Quiet

I haven't felt particularly inspired to write about my life this fall. I've just very much needed the quiet.

Taking care of Bea and becoming a public figure of some sort was very much outside of my comfort zone. I am actually not an extrovert but had to put on that hat to provide her with the entertainment and company that she wanted and needed during the 12 months of her illness. Bea was a little shy but got a lot of energy from the buzz around her. This need fueled me to provide that for her and so I made sure she had it.

It's amazing what you can do and be given the right motivation. You can become someone you never knew you could be. Your natural inclinations are turned on their head and your life becomes virtually unrecognizable.

In many ways I lost myself in Bea's illness. It's the only time in my life when I found not being myself was OK. But with her death came not only grief but finding out who I am without her. I like who I am but I don't like being without her. And that's an essential part of who I am now and there's no choice about it. Part of accepting her death has been to accept who I am now.

And what I am is a quiet person who prefers the company of just one or a few friends, who is uncomfortable at parties and who prefers spending my day doing creating things by myself or hanging out with my family.

It's a pretty simple life but it's the one that I've made. And I like it.

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.

The Heavy Days

Like anybody else I'm a sentimental person and I pick and choose what I'm sentimental about. My tendency is to pine over days of past happiness and feel deeply that I could relive those days. I'll go over little details in my head and wish I were in that time and place.

Today I wish I were at Disneyworld in 2012.

One year ago we took the kids on their first of two amazing vacations to Disney World. I didn't post much about it because the trip over Memorial Day was just so magical and for some reason I didn't want to share too much.

One year ago today we were waking up at the Animal Kingdom Lodge with great expectations. Chances are we had brunch at the lodge because it was the best food. The plans for the day were to go to Magic Kingdom. I remember being there and watching a performance in front of the big castle. I remember Bea and Lewis sitting in their rented kid stroller enjoying the singing and dancing but not having much of a view. So Chris picked up Bea and I held Lewis up as high as we could so they could see.

I remember visiting Tomorrowland and going on the People Mover multiple times. I don't remember if this was the day when it rained in the morning and we spent lunch and some play time at the Contemporary Resort. I think it was. If so, we hung out there to eat and play in the arcade while the rain passed and then went onto Magic Kingdom.

I remember Bea being able to walk and talk like any normal, healthy child. I didn't have to hold her hand when she walked because she was steady and strong. I didn't have to worry about her running out of energy because she had plenty to spare.

I'm so glad that I have these wonderful memories. But, I want more. I've been told that Chris and I did so well to give Bea a great year. That gives us a small amount of peace but in the larger scheme of things that's hardly a prize. It's just something said to distract from the harsh reality of her absence. It's never going to be OK that she's gone. No number of happy stories is going to erase that fact. 

What I Have

It's hot in Georgia again. That's typical for late May in the deep south. The heat doesn't bother me. It elevates a lot of the smells I love in the summer. Fresh cut grass. Steamy rain. Dark, rich red mud that's full of clay.

Life today is a dichotomy. It is a day split into two very different feelings. Joy, or at least contentment and peace, and sadness. Learning to live with both has been difficult. The joy I experience comes with no guilt but I find that whenever I have any kind of extreme feeling - especially good ones - I quickly shift emotional gears and drift into feelings of loss and sadness. I wrote some weeks ago about the grief being close to the surface. It's still there and just about anything can trigger it. The most common trigger for me ironically is happiness.

It can be a very confusing place. A very fragile space. A little bit broken. Not quite whole.

I don't know what I would do if I didn't have Lewis. He keeps me strong and focused most days. His exhuberant happiness is contagious. And he loves me unconditionally and knows that I love him, too. He lets me care for him and be his best mommy. I so deperately need to be that person.

I am so grateful for Lewis. He gives me all that I have and everything I want to be.

Remembering an Important Moment

There are lots of moments everyday when I think of Bea. Sometimes they make me sad. Other times and, honestly less often, they lift my spirits. And then there are those singular moments when you recognize a shift in your person and know that that moment changed you and her from then on.

This little story is one of those moments. And it is one of the best examples of what a parent's love can do for a child that I can share.

It was early morning and Lewis was at summer camp. So, it was just me and Bea at home. I don't remember what was scheduled for the day but I do recall that it was summer. School hadn't started and she was still very active. But she was not well enough to go to camp anymore.

Bea had a headache. This wasn't unusual and so I gave her Tylenol to take the edge off and hopefully take it away. Bea was tired of headaches and became very impatient when the Tylenol didn't work quickly. She yelled "I have a headache" over and over and was very upset that I couldn't fix it.

I moved to sit next to her, took her face in my hands and said something to this effect: "Mommy never ever wants you to hurt and I don't like that you have headaches either. I am doing EVERYTHING I can to make you feel better because I love you so much. And sometimes I can't do better but I am doing my best."

It was a spontaneous little speech and I didn't think it would make her feel any better.

It did. She relaxed and her headache eventually went away. I remember feeling how important her trust was for me to care for her and knowing that I could never break that trust.

She trusted me completely. She knew I would care of her and make her feel better when she didn't feel good. Bea let me heal and soothe her the best way I knew how and, wow, what a gift that was.

Close to the Surface

It's been awhile since I posted last and I'm getting close to posting my last words here. This may be because I'm feeling quiet about expressing how I really feel most days or maybe because I simply have nothing left to say. I don't know.

But, the reality is this... the grief is still very close to the surface. This means that it's always there just beneath my smiles and light conversation. It's very much present and I feel it almost all the time. It's not unbearable. It's just present.

Grief presents itself in all kinds of ways. Lately I've been feeling disappointed and that the world lacks fairness. There's no person or deity to blame. I don't believe in divine intervention. I do believe that every doctor Bea saw did everything they could for her, and more. It's just not fair that Bea got cancer to begin with. Or that the cancer she did get was so difficult to treat. Or that the initial treatment with radiation makes you believe that the doctors are wrong and that the cancer can be treated and go away.

Cancer sucker punches over and over again. You think it's over and life is great and then you find out that it's not and there's a lot more work to do to get rid of it. Or you find out that you can't but that there may be some medicine that could help but there's no guarantee and that this new medicine may make you or your loved one really sick in new and horrible ways.

But, this isn't about me and what I lost. It's about what Bea will never have. I could go through the list I have in my head but it's way too long and way too painful to do. No more milestones. No more little happy moments. For her. Not for me. She got seriously short changed. It's just not fair.

It's so easy to go to this place. Seeing the sun rise or my pink azaleas blooming or smelling fresh cut grass can set me off into the world of the unfair. Because it's not fair that Bea won't be able to see the sun rise or set or enjoy her favorite pink flowers or run barefoot in the grass. It's really, really, really not fair.

Opportunities

I've been told that I handled Bea's cancer with grace. That's a kind observation. From the inside looking out that's not how I saw things.

I saw every day as an opportunity. I still do. An opportunity for joy and sharing and love with my family. A day where I can do the things that I love the most. An exciting day or a peaceful day or a silly day. Many days were broken up so all of those moments were in the mix one after the other.

What is the point of being on this planet if you can't experience and share joy? Why sit around and complain about things that you really can fix? Why do we do things that are unsatisfying day in and day out and call that compromise? It's not compromise. It's unspirited and not joyful.

This opinion that I'm putting out there is not new to me and it didn't come to me after Bea got sick. Her illness cemented my resolve to never miss an opportunity for joy and to make sure that while she was alive that she didn't either. And, Lewis, too, of course.

Even today, after everything that our family has gone through, Lewis is the happiest little boy I know. He is five and STILL a bundle of joy. Those of you who know him understand what I mean. He is a happy, bouncing, laughing, silly, curious, entertaining little man who can't pass up a single chance for fun. And I don't want him to give up that love for life when he turns 6 or 16 or 60.

Bea won't have those chances again but at least she had a year. I feel for the parent who looses a child suddenly. Or the parent whose child becomes ill and never fully recovers. Bea had so many wonderfully healthy months and we filled them all with as much joy as we could fit. Knowing that gives me a lot of peace. I miss her terribly but she knows that and it won't change the amazing year she had before she died.

The Hard Part, Still

It's been over two months since Bea died and I'll admit that it is not one bit easier today. In many ways it's harder because it's been so long since I've seen her. I miss her more than ever.

If you have children it's hard to imagine them not returning from a weekend trip with their grandparents or not coming home from camp. You miss them but you know you'll get to hug them and spend time with them again. Your longing for their return will be satisfied.

I am not satisfied.

No amount of work or art classes or playing tennis or hanging with friends fills that void. It's all entertaining and I appreciate it but it's not what I need. And I can't have what I need.

This is where denial does you no good. Because I have no cute little foot to tickle in the car. Or long beautiful hair to brush before school. Or giggly hug-a-bug to love on all morning, afternoon and evening. Because that was what Bea gave me. When I need Bea I hit my wall of denial and crash right through it.

It's so incredibly painful.

This pain doesn't prevent me from doing the things I love to do and take care of Lewis and be with Chris. I am living a good life and appreciate everything I have. Losing Bea has motivated me to seize every opportunity for joy that am given and drives me to seek it out on my own. No regrets. Lots of tears but definitely no regrets.

Coming Back to Earth

I'm listening to a song off the soundtrack from one of Bea's all time favorite movies - Wall-E. The song is called "Down to Earth" by Peter Gabriel. I love this song because, well, it's a great song, but more importantly it ties me to Bea.

It is very hard to stay in reality right after you lose a child. They are just so present. Bea is everywhere, all over my house, in my thoughts, in my dreams. She is getting off school the bus at 2:38, excited to come home and play with Lewis. 

But it is impossible to wish away the truth of her absence. I try and try and try. Every morning I turn on the light in her room hoping that she'll be there. I know that she won't but I have to check. I know she's not on the school bus but I still dream that she's coming home. This isn't optimism. It's denial.

A little bit of denial is what I need today. It's giving me the time to come to terms with what really happened to Bea over the past 12 months and how to learn to live without her. Because this new reality is not one that I chose and it's not one that I want. Any of you who know me really well know how good I am at adjusting circumstances so that it suits me. How can I adjust these circumstances so that they suit me? For once in my life I can't do it. Denial is the only way until I'm ready to come back to earth.

The First Couple of Weeks

These first couple of weeks without Bea have been really hard and I spend a lot of time trying not to think about what happened. But every day, several times a day, a small reminder presents itself. Sometimes I have a happy memory. More often than not it's a time for another cry. What an amazing release crying can be. It's exhausting but it gives me permission to collapse when I need.

The little things that set me off are ridiculous in their miniscule nature. Like realizing that her colorful socks aren't in the wash that I'm doing today.

And sometimes, less often, I think of the gravity of what happened to Bea and realize what both of us lost. That's the really hard part. The reality that makes me lose my breath. Because intellectually I know what happened to Bea. But my love for her is visceral. It's more than just a feeling.

Even through all of this our family has made it through the last couple of weeks. We went to Savannah for a few days. That was hard but I think no matter where we would have been... well, it would have been. Chris went back to the office. I'm back to working from home, designing and making art. Lewis is back at school. Eva sleeps on her favorite chair in the kitchen most days.

Lewis is an amazing little man and has been asking questions about Bea now and again. Understanding death is difficult for him but today he doesn't appear to be grieving. He doesn't understand that death is finite and even asked once how to make someone feel better after they die. I feel that he still thinks Bea is going to return. So, we're keeping a watchful eye and plan to get him into play therapy within the next few weeks. He's not the most verbally expressive kid so this kind of therapy may help him understand the realities that are confusing to him and help him sort through his feelings when he does begin to understand.