Monday, August 20, 2012


We had our 9 month well-baby visit today (they're 10 months, I know- scheduling problems). I was so excited, honestly. Having actual "well-babies" at our well-baby visit, what a novelty! We actually got to go through the "Well Kids" side instead of the "Sick Kids" side of the office.

I ended up walking out of that office with my husband and our two adorable babies with tissues shoved into both of my pockets, swollen eyes, and an overwhelming sense of "why?".

Have you ever had those moments? Those "why?" moments. Where you just have to stop to wonder what the meaning is in all of it? It usually comes after a good long thought session on what the future looks like, what the past has felt like, and where we really are right now.

The well-baby visit didn't do much other than point out and highlight our little man's shortcomings. I absolutely adore our pediatrician, but she hasn't been living this with us, every day, watching it unfold in all of its rollercoaster-like glory. She hasn't felt each and every slope and then ridden every single peak for all its worth. She wasn't there for the neurology appointment and then the second opinion. So she asked all of the questions and we answered like we had to- honest and somber. Knowing that what she was noting in her file wasn't a positive dictation. Caleb isn't where he needs to be. He's behind, he's 'at risk', he's losing some ground.

The flip side to that, and the hardest part, was knowing that we weren't there to get any answers. We've already gotten all of the answers we're going to get right now, and for the near future. There were no magic tricks or perfect solutions. There would be no quick fixes or things to try.

He's not broken. He can't be "fixed".

But I know that he's also not where he "should be", riding that average like the rest of them. And there's nothing to do but give him the tools to use to live this glorious life to its fullest. Whatever that is for him.

And then the "why?". I have dreams for my children. They started to grow before these little ones were even conceived, back when our original dream was to beat infertility, be a part of those few lucky ones. They blossomed as the babies took their place in this world and continued to build as they grew and took on such beautiful personalities to fit my magnificent dreams. And what if our dreams don't fit reality? What if my dreams have to change?

This is life.  It's ever evolving. It's shaping every day, dynamic and flowing. But I can't shake the "why?". No matter how logical I am about what's behind us and what lies before us, that pesky question keeps popping up.

I'm a woman of faith. I know the true answer to that question. In my heart of hearts, I know. But sometimes I just don't want the answer. I just want to question. Scream it out into the ether. Listen to the silence. Know that there aren't always quick answers. That sometimes it's just life. Messy. Painful. "Wrong"...or 'right'.

He's such a good kid. He deserves so much more than I've given him. He's too full of hope to have a Mommy who lacks the strength to dream right now. It's not fair for him.

Hearing those words "in utero trauma".  How can I possibly shake that? How can I unhear those words? Will I ever be able to get past the thought? The what if. The why.    The guilt.

I write all of this knowing that this space is shared with so many who are experiencing far more difficult journeys.  Who's original dream has yet to become reality. Who's growing dreams were shattered to pieces.  It's hard for me to come here and lay down my own stories knowing that they don't touch the heartbreak that so many of you are living with.  And yet, I'm here knowing that this space is home- a place where I belong, surrounded by those of you who know pain and who know victory unlike many others.  So I lay down my worries; my fears.  I need your help to hold me up, yet again. 

I want so much more for my son than they're saying he will ever have.  He deserves so much more than this. I can never let him know that I feel this way.  He's perfect, just as he is.  And yet. 


Caleb had a seizure two months ago.  His brain MRI showed low white matter volume.  Fluid around his brain. A thin corpus callosum. At risk for cererbral palsy. Hypoplasia of the Corpus Callosum. Benign hydrocephalus.  It's just...a lot.

I guess I just needed to write it down.  I needed you to know.  I'll be back in a couple of days to write our ten month update. To focus on the amazing lives of my children- all of their development, their personality, their skills.  To highlight the wonder that this life brings and the unimaginable joy that I get from staring into their curious eyes.  To capture this fleeting moment with them, the good and the bad.  To remember.  I'll be back in a couple of days to forget.  But right now, I needed to write to you. I needed your support. 

Thank you for holding me when I'm too weak to stand alone. This is not the first time that I've turned to you for support, and it won't be the last.  And for that, I am eternally grateful.