Two of a Kind

The upside of waiting I guess, is that it gives me a bit of time.  Since I can’t concentrate, I multitask.  Simultaneously taking down the Christmas decorations, while doing laundry and eating chocolate chip cookies with white wine.  Seems like a perfect time to stop and blog.


A few months back I posted about Meghan‘s necklace.  The one that we had had created, just for her, inspired by the Global Genes Project logo of the denim jeans.  She received it in August and was so thrilled.  She wears it proudly and looks at it as a platform to explain to people what it stands for.

Meg necklace

Her goal in having it created was to ultimately have the Global Genes Project sell them as a fund raiser.  She has this hope that her idea will ultimately raise money for rare and genetic disorders.  I think she is right, and eventually they will get to selling it.  Although the holidays are a crazy time and a lot of major things have been going on at the Global Genes Project.  They are a super organization.  Working to the benefit of all of us who are affected by rare genetic disorders – in our case, Cowden’s Syndrome.

This fall she had my friend’s husband – who created the piece, engrave hers.  It says “August 2012 – First of its kind.”  How appropriate.  I am quite sure my girl is the “first of her kind” as well.

Because, she decided she wanted me to have one too.  A necklace like hers.

necklace 1

“After all Mom, you didn’t just have breast cancer.  Cowden’s Syndrome is what we will both have – forever.”

She’s right.  As I gulp the last of my wine.  We are at this forever.  Together.  And as much as it flat out stinks, I wouldn’t want to share forever with anyone else.  She is one awesome little girl.  Each of us 1 in 200,000.  Lucky enough to have each other.

Two of a kind
Two of a kind






Proverbs 3:5-6
Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight



As my husband and I lay last night trying to fall asleep.  We lamented over the fact that we are waiting.  Waiting for a call for a biopsy time for Meghan.  Waiting for a final decision on my spleen – still.  Waiting… for all sorts of other less significant things.

The waiting is one of the worst parts of Cowden’s Syndrome.  It is a blessing to have the warning to seek early detection, but the 6 month cycles of scans and tests, coupled with the waiting for results…. sometimes it’s just torture.

Meghan is nervous.  Not about the threat of thyroid cancer.  Bright as she is I doubt she grasps the full reality of that.  She is waiting and worried about the biopsy.  She already struggled to sleep last night.

As we spoke my husband said something that struck me.  He said, “I am a little tired of being carried.  I am glad God is there, but I want to walk a little too.”  It only took me a moment to know he was referring to his favorite poem – the one we used as one of the readings in our wedding.

I guess we are waiting, for our feet to spend some time on the sand, knowing we are being held up – and incredibly grateful for the support…