Saturday, July 27, 2013

A Little of Everything

Acceptance. Denial. Grief. Fantasy. Refusal. Disappointment. Disbelief. Dreams. Sadness. Confusion. Artifice....

.... A new life. Losing a child, even when you know it's going to happen, creates a life that you don't always understand and don't want to. You experience emotions that you see second hand on TV but never thought you'd go through.

I spent a year caring for Bea through her illness. The postings from those days were mostly cheery and positive, which is just how I am. They don't mean that I wasn't scared or sad or exhausted. Bea's life for the 12 months that she battled cancer was filled with an immense amount of activity. She was in the hospital for 4 weeks and then had radiation 4-5 days per week for another month at 7am. She had physical therapy a few times a week, saw her doctor at least once a month and travelled to Pittsburg for the trial she was in every 3 weeks. She finished kindergarden, took hip hop dance lessons, went to summer camp and took piano lessons. She became a selling artist and had an art show in the fall (during our neighborhood garage sale but still it was cool). She had loads of play dates. Her little bro was in the mix for most of these activities.

When her health started to decline I did everything I could to take the attention off of this and give her amazingly fun things to do. During the fall we went bowling every Sunday afternoon. Even when she couldn't walk she could still push the ball down the little slide the alley has for children. And she liked the snacks.

But she did decline and it all seemed to happen so fast that I didn't have time to process it. Or maybe I didn't want to. Because there was nothing I could do to fix it. I could only take care of her and that just doesn't seem like enough. I owed her more. More time. More love. More life.

I don't feel guilty that I couldn't find a cure but I feel just so damn sad that this disease even exists. I don't want any family to go through what we did. I don't want any more children to give up their future because some cells in their brain decided to do their own thing.

I'm not ready yet but when I am finding a cure for pediatric brain cancer will be a big focus in my life. I don't know how I'll do it but it's coming.

Monday, July 8, 2013

Bea and Lewis Still

I don’t remember if I was pregnant with Lewis when I took Bea to the GA Aquarium. It was a weekday and my hope was that it wouldn’t be too crowded. Bea still needed to be mostly pushed around in a stroller. So, she was probably about a year and a half or so. She was starting to talk a good bit. No sentences but mostly small exclamations and usually relating to whatever was around her.
The entrance of the aquarium is quite dramatic. You pay and go into a room where there are what seems to be hundreds of fish swimming in tanks on either side of you. They are all the same species and look like large, shiny silver dollars. They are fast and don’t ever seem to stop moving.

Directly outside this room is the large rotunda that gets you into one of several exhibitions. The layout is not sequential. You go through one exhibit only to come out the other side into the rotunda again.

On this day we went first into the section that has a large beluga whale. My recollection of this visit is that there was just one whale there but she was set to have a calf in a couple of months and she looked a bit fat.
Anyway, Bea loved fish but had a hard time saying the word clearly. What came out sounded like something other than fish. So, we entered the room, she pointed and shouted “Look, big shit!” Or, at least that’s what it sounded like to me and everybody else in the room.
Fortunately for Bea her clarity of speech came quickly and her vocabulary was quite astounding. Her kindergarden teacher told me that when she would ask the kids in class to come up with words that started with a specific letter Bea would always throw in something unusual. Like “O” – oxygen! Or “F” “France”! Before kindergarden she knew the difference between an omnivore, herbivore and carnivore and could use the terms appropriately. Boy, she was one smart little girl.

Lewis seems to be following in her footsteps. He was a slow starter at speaking but now that he has a handle on it he uses just an extensive vocabulary as she ever did. I’m amazed and thankful that Bea is still showing her influence on him. She set a great example for her little brother.

Wednesday, July 3, 2013

Your Child Could Be the One

If you are coming across my blog and are a parent whose child has been diagnosed with DIPG you are probably where I was 18 months ago. Terrified but determined for save your son or daughter.

Your child could be the one. The one who survives. I still believe it's possible, even though my Beatrice did not survive.

If you are a DIPG parent and want to read through my blog for ideas on things to do or to find out what we did as a family feel free. But, I'd like to issue a friendly warning that the last 6 weeks of Bea's life were tough and from the outside I probably sound like a nutter.

I always believed it was possible that Bea could pull through. And, even though she's gone I believe that a cure is coming. There is going to be a first and a second and a third. Your child could be the one.