Gratitude

didnt see it coming

Gratitude.

It’s always a good time to be grateful.  Especially Thanksgiving week with catastrophe averted.  Even full of memories from a year ago, I feel gratitude.

Just a week ago I wrote a post called “Plot Twist”

https://beatingcowdens.com/2014/11/17/plot-twist/

where I mentioned the AVM in the knee was starting to become a problem.

One day I will learn to trust instincts.  I will look back on signs and think – I should have seen that coming.  But, for now I remain a bit of a slow learner.

See, in May when we ended up with the gastritis mess, there were warning signs.  For days prior she spoke of the “fire” in her throat.  Of this general feeling of being unsettled.  And then everything broke down.

Monday was not the first time in recent weeks she had complained about the knee.

In August, about three months after we stopped the Celebrex, there were signs.  Subtle signs.  We went for the MRI.  We went for the visit.  The doctor saw “something,” evidence the AVM was still “live.”  He told her to wait until there was pain, and then come see him.   Our appointment was for December 1.

The pain has been progressive.  But, right or wrong, having a rare disease, and living with a child who has one too, I often have on my “suck it up and let’s go” personality.

“Mom, my knee hurts.  I think it’s swollen.”  

“Yes. it’s a little swollen, but mine is too.  You’ll be ok.”

“Mom, my leg is throbbing.  I can feel it pulsing.”

“Mine does that too – here, feel.  Now let’s go – we have to get to school”

Ok, so looking back, perhaps these are not normal conversations.  I am in consultation with a vascular surgeon to address the messiest of my leg issues – as soon as I can fit it in.  Maybe most parents would have been more bothered.  I mean I WAS bothered.  But, if I stopped every time – goodness, we’d never even get out of the house.  If I addressed every pain – I’d give this disease more power than I’d like it to have.

So for now, we “suck it up” together.  Different.  But the same.

We talk about other people’s pain.  We wonder about different types of pain.  We think about what it would be like if the pain could be fixed.  We wonder about kids who use pain as an excuse.  We acknowledge that you can never know what goes on in someone else’s body.

So we adopted positive thinking and visualization.  She drew a smiley face on that knee to convince herself she could get through it.  And she pressed on.

Sunday, while I was in Vermont, she was at a swim clinic.  And Monday, she finished an hour and change of practice.  Walked past me smiling.  Walked out of the locker room and basically fell to the floor.

I did some more of my “suck it up” talking, as my heart sank.  This was the real deal, but we were too far from the car.  Everything about her body language told me we were in trouble.  I finally, by Grace alone got her into the car, and headed immediately to urgi care.  We lasted about 10 minutes there before we were booted to an ER.  The leg was getting frighteningly larger by the moment.

 

The knee with the AVM
The knee with the AVM
The "good" knee
The “good” knee

My gut.  My instincts told me to go to the knee surgeon.  So we threw a bag together and got to Lenox Hill Hospital on 77th street.

After I got them to page her doctor, we immediately were notified we’d be admitted.

When we got to the room at 4:30 AM the tell-tale “NPO” (nothing by mouth – for any surgery rookies) was on the door.  Can’t knock the kids timing.  I knew he operates Tuesdays.

The team arrived mid morning to assess.  They set her up for 1 PM surgery.

“That’s blood.  And it has to be taken care of now.”

Ok – show me where to sign.

Blood and joints don’t mix.  Not without consequences.  This I know from experience with this child.

Get it out.

And as I waited… that awful waiting time… my mind wandered.  I thought about her swimming, and the time she is trying so hard to beat.  I thought about how much harder she’ll need to work to get it back together.  I thought about it being unfair.  And I thought about a mom in California whose extended hours on the phone to me as we were panicking and newly diagnosed were of such solace.  I though of the hell her girl has gone through.  Over and over.  Then I thought about my internet friends in Australia.  One young lady who had her thyroid removed AGAIN.  Yep – two partials, and then one side GREW BACK.  Unfair.  Then the ultimate lesson in unfair in the countless brain surgeries, 10, 12 hours at a clip for a young woman with a similar vascular condition to Meghan in a much more dangerous place.  I thought about her life on hold.  I thought about her recent surgery derailed as they discovered multinodular goiter on the thyroid.  I wished I could have tea with them.  Right then.  To talk to someone who does this.  This hospital thing.  This surgery thing.  Like its their job.  Cause that’s just what we do.

And there are no contests.  No one has to have it worse.  No one makes you feel like it’s not important.  This just is our life.  This is life with Cowden’s Syndrome.  Beat it.  So it doesn’t beat you.

And when they came to get me, to tell me she was in recovery, they told me they drained 50ccs of blood out of that knee-joint.  Apparently there was a hole about the size of a pea.  It got plugged.  A fast flow leak.  They hope that’s all of it.

This is about 50ccs of water - roughly the same amount of blood that filled her knee joint.
This is about 50ccs of water – roughly the same amount of blood that filled her knee joint.

Flashback to 2012.  Last surgery, when the doctor was so unsettled that there was ANY blood in the knee-joint that he told us about the damage it could cause and sent us to Boston for a consult with a doctor who could scope the knee-joint.  And we went.  But we never went back. Things got better.  We started Celebrex a month after that surgery in 2012.  That was number 4.  Number 5 was yesterday.

In 6 weeks we’ll go back for post-op.  We’ll talk about whether things are better.  There is someone in New York, on his team, doing that scope now – if she needs it.

In 6 weeks I hope she’s kicking some serious butt in the pool.  I hope this is a memory.  An update in the growing medical file.

Sometimes the only option..
Sometimes the only option..

 

This is life.  This is life with Cowden’s Syndrome.  This is our life.

Everyone has something.  And yes, it could be worse.  But right now, at this moment – we are tired.  And that’s OK too.  I am emotional, remembering a year ago today we admitted my Dad to the VA hospital that he would never leave.

Thanksgiving will be quiet tomorrow.  Just the three of us.  And reflective.  This week is going to be wracked with emotion.

For tomorrow, I’ll take the fact that my husband makes a mean turkey and a fantastic Gluten Free stuffing as a win.

The little things ARE the big things.  We ARE BEATING COWDENS!

photo 2 (3)

4 thoughts on “Gratitude

  1. I am feeling the same way at the moment Lori one thing after another, tests biopsies and then surgery. Like a revolving door. I hope Meghan makes a full and speedy recovery.

  2. Connor was so happy to hear from Meghan today. However, we are bummed to hear about the surgery – didn’t really know what was going on until this blog. Hang in their you tough cookies!

  3. So much to be thankful for…that Meghan’s surgery went well and that she can look forward to being the best she can be with your support! What a loving family you are!

  4. WOW. My eyes are filled with tears. Not tears of sadness, but tears of frustration that ANYONE, anywhere has to endure this. I get that it just IS WHAT IT IS, and we ALL WILL BEAT COWDEN’S. But, some of us (like Meghan) should be allowed to enjoy a childhood not fraught with medical stuff. As you said so well, “Hearing you.” And I’m hearing you, too. Sending you all the good MOJO I can muster.

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