Courage is not the absence of fear, but rather the judgment that something else is more important than fear.

- Ambrose Redmoon


The way is not in the sky. The way is in the heart.

-Buddha



Saturday, April 6, 2013

"SPREAD YOUR WINGS, HOLD YOUR BREATH and ALWAYS TRUST YOUR CAPE"...





“A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.”
~ Christopher Reeve




I love sleep...I missed it when Xavier was an infant...and I miss it now, every time something MAJOR happens.  He is usually a pretty great sleeper.  But when he is sick, or after the time change or when we are inpatient, his good sleeping takes a hit.

The time changed had him all over the place.  Staying up late, getting up late and napping long.  He is finally back into a rhythm....but NOW I am all over the place.

Lately, I wake in the middle of the night.  It is no longer that panicked, something must be wrong waking that steals your breath and has your heart beating in your throat.  It is more like a thoughtful waking.  I open my eyes and listen to his deep, steady breaths.  Sometimes he "sings" in his sleep...kinda like humming and it makes me smile.  He has recently started giggling and babbling in his sleep.  It brings happy tears to my eyes...and so I lie there, awake, listening to the sounds of peace and life coming from his room.

I often find myself sitting in his rocking chair, watching his chest rise and fall.  The sign new moms and heart moms look for when we check on the well being of our motionless, sleeping child.  It's like a big neon signing that says "2:00 am and all is well".  He always look so comfy, so at ease, that I wish I were small enough to crawl in with him.

Xavier sleeping with Eli...his healing helper..he has a chest scar and a mended heart!

As we get closer to Fontan (yuck), I have been breaking the mommy code of disturbing a sleeping baby, by picking him up and sitting with him in the rocking chair.  I breath in his sweetness and match my breathing with his.  I sit and pray over my not so little man.  Begging God to get me through this.  I know that God will be with Xavier...He IS every second of everyday....the miracle that is his life cannot be explained in any other way.  God created Xavier perfectly for the path that is his to walk.  SO I have stopped worrying about God carrying him through...and much more focused on God walking with me.


When we first started talking about the F word, I prayed for God to walk with me.  Now as some of our own have just had or are day and weeks away from surgery, I am asking God to pick me up and carry me. I wonder just how I will do it this time.   Am I going to be able to find that super mom inside all of us to keep it together, to hand him over, to JUST sit and wait for word.  Am I going to be able to sit with him, see him hurt, hear him cry and not shatter into a million tiny pieces?  He is older now, and although he does not talk much, he understands everything. How will I explain to him when he looks at me with wide eyes, why I am letting all these people hurt him, hold him down... Can I, once again, find the strength inside me to except that this is what MUST happen in order for us to move forward...I CAN AND I WILL..there is no other option!

 Post Fontan is, for most, the land of milk and honey.  It is what we have been aiming for since January of 2011, when we heard the letters HLHS in relation to our unborn baby, moving, and swimming without a care inside me.  I made a promise to that little banana (the Bump says a 20 week old fetus is the size of a banana) that I would be strong for him, I would move mountains to give him a great, long life.  I was in it 100% then and I still am.

So I will be strong, I will be tough, I will put on my mask and cape and I will spread my wings and fly.  We will live in that hospital and make it Disney World for him.  We will sing and play and ignore the tube in his chest, the lines in his heart and the needles in his hands.  We will walk, although it will hurt, we will paint although all we want to do is sleep. And I will beg him to eat and drink and he will laugh at me and shake his head no.  And all will be right in OUR world.

Together, with my family, friends and heart moms, we will make it to the other side.  The light at the end of the tunnel.  Because, although he looks good to most, I see the toll that the Glen circulation is taking on his body.  He gets tired easier, he looks dusky and his breathing is faster.  His lips are getting blue now instead of just his finger and toes.  His valve needs fixed and his heart is ready for the final stage.  It is time.  And we will except this as God's plan and we will stand that edge and jump...and we will fly!!!

"SPREAD YOUR WINGS, HOLD YOUR BREATH and ALWAYS TRUST YOUR CAPE ~The Cape by Kathy Mattea






1 comment:

  1. Thank you so much for putting into words what I don't even want to think about. My son is facing his repair (TOF)soon and I worry that I wont find the courage I need. I know I will..because that's all there is to do, but this makes me feel less alone and more empowered.

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