Will of Steel ( I was going to title this Iron Will, but that's a movie title)

X has a will of steel. It's a beautiful, amazing, maddening, bring me to my knees in prayer kind of will.

Without this strong will, I believe X would not deal with his feeding tube as well as he is.
Without the will, the few cares we need to do for the tube would go a lot more smoothly.

Without X's will, he would not be the adventurer and and risk taker that he is.
Without his will, I would be able to breathe easier and relax during the day.

Without this incredible will, X would be full of compromises and not as determined.
Without his will, I would probably have more quiet moments in our house.

X's will truly is an asset for him. It's challenging to parent and has given me plenty of gray hairs, but I believe he would not be doing as well as he is without it. It also keeps me from slacking as a parent.

When X is behind on calories and nutrition, he is ornery (as anyone would be), however having this strong will takes orneriness to a whole new level. It is fairly common for X to scream at the top of his lungs for a solid hour if he does not get his way or if he has to wait for something. It is not unheard of for him to scream 2+ hours (maybe I should look into Opera lessons for him; that boy has quite a set of lungs on him).

I know X's will can serve him well as he gets older. My prayer is that we parent him well, so that amazing will is used for good.

This was our day yesterday. It was a loud day. In these moments of X's anger and frustration, he does not want to comforted. He does not want to be near anyone. So I give him space. Which is incredibly hard for me to do. I want to read to him, sit with him, hold him.

At times like these, I often think I must look like this to God. Red faced, screaming, crying, shaking my fists in the air, yelling at Him to "go away", and refusing to be comforted. Only it doesn't last for an hour or two. It lasts for days, weeks, months and even years.

Last night, X tolerated his formula at a little faster rate. He is getting a little over half of his required calories now. This morning has been easier. He's still a little "on the edge", but nothing like yesterday. I am grateful for that. He did not throw up last night. He coughed a ton, but no puking. I am grateful for that as well. I am still a little too scared to put the puke buckets away, but am grateful for no puking the last two nights. That has never happened since he received his feeding tube last August.

At the end of the month it will be a year since X first received his feeding tube. It was supposed to be a 3 month gig, but that's another post.


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