“I hope you never lose your sense of wonder…”

Meghan left tonight for the Father Daughter Dance with her Dad.  I am always so grateful for him, but especially on nights like tonight when he can show her the time of her life.  She needs that time – to be happy and carefree.  She needs time to just be a kid.

Father Daughter Dance November 2009

Father Daughter Dance November 2009

I looked back on some old photos from dances in years past.  I know it sounds cliche, but I can not believe where the time has gone.  It stung especially I think this weekend, as my girl lost her last baby tooth, and came to the realization that Santa, and the tooth fairy, and all that magical mystery of childhood isn’t “real” in the way she had thought.

Father Daughter Dance November 2010

Father Daughter Dance November 2010

I think she took it better than me.

I cried a lot this weekend.

I think I am angry too if I am honest.  I think I am not just sad, but angry.

And that’s ok.  I have to let myself feel even the ugly emotions when they are in there.

I am angry about Cowden’s Syndrome.   I am angry about the cloud it carries, even on the sunny days.  We always seem to need to pack an umbrella in some game of anticipation – not designed to be won, just played.  Forever.

I have said before, and I will say again – if it was just me…

Father Daughter Dance November 201

Father Daughter Dance November 2011

But it’s not.  It’s her too.  That is reality, and it really does torture me sometimes.

All parents feel pangs of sadness as their children grow.  And, Meghan being my one and only, I am sure the pangs sting extra hard.  But, there is more than that.  We deal with something most parents don’t.

As her age increases the looming cancer threats that Cowden’s carries with it increase as well.  At her age, the biggest threat is thyroid cancer, and we are battling the beast head on.  We have dealt with, and continue to fight with the AVM in her knee, and we have gotten past the lipoma in her back.  All  thanks to Cowden’s Syndrome.

But, as she grows and matures, so does her body, and with it her wisdom.

She looks quizzically at my silicone breasts and her own developing ones.  She wonders.  Sometimes to herself.  Sometimes aloud.  When will it be my turn?

She asks if she will be able to have children, or if she will need to have her uterus out first.  She asks that if she does have children… do they have to have a PTEN mutation?  Do they have to have Cowden’s Syndrome?

Too many questions to flood the mind of my 4 foot 11 9 year old.  Too many questions for the string bean with the developing body.  Too many worries for my baby girl.

I am angry.  But thankfully she is not.  She takes each day as it comes.  She accepts the eventuality that one day the biopsy will not be negative.

Father Daughter Dance January 2013

Father Daughter Dance January 2013

I sheltered her for a long time, but they made me lay it on the line this year.  So we had the “cancer” talk in the waiting room of Memorial Sloan Kettering last month.  I told her there was no guarantee she would get cancer.  So she spun the question and asked me how many people with Cowden’s I interact with have NOT had cancer.  The number is small.

So we talked about the benefit we have that others don’t.  We talked about how constant screening means we will beat whatever beast tried to get at us.  We will be vigilant.

dance in the rain

We will win.

I get angry sometimes.  She just finds other ways to make me smile.  She keeps my heart soft.  She is my rock.  Wise beyond her years, and still a kid at heart.

I hope you and Daddy dance your hearts out tonight!

5 thoughts on ““I hope you never lose your sense of wonder…”

  1. You are truly amazing. I totally get it. My son Alexander was dx in Feb 2012 with PTEN hts. Proteus like. We just endured the thyroid cancer scare ourselves this past Dec. Nothing like trying to find joy in the holidays while waiting huh? I admire your courage and what you are doing with your site. This is truly more than God should ever give anyone to handle.

  2. My son was dx when he was 16. He is 20 now and I worry everyday about his future. He has lost his thyroid due to cancer. His father or myself do not have cowdens syndrome so we had no way of knowing his health was ever in danger. Ill pray for your family.

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