It’s been a while since my fingers have touched the keyboard and allowed the turmoil in my heart to be put into words.

But, yesterday was a turning point for me.  I couldn’t breathe from the anxiety and had to sit down from the sheer magnitude of fear that swept over me.  I hadn’t had a moment like that in a long time. I’ve been pretty good about filling my life and social media feed with all the smiles and all the moments that make looking at my so called life fun and carefree.

Oh man.  What a lie that’s been.

I went to Jen Hatmaker and Nichole Nordeman’s tour Moxie Matters last night.  And the topic that was discussed was pain.  Maybe physical pain. Maybe emotional pain. Whatever that pain looks like – it’s all the same.  It takes your breath away, knocks you down, maybe kicks you while you’re trying to get up, and if it’s a giant SOB -it may even call you names and tell you you’re weak, alone, and helpless.

Here’s the thing, what this is….this thing…this pain I’m finally admitting to being in has finally become bigger than what I can physically handle.  It’s like the ache in my soul is starting to leak out of my eyeballs.  I thought I was crazy for this random sob fest…but really…I’m just finally doing it.  I’m finally feeling it.  Like really feeling it.

So what’s it about?  I’m aching for the what is to come.

The subject us moms in the Heartland or the parents of medically fragile kids don’t really discuss when your life is in the throes of the mundane. The beautiful mess of normalcy. The boring daily routine of the schedules that are utter bliss.   Because man…you just want to live in this land of Denial for as long as humanly possible.

But it’s coming.  And I’m effing not ready for it.  The “it” being the next season of surgeries and procedures that are so close it makes me physically ill.

And the “it” is so different now.  When we were in the hardest moments and the scariest storm, my boy had no idea what was happening to him.  He was just a baby.  What a blessing that was.  A blessing to put a baby through 3 open heart surgeries and 2 craniofacial reconstructions….yes..a blessing.  Because he had no freaking clue what was happening to him.

Now, 5 years later, my best boy goes to Kindergarten, has friends and maybe a couple of girlfriends (dude…he’s fierce), plays baseball and looks utterly adorable in the catcher’s gear that is way too big….he understands he’s different but doesn’t think twice about it.

So to turn his world upside down to bring him back to hospital life –  a life we only remember from pictures, videos and memories….

What am I supposed to do?  What am I supposed to tell him?  We have one big rule in this house and that’s we don’t lie to each other.  So, when he asks me will it hurt….how do I give him peace and give him truth?  So, when he asks me if I’m scared…how I do offer my honesty yet shield his innocence?

I’m out of practice for the fight.  Feel ill equipped for the battle.  Because, honestly, we’ve been damned happy just living.

So there’s my truth today. My soul aching for the what is to come.  My heart breaking because I know all too well …the only way to get past it….is to go through it.

The bravest kid I knowThe bravest of the brave


Open your eyes.

Evan, Last night I couldn’t sleep in our hotel room. I picked you up out of your crib and made a pillow a wall on my bed. I got your blankies and put them all round your head just like you like it. I lay with  you and watched you sleep for hours. I don’t […]

A picture is worth a thousand prayers.

I have sat down at this computer many times in the past few days to give my list of prayer requests.  I couldn’t figure out an adequate way to convey my heart to you. My desperate heart. My pleading heart. My mother’s heart. And as I was clearing out my camera, I realized…you need to […]

Dear wife,

It’s Valentine’s Day. Craig and I don’t celebrate this holiday. We used to…our first one was a disaster.  He didn’t really understand that romance was not found in a little Mexican restaurant that shared the same parking lot as the Super Walmart.  (Anyone remember Floresitas?) So, we decided to give up the holiday. But, my […]

Don’t let it take anymore.

Yesterday was a difficult day in the Heartland. Many hearts were broken as we lost one of “our boys” to CHD. The thing about being in this world of broken hearts is that you form a bond with other mother and parents going through similar journeys. So, when one of the tiny fighters loses his […]

The only question that matters.

I had many of you reply to my post about Evan’s heart and the post with follow up questions concerning Evan’s surgery. Many of you were pretty surprised and “impressed” how much I knew. Truth of the matter? I know too much. I can ask the best heart surgeon in the world, the best cardiologists […]

The questions.

I had an overwhelming response to yesterday’s post. It makes me joyful to hear how many are joining us in praying for Evan.  And I am glad that many are “overwhelmed” by his condition. It should be overwhelming. And I think that the severity of Evan’s heart is not one to be taken lightly.  It […]

Evan 101.

I’ve been asked many times what exactly is “wrong” with Evan’s heart. His defects are diverse, complicated, rare. Understanding his defects in a quick 5 minute conversation is really impossible. It took me a while to learn his heart.  I had to learn what normal looked like in order to learn all of Evan’s “special.” […]

February – Apples and Oranges.

***Blog Repost from February 2014*** Apples and oranges. People say all the time when you are comparing things that are so different that you “can’t compare apples to oranges.” And that is supposed to make the argument just. February is Heart Month. Congenital Heart Disease Awareness month. The month where you may see hearts about […]

Response to Amy Glass

My response to an article that made my blood boil and heart sad. http://thoughtcatalog.com/amy-glass/2014/01/i-look-down-on-young-women-with-husbands-and-kids-and-im-not-sorry/ Are you by any chance related to George Glass. You know..the one from “The Brady Bunch?” Because, I didn’t think people like you existed in this world…much like the elusive George Glass. I’m naive though. And dumb.  I’m just  stay at […]

The waiting place.

Now that Christmas over. The New Year is over 3 weeks old. And Evan’s Dora and Diego failed Pinterest party attempt is done… I have nothing to distract me from the wait. The waiting place. The place we all hate to be in in the Heartland. The place where our mind travels to the far […]