sum of the parts

~

My entire life, it’s been a source of embarrassment. When I was a kid, I would make up stories to explain. I’d pretend I’d fallen off my bike – skinned my knees and landed on my elbows. I’d say it was a ‘gymnastics thing’ – ya know, from the bars. I’d bandage my knees to hide them.

As I got older, it got worse. And it was no longer confined to my elbows and knees.

I’d wear long sleeves and jeans in the middle of the summer to hide my skin. I preferred to sweat than explain.

I used steroid creams for years. Then I stopped when I realized that my girls were constantly touching my skin. They didn’t really work anyway.

Three years ago, I found a treatment that did work. A super-charged and highly focused phototherapy. Sort of like a tanning booth on steroids. The sessions were a minute long, but the equipment only existed at one hospital. That one minute session took an hour out of my day. Eventually I had to stop going.

There are drugs. The side effects are not remotely acceptable – particularly when weighed against vanity.

Stress exacerbates it. It’s probably the worst it’s ever been.

*

Last week

.

Brooke has stripped down and is getting into the tub. I am sitting on the floor in the bathroom. Katie walks in and surveys the scene, then smiles at her sister. “Brooke, you are one brown little bean,” she says. Indeed she is. No matter how much we slather the kid in sunscreen, she soaks in the rays and turns into a rich, buttery little caramel.

“Katie,” I say, “you’re pretty brown yourself, Chiquita.”

She looks down at her arm and shrugs. “Put it next to your sister’s,” I say. “You’ll see.”

She walks over to Brooke and compares. “Hmm,” she says, “I guess it’s pretty close.” Then to her sister she adds, “Your skin is a really pretty color, Brooke.”

“It is?” she asks. It’s not an invitation to continue the conversation.

My eye is drawn to the scars and scabs all over Brooke’s little body – anxiety as a verb. I cringe. It kills me that her beautiful, perfect skin in marred by anything no less her own hand.

She settles into the tub and all but disappears in the bubbles.

Katie turns to me. “You have really pretty skin too, Mama,” she says.

I try not to grimace.

“Mama, I know this is going to sound a little weird to you, but I like your psoriasis.”

I have no idea what to say.

“It’s part of you, Mama. It makes cool patterns on your skin, ya know? And most of all, it makes you you. So I like it.”

I try to process it, but I can’t. I feel ridiculous.

Years of shame drown in a tsunami of my little girl’s love and all that has just come with it. I love you, she said. All of you. Not despite the parts you’d rather leave behind. No, I love those too, because they are you.

I have no idea what to say. The implications are too big for the room.

I hug my girl. I thank her. And I pray that someday I can grow up to be just like her.

*

24 thoughts on “sum of the parts

  1. My God, I want to grow up like her, too! You had something to do with her acceptance, you know. Don’t ever forget that.

    Love you.
    Mom

  2. Wow. she is amazing! Wow.
    I think we all need to take a moment and look at ourselves through our kids’ eyes. Maybe we’d see what the beauty that they see and we’d stop being so hard on ourselves ๐Ÿ™‚

  3. What a gift from your daughter! With all the struggle and strife, she manages to add such light! She is (they both are) such blessings. How perfectly beautiful!

  4. Two things: 1. This made me cry. 2. I think she has that amazing perspective because YOU (and Luau) have given her that message her whole life. She is beautiful and completely lovable inside and out. You have taught her self-acceptance. It is a constantly reciprocating gift. She’s giving it back to you when you need it. (I hope that made sense; no coffee yet this morning!) xo

  5. We all have those things we don’t like about ourselves. You’ve taught your girl to be a beautiful and accepting human being. She loves ALL of you, and rightly so. She has learned from your example. What an amazing young lady she is! And you should take at least a little credit for that! ๐Ÿ™‚

  6. This turned on the water works….sometimes it takes the pureness of youth to help open our eyes…and help us love all of ourselves….this was beautiful.

  7. You already have grown up, and that is why she feels as she does and understands real love. It’s the best gift you could have given her…..
    Love you skin and all, always have…..
    Dad

  8. Oh my god. This made me weep. I have an ex who struggled with psoriasis for years and years, and it really destroyed his self-esteem – while I watched, helpless to do what your daughter did for you. Thank goodness she’s got you around to teach her that kind of message – and thank goodness you’ve got her around to shine it back at you. Gives me hope for the future.

  9. What an amazing young lady you are raising! You should be so proud of the the hand you have had to play in it and I know you are proud of her. She never stops teaching everyone something.

  10. I’m having a ridiculously hard time trying to keep these tears from falling out of my eyes- What a sweet sweet girl, and what a great job you did making her that way ๐Ÿ™‚ I too suffer from psoriasis, and share the shame that comes along with it. I’m constantly hiding my hands and fingers when the breakouts are bad- and my son (who is 10) thinks is the disgusting and refuses to touch my hands. It’s really kind of heartbreaking- but I suppose it is what is is. In any case- I love your blog ๐Ÿ™‚

  11. What a beautiful young lady you have!! So full of love and acceptance! Can she teach all the kids to be like that.. It would make for a beautiful world!

  12. Reblogged this on The Spaces In Between and commented:
    “Years of shame drown in a tsunami of my little girlโ€™s love and all that has just come with it. I love you, she said. All of you. Not despite the parts youโ€™d rather leave behind. No, I love those too, because they are you.”

  13. When I met my husband, we were in college and his hands looked much more worn and weathered than the rest of his 19 year old self. I remembered thinking how much I liked the way they looked. I loved holding his hands once we started dating. I loved to look at them and trace the lines. I didnt realize that he was sensitive to the way they looked bc it was eczema and psorasis that made them look the way they did. I know the grimace you made bc he would make it too when I said I loved his hands. He didnt tell me for years why they looked the way they did. But without those conditions, he just wouldnt be “him” so I know what Katie means when she says she likes your psorasis. I might just tell my husband the same thing tonight.

  14. If you were referring to eximer laser treatment, you should explore a home narrow band uvb unit. Moat medical insurance covers it, treatment once established can be less than five minutes once or twice a week.

    It works well for all forms of psoriasis. I have a full body unit, and use it once a week for three minutes.

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