Sunday, April 13, 2014

Finding Something She can DO

We were stopped at a light on the way back from voice lessons. A man stood on the median, tan, muscled and holding a cardboard sign that said- Hungry vet. Please Help. God Bless. My instant judgment was that he looked way healthier than me.  He accepted some bills from the car in front of me and the car behind. We made eye contact. I nodded. His gaze lingered.

Mom?- Lily piped up from the back.

Yes Lil.

Why do you not give money to the homeless guys on the corner?

Yep stabbing pain through heart.  So I explained that in all fairness, he looked healthier than me. But that there are a lot of needs in the world and I decided that I couldn't donate to every single one. That I give a lot of money to cancer research and supporting families with cancer, like ours.

Is it because you are worried that he's not really homeless? She asked.

In all honesty- it makes me uncomfortable. Because it is true. I don't know his circumstances, but my general judgement is that if you are able to walk back and forth on a median all day, there are options. And that makes me feel bad. I feel like a lesson in Karma's about to be all up in my business.

Well Lil, I give a lot to charity, I've, we've raised lots for charity and research- we did big Lemonade Stands, I give to friends when they raise money for causes or are in need and mostly I donate time.  I feel very strongly that if you are going to ask for money you should DO something for it- make lemonade, bake cookies, sell tickets. We are going to go to St. Baldrick's this year, it's not on Bella's birthday this year. That raises lots of money for cancer research and we have supported lots of friends who do this.

Why can't I shave my head? Lily has tears in her eyes.

No one said you couldn't. Lily, you remember being bald. You didn't have a choice. You have beautiful hair, everyone loves your hair. You don't really want to shave it off. It takes forever to grow back. We can raise money another way.

The cavernous pit between my heart and stomach grows.  Lily is sincere. She is calculated. She thinks. She is serious.

I want to shave my hair. I want to honor you.  Now I am the one fighting tears. Well played Karma, well played.

I send panicked texts to Phil and friends who understand. Phil says the same thing- we'll talk her out of it.  I'm not sure I want to talk her out of it, but I want her to think on it. My friends are supportive. Those who have fought cancer or have kids with cancer feel the conundrum.  You never feel safe after cancer touches you- you never know when it will reach out for you again. Especially with LFS. I don't want to ask my friends for money. They have been so generous with us and our causes over the years. A friend tells me- there is no worthier cause. I am so tired of being a worthy cause But GOD DAMN IT- if we are- then it has got to go towards making changes in the cancer world.

Shaving hair isn't a huge deal. But it takes us back to a time when life was very hard and uncertain. I am reminded that time was 5 years ago. And look at her now. Look at all this hair. That time there was no choice, she had to fight cancer in order to get better. Now she has a choice. She wants to do this. I feel horrible for not being excited. I feel bad that this is so emotional for me. I feel bad because I will have to publicly be emotional. I don't like to be publicly emotional. I feel bad because I worry so much that with Li Fraumeni Syndrome- there will be other times that she WON'T have a choice. There are so many worries and here is my 9 year old- embracing the attitude of mine 5 months ago- it is just hair- it will grow back- her NEED to DO something. I remember being that kid- watching my brother get sick, lose his hair and not being able to DO anything. So I signed up to go to Honduras for community service. I remember being that daughter- watching my dad's gigantic bald head- no hat on earth big enough to cover it- save a specially tailored cowboy hat- not being able to DO anything to make it go away. So I volunteered at Children's Hospital and got a fellowship at a cancer research facility. I am that mom- who watched her child suffer- because of a hereditary cancer syndrome. So I created a group for Li Fraumeni Syndrome.  None of these things could I have done effectively without help from others.

It is more important to me to support her in her need to do something than my need not to be reminded of a time she was very sick or my worry that this won't be the last time she is bald. And I worry there's not enough time to raise as much as she could and the effort and I am just so tired. Tired of cancer, tired of the sadness tired of the immense emotions it forces me to feel over and over and over.  And as a wise friend told me- it's not about the money she COULD raise, its about her empowerment and seeing that she can DO something and that she NEEDS to do it to support you.  I know that feeling so well- not knowing WHAT to do but needing to DO Something.  If we DO something perhaps it will prevent others from having to be bald in the future. It will prevent her from HAVING to be bald in the future.

SO it's time to put the tissues in my pocket and break out the waterproof eyeliner and help her DO this. I set up her page at St. Baldricks.  We made a video so she could tell people why she is doing this, I told her I would post it on my Facebook page and here.  We talked about why. She kept coming back to honoring me and kids with cancer. I had to remind her she had cancer. She is one of those kids.  And I am Honored to be her mom.

Lily's St. Baldrick's Page can be found HERE

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Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)