Along this journey, many people have wondered how I was brave enough to have another child after having had Tatiana with her EA/TEF and VACTERL issues. Some are open enough to ask me directly, while others kind of throw it out there more like a statement than a question. I don't take it personal. It's a fair question, but it's one that triggers my own internal hot mess. Most times, I don't even know how to respond with the swirl of "stuff" that comes to mind when that question is asked.

It's like a wave of internal questions and memories that takes me out of the present, and my own connotations to that question come raining down, pulling at me, demanding articulation. The swirl goes something like this: How do I explain that it wasn't an act of bravery? How do I explain that I know full well how blessed we are with the final outcome and that having a third child wasn't just us being "selfish" or irresponsible with procreation? (Yeah, that's more my own stuff than anyone else's.) How do I explain that I didn't overcome my fear because there isn't a day that goes by that I am not afraid?

And then, there is that big underlying assumption behind the question: How could I have consciously made the decision to risk having another child that could possibly go through that pain, the risks, the surgeries?

Honestly, I don't know. I wish I had a magic formula. That somehow, my experience could fall into a clean and solid set of answers to help you get beyond your own doubts and fears, but I don't and that's not how life works. That last bit is the hardest for me to swallow: knowing that you can plan til the cows come home and that life will still throw you curveballs . . . and that sometimes those curveballs are balls of fire. Dramatic, yes, but real too.

Allow me to throw in some context. I originally wanted four children. I grew up in a house as the eldest of eight, so four seemed modest in comparison - my idea of a "small" family. That changed real quick after my having my first. Parenting is hard work! And never mind my body's issues with childbirth!

Even so, I knew I wanted my first-born to have a sister. For more on that, read this post.

We knew how blessed we were to have both of our girls. We knew how blessed we were to have Tatiana come out scarred but with a fighting chance in life. We knew that Tatiana was a blessing in general - a few have even gone so far as to describe her like a "special angel" and we definitely know she has a knack for capturing the hearts of even the most guarded adults I know.

The chances of having an EA/TEF baby are approximately 1 in 4,000 babies and the chances of having another child with the same anomalies are slim from what I've been told. Still, not all that reassuring to know that the slim chance exists. And, I'm all too familiar with the tragic stories of families who have lost their little EA/TEF angels because of complications, and that is a huge understatement of the swirl of emotions conjured up by those stories.

But, still there was something about the idea of fear being the ultimate decision-maker that didn't sit well with either of us (my husband and I). In the end, it wasn't an act of bravery at all, but our fear of fear. In a sense, you could say that fear was what led us to take the gamble because we refused to let our lives be completely dictated by it. We didn't plan, per se, because we were too afraid to make the conscious choice to create another life, but we we didn't prevent, so to speak, because we were also too afraid not to take the risk.

So, when we confirmed that we were expecting, all of those emotions of fear and excitement converged into a crazy storm of emotions. We were more cautious with spreading the news. The pregnancy was monitored heavily. I had several ultrasounds and non-stress tests ruled my calendar. We had a genetic counseling session and some extra blood work.  It was definitely considered a high-risk pregnancy.  For the most part, the biggest problem was my gestational diabetes and the stress from all of the what-ifs.

A little over a month before I was due, one of the ultrasounds indicated that the baby's measurements were enough to cause concern. Whoo - yea, that threw me deep into a panic. The recommendation was that we proceed with a scheduled c-section and deliver the baby early. Of course, I freaked out . . . on so many levels. Those fresh wounds opened right back up and there are no words to capture the overwhelming feelings all of that brought on. I just had to remember to breathe. I wasn't prepared to predestine my baby to come into the world knowing there'd be a high probability that she'd be on a ventilator until her lungs matured.  And according to the docs, with each passing day, the risk of her being still-born increased. Dramatic and traumatic to say the least. Oddly enough, it also made me come to the realization that every pregnancy is a risk in its own right.

In the end, I elected to wait a few days (and pray every way I knew how). We went forward with an elective cesarean about three weeks before her original due date. Kind of a compromise, I guess. It seemed I had been holding my breath the entire time, and I'll spare you all of the details on this birthing process (for now). I will share that I had some issues with the anasthesea and I felt that knife cut into me right before squeezing my husband's hand, screaming out something like "for the love of god," and blacking out into a series of disturbing dreams that made me think I was either dying or going crazy. Me and childbirth apparently do not mix. Not pleasant. When I came to, the first question I asked is "Was she a girl?" followed by "Is everything okay? Is she healthy?" She was indeed a healthy baby girl weighing somewhere around 9 lbs. I finally exhaled fully after those nine months or so of holding my breath.

She is two now and gives Tatiana a run for her money. She's a wild, carefree child with a soft-spoken sweetness that embraces you lovingly and she isn't afraid to speak her mind the best she knows how, even if it's with a forceful grow and a matching scowl.

When I see my three girls together, I see that my answer is there, without words. It's that faith that we aren't meant to know all the answers. That reality that sometimes life will throw balls of fire our way and there won't always be a rhyme or reason for them. Sometimes, I guess the risk is its own reward.

Sisters. Such a powerful little word. Depending on your experience, the connotation varies. ;) But, I always knew I wanted my daughter to have that experience - the experience of having a sister she could fight with, laugh with, cuddle with, get into trouble with, read with, create works of art with, and dance away with to her little heart's content. A guaranteed dynamic little duo.

I know what you're thinking. You're thinking, "Come on, all I do is fight with my sister!" and maybe that's true. As the eldest of nine siblings, having four sisters of my own, I also know that even if all you do is fight, your sister shares your history. If you grew up together, you know just where to jab during those fights because you share those filaments in that magical golden thread. In times of need, you can harken back to those inside jokes that lift your spirit because the heart knows that your connection is deeper than what you are willing to admit to yourself at times.

So, yes, I wanted all of that for my then only child. I remember how excited she was to find out she was going to be a big sister. The bright, loving baby girl of mine assumed the role proudly. Beaming. She waited in anticipation for her sister's arrival, and when she arrived in April of 2009, she was such a good sport about everything. Such a mature toddler. I sometimes find myself sobbing, reliving the guilt of not being completely available to her, having to split myself between home and the hospital for such a long stretch of time, while we waited for Tatiana to be released from the Neonatal Intensive Care Unit (NICU). Not knowing how to explain to my baby girl that her baby sister couldn't come home because she was not well. That she couldn't visit her baby sister because of the strict visitation policies meant to protect the fragile babies of the NICU. Searching in frustration for that perfect book to help me explain all of that while I was just making sense of it myself. Thankful that she got to meet her at least once before being restricted from entering the NICU.

She was so patient, finding ways to keep busy in the lobby while my husband and I took turns going from the lobby to the NICU. It wasn't easy. I was so thankful for my mom and family who took shifts entertaining her, both in and out of the hospital.

As an adult, I struggled to make sense of how and why my newborn baby girl was going through this. I can't even imagine how a three year old was making sense of it all.

I often wonder how this effected them both in the long term. Both of my girls are feisty. No denying that, but they both carry this magical air about them. Both survivors in different ways. One a quieter, introspective force, and the other a fire to be reckoned with. Perfect for each other, in peace . . . and in chaos.

Apparently, my kids decided to try this today. The problem is that it looked more like this . . .

Now, change the pink to white, and switch out the play truck for a full sized light pickup truck. The picture goes from cute to scary, right?

The honest husband of mine filled me in on the details of their joyride, and I am a bit surprised I didn't fly off the handle.

There is a tiny part of me that is relieved this all happened on the husband's watch. I know, that sounds terrible, but don't worry, I'm not gloating. I am, quite frankly, fighting the urge to fall into an incontrollable fit of laughter. It's one of my body's responses to severely stressful scenarios out of my control (like earthquakes and such).

I am also resisting the urge to torture myself with every possible scenario that could have resulted from the shortlived adventure. Admittedly, I am also forcing myself to resist my tendency to self-blame. "If I had been here, that never would have happened. If I didn't encourage them to be so free spirited and curious all the time, they'd be more careful and cautious." I can punish myself for days on end if I allow myself to slip into old habits.

Instead, I'm taking this as an opportunity to show the husband some gentle compassion for the things that are out of our control. Accidents happen. Yes, there are measures and precautions that could have prevented this, and yes, I understand we were lucky this time. The outcome could have been catastrophic . . . but it wasn't.

Aside from some minor damage to the truck, the girls came away unscathed. No doubt they had quite a scare, and I'm sure my soon-to-be 8 year old will be less thrilled by the idea of taking her sisters for a joyride in daddy's truck (or any "real" car for that matter).

Tonight, instead of channeling my residual fear into anger, I'll choose love --even if it sounds cornier than corn. Instead of projecting that fear into aggression, I will redirect and reside in that place of appreciation, honoring all three of my girls as the miracles they are. Instead of torturing myself with a reel of crazy outcomes that could have been and imagining the intense panic and fear they must have felt, I'll stare at them in their sleep (like a weirdo) in awe of who they are in this moment. I'll breathe and let it go, granting myself the freedom to chuckle at the story this will evolve into, and I'll imagine us years from now, being those embarassing parents teasing her about her first "fender bender." 

The universe has a way of using our most ordinary and mundane routines to send us messages. Sometimes, if we’re lucky, we catch, absorb, and manage to use those messages to help get ourselves through the insurmountable.

For me, those messages often come by way of books (proud nerd mama moment), television (no shame in that!), or social media (yes, of course I have an entire pinboard of inspirational quotes! I really do.). Sometimes those messages speak to me instantly, other times they take a while to sink in, and still there are those moments of extreme depth when those messages stay with us and resurface from time to time.

Tatiana is almost five now, and I have to admit that there is a part of me that is still holding my breath, waiting, watching, maybe even withholding, and yes, afraid. I don’t think I’m alone. Having met other VATER/EATEF moms, I can tell they’re waiting to exhale in their own way too.

Maybe it’s the visual reminder every time we dress our children or help them bathe – those battle scars that you can’t help but fixate on every once in awhile, wondering how you will respond when and if your child ever asks you about them. Those scars that seem so minimal when we force ourselves to look back at the pictures of our babies in the thick of their journeys.

But then, they redirect our thoughts with the sparkle in their eyes, because these babies hold a special magic that is inexplicable yet easily felt. With that twinkle in her eyes as she dances in her skivvies, I hearken back to a quote that grabbed me and pulled me through some of the most difficult moments earlier on:

"These are the tiny humans. These are children. They believe in magic. They play pretend. There is fairy dust in their IV bags. They hope, and they cross their fingers, and they make wishes, and that makes them more resilient than adults. They recover faster, survive worse. They believe." Arizona Robins, Grey's Anatomy: Invest In Love, Season 6, Episode 8

For those mommas who are in the thick of their own journeys, the quote goes on to say “In Peds, we have miracles and magic. In Peds, anything is possible." And indeed it is. Nearly five years later, I’ve witnessed so many triumphs accomplished by this little person and even though I fear the silly things on a heightened scale –like her first day of kinder, for instance– her magic and sparkle is enough to carry me through.

We registered our EA/TEF baby for kindergarten yesterday! I am both excited and nervous about this milestone. I'm sure that I'm feeling a swirl of emotions most moms can relate too, but for my middle child, this represents a huge shift. A little more jarring than my first borns' first day of kinder. Just a tad.

I've joked about going to school with her the entire first week. Truth be told, I'm more serious about that than I thought! I caught myself putting childcare plans in place for my "baby" (who is two by the way, but will forever be referred to as "the baby").

Sure, Tatiana has been in childcare and has been in a half-day preschool program leading up to this. Then again, those were super small environments where I was able to "fully brief" the staff on her history, needs, and quirks, being careful not to freak them out too much, while giving them enough to keep myself from freaking out a whole lot!

In case you're wondering, I printed a ten page attachment for her kinder registration. Then, I came to my senses, and I remembered a link I had come across with a handy dandy caregiver's guide (two pages and here is the link: http://www.eatef.org/node/4).

I have a few months left before the big day to freak myself out some more and maybe make some peace with my tendency to worry til the cows come home. It's only March, after all, and her first day of kinder won't be til the end of August. I still have an entire summer of fun-filled mommy adventures to distract me! For now, I'll keep reminding myself to live in the moment, cherishing the laughter, the shenanigans, and the tantrums - oh the tantrums!

In a female dominated household, you bet I'm raising some bossy, articulate, and critical thinking feminists! This is  a pic of my youngest. I altered it in Photoshop and threw in some of my wit, humor, and a whole lot of truth. As a mother of three girls, and all too informed on the disparities that exist in the world, I can do more than hope that the world will treat them better as women; I can be an example, and show them the power of their actions and intentions. Watch out world - I've got three super hero feminists who will know the power of their potential turned reality.

Looking to learn more on how I created the effect in Photoshop? Check out this awesome tutorial I used as a guide: http://pshero.com/photoshop-tutorials/photo-effects/comic-book-photo-effect

You would think I would have marked this day on some calendar, or perhaps kept a mental engraving of sorts lodged in this brain of mine, but no.  I must have blocked it out.   I know it was October because that falls six months after Tatiana was born, which is more or less when Tatiana would have had her six month follow up with the NICU.  I do remember it was a beautiful day in October, not too hot, not too cold.  The trees were colored just right.  I knew the moon would look gorgeous that night.

It was just the two of us.  Me.  Tatiana.  On our way to the hospital.  My husband was somewhere in the Southwest - he’s a long haul truck driver.  My four year old was with the sitter.  I naively showed up thinking “this appointment is so not a big deal.”  I mean, really, I have seven siblings and I’m the oldest, so I am well aware that everyone develops at their own pace.  I didn’t think I had much to be concerned about.  She was crawling, rolling, slobbering, doing what babies do.

Here we go.  Tatiana is very particular.  Both of my daughters are.  I always say they are my little divas.  Well, Tatiana was having a little diva day and was not in the best mood.  I’m sure somewhere in her memory she connected the smell of the hospital with so many things she would rather forget.  Yes, I’m one of those – you know, those people who think babies are keenly aware of their surroundings and conscious of more than we would like to give them credit for.  Well, since she didn’t have her full diva nap, I knew this appointment was about to get slightly more challenging than I anticipated. 

We were directed into a hospital room converted into a special room for observing and assessing developmental milestones.  The nurse practitioner was very warm and made me feel a little more at ease – especially since I remembered her from the NICU and she was one of the folks I felt was always on top of her duties making us feel comfortable, looking out for Tatiana, etc.  She started asking me all these questions: Is she rolling left or right?  Can she roll over? Do you put her in an activity saucer?  Does she stand? Does she reach for her food?  Can she grasp objects?    

I know.  None of these questions seem like a big deal.  Well, I felt myself starting to sweat.  I felt like a terrible parent.  How could I not know the answers to some of these questions?  Why was I being so protective?  Was I supposed to give her cheerios and treats?  Was I supposed to force her to stay in an activity saucer even though she seemed to hate being confined into a space?  How was she supposed to bounce if her feet were too short to reach the ground?  Was I delaying her development?  I felt the panic start to set in. 

More questions:  Does she always fuss like that?  Is it difficult to console her?  Does she always cross her legs? 

What?! Does she think something is wrong?  I see the look of concern on her face. 

Then we get to the topic of this tethered cord.  At the time, I didn’t know much about that, except that I hoped it wasn’t an issue.  Tatiana had an MRI in August following one of her surgeries to see if she had a tethered cord.  All I knew then was that there was a possibility that she had a tethered cord and that whatever that was might have an effect on her central nervous system and bodily functions.
 
I know I asked something along the lines of what I should be concerned about.  I know she meant well, and I appreciated that she was very candid with me, but I was definitely not prepared for what I was about to hear.

She may never walk.

I held my breath and prepared to exhale.  I stood there holding Tatiana, and responded very calmly, Oh. Okay.

Tatiana was still being a little diva, making a fuss.  Maybe she was objecting. I don’t know.        

The nurse asked if I needed a minute.  I did.  She left the room.  I sat down.  I held my baby tightly, close to me.   I took a few deep breaths.  I tried not to cry.  I had to be strong.  A few tears escaped me.  Okay.  It’s okay.  Another breath.  The kind that you struggle with, shaky, feeling like you don’t have enough space in your lungs to even breathe.

The nurse came back in.  She told me she was going to follow up with Tatiana’s general surgeon to express her concerns.  I thanked her, and I walked out to the car with my head held high, as calm as I could be.  I put Tatiana in her car seat.  I got myself in the car and I buckled my seat belt.  I held on to the steering wheel as tight as I could.  And I cried.  I cried from the depths of my soul, asking myself why, trying to understand, trying not to imagine all of her “nevers.”  I felt so defeated and angry. 

I called my husband.  For a while, I couldn’t speak.  Finally, I found the words to tell him what the nurse practitioner had just told me.  I wondered if it was harder for him, having to be away, almost isolated, having to fully absorb it all.  He was quiet for a moment, and when he finally did speak I heard fear in his voice but his words were accepting – not of the situation, but of the opinion and that it was just that: an opinion. 

We both wondered if the system was set up to force us through a constant state of turmoil.  We would get through a challenge, and feel a sense of peace and acceptance, only to be slapped with yet another round of difficulties.  It felt like we were the objectives of a twisted obstacle course; right when we could get back on our feet, we were being knocked back down, tested to our limits – physically, emotionally, financially.  I’m sure the medical professionals thought they were doing us a favor by giving it to us in spurts, making it manageable, but, from our perspective, it felt like torture, a vicious test of faith.  

I felt so emotionally heavy when I left the parking lot that day, and for so long afterward.  

I remember I shared this information with my family and a few close friends.  It was their optimism and faith that got me through that time, along with my husband’s knack for linking the practical to what may seem insurmountable.  The humor, the words of encouragement, the stories, the alternate possibilities from what I had imagined in that moment made it easier to accept our reality and to hope for other outcomes.  In the end, it’s that hope that keeps us afloat.