I Can’t Fix It

I can’t fix it.

It’s not a scraped knee, or a ripped pair of pants

It’s not as easy as baking a special treat, or giving some extra hugs. 

I can’t fix it.  And it’s going to be here forever.

A little over a year ago we knew nothing of Cowden’s Syndrome.  We knew we had a smart, funny little girl with lots of medical issues.  We knew we were stumping the best of the best doctors.  We knew we were getting by.

And then they figured it out.  And the world started spinning out of control.  Just over a year ago, I got my diagnosis too.

Surgeries, cancer, pain, scans, bloodwork, appointments, bills, headaches, heartaches, illness, missed events, fatigue.

I can’t fix it.

“Love You Forever” is one of my all time favorite stories.

I guess it hit me hardest today.  I never know when reality is going to come at me like a two by four.  But, today it did a number on me.

We went to the orthodontist for her monthly visit.  It has been just over 4 weeks since the braces went on.  She has been a trooper.  Mature as anything.  Careful.  Diligent.  Typical Meghan.  And yet, the gums are starting to overtake the braces.  It’s almost unreal to watch.  We brush – often together.  With an expensive fancy toothbrush.  I help her floss, and still they grow.

We were both a little worried that the orthodontist would yell at her.  Reprimand her for poor hygiene.  But, he was great.  I can’t say he understands “Cowden’s Syndrome” and its overgrowth issues, but he did understand Meghan.   We have been with the office 2 years, and he knows her gums are “extremely reactive.”  So he gave me more tips to help her brush, and suggested another ridiculously expensive air flosser.

But, during the course of the conversation he did say, if they keep growing and overtake the brackets he will have to remove the brackets, have an oral surgeon push back the gums, and then reapply the brackets.

Well, my little 9-year-old who is just about finished with Tolkien‘s “The Lord of the Rings,” had NO problem at all with the context clues on that one.

Several years ago, before we knew it to be a typical “Cowden’s ” growth, Meghan had a large mass removed from the gum over her front tooth.  I will never forget it.  They kept her awake.  Gave her (not nearly enough) Valium, and I had to hold her as they burned it off. 

Apparently I am not the only one who will never forget it.  She was beside herself when we left the office, and remained on edge all night.  She kept reminding me how bad it hurt for one tooth, and how she does NOT want to deal with it for 6.

I can’t say as I blame her, but with little else to say, I simply said,”I’m sorry.”  To which she, in her most grown up voice said, “I know you are, and it’s not your fault.  But you can’t fix it.  You can’t fix me.  No one can.”

At that point trying to reassure her that she wasn’t broken would have been pointless.

I let her go.  She played on her Ipad, finished most of her weekend homework, and watched a movie with Dad.

He shoulders seemed a little heavier.  More of the weight of the world on my baby.  I can’t fix it.  I can’t do anything to stop the firestorm that will come our way in the next decades.  I can only be vigilant.  And hold her hand.  And love her. 

 Oh, how I love her.

Reality Check

It is not the critic who counts;
not the man who points out how the strong man stumbled
or where the doer of deeds could have done them better.
The credit belongs to the man
who is actually in the arena,
whose face is marred by dust and sweat and blood;
who strives valiantly;
who errs and comes short again and again;
who knows great enthusiasms,
the great devotions;
who spends himself in a worthy cause;
who at the best, knows in the end the triumph of high achievement,
and who, at the worst, if he fails, at least fails while
DARING GREATLY
so that his place shall never be
with those timid souls
who know neither victory or defeat.

Theodore Roosevelt
26th President Of The United States

I intended to write something entirely different tonight, but when I started searching for words of encouragement, to ease my overwhelmed soul, I came across some that were worth copying here.

Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all.

  Dale Carnegie
American Author

The whole idea of living with a chronic disease really just stinks.  I mean there are a lot of things, in a lot of people’s lives that just stink, and there are ever so many that I would never for a moment trade places with.  But, that doesn’t change the reality that this genetic disorder, this PTEN mutation, this COWDEN’s SYNDROME, is now part of our “real life,” and I would like to send it back.

Well meaning people, people I love with all my heart, and people I am indifferent to, ask me all the time how we are.  I know they would love to hear that we are great.  They’d like to hear that all is well.  I could tell them that  there are no deep dark fears of tumors or cancers, or surgeries keeping me up at night.  I often lie and say, “great” forgetting to mention the scary headaches, the joint pain and the anxiety that hide behind the beautiful “braces covered” smile of my little girl.  I sometimes say, “we are hanging in there,” which some days means we won’t spend three hours at a doctor’s appointment today, or I am not waiting for a phone call, or a nerve-wracking test result.  Some days it means my heart is in my throat – but I don’t know how to tell you.

I remember when I used to love to eat.  Lots of food – carbs, junk food, candy.  I used to have an appetite, and enough energy to exercise too.  I remember several sizes ago when I had a closet full of clothes.  Now I have enough pants and shirts to get me through.  I remember when my old boobs filled out my tops. 

I sometimes think to myself, “this is not my real life.”  Raw fatigue.  Nerves.  Stress.  Balancing a full-time job, and the normal demands of parenting with the full-time job of managing this disease.  Has it really only been a year that life has been this complicated?  There were always issues.  But a year since the diagnosis.  The confirmation that these risk factors belonged to us.  That they were real, and pressing. 

And yet to look at us – you would never know.  You wouldn’t know of this other life we lead.  This “elephant in the room.” 

Everyone has something.  I have said it a million times before, and I will say it again.  It could ALWAYS be worse, and there is ALWAYS something to be thankful for.  I am grateful for that reality check.

When I don’t call you back for a few weeks.  Or, when I start sending cards late, and losing track of dates.  Don’t worry too much.  We are treading water here.  We will get by.  Just cut us some slack.  Some days it just doesn’t all fit, and some days there is just not enough wine.