Balls

I’m really F*ing tired.

Sorry.

I’m human and sometimes I want to curse.  And I do – just not around my 2 year old (who I haven’t seen in 2 days) and not often.

But you know what.

This sucks balls.

Seriously.

A heart mom put it best – the life of having a baby with a congenital heart defect – “It sucks balls.  And you take it one ball sucking day at a time.”

I can’t even do that.

I can’t even take it one day at a time.  I feel overwhelmed at the thought of it.  Time is different for a parent when you suddenly have a child with serious and critical medical condition.

Suddenly – time stands still.  Time goes by so slow.  Each tick of the clock feels like eternity.  Because all we want is for the next minute, the next hour to pass…so we get to the next day.

Evan’s heart condition is serious – I say that loosely – because any time a baby or child has a medical condition – it’s very serious.  But in regards to the type of condition he has, it’s a complicated case.  Not cut and dry.  So much that the doctor’s plan for now….

Grow and stay healthy.

They plan on letting Evan declare what kind of surgery he’ll need and when.  So when I take him home, I’ll watch him closely, keep him quarantined (my orders…not the doctors), and get him as fat as I can.

That’s it.

And we let him grow.  Let his heart continue to grow with his body and see how he does.  And then the when and the what of surgeries (yes…possibly more than one) will be declared by my warrior.

I hate that.  Hate not having a plan of action.  Hate not knowing what tomorrow brings.  Hate that I force myself to focus on today and the moment instead of the future for him.  Because, today is all we’ve been promised.  Craig needs to stop being so F*ing great about all of this.  I see the pain in his eyes too when he looks at his son and talks about missing Iz.  And as I cry to him about this not being fair for Evan and the possibility of losing him – Craig reminds me that none of us are promised a tomorrow.  That eternity really only is heart beat away.  Or as he put it, “I hate this too.  But, even after he has surgery, we don’t know what will happen.  I mean…there could be a sniper right now in the building ready to shoot me.”  Yes…he watches too many cop and war shows….

The fear and the pain I have for him is paralyzing.  I find it so hard to pray these days.  But I do – because I’m at the end of my rope – and I’m desperate for God to hear me.   And the only comfort I have is that Evan’s life and his purpose has already been carefully thought out by God.  The struggles of this life – this moment – do have a reason.  Theologically from a Christian perspective – I can tell you why God is doing this.  But as a mother who prays and pleads over her son daily and watches him in a hospital bed…I can’t give you the reason why this happening.

It just sucks balls.

I look at Iz – who is so innocent – who is perfect – who is funny – who is compassionate – who is the light of our lives – and know that God is good.  I know that God doesn’t make mistakes because He made Iz, he gave me Evan, he gave me Craig.

But right now – as I sit in the hospital room, watch Evan sleep, pray for his future, miss my daughter, miss normalcy…all I can think is…

This just sucks balls.

 

 

Comments

  1. Oh…I know that feeling so well. And I also remember how tired I would get…just spending the whole day sitting. Amazingly more tired than if I were out running all day long. No one can describe the feeling or how slow, long, and tiring a day in the hospital is when you are watching your baby…it is something that you have to experience to understand. It sucks balls…it really does. I am glad to know you all will be going home and he will have lots of hugs and cuddles at home and not in the hospital. That will be an amazing day and I am looking forward to that post. I will continue to pray for your little man and for your whole family.

  2. Oh the “wait and see” is the hardest part – I’m so sorry!

  3. We had a plan, but no date. It sucked and I spent so much time wondering and worrying about ‘the bad thing’ (his death). What a colossal waste of time. Not because he didn’t die, but because I spent so much time preoccupied with negative thoughts. From reading your facebook posts, it sounds like you’re staying mostly positive, and I’d encourage you to keep trying to be that way. Every day a gift, every moment precious, and yes, we never know what tomorrow holds. Hang in there momma, it will get easier, it will get better. The adjustment and the waiting are the hardes parts.
    Keeping you and your family in my thoughts.