Friday, September 15, 2006

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!

8 comments:

Dylan (and Kristy) said...

Hi Amy,

Let me know if you need anything while you are gone. Knowing you, you've probably double-checked, triple-checked, and then some to get things in order. But just in case, take my number along.

Reading your current and previous posts, it is daunting sometimes when those "reality checks" hit you. I've had a few moments myself lately but it was truly "different" for lack of a better word to hear our social worker (who really is a WONDERFUL person) state that "if Max didn't qualify for the medical coupon, who would?" Wow. Her comment certainly made me think. But to see things in a different light...doesn't that just prove how much of a miracle your little Max is? He truly is a blessing.

I wish you the best for your hearing on Monday and hope that it finally brings you some closure.

You are a great mother and friend. I'll be thinking of you while you are away. Please feel free to call...etc, etc.

Love ya.

Kristy

Mary Karr said...
This comment has been removed by a blog administrator.
elle said...

well i hope t all goes well and hope you get soem well rest LOL and pls update us on what happens or everyone will go nuts wondering well think im allready nuts anyway but thats anothe rstory LOL love you

elle said...

well i hope t all goes well and hope you get soem well rest LOL and pls update us on what happens or everyone will go nuts wondering well think im allready nuts anyway but thats anothe rstory LOL love you

MarkCoyle said...

Good Luck! I hope the Judge sticks it to VicMouse and gives you the assistance you need for Max!

Drew said...

Good Luck Amy.

We'll be thinking of you!

Drew

Steph said...

Thinking of you...hoping and praying this is the final hearing and that things go your way.

Love,
Steph

Ruthie said...

Amy you hit the nail on the head when you said that it was normal for you and Max. Each of us have our own version of normal. To some it may seem weird or strange but to us it just good old fashioned everyday. You know what, that is what makes the world go round. Knowing that life is different for each of us.
I really hope things go well for you Monday.
Thinking of you and Max.
Take care-