Another holiday comes and goes...

I woke up this morning with such a heavy heart. 

I open Facebook (like a dummy) and see all the pictures of kids in their Halloween costumes. 

 Halloween at school, field trips to the pumpkin patches, dressing up for Trick-or-Treat.  

It's a very rare occasion for me to cry.  I think my heart is a little cold and hardened.

But this morning (well most of the day) was that rare occasion.  

I didn't get dressed today.  I didn't brush my hair. 

 I didn't put makeup on.  

I woke up, sat at my desk and started looking through old pictures and videos...  And I swear the weight of a ton of bricks felt like it was sitting on my chest.  

It was hard to breathe.  It was hard to catch my breath between the wails and the sobbing.  

How in the world has it almost been 2 whole years since I've been without my baby?  

And how in the heck am I still alive?  

I realize now why I avoid doing what I did today.  

Why I try to avoid talking about it, or looking at pictures and videos.  

Because it hurts like hell.

  It's like sitting down to slit my wrist.

Not my idea of fun. 

But today, I just needed it.  I needed the reminder of what my days, hours and minutes used to consist of.  I needed to hear the sound of that little drumstick banging on his drum.  I needed to see that sweet smile. I needed the reminder that I was a good mom.  That I tried as hard as I could.  Because, honestly, sometimes I feel like a flat out failure.  I watch his videos and look at his pictures and think about how much pain he was in.  How he was ever able to muster up a smile is beyond me.  

Y'all, those videos were his happy moments.  The moments where he felt good enough to play or to smile.  And in the end, they were the moments when he had enough pain medicine in him to be able to sit up and function.  He was so strong.  So brave.  I tried to record all that I could because I knew one day, even the 40,000+ pictures (literally) that I had, weren't going to be enough. 

 And they aren't.  

But beyond the videos and pictures was real life pain.  I say "real life," but it was still nothing like I've  ever witnessed before.   Something unexplainable.  Unimaginable. 

I can honestly say that that for the 2 years and 8 months that Tripp was alive, I was living in a super-human body that was held together by the grace of God.  

Looking back on these videos and pictures now, I just can't comprehend how I didn't just sit and cry and cry and cry.  I know that I did what I had to do for my baby.  I had blinders on and I was focused on one thing and one thing only... the health, happiness and comfort of my baby boy.  

But now... as I look back on pictures and videos, I swear I feel like you might as well take a butcher knife to my heart and twist it a few hundred times.  How could one child live through so much pain? And how did I witness it knowing I couldn't stop it?  

How are there precious children and adults still living right now through this type of pain?  For years? With no relief? It makes me SO sad. 

The other day I was sitting, thinking about these same things... the pain that Tripp suffered through and the pain that other children and adults with EB suffer through.  And I thought of something (I wish I could say God spoke to me, but I've been begging Him to do that for years and I've never heard anything... maybe He speaks to me in ways I don't realize.) ... but anyway, I thought, "You know, I'm so sad about the pain that Tripp suffered and the cross that he had to bear, along with the one I'm bearing as well... but Jesus went through this same pain (was it worse, equal, less?  I don't know) but He was beaten, cruely tortured and nailed to the cross?  But do I get sad about that?  Do I cry about that?  If I love Jesus as much as I love Tripp, shouldn't it make me sad that He suffered like He did?  All because He wanted us to be able to spend eternity with Him?

Is that how much we are supposed to love Jesus?  Is that why He keeps telling us He wants a personal relationship with us?  So that we can love Him like we love our own kids?  Or the unimaginable... even MORE than our own kids??  I think so.  

It was a pretty cool epiphany moment. 

Ok, sorry, sermon over.  I'm all over the place.  Back to what I was talking about... 

I've tried to tell myself for over 4 years now, that God has control over Tripp's pain.  That God had to have been taking some of the pain away from him.  Faith is hard.  That is a hard thing to believe.  It's like you believe it because you absolutely HAVE to believe it to survive.  Because what if God didn't? What if Tripp felt every little bo-bo?  Every blister that felt like a 3rd degree burn?  Every bath when water hit his sores, and he screamed and screamed uncontrollably... who was helping him out with his pain then?  The thought of how much pain he was in has haunted me for these past 2 years.  And only for the past 2 years, because I'll say it again... when he was alive- I was in survival mode.  Doing what I absolutely had to do to get through each minute with a smile on my face.  For him. 

I have no clue what I'm trying to say, really.  

I'm just trying to let out my sadness and my pain.  

In some kind of way.  By being real... and honest. 

I spent all day yesterday with my mom cleaning out my storage unit and going through the rest of Tripp's things.  Deciding what to keep and what not to keep.  

It was heart-wrenching.  Completely just wrong.  And sad. 

Needless to say, there wasn't much that we could part with.  Unless he just absolutely never played with it, or wore it, or touched it. 

 How does one part with the most precious memories they have... really, the only things this mommy has left?  

I would give up my life this very second if I could be doing this again. 

I was the happiest I'd ever been.  

Despite the pain of watching my child suffer.  

Despite the compete and utter exhaustion from literally no sleep. 

Despite the mental torture of not being able to help my own child. 

Tripp made me the happiest girl in the world.  

I lived for him.  Literally every move I made was for him.  

I put 110% into it... and I guess that's why I feel like I'm grieving 110%. 

It's hard.  It sucks.  There's no way to describe this feeling.

I certainly would not say that I don't have anything left to live for... because that is very untrue.  I have THE most amazing man in my life... who was, is and will be by my side through the good and the bad (and the really really bad).  Stephen has saved my life.  Given me reasons to smile and to love again.  He has taken care of me better than I ever thought possible.  He has picked my up from my lowest place and taught me how to trust in love again.  I'm very, very grateful for him. 

He's a man who shares my faith, shares in my pain, shares in my happiness, loves me for me... and also puts me in my place when it's needed.  He was made perfectly for me. 

And I of course have my incredible family and friends who put up with my good days, my emotional days and my terrible-I-don't-want-to-be-around-anyone days.  They love me unconditionally.  I have my sweet momma who was by my side every minute of this journey, who hurts on her own AND when I hurt.  But I was surely born into my family for a reason.  There's just no way that anyone could survive without the support that I've been given. 

But... I AM saying, that my life will never, ever be the same.

I know my fellow mommies who have lost their precious babies can relate-  

I will never have that "same" happiness again.  Yes, I will have happiness again... I have happiness and I will be given more happiness.  But not happiness like that.  Not the pure bliss I had for 2 years and 8 months.  Nothing will be able to replace that. 

My heart is aching and broken.  It may heal in places over time,  but it will never be whole again... 

until I'm reunited with my baby.  

What a glorious day that will be.  

Love,