Just About Over

The month that I dreaded is just about over.

Bea's 8th birthday was this past Thursday. I took Lewis out of school and Chris took the day off. The plan was to go to the Atlanta Botanic Gardens but we just couldn't get moving. So we ended up going out to lunch and the park. Then we went home and spent some time in our back yard. Chris tended to the garden.

I know that a lot of friends read my blog to see what's really going on because in person I don't get really emotional. It makes me uncomfortable and that discomfort overrides any grief that I'm feeling. So I get upset and cry on my own, which is how I prefer it.

This month has been especially hard and it's made me a real pain in the ass some days. I'm cranky and pretty whiny when I talk to friends. It's a little hard to be positive some days. I don't ever spend a day sulking or sleeping or anything like that. But, the sunny side of things that usually presents itself isn't.

So I continue to do the things that I like to do and don't avoid anything that's difficult. The reason is that even when I'm down I am optimistic about my future. I hope  that one day I'll be able to look at a photo album of Bea and feel happy. Maybe not blissfully happy but that'd be just fine.

The Little Man

I call Lewis "Little Man". It's a term of endearment and I never address him with those words when he's in trouble. I want him to know that those are good words and not a nickname to fear.

Lewis started Kindergarten a month ago and is loving it. During the first week of school he started asking a lot about Beatrice again. He asked where she was and I told him that I didn't know for sure but that if heaven does exist that's where she certainly is. For her sake I hope it does because she deserves to be there and for my sake I'd like to think that there's a place we can meet again. But, I just don't know. I can only hope.

Lewis wanted to see where heaven is on a map and asked the question several different ways to try and get an answer he understood. The idea of a place that isn't part of our physical space was too abstract for him to grasp. To him heaven is akin to the North Pole. It's a place in the world that you just can't get to but it's on our planet.

Anyway, Lewis is a great kid and does what kids his age do. He's really curious and wants to play all the time. He's reading now and I frequently find him passed out in his bed on top of a book. He likes rules when they're written down and consistent. When they're not he will be quick to question their legitimacy.

I do as much as I can to keep him from being lonely. His favorite cartoons are not age appropriate - a little young - but they're all about a brother and sister so I just can't encourage him to watch something else. I feel that he needs their stories and understands the bond of the sibling characters. It's a place just needs to go sometimes.

He is still very attached to his Mickey Mouse and takes him almost everywhere. When the doll gets dirty he asks me to wash him. He sometimes takes on a Mickey persona but that's usually an excuse to do Lewis' dirty work. If something falls over or there's a mess to clean up I find that it's often Mickey's fault. Funny how he doesn't recognize that when Bea was alive it was usually Lewis who made the messes.

Lewis is young and has adjusted well to his new normal. That's what happens when you're that young. Every day is an adaptation and shapes who you will be. Thankfully, it seems that Lewis is on his way and will soon be his own person, not just my little man.

Perfection

In life I think we all strive for some kind of perfection. The perfection that we seek is usually not that complicated. The perfect slice of pie. The perfect sunset. The perfect smile when you make a friend laugh. A great pair of shoes.

I had the perfect family. A great husband and "one of each" - a smart, amazing daughter and adorable, bubbly son. Two years apart and the best of friends. They were good kids and life was fabulous. Anything I had to complain about was usually pretty petty stuff.

With Bea's passing suddenly my life was imperfect. Eight months later I am just starting to figure out this new imperfect life. Chris is still great and Lewis is still adorable and bubbly. But I still need my smart and amazing Beatrice. Lewis still needs his sister and Chris still needs his Boo. That need for her makes even wonderful days less than perfect. It doesn't make those days necessarily sad but it leaves me with the feeling that something was supposed to happen and didn't.

If you have a sick child, especially a child who is terminally ill, make sure that you enjoy every second with him or her that you can. Enjoy that perfect time you have with them. Because even when Bea was at her most ill I felt that life was still perfect. Stressful and sometimes painful but perfect. It was so much better to have her than to not.

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.

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.

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.

First Holiday

We went on our first vacation without Bea last week. We went to St. Simon's Island, a lovely, hot and lazy little beach town on the southern tip of GA. It was a week of beach days, lunching at the 4th of May and eating ice cream at Moo Cow. A nice, simple week with an ocean view. Even the ocean there is lazy with waves barely hitting 6 inches tall.

Days like last week's are often very surreal for me. They seem more like a dream than days that are actually happening. I catch myself not believing that the moment is real and that Bea is truly gone. I never spend all day in this kind of non-real place but there are lots of those short moments where my breath leaves me and nothing makes sense. And then I breathe again and I know where I am and what I have to do.

I am still a mom and that keeps me focused and grounded. I still have a wonderful little man to care for and a personal life that's full of good things. I know that. I just wish so very badly that I had my Sweet Bea back to share them with, too.