“Happy” Birthday

I’m not sure of what words to use today.

Words are powerful tools. They are the way we make sense of things and communicate that meaning with others. Using them is our way of sharing our human experience.

But I’m not sure of the meaning of today. Of this experience.

Today is my daughter’s 9th birthday. I knew it would be hard. We are entering the “bottom out” phase of this treatment. Six days of high dose chemotherapy that began about 10 days ago. That means, clinically, it is when things get sketchy. Stem cell counts tank. Side effects start to amp up. In other words, this is when we hold on to our hats.

Luckily, a kind friend sent Violet a birthday hat this morning. A fluffy, pink unicorn toque. It’s tightly positioned as we speak on her, itchy, lesioned scalp.

The side effects this round are scary. Severe skin rash. Nausea. Edema. Body pain. Mucositis is the big one, and it’s taken full effect. Because chemo attacks cells that rapidly divide, they kill of the cancer along with healthy growing tissue that lines the mouth and digestive tract. It means not only a mouth full of sores, but lesions that trace along her esophagus, bowels and colon. Thick musos builds throughout this system, making it impossible to swallow or speak. Combined with a flare up of a severe colon infection from previous rounds due to a lack of white blood cells, Violet’s body is in a bad way today. She threw up her nose tube that we used to administer food and medication, so that will eventually need to be put back in, threaded through her nose and down her raw throat.

Happy Birthday.

Wandering the streets in the soggy darkness last night at 1:30am, seizing some fresh air when Violet was able to finally get to sleep, I felt it. That fear. I’ve kept it at bay for awhile now, cradling my mind in thoughts of gratitude, focusing on the gifts that each day brings. Love. Support. Hope. Faith. An acknowledgement that we are not “special” – that everyone has their challenges, and we all make it through.

I’ve said a few times that the one “positive” thing about cancer is that the “C” word gets the street cred, and along with it, the attention and support of the world. No one can hear about a child with cancer, especially one like Violet, and not feel that ache of desperation to take it away. It’s not fair. It’s too much.

But I know so many people going through hard things that don’t get that kind of universal support. Mental illnesses, for one, are unimaginable minefields of hardship, but the world doesn’t reach out to help in the same way. Not every patient has a pile (literally) of presents to help soothe their pain and sorrow. Not everyone is as “lucky” as us.

But at 1:30 in the morning last night, for a few tearful moments, I let the injustice take over. I let myself be angry, and frustrated, and deeply sad.

My beautiful baby is nine. Facebook reminded me with memories of every previous year’s post. “Well Violet, another year around the sun. Another year of blessing the world with your energy and smile. Thanks for making me a mom and making every day feel like magic.”

Still true. Still so true. But now…well, now is also different.

The “C” word means something bigger to me today than it has for awhile. Watching her go through this round of treatment is reminding me of the bigness of this. Of the battle she’s fighting. Of the fact that this is no joke. It’s scary, and real, and really, really hard.

And I can’t take it away. And I can’t make it better. Even making her a video, full of messages and love from friends and family, fell short of what I would have wanted for her. And that says a lot, because that video was so incredibly beautiful and appreciated.

I get messages often that say, “if only we could do more”. And today, that’s how I feel. If only I could do more.

So I have to take a step back. Relax. Remember what’s been working. Remember what it all means. Progress. Presence. Gratitude. Love.

Because even though she can’t talk today, she can smile. She can hold my hand. She can boss me around in writing and draw me funny pictures. She can show me she’s ok, she’s happy, she’s handling it. She can remind me it’s all going to be alright.

Outside the weather is miserable. But we are on the other side of the glass, tucked under warmed hospital blankets, surrounded by kindness and care. Gifts abound. Messages keep coming in to remind her she’s loved. We have each other for company. We have movies to watch and games to play. We don’t have to go anywhere or do anything. And we are safe to feel however we want to feel today. The “birthday cart” the Child Life Specialist prepared for her is on standby for when she wants to party. All things considered we are in the best place we could be.

Nobody has to party today if they don’t want to. And that’s ok. Because it’s all ok. At least, it will be.