Thursday, October 7, 2010


Today happens to be Thursday too.  Last year on on this date was a Thursday as well.  I remember that because I remember every little detail leading up to and after the birth of Paxton.  I remember today was hellacious for me. Today was the day I said good bye to the boys for what would wind up being two months.  Today is the day I packed what I could into the car as I waddled about preparing to meet Paxton.  I rubbed my belly incessantly knowing this was it.  Knowing I could no longer keep him safe inside of me.  I had done all I could do which to this day still feels like not enough.  I was utterly heartbroken.  Lost. Scared beyond reason.  Yet, somehow I drew up the strength to tuck my boys into bed, whisper how much I loved them, sobbed all the way to the car, got in and drove away. When I think about the tremendous strength that took today, I don't feel like I could do it again. Yet somehow I always muster up and do what I have to do.  It amazes me that when I think I am my weakest, it is then that I am strongest.
As I write this, the exact feelings I had one year ago on this Thursday have welled up inside me just as raw as ever.  This week, it's well killing me, emotionally. I wish I could explain why. Those who know me best don't need an explanation.  Those people just get it.  They don't say to me oh' but look at him now. Because I do look at him now and I can do nothing but smile, while it may be through tears, I always smile, because that's what Paxton does to me.  The acceptance of the grief, sorrow and never ending fear is really all I want. Acknowledgement that this really does blow in a big way.
I received word, yet again, yesterday that another HLHS baby has gained his wings. Another one. I wrote about one earlier this week and here I am writing the same things again. How can these babies be so fragile yet SO unbelievably strong at the same time.  I delve into his strength every day. I look into those eyes and swim in them.  They make me whole. Remind me that it is what it is, so lets roll with it.  And I do. I always do. Only a select few people really know the depths of this.  (and maybe a few readers ; ) but only via words on a screen, not emotions rolling hot down my face) I know that I am not alone. I know that while I may feel that way many a days, I am not.  While I may feel helpless and that I can't be the Mom I want to be to him. I know he knows I am doing all that I know how.

I canNOT believe tomorrow has been one year since I first laid on eyes on his gorgeous face.

And when I did lay eyes on him for the first time, I sobbed like I have never sobbed before.  He was alive.  He made it through his birth. From here I did not know what the journey held, but I knew I had that moment with him lungs wailing, big puffy Mama lips quivering at me.

Then I was told I could hold him for a short time and I sobbed even more.  I was told I may not get that chance. It all depended on how stable he was.  What I didn't know at the time was that when they said to me "it all depends on him" that meant he was going to show us how it was done.

I'll never forget holding him.  Fear eating every inch of me waiting for something to go wrong in my arms. He never did. He just cried and when he heard my voice, he soothed.  I memorized him. Every square inch of unswaddled deliciousness just in case.
His isolette waited at the foot of my bed for him to be taken via tunnel over to the children's hospital. Nurses, doctors and students filled my room monitoring and learning from a story none of us should have to endure.  I didn't even know anyone was there until I saw the pictures, it was just me and my boy.
Oh' it's all so real as I type.  When they told me it was time, I leaned into him and told him how deeply I loved him and to be strong. That I was so proud and I would get to him as soon as I could.  I remember handing him over with my entire heart in tow and watching them put him in his isolette.  He went still and I sat up thinking that was it.  They assured me he was ok.
It would not be until 7 hours later that I could see my son again.  I was wild with madness.  I needed to get to my baby. Needed to lay eyes on him. Needed answers.
This is what I saw when I arrived.  He was the baby I was warned about. Blue and still...

8 hours old and this is all he knew.  They had poked and poked every nook and cranny trying to get a line in until finally they put one in his umbilicus.  I was empty. Empty for him. Angry for him. Sad for him.  My body begged me to hold him.  I could not.  As I stood up to kiss him, blood poured out of me and I was sent right back to where I came from.  I tried to stay, begged them to let me, but once again I was without my baby.
It was then we were told that at 4 days old his Norwood Operation would take place.

There are no words.


And so begins the longest year of our lives.
The most emotional year of our lives.
One year ago today we departed and we are still en route to the destination.  There has been some wicked turbulence along the way, but we always manage to hang on. Sometimes by a thread, but we continue on.
I realize this is life.  This is it.  We are warriors, Pax and I. We forge ahead no matter what.  I continue to fight the fight for him. To be his advocate. To take him to whomever, wherever he needs to be to get the best medical care.  And he, well he continues to fight the fight just as he has from day one.

I think of our life today without this chapter in it and I wonder who I would be.  I am so different now.  I am a mom to a special needs baby, I am a nurse, I am scared every single day of my life, I am a fighter, I am ever so much braver, I finally, at 30 found my voice, I am an advocate and I am tough as nails.  Truly, I wasn't a whole heck of a lot of those things before, but I was forced to become them and I rose to the occasion.

Oh' this day. This insanely surreal day.  Will you ever fade from my mind. Probably not, just as tomorrow never will.  Every little detail is etched in my mind and my heart forever.

One year later and I can say we both kicked a*# and took names.  I can only hope I have made him as proud as he has made me.  Together we fought this battle and together we will continue.

One day at a time... just as we have always done....


1 comment:

Melissa said...

That was beautiful! Both of you are so strong! These heart babies amaze us each and everyday. This club we never asked to be part of has given us so much and while we wish we didn't have to be part of it we except it and rise to the challenge.Happy Birthday Paxton!! Have a wonderful Celebration!!

Melissa(mommy to Maccoy TOF)

My Peeps