Sharing stories of fear, frustration, hope and acceptance

Archive for October, 2012

Mission Impossible?

Two-months old: Hernia Repair
One and half years old: Pinky lesion removed
Two and a half years old: TWO major brain surgeries, trach placement for breathing machine, G tube for feeds placed
Three years old: porta-cath placement
And now…. Neuro surgery tells me he may need a Shunt placed in his head.

I woke up the other morning and went to Adam’s bed side. His eyes opened slowly and closed just as slow. I’ve seen that look before. He’s fighting something, I thought immediatly. This is the look of, “mommy I don’t feels so good”.
So here we are at UCLA PICU again. The third hospitalization since the “BIG ONE”.

I was sure he had a respitory infection… But the need for a shunt? This one I didn’t see coming.

Another surgery? More hard ware place in his head!
What are we fighting for?? What if this child’s body is just not able to go on? Does a mother let her child die or make him fight? Does she hold on to hope like nothing else and do everything in her power to hang on to the possible chance of recovery? Or will she simply recognize the signs of her child asking to be let go? How long will this go on for?
How far will I go? How far can he go? I can’t imagine my life without him. He has become my all consuming mission.
But what if this fight is more for me than him. What if he’s truly tiring out? Will I protect his right to give up if he wants or will I become so lost in all this that I misinterpret the signs?
Dear God this is just too much…


One/half step forward… Or two?

Actually who’s counting? I lost track of how many times I lost track!
All I know is Adam is home again. I am resting, Frankie’s at school dads at work. Ahh
Deep breath…
The “tune up” at UCLA was successful. The reason: taking Adam to the place he had to start all over again made me realize really how much he has improved. He is able to move his hands, arms, feet and legs. He even moved his neck!! He moves them spontaneously (with out control).
His next goal is to move them with purpose. I know his smile is around the corner I can see it. Awe! I can not wait to see his smile 🙂

Sleep? When? Where?

Where does one go to get the sleep I require?
Is it in a state of mind that I can not find?.?.
Perhaps I have it all wrong. Perhaps sleep is to find me.
And NOW that it has! Now that sleep has finally come around it finds me with no where to sleep but this dirty table! Argh!