You Don’t LOOK Sick

“You don’t look sick!”

If I had a dollar for every time someone directed that comment at my daughter or I, I would be retired – a wealthy woman.

We don’t “look” sick.  As a matter of fact we look alike.  A lot alike. It’s probably due to the fact that I, having the ‘honor’ of being the first in my family known to have the PTEN mutation that causes Cowden’s Syndrome.  To look at us, you would see a vibrant mother and daughter duo – 8 and 38.

We have a lot in common.

When I push her through Disney World in her modified wheel chair each summer, I get the stares that say “spoiled.”  When I pushed her through the Susan G. Komen Breast Cancer walk last fall so we could support my mom, a survivor, someone actually said “Why don’t you get the ten year old out of the stroller?”  Actually she is 8, and she would much rather walk.

You can’t see the AVM in her knee.  The one that has cost her 4 surgeries with an expert people travel the world to see.  You can’t know by looking at her that in February he told us he could not “fix” it.  That he was placing us under the care of another surgeon hours away.  You can’t by looking at her, see the constant swelling.  You can not see the pain.

That is because she is ALWAYS smiling.  She can work a room, and make everyone feel welcome and important.  She is a star student, reading almost 2 years above grade level.  She is friendly, and funny. (She had to get something from her DAD.)  She is confident enough to dance, and participate in storytelling contests.  (Not sure exactly WHO that comes from.)

She takes medicine for pain, medicine for anxiety, medicine for viruses that plague her, medicine for allergies, medicine for her stomach – to ease digestion.  She takes countless diet and nutritional supplements.  She follows a Gluten Free, Casein Free, Soy Free diet without a minute’s hesitation.  She is polite, and extremely well behaved.

I am so proud of her.  Last week when she was having one scan after another they called her a “model patient.”  Now I must confess when she was a baby and I was wondering what she would be good at, being a model patient wasn’t on my list of aspirations.  But since she is good at so many things, the fact that she handles her appointments in stride makes me proud, and confident that she will have the ability to stay out in front of this wretched disease.

“You don’t look sick.”

But yet, we are.  She had surgery in February for that pesky AVM.  I had a diagnosis of breast cancer in March, and a complete hysterectomy in May.  Next month we will take her to have the precancerous thyroid nodules reevaluated, and to have another scan on the knee to pin down when the next surgery will be.  Not if, but when.

With all of these ‘invisible” illnesses come worry.  It is not uncommon for me to talk to my 8 year old about if she will need a mastectomy, even before her own breasts have developed.  She asks me if she will need a hysterectomy.  A wild question, when the concept of what she will be when she grows up hasn’t even been ironed out.  But she is astute.  She knows she will likely walk my road.  She watches.  She thinks.  She asks.

So no, she doesn’t look sick.  Neither of us do, but some days reality is tougher to face than others.  Some days that happy face is a little harder to find.

So, when she woke up today after PT Thursday, kickboxing, and swimming lessons on Friday, she was sore.  Really sore. The celebrex wasn’t helping.  She couldn’t bend her knee.  I rubbed and stretched.  She was annoyed.

She is allowed to be annoyed, here in this house.  She is allowed to be discouraged and disgusted.  I have been all of those things this week, and I know its important to let them out.  I am recovering from my second surgery in less than three months.  I am tired.  I am annoyed, and aside from a few treasured folks who keep checking in, I am really really lonely.  This surgery seems to have pushed a lot of my support network over the edge.  They are a bit tired I guess.  It’s hard to be there for someone when your own life still keeps going, I know.  Especially when they don’t look sick.

So, today she had a turn.  She was discouraged about the prospect of more surgery, and disgusted that the knee seems to remain swollen.  She mourned her dream of running track.  She cried about the permanence of this disease.  She told me she wished she could get sick with something “normal” like a broken arm.  You know, something that can be “fixed.”  She sobbed out her frustration with doctors, surgeries, cancer, and the worries connected with each.  She wants to be more like her friends.   More carefree.

My heart ached as I held her.  She is a tough cookie, but we are all entitled to lose it.  I cried because I felt sad about giving this to her.  I held her tightly and told her how much I love her.  We went through a few tissues, and some long talks.  Lots of things I can tell her I understand, and then some things I can’t.  I told her she can cry.  She can be mad.  She can worry.  She just can NEVER let it win.  She can NEVER let it define who she is.  I will always be sorry she had to inherit this, but I will NEVER be sorry I have her.  She is my heart and soul.  She is my sunshine.  She saved my life.

“You don’t look sick.”

She brushed it off after a few minutes.  Back to the Ipad, and back to taking care of me.  No one outside of my husband and I will ever see her like that.  Her carefully guarded emotions will only let loose where she feels safe.  No one else will ever know her anguish, her pain, her heartache, her worry.  No one, not even our closest family members would ever guess.

I think about all those people, and their quizzical stares.  I know I can’t be too angry.  They don’t know any better.

“You don’t look sick.”

She and I are a lot alike, in so many ways.  And I wouldn’t change a thing.  We are going to be just fine.

3 thoughts on “You Don’t LOOK Sick

  1. I’m amazed by your strength, courage, and tenacity to keep “Cowdens” at bay. I have just begun my battle and hopefully soon will be testing my two boys. Keep up the good fight.

  2. Reblogged this on beatingcowdens and commented:

    We are headed home tomorrow from a wonderful family vacation. I will have lots of lovely things to tell you about the fun we had and the great people we encountered. Unfortunately there are still some ignorant people… even here, who do not realize you can look perfectly healthy and still be “sick.” There were a few times… especially today when the monorail operator gave us an attitude when we asked for a ramp into the handicap accessible car (even though her chair is clearly marked as a wheelchair.) People can be so frustratingly ignorant. She notices now, and it bothers her, but she is awesome, and she tells me she hopes they never know what it’s like because no one should feel this way. So here it is one more time…

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