is any day that we share together.   

Check out this great resource...

Saturday, September 6, 2014

A Cure for Monkey Brain

I started a new part-time job that consumes the majority of my free time.  It's only twelve hours a week, but that doesn't cease to fill me with guilt that El, my 13 month-old daughter's routine is disrupted and my brain occasionally hijacked.  Three days a week I am onsite.  On those three days, she doesn't nap in her bed and has to eat breakfast in the car when she would normally be home playing in her pajamas.   

And because I do some work from home,  it's not uncommon for my mind to stray from the present and jump from task to task. I constantly pull myself out of the trenches of LaLa Work Land as soon as I realize that's where I've set up camp. 

I openly admit, I compromised her comfort for my own personal reasons for taking on a job.   

And the reality is, on those three days, it is more about me than it is about her.  

I'm pretty sure that's the definition of Mommy Guilt

However, despite the additional influx of chaos and distraction I have welcomed into our lives, if there is one thing we can count on, it's bath time.

Not my bath time, but El's bath time.  Every evening, after dinner, I slip her into her tub, add some bubbles, hand her a bath tub book and turn on some music.  She smiles, I smile back as we both indulge in the comfort of our bath time ritual.   For at least 20minutes, we have nowhere to go and nowhere to be.  

As she physically cleanses, I mentally cleanse.  Breakfast, lunch and dinner rinses off her skin.  The dirt on her knees and on the tops of her feet wash away.  Tear stains from bumping her head, now gone. When my mind drifts, her splashes bring me back to her. 

I make sure I play too.  Hands immersed in water, putting caps (our tried and true toy) on our heads, and planting bubbles on our noses. The ending of one song prompts her to dance until the next one begins.  Sometimes I sing, and sometimes she sings too.  

After bath, I wrap her in a towel and I hold her cheek to cheek. When she sees her reflection in the bathroom mirror she always yells with her mouth opened-wide, two front teeth exposed and grinning in delight. 


The power of simple care routines and rituals cannot be underestimated. They are reliable anchors in any chaotic day and are a cure for even the worst monkey brain. Whether it is a diaper change, bath, nursing, or lunch time, they draw me out of my cave, and refocus my attention on providing care for my daughter, the most meaningful work of all.  

More on mindful care routines here: