Wednesday, September 26, 2012

Happy Birthday, Bea!

Bea is 7 years old today!

She is at school probably sharing home made cookies with her friends as I write this blog entry. Otherwise it'll be a fairly ordinary school day. It's library day so she gets to choose a new book. Chris took the day off so he will pick her up for physical therapy today, per Bea's request. Then they'll pick up Lewis on the way home and we'll celebrate with take out from Fuji Hana (edemame, anyone?), carrot cake and presents.

And, what neither kid knows is that when they wake up tomorrow there will be no school. We're taking them on a suprise trip to Disney World!

I'm so proud of Bea for being such a strong and happy little girl. Even though she still has some physical problems she has adapted and is even becoming pretty adventurous with how to get around a room. If she wants to do something herself that's exactly how it goes.

It's a great day to be Bea's mom.

Monday, September 17, 2012

A Day to Celebrate

Today is a day to celebrate.

Bea was diagnosed with DIPG 9 months ago, on December 17, and she's still here and she's still going strong.

The fact is that most children with DIPG survive about 9 months post diagnosis. Tomorrow will be the first day that she is truly beating the statistical odds.

As of today Bea can still walk (albeit not perfectly), talk, read, write, tell jokes, paint, play games, eat whatever she wants, bowl (her latest obsession) and go to school. She can play with Lewis all day long. She can sit with and pet her little pal Eva, our runt of a 5 pound black cat. She can hang with friends.

And, even more significantly, Bea will be turning 7 years old on September 26. She's going to have a great day and then we'll figure out the next milestone. Life works out at about one week at a time in our household and, well, that's a pretty good way to be.

Friday, September 7, 2012

It's All True

This has been an awful week. No... not true. The last 2 weeks have been awful and I'm battling emotions that I usually feel very short terms and it's an uncomfortable space for me to be.

And, because I know that so many people read this blog I've found that it's really, really hard to go in and write truthfully about the bad stuff. The feeling sad stuff. The got the blues stuff. The "I'm so f-ing angry" stuff. Well, that's the stuff that these past 2 weeks have been made of.

First, the "feeling sorry for myself" stuff... I got laid off from my job. A job that I love and want to keep. A job I've been at for 8 years and that I have become very, very good at. I teach at a for-profit college. One of those evil schools that's been in the news a lot lately. Problem is that it's not an evil school. Sure, it's totally mismanaged but it does so much good for the students and the teachers are fantastic. I'm one of them. I have the opportunity to teach part-time while still getting a severance and I'm jumping all over it. It's still a loss and it still makes me really angry that this happened to me and over 60 other teachers. So, hopefully I'll be back part-time. If not, it's off to the unemployment line for me.

But, in the larger picture, that's really not important. The big thing I'm dealing with is Bea showing regressive symptoms. Her balance has not improved since the VP Shunt was put in. The numbness in her right hand has not gone away. It's not changing one bit day by day. I wake up hoping to see Bea walking down the bedroom corridor with a skip in her step and what I see is a girl who often has to lean on the wall and sit down all the time. She can hardly stand up for a minute. With physical therapy this may improve but there's no telling right now whether it's a weakness that can be improved on or if it's a long-term or permanent problem.

It makes me sick to my stomach to think about. When I go to that mental place my body tenses, my face gets hot and I feel just totally ill. Because it doesn't feel right. It's almost all wrong. And, this feeling is based on the thought I had months and months ago - that my fear would trickle into Bea's life. I'm afraid that I'm losing hope.

It's all true. And it feels awful and so good to say it. Because acknowledging what I'm really feeling means that I'm just a normal person. I need to be normal sometimes.

Sunday, September 2, 2012

Bea Update / More Bea Art for Sale

Beatrice loves making art and had a very productive period in late July/early August. She was just getting over her bad bout of hydrosephalus and the feeling in her right hand was almost 100% normal.

And so, of course, she made lots and lots of art. I finally put it all together, photographed and have most of it posted online for sale, again. She loves being a selling professional artist. So, to be direct, if you like her art there are lots of items for sale in my Etsy shop at

Some of the sales become pocket money for her and some go into her bank account. The pocket money is especially important because, well, even though Bea is doing OK right now she's still not well enough to do regular chores and earn an allowance. She's not 100% steady all the time and the feeling in her right hand is highly diminished. This lack of sensation has been pretty steady for about 2 weeks now and we're hoping that it will heal as it did back in January. If not, Bea's a trooper and is doing the best she can with it. And, she's learning to use her left hand for a variety of tasks.

Bea's a very adaptable little girl but I know she's having some stress about her illness. She's a good student and not being able to write well or quickly has made learning a little less enjoyable for her.

This last trip to Pittsburgh and her bout with hydrosephalus definitely took its toll on her. She isn't as happy as usual and has a lot more fear. She doesn't like to go out as much and prefers to sit. She just doesn't move around like she did a few months ago.

Recognizing this problem is hard because it is fairly new and I want to believe that Bea is OK. I don't believe that Bea is depressed but I do believe she is experiencing real stress. I imagine that this would be inevitable. She has been through so darn much over the past 9 months. I don't know how she didn't get stressed before. So, now me and Chris have to work on handling her physical health as well as making sure that she can cope psychologically.

No, that's not totally true. I want better for Bea than just coping. I can cope. She should be happy. Bea really, really, really deserves at least that.