morning ramblings of a heart mama

It is now 5:30 in the morning. I have been up since 2:45.  I have officially given up on sleep.  Ever.  I want so badly to go somewhere far, far away and know that my kids are taken care of and just hole up in a bed for days on end and hibernate.  Today I just want to know it's all going to be ok.  I sit here watching my boys sleep on the cameras and I just want to know that they will all be ok.  That through all of this they will be better, kinder, more compassionate people.  I live in a state of constant fear and that is so draining. So taxing.  I feel like I have nothing left at the end of the day.  I feel so exhausted right now.  Maybe it's because I don't actually ever sleep and this always come to a head at some point.  I recover and then the same process starts all over.  I feel guilty because I know people have it far, far worse than we do.  I know there are many sleeping on that vinyl couch I know all to well in a hospital room right this very moment.  That will be us again soon too.  In spite of knowing this,  I still get sad. I still am scared. I still want to fix it and I can't fix it. Will never be able to fix it. All I can do is take it one day at a time.  I remember when Dave and I first met, we had all these dreams of a big family.  Life doesn't always give you those dreams but it has a way of giving you what you need.  What you can handle.  While I may not be handling it in the best way possible for me i.e. lack of sleep. I like to think I am handling it well in Paxtons eyes.  Other than this blog and on the couch in my counselors office I doubt it all.  When I write here I do not feel judgement and on that couch, she is the only person that validates all that I carry around every day.  She gets its. She makes me ok with it all. She tells me that I have PTSD (post traumatic stress disorder) and that that trauma never goes away, which it doesn't because every day I am in the midst of meds, cyanosis, inhalers, g tubes, stay or go, doctors appointments, keeping him free of illness and gearing up for round three of open heart surgery.  This morning I sit here and wonder how it got like this.  That picture we all make up in our heads of our lives, that picture has all but faded and new ones have taken its place.  Harder ones yes, but harder doesn't always mean not better.  I am tired.  Tired of the constant worry. The constant fear.  It leaves little room for anything else.  Not a lot of people can see that part of it.  That at the end of every day I am spent.  I don't show it. No one see the scan I do of that baby boy all day every day checking him for color, breathing, alertness.  If he sleeps to long I panic. If he doesn't sleep enough I panic.  If he stands still for to long I panic. If he squats I panic because that means he can't get enough oxygen.  Oh it never ends and today, in the wee hours, I am spent.  I suppose its ok to have moments like this.  I just wish I didn't. I wish I had slept like a normal person and had the ability to wake up refreshed and ready to face the day. Instead I will be dragging serious a*@.  It is what it is though and I have no choice but to put one foot in front of the other.  In moments like this morning I don't know how I will, but I always do.  Somehow I am always graced with just enough reserve to make it.  I will see his face and I will make it. For him.  For them.  I have always been honest on this blog, it's what makes it real.  I have many posts that will make you pee yourself laughing and many like these where I just don't know where to go from here.  It's how this journey rolls.  Its how life rolls.  You take the good with the bad.  You take the good days and run with them and the bad, well you fumble your way through them. What I love most is looking back on these posts knowing I made it through them.  There were many days I couldn't pick myself off of the floor and I was honest in that. Today though I look back at that honesty and am so grateful for it because I see that in my worst moments I can, will, and do pick myself up, dust off and carry on.  Today I am fumbling. Today I am sad.  Today I just want to cry and I probably will at some point, but I will make it.  Paxton. He's here. He's home. I never lose sight of that gift.   So now I will check out.  I will try to catch a few minutes of sleep before 3 little boys wake up refreshed and ready to go.  I will douse myself in diet coke, put on my Mommy smile and put one foot in front of the other.  The gray hairs and the wrinkles are my bodies tell tale sign of whats going on on the inside, but my boys know no better, so inside it will stay.  For them.   Everything for them.