HEADING BACK EAST...WITHOUT MY GUY

Tomorrow night I head to West Virginia for the divorce hearing on Monday. This is the third and *hopefully* final hearing.

The past few days have been crazy busy with last minute preparation for the hearing and more importantly for Maxwell's care in my absence. On top of that extra stress, I gave up a lot of my night nursing this week to make up for all the nursing we will need.

Then yesterday Max's oximeter (monitors his oxygen and heart rate levels) stopped working. So I have had many frustrating calls and visits with our equipment company. Obviously this had to be resolved before I left...and they weren't make it very easy. Now we have a completely different machine for the time being, and I am just keeping my fingers crossed that it works well for everyone and the nurses all understand it. (For those of you who haven't used one before, oximeters can be a little tricky.)

Because of this and similar previous situations with this company, I think we are going to change providers. It will be a major headache as Max has A LOT of equipment and that requires a lot of coordination. Anyway, I could go on and on about that issue...but whatever. It's minor in the grand scheme of things.

This week has simply been an emotional week. As much as I try and push the future of CHARGE aside, it haunts me from time to time. I read more today about the issues (too much to write about here - it would freak you out) and it was really, really scary.

It's funny because sometimes I forget. I simply forget how sick Maxwell is and I forget what the future may hold for him/us. (I think it is my brain's way of protecting me and my sanity!) You wouldn't think with all the medical and therapy stuff we do every day that I could forget for even one moment, but occasionally I do. Or at least I forget the seriousness of it all...if that makes sense. It's really strange. I just think of it as our norm.

Just the other day it hit me that Max is still requiring oxygen. I don't know why, but I was driving up our hill and I realized...my son requires oxygen for his body to function properly. Hmmm...and he will require it for many more months if not longer...that just isn't "normal." It just hit me, just like that.

And the other day at playgroup, Max's social worker and I were talking about his medical coupon waiver. She was talking about how extremely uncommon it is for anyone to receive this waiver, but said quite frankly, "if Max doesn't qualify for this, who does?" YIKES, that was another reality check moment! She didn't mean this in a harsh way (she is an absolutely wonderful woman), but she was simply stating the facts -- Max is a very medically fragile child with complex, wide ranging developmental/sensory issues. Another mom (wasn't that comment weird to hear Kristy?) and I both took in the comment and "reality check"...and in our own way, smiled and acknowledged the miracle of Max.

ANYWAY, I basically was just going to post that I will gone for a few days and somehow I have just gone on and on...I best run! I have a few more hours of work, and then I will try and catch a few ZZZ's in Max's room if he lets me! And tomorrow I am going to have fit in a lot of snuggling and hugging...I am soooo going to miss my guy!