“It is only with the heart that one can see rightly…”

There is something about having a kid who struggles, whether physically, mentally, emotionally, or in any other capacity, that forces you to open your heart and mind to things you may never have “seen” otherwise.

little prince

We are blessed.

We have a beautiful, witty, articulate, charismatic and spunky young lady.

She knows pain, and she knows it well.  And some days that pain is like plowing through a stone wall, while others its like walking across a pebbly yard barefoot.  But, there is sparsely a day with no pain.

She knows competitiveness.  Although she would like to be the fastest runner, she is starting to work towards a more reasonable goal in a no impact zone – the pool.

She knows intelligence that book smart children know, and she knows the perspective that few adults can master.  She can look at other people and want to talk to them.  She can wonder about them.  She can empathize with them.

She knows what its like to be sick.  And in surgery.  With IVs, and needles, and scars, and recoveries.  She knows what it’s like to never be “well” only watched.

She is learning, step by step, that “well” is more of a state of mind, than a state of being, when each week is peppered with some type of appointment.

Yet, she knows that even at the depths of her own Cowden’s Syndrome battles, there are others.  With and without our syndrome – who fight a battle unbeknownst to us.

Meghan doesn’t use a wheelchair at home.  For this I am grateful.  Although as I teach my daughter about homelessness, and how we can never be too sure from where they came, or whether it could through a series of unfortunate events, become us.  We practice a deep understanding of reality in Disney World.

_DSC2525

Meghan’s pain, so much of it, stems from repetitive motion.  Too much walking, any running, too many stairs, too much kicking or pulling in the pool… all of it has repercussions.  So Disney, by it’s very nature, and its wide landscapes requires much walking.  And, as we try every year, even with a little here and there – the pain is deep and inevitable.

So for that week every summer she gains an even greater perspective.  She lives in a wheelchair.  With all the inconveniences that come along with it, in an effort to save the needs from irreparable pain, and the trip from being a wipeout…she rides.

And on the first night after the vomiting I watched from a distance, as Felix helped her onto the handicapped ramp on the bus.  And there was a knot in my stomach as I watched my girl get strapped into the bus in the wheelchair.  This beast, this Cowden’s Syndrome we fight.  Well we fight to win.  But who can know?

_DSC2518

I stop myself from wondering too far ahead and I reflect.  On the old me.  The me who used to look at people in wheelchairs riding buses as an inconvenience.  A delay in my precious time.  The me who used to judge and try to guess why they would need a wheelchair.  The same me who used to judge a lot of things.

We will unpack.

The wheelchair will be stored.  Hopefully for a very long time.  But, it will be there, in the basement.  In case.  In case we need it for anything.  Because the pain, well it’s always there.

Fortunately, she is in a position where her stubbornness still has the power.

And I will think, as I drive her back to swim practice in a few weeks, about the other mothers.  About the ones who wish their child’s wheelchair use was temporary.

And I will think about the phone call I got this week.  The one about the AVM growing in the knee again.  Timed on the same day she was vomiting in the hotel room.  And I will be grateful that we don’t need surgery right now.  And I will be grateful that it is not in her head, or any other life threatening spot.

I am humbled.

By her grit.  By her stamina.  By her determination.

I am grateful.

For the opportunities afforded to my girl.

We will find the balance.  We will pay it forward.

I don’t even really remember the judgmental me.

I am too busy working on

BEATINGCOWDENS!

 

4 thoughts on ““It is only with the heart that one can see rightly…”

  1. Beautifully written- thank you! My daughter -now 12-has PTEN syndrome (really meets the description of Cowdens- but her geneticist doesn’t use the terminology to be more “correct”). It’s nice to hear the struggles and optimism from others. Most people know she is different, But don’t bother to find out why. Frequently she is assumed to have Aspergers- that what people seem to know about- and don’t hear when I try to explain the differences. Nice to hear from parents and their children- thank you-

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s