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.