Low

Well, it happened...

I hit bottom... that point where everything becomes overwhelming and the lack of control is suffocating.  Quite frankly, I didn't think it existed. We were strong- right?  We've done this so many times before.  

It started with Ari's terrors in the hospital and the memory it burned in our minds.  Next was catheterizing him at home, which we thought would be easy.  Instead, he fought like his life depended on it.  Liv would join Larry in pinning Ari down, trying to offer her brother comforting words and the promise of a lollipop from the secret stash she keeps just for him.  I hated this for her more than anything, but we needed the help.

I was nervous about threading the catheter through the new hole in his bellybutton and actually getting it into right place in his bladder.  Compound that with the epic fight he was giving us and it was a recipe for disaster.  I repeatedly hit his bladder neck- the point where the bladder narrows into the urethra.  Ari would scream in pain yelling "You hit my booty!".  Contact with the bladder neck is unnerving- the pain shoots into the lowest part of the spine.  I even pierced the new channel once,  causing blood to back up out of his belly button. 

When Larry was at work, I had to call my girlfriends to come over and hold him down.  I am so grateful for their help, but I was sinking fast and they saw it coming.  One of my closest friends commented that she had rarely seen me cry, yet she witnessed tears multiple times during these first few days.  Over and over again, friends commented that they have never seen me down and they were concerned.  This just confirmed to me that they were witnessing my fall.

I felt like "MOM FAIL" was written across my chest like a scarlet letter for everyone to see.  I cared for Ari's colostomy, cutting holes in the tiny wafer to perfectly match 2 stomas.  I managed his spit fistula  (his esophagus pulled out the left side of his neck) with ease.  G-tube feeds were a breeze, as was reinserting a new g-tube button into his abdomen when his current one became faulty.  I continue to manage his cecostomy (the button in his intestines) and administer an hour-long flush through it daily.  I've dealt with 5 years of choking, never losing my composure.  Why couldn't I do this?

It was a Saturday morning when this realization hit me.  A friend was having an adult-only afternoon football party and Larry was getting ready to go.  He offered to come back in an hour so I could go see my friends, but I didn't want to. Red lights and sirens should have gone off.  Me not wanting to see my friends?  On a Saturday?  I couldn't leave Ari.  It was the same feeling I had when Liv was a nursing newborn.  She needed me then, just as he needs me now.  Every 1-2 hours, this child needed me to survive.  The weight of this responsibility was surprising... and sad.  

"Don't you see?!?" I yelled at Larry.  "We are not the same family we were 2 weeks ago.  Everything is different and I am failing at my only job."  "Do you want to know the craziest part of all?" I continued through my tears. "I CAN'T give up because he needs me to do this.  The more I try, the more traumatized he gets and I have to keep doing it.  I'm failing.  I'm hurting my child.  I'm done.  There's nothing more in me... Done."

So... that's what the bottom sounds like.  Not so pretty- huh?

Larry said all the right things, but the problem is, we were in the same, sinking boat.  Do you remember our rule about only one of us feeling defeated at a time?  We broke that rule and it's a recipe for disaster. 

Everyone tells us how strong we are, but the truth is, we all have a breaking point.  The true test of character is how we chose to navigate the climb back up.

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Since this point three weeks ago, catheterizations have gotten easier, which we knew would eventually happen.  It helps that Ari has been singing and dancing nonstop and that his focus on "Southern chivalry" is absolutely adorable.  Who wouldn't love their son opening a car door for them or using the term "ladies first" every chance he gets?

And then there's Liv... She is enjoying her competitive cheer team more than ever, and I admire her dedication and focus as an athlete. As I watched her do a unique series of stunts over and over again during a recent fly class, I asked why she chose to work on those stunts, in that specific order.  She told me, "We have a bunch of stunt groups do this series in our competition routine.  I'm not in a group because I'm tumbling.  In case one of the fliers gets hurt like I did last year, I want to be able to step in and prove to my coach that I can do it right away, so I'm practicing now."

Once again, I was humbled by the words of a child... this time my own.  It's time for me to look ahead and get prepared for the what-ifs in my own life.  For the past month, I've been focused on surviving each day, but now I'm moving forward...and up... thanks to the lesson my 8 year old taught me.

Care to join me on the climb?

Ari dressed as the superhero Sportacus from Lazy Town for Halloween.
It was a VERY homemade costume, But he loved it!