Thursday, March 15, 2012

I cannot take Lily anywhere without someone reaching out to comment or touch her amazing curls. As she also likes to dance her way through every situation- be it walmart or doctor's visits- she has been likened to Shirley Temple on more than one occasion. I love her curls. LOVE them. I hate trying to tame them, wash them, and brushing them is just a pain, for everyone involved, but they are a part of her. So today when she insisted on having them shorn off, I was taken back. Back to three years ago, fighting through tears as I shaved her tiny 4 year old head so we no longer had to watch the beautiful curls fall out. She rocked bald then- it never bothered her not to have a head full of bouncy curls- she was still Lily. Just as I realized then- it occurred to me today- the thought of cutting her hair was my issue- not hers. I needed to trust what she wanted and help her in this journey- remembering a time, many many years ago when I demanded a Dorothy Hamill do and spent years unable to set foot inside any hair cuttery without a panic attack.  Just like 3 years ago- she was comfortable in her choice, even if I was not. My heart literally hurt as I watched the dark blonde ringlets tumble down  to the floor to be stepped on without care. I faked 2 phone calls and took another to walk outside to catch my breath.  I kept reminding myself it was hair, it was only hair. I reminded myself that 3 years ago, I hoped she would just make it to 5 and just yesterday she turned 7. This was only hair.

Every year, right around now- St. Baldrick's events roll around. I never understood them. I've supported many, been to one, but when asked if I am shaving my head- respond- nope- I'm sure I'll get my chance- such is life when you have a hereditary cancer syndrome.  It mystified me that people want to do this, that they have this choice. It bothered me immensely the year Lily was bald. I hated that everywhere we went- her little noggin elicited such pitiful looks, some would avert their eyes - others would give you that knowing nod and every bit of it hurt. It hurt to be on that end, it hurt to be pitied- it hurt to know there wasn't a damn thing I could do about it. Yet Lily never noticed, the looks, the pain- that was adult business- kids would just ask- why don't you have hair? It bothered me that an entire group of people would shave their heads when they were perfectly healthy and did not have to. But then I looked into where the donations went- to really good programs and research efforts. And people really have to step outside of their comfort zone to do this- and it costs next to nothing to do. So many organizations put so much money into overhead costs, printing, branding and whatnot- all of which is not going into the pockets of researchers looking for a cure or on the head of a little munchkin fighting for their life. It changed my whole outlook on these fundraisers. I really respect St. Baldrick's and those who are brave enough to shave their craniums to stand beside our littlest fighters- rocking bald.

As Lily's curls fell around her today, I again fought back tears. Those curls were more than just hair- they are 3 years of healing, 3 years of growth, they represented everything we fought to get back from 3 years ago. We cut her hair then so we didn't have to continue to watch them fall out bit by bit. Today she chose to cut them, because she wanted to. It was when she sat there grinning ear to ear that I knew this is exactly where we are supposed to be.  Once again it took a brave little monkey to show me something I had overlooked. When she turned to me I saw nothing but her big green eyes and a huge dimple, both which were usually obscured by gigantic curls. For at least 2 of the past years I fought with her daily to pull her hair back so I can see her beautiful face- today she won that fight- but then again so did I.

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Lily Kay Monkey

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