Posted by: angelnorman | August 23, 2008

Just have to be patient.

Not a good day.

Clear liquid diet still discontinued. The surgeon will be by to talk to us again later.

I know it can’t all be uphill. My time in the NICU 3.5 years ago taught me that the only thing you can expect for sure is that life and more specifically, recovery, is a roller coaster with lots of ups and downs. There is no certainty beyond that. I just hoped it would be a continuous improvement, I guess, and I’m a little disappointed with this setback. I hate seeing him suffer, you know, and yesterday was just such an active, non-suffering sort of day. Now I’m afraid he overdid it yesterday and that he’s been hurting and not telling us how much he hurts. He’s got me worried about that– on top of worrying about whether or not we’ll have to see the NG tube, or whether the surgery was ineffective, or if he’s being overwhelmed with visitors/not enough rest, etc.

Honestly, I want to scream. I want to feel fresh air on my face and I want to cry in a way that can only be described as a wail. Yes, that’s exactly how I feel right now. I want to wail! I am physically, mentally, and spiritually exhausted and then you add in the worry, the unhealthy food/lack of exercise, the absence of privacy, the distance between us and any sense of normalcy…

Instead, I will pray and give God thanks for bringing us this far. Maybe I’ll weep. Maybe I’ll get a shower and press on and pretend that inside of my chest there is a whole heart and not a heart that is broken, breaking off more and more each time my child whimpers, winces, etc. Maybe I’ll try and silence the negative thoughts in my head, the what-ifs, the fears, the confusion.

Maybe I’ll sing. This one’s for you, Nick.

Close your eyes,
Have no fear,
The monster’s gone,
He’s on the run, and your mommy’s here.

Beautiful,
Beautiful, beautiful,
Beautiful Boy,

Before you go to sleep,
Say a little prayer,
Every day, in every way,
It’s getting better and better.

Beautiful,
Beautiful, beautiful,
Beautiful Boy,

Out on the ocean
Sailing away,
I can hardly wait
To see you to come of age,
But I guess we’ll both
Just have to be patient.
‘Cause it’s a long way to go.
A hard row to hoe.
Yes, it’s a long way to go,

But in the meantime…

Before you cross the street,
Take my hand.
Life is just what happens to you
While your busy making other plans.

Before you go to sleep,
Say a little prayer,
Every day, in every way,
It’s getting better and better.

Beautiful,
Beautiful, beautiful,
Beautiful Boy,
Darling,
Darling,
Darling Nick.

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Responses

  1. Awe…I love you so much. I cant imagine what you are going through..only God knows.but I”m here for you if you need to vent or a shoulder to cry on…give me a call if you need it. HUGS

  2. me too…I know you feel stuck in that little cage of a room where the outside world dissapears and all you have to focus on is what is stuck in there with you…..tell dispair i said hi, and to F off…anyway you are a strong girl and i know you will make it thru the other side…and as for nick, he will be fine….he will grow and be even healthier and hardly remember his time in the hosp aside from the toys and gifts


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