Blogging about life and raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Sunday, April 29, 2007

WHAT????????

I think the doctor thought I wasn't hearing what he was saying. I know my face was blank. Often when parents receive devastating news, their brain stops processing information at that point, and they don't hear anything else the doctor has to say. I think when he looked at me and said, "This is a grave situation" he thought I'd gotten to that point.

But I was hearing him, this doctor whom we've been seeing for 11 years. In fact, it was 11 years ago this winter that I first heard the term, "Moya Moya disease" from this very doctor. But this time, I expected him to say the disease had finally progressed to the point of needing to do surgery. Instead I heard something much different. Instead I heard, "We can't do anything the way it is right now. If it were MMD in the classic form, we could operate. But this isn't classic, and it leaves us in a very difficult situation."

I asked the couple of semi-intelligent questions that I could think of, and we were sent on to the appoitment desk. There were some films and bloodwork that needed to be done...THAT DAY. As Angela and I reached the appointment desk, I handed the nurse a form I'd been carrying with me for 3 days. It was a new release form authorizing the Neurologist to contact one of our other specialsts ASAP to fill her in. As I handed it to her and explained what it was, I lost it. I became a blubbering puddle of tears that was unable to talk. I managed to squeak that we'd come back on Monday for the tests. I couldn't do it today.

I couldn't do it that day because what I really needed to do was get to a phone. My cellphone isn't working at the moment and I needed to tell someone. I needed to call Dean...my rock...and I needed to call my mom....my anchor. Since I didn't have a cell it meant waiting till I got home. A whole hour....

I dropped Angela off at school and her teacher asked how the appointment went. That's all they needed to ask to send my over the edge. I told them the news then went home to call Dean and Mom.

Now that I've had a couple days to process everything, I'm finding myself thinking all sorts of crazy (and sometimes dark) things. For instance, I had to run pick up my check, and while driving had to wait at a light for a funeral procession. I found myself wondering if I should be setting aside money for funeral costs? My friend who's son has A.L.L. (a form of leukemia) said this is normal. In fact, she has sat in church and thought, "I like this song...it would be a good one for a funeral."

The strangest part of all is that our life has not changed. Other than adding aspirin to Angela's medication regimine, things are still the same. She's the same kid she was on Thursday. When you get a scary diagnosis, shouldn't something change? Like suddenly you have more doctor appointments for some kind of treatment. But so far, nothing has changed for us outwardly. Inwardly there's been a lot of change for Dean and I. Suddenly we know something about Angela that we never knew, that is following us like a big dark cloud, all knowing.

There are good things that have changed. I understand the behaviors now, and that Angela is in pain all the time and we didn't know it. (though we've suspected it for a long time) It's much easier to be patient with a child who is in pain and acting out because of it, than with a child who is just acting out for the sake of being mean.

So where do we go from here? We wait for the Neurologist to call. He promised to do so by Weds morning. He wanted to talk to the Neurosurgeons in Boston, and at Mayo to see if they had any brilliant ideas. Until then.....we wait....we watch....we try not to be paranoid....Most importantly we love our little girl and cherish every moment we have with her. We could have days, weeks, months or years, but we will cherish them.

1 comment:

Jacque said...

Leah, you don't know who I am ... Once in a while, we post back and forth on the forums...but I want you to know that I am so very sorry about dear Angela's serious health concerns.
I wish that I had something to say to help.
I watched her videos and I cried. She is a beautiful and loving child. I'll keep you all in my prayers.
Jacque Reynolds