Present for 2013

Hello…nice to see you again.

I know….it’s been awhile since I last wrote.

The holidays were hectic here.  Both of the littles fell ill with bronchitis.

The littlest little is still dealing with cold symptoms – these heart babies just take a lot longer to recoup than the norm.

But, let’s be honest here.

I wrote a couple of blogs about Christmas and the New Year.

It all seemed so hollow.  Not really authentic.

I get that I don’t have to have mind blowing, soul searching, blogs all the time.

But, lately…I’ve needed to put thoughts down that I didn’t have the courage to do until now.

2012 was a doozy of a year.

It will forever be the year I gave the birth to my son…who endured 2 heart surgeries and a multitude of surgeries and procedures we’ll just file under “other.”

My boy will be a year old in two weeks.

I can’t believe it either.

If you’ve been a faithful reader…you’ve been with me since the beginning.  The moment my heart broke in a million pieces when I found out about Evan’s diagnosis.

You’ve been with me as a trudged along the last year…trying to figure out what the hell was going on with my life in this new normal in this place called the “Heartland.”

You’ve been with me.

But…me…I haven’t been.

I haven’t been present.  Truly in the moment of my life this entire year.

I fell into a deep depression.  I was asked by my regular doctor, my OB and even our pediatrician if I sought help or wanted medication.

Fearful of what it would do to me…fearful of the the possibility of it hindering my ability to take care of Evan…fearful…shameful…

Why couldn’t I handle it?  The pressure of having a medically needy child.  Who’s so freaking complex it scares a lot of people….myself and doctors included.

I’ve been a shadow of myself.  I often lived in that shadow.  Cowering in the darkness.  Refusing to see the light that was extended to me by loved ones, friends, God.

I kind of relished in it.  Being in that dark place….the place where I cried  The place where I would look up statistic after statistic after statistic of the hard reality that I will probably outlive my son.  The place that – let’s just call “there” – where I think about the most horrific thing that could happen to Evan.  I was “there” a lot.

At least in that dark place…the pit…I couldn’t fall any lower.  Maybe sitting in that pit and in the darkness would make the next moment of pain be a little less…feel a little less excruciating.

The past few weeks have been eye opening for me.

It started when Iz fell ill on Christmas day.  The day I prayed we would have together as a family of four…always praying for Evan to stay well…then my other little gets sick.

Then Evan fell ill…and suddenly I was on the phone with cardiologist, pediatricians…breathing treatments round the clock, oxygen monitoring round the clock…

And it was on day 3 of Evan’s illness…where he was very, very sick…that I wondered if we’d see it to his first birthday.

My mind went “there.”  I cried about in bed as I listened to his breathing.  I just kept thinking the worst.

Then…day four and five came around…and his smile returned.  His appetite came back.

His little babbling much more him.

He pulled through.  And I realized…as I dressed Iz on day 5 of that illness…when I put on her jeans that she had suddenly outgrown…when I kissed her face that had suddenly lost it’s toddler chub and turned into a pre-school kid…when I dressed Evan and saw that he was in 12-18 month onesies…when I looked at the calendar and met with my planning team for Evan’s party…

That an entire year had passed.

And I wasn’t present.

Truly in it.

I’ve gone through the motions of my life way too long. But, I guess that’s what happens when your entire being is focused on keeping your legacy alive…literally.  You go in autopilot…every once in awhile having to remind yourself to breathe, to eat, to sleep…sometimes just forcing another day because, hell, if your baby was fighting to live…you should, too.

2012 took my swagger.  It took the best of me. It took the joy from me.

I let it.

I let it take the best of who I am.  I let the pain be greater than the joy.  I let the fear be bigger than my faith.

I let life pass me by and failed to live my life.

Suddenly…my baby girl will be off to pre-school this year.  And next year….she won’t be “mine” anymore.  No more waking up when we want.  No more impromptu visits to the park on sunny days after breakfast.  No more coloring as “Cinderella” plays in the background after lunch.  No more tea parties before nap time.  She’ll be heading to school…like a big girl.

Suddenly…my boy who has battled the odds is cruising on furniture, stuffing his face with ps’ketti…who is becoming more and more like a toddler and a regular kid than the heart baby that lay in the ICU fragile…

If there’s one thing that I learned this past year….and the tragedy of Sandy Hook Elementary solidified it…is death doesn’t tell us when it’s ready for you.  It just kind of shows up.

So…I made the decision about a week ago….

I’m going to live in the present. Live in it.

No more wondering about what could have been if Evan was a normal baby, if I had chosen to do something different with his medical plan, if something I did during my pregnancy could have avoided all this heartache….letting the past strangle me from moving forward.

No more obsessing over what could happen…what may happen…letting the future petrify me from living.

There’s a fine line between arming yourself with knowledge…and obsessing over every statistic, every procedure…

Knowledge is power, yes it is.  But, I let knowledge be bigger than my faith.  I sucked in every piece of information…yet failed to pray about it.

I turned to the internet and medical journals…rather than turning to my Savior.

If I truly believe that God has control over it all…I need to stop second guessing every move He’s already made.

He’s armed me with the knowledge…He’s planted seeds in my heart for the next steps for Evan’s care which we’ll pursue when the time is right….I have to make the choice to believe it…trust it…

My boy, my sweet Evan….his path is already determined.  His steps are already laid out. His story will be beautiful and will change the hearts of many – this I’m sure of – no matter how many chapters it may contain….I pray it has chapters of first days of school, first loves, first heartbreaks…a chapter of “I do’s” and babies of his own…but if it doesn’t…it does not mean his life wasn’t amazing or fulfilling.

These things….are truth…absolute.

2012 is waterlogged from all my tears.  I spent more time on the internet searching for answers and researching plans to save my boy…than actual time with him.

I spent so much time trying to keep my boy alive and now that he’s here and thriving…I’m failing him by not living his life with him.

So…I decided to give myself and those that I love the best gift for 2013.

I’ve decided to give them the present.

2013….the year I jack my swagger back.






  1. Nana Jana says:

    Remember Ecclesiastes… “To every thing, there is a season, and a time to every purpose under Heaven…a time to laugh, a time to cry…a time to be born, a time to die…” and on and on, listing opposing forces of life? I just want to say that you have cried, and you have stared down death in 2012…wise old King Solomon said there is a time for both of those, and there’s just no arguing with his wisdom.

    2012- your year of Oh-no’s, What-if’s, and Why’s- came, brought you a little boy with problems you’d never faced before, and challenged you to the very core of your being. Every tear you wept, every question your heart screamed, every emotion you felt was legitimate and honest, even necessary. For now, your heart is swept clean, leaving plenty of room for new and necessary joys, celebration in the beauties and courage and gifts contained in your family’s altered reality.

    Life, every day of it, is a gift, but sometimes, in order to discover the gifts, we first have to work through the unpleasant aspects life also contains, the imperfections, the disappointments and fear. Having done that, you are ready to frame a painting in your thoughts, and the painting in big and bold letters says, “2013 – Welcome to the time for laughter and life!”.

    Either way, during the year of tears, or beginning the year of laughter, God’s hand is holding yours, reminding you that He is here, and He is never going to leave.

    Hugs and prayers for your 2013 celebration of life from Emma’s Nana Jana! <3