Locks of Love

Some time earlier in the year Meghan told me she wanted to donate her hair.

Inspired by a few stories of children with cancer, and prior to her own diagnosis  (a very mild and stable case) of alopecia areata, she knew something good could come of something so basic so she set about the business of growing her hair.

locks of love

She knew she needed 10 inches to cut for “Locks of Love,” and she was determined.

I was inspired.

So while she grew hers, I quietly grew mine too.  It wasn’t the first time she led me by her example.

And when her resolve strengthened I shared my intention with her, and we were set to donate our hair together in September.

Except mine wasn’t long enough – not yet.  And maybe that was a blessing because she got to blaze the trail.  She sat bravely as her pony tail was chopped off.  She smiled as her curly hair bounced up as if it had been waiting for the weight to be released.

hair 1

hair 2

And somehow I think she grew up even more that day.  And with that selfless act, she became even more beautiful, more mature.

meg school photo

So, when it was finally my turn, she held my hand.  She held my camera.  She reassured me that I had done something good.

Sometimes she is so much the grown up that it is frightening.

Sometimes, albeit rarely, she is a ten year old kid.  I am working to treasure both.

mom school photo

hair 3

It’s OK if my hero is 5’2”, wears a size 8.5 shoe, some of my clothes, and was born after the turn of the century right?

hair 4

She makes me want to be a better person.

better-person

Generous Heart

I’m not exactly sure how the idea got into her head.  At some point Meghan learned it to be possible to donate your hair to make wigs for people who had no hair.  And she decided that she wanted to do it.

For a bit of time it was talk.  We spoke about when it would be a good time, if her hair was long enough, and how it would feel to lose so much hair.  Then she got serious.

Sometime right after school ended she decided it was time.  So, we went to a new hair salon and had her hair measured.

“Close,” they said.  “Come back in about 2 months.”

And, as summers go, time passes and 2 months is gone.  We made the appointment for today so she would have time to “adjust” to the new hair if she wasn’t happy.

Before...
Before…
Almost ready...
Almost ready…

 

She was anxious but determined.  Confident that it was the right thing to do – she bravely sat in the chair.  Her hair was measured to ensure it reached the necessary 10 inches.

Then, even I held my breath as the pony tail was cut off.

Meg LOL 2

And as the hair fell down, the smile of relief sprang up.  She saw the life bounce into her hair.  She knew it would all be OK.

As she looked at her new cut, and adjusted to the reality that she had just done something HUGE for someone in need, I couldn’t help be overwhelmed with pride.

Once again, my girl led me by example.  Once again her bravery is unmatched.

You see last Friday we found a small bald spot on the top of her head.

Yesterday Meghan got the formal diagnosis of “Alopecia Areata.”  It hasn’t got a blessed thing to do with Cowden’s Syndrome.  Although being affected BY Cowden’s Syndrome has made us all more aware of the needs of others who suffer.  The denim ribbon we wear each day is a reminder of the Global Genes Project, and a search for cures, or at least awareness of ALL rare diseases.

Stress can trigger this unpredictable autoimmune hair loss.

We can hope the spot was a reality check for all of us.  A reminder to try to take some deep breaths along the bumpy road we travel.

We kept it from Meghan for the weekend, but as we headed to the dermatologist Tuesday the conversation had to happen.  We go through too much here not to have each other’s trust.  I answer questions as briefly as she allows, but I always answer honestly.

There is no way to know what path it will take, if this will (hopefully) be the end, or the beginning.  Alopecia Areata is a life-long condition.  It may stop now and rest forever.  Or maybe it won’t.  We just don’t know.

But we are kind of used to that around here.  There are no “plans” anymore.  Only guesses, and hopes, and prayers.

And thankfully we live with the confidence that there is a greater plan than any of us can wrap our heads around.

For now, some beautiful little girl will soon receive a wig made in part by Meghan’s beautiful, curly hair.

My beautiful, BRAVE, GENEROUS girl!
My beautiful, BRAVE, GENEROUS girl!