Listening while distracted

You know the rules and the laws on driving while distracted.  Hands free cell phone devices, watch the road.. etc. etc.

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But, what about listening while distracted?

The sermon in church focused on this last week, and honestly, 8 days later it is still on my mind.  A personal challenge to me is to stop listening while distracted.

This is not an easy task.   There are precious few people brave enough to venture inside my mind.  It is quite a mess.  Once you sort through all the noise, its hard to find focus.

The list of thoughts on any given day could include, but are not limited to…

What appointment to we have today?  How many?  What will the wait time be?  When is the next one?

Will we get bad news, or just a 6 month return ticket?

How is Meghan feeling, what is her pain like?

Why does she hurt so badly, and how come no one can figure it out?

Will she feel well enough to participate in her after school activity?

How do we balance school with life?  How do we get all the homework and projects done amidst her chronic health issues?

What about her IEP?

Do we keep the para next year?  Do I need an advocate to help me?  Have any of these people got any CLUE about Cowden’s?

What about the bills?  I know we CAN pay them, but there are quite a few.  How many phone calls do I need to make to be sure that they are all done right?  When will I make the phone calls?

How much will the heat cost this cycle?

Will we need a new roof this year?Can't stop thinking cartoon

Did I update the EZPass account fo the new car after the accident?

What groceries do we need and WHEN do I have to go?

How are Grandma and Pop?  Really?

Will the article for Rare Disease Day represent us?  What about the ribbons?  Will they be distributed properly?  Will the kids – and adults benefit from it?  What if Meghan has to speak at her school?  Will she know what to say?

Why is there so much homeowork all the time?

How am I going to finish this math series with her while studying for Social Studies?

Does any of that TRULY matter for 6th grade, or will they just realize I have a pretty smart kid?

When is the FUN supposed to start?

…. AND I COULD GO ON AND ON AND ON AND ON…

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So, with that many thoughts running through my head (and sometimes more,) how can I ever be an active listener to ANYONE?

Meghan and I are best buddies.  She is a great kid.  But we do butt heads sometimes. 

I have to wonder if its because inside that 75 pound 4 foot 10 body, she also is listening while distracted.

Tonight we will stop. 

We will focus.

We will look at each other.

We will listen carefully.

Maybe we will actually hear each other if we eliminate some distractions.

Her father is very good at clearing his mind – eliminating distractions.  Meghan and I – not so much. 

But how can I hear what anyone is saying if I don’t LISTEN?

I see it all the time in this technology age.  Parents on cell phones, ignoring their kids.  Kids pleading for attention, and to be heard.

I am no better if I let the distractions of my mind get in the way of my conversations with my family.

When I ask God to listen, He does.  When I listen carefully, He speaks.  This I know.

Life is way too short to miss out on what is right in front of me.

I am working on clearing my head and avoiding “Listening while distracted.”

The Cowden’s Syndrome Roller Coaster

Maybe if I could attach my cell phone right here…

I can not tell you for the life of me why Spiderman was on my mind today, but I was thinking I could use one of those web shooting things.  It could be modified to hold the cell phone that is constantly in my hand!  I remember when Meghan was so colicky, and I used to carry her all day in that Baby Bjorn carrier.  I LOVED having my hands free again.  I hated that she just kept crying, but at least I could move around a bit. I am starting to feel painfully tethered to my phone.  I waited forever for the vascular surgeon to call.  Now Dr. K from Boston called Saturday, and we still haven’t connected.   

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Paranoid to miss his call, I carry my phone EVERYWHERE I go. I am not kidding, that is my cell phone in the plastic bag at the beach today.

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Today was a banner day. 

It was the FIRST time we have been to the beach since before her first birthday.

  This child was so sensory sensitive that we were both deeply traumatized by the first trip.  It took us almost 8 years to work up the nerve to do it again, and boy has she come a LONG WAY!

 We only stayed a few hours. 

Long enough to get into the sand and build a castle.  Long enough to find a few shells.  Long enough to jump a few waves.  Long enough for her to say, “Mom my knee is clicking every time I step and it hurts.” 

Clutching my old scratched up cell phone like it holds the answers to all life’s problems I silently, desperately, wish it would ring. 

But then what? 

Will Dr. K have a single answer? 

Will he want us to drive 5 hours just so he can say, “I don’t know?” 

Yesterday we saw Dr. P – the geneticist at NYU who started all this about a year ago.  

It was a friendly visit, catching up on all we have done.  I had a chance to thank him for “catching” the Cowden’s Syndrome a year ago.  It was his desire to dig deeper, and to solve the puzzle, that undoubtedly changed the course of our lives, and likely already saved mine.

 He asked a lot of questions again.  He looked closely at Meghan, especially her legs.  He pointed out again the 1/2 cm discrepancy.  He pointed out the swelling in her LEFT knee, likely the result of her favoring her right knee. (The AWESOME PT Dr. Jill, already called that one!) 

He listened to my concerns about her avoidance of activities.  He said the fact that the Celebrex is working means to him she likely has arthritis due to deterioration from small amounts of blood circulating the knee joint.  Not JRA, but degenerative arthritis.  He said she can’t stay on Celebrex forever. And although I knew that I was busy shuddering at the alternatives. 

He will nose around, and see if he can get a closer orthopedist to take a look.  Then he will look for an oncologist for me.  In the mean time he said, let’s just get a screening sonogram of her kidneys, to be safe.  Just a baseline. 

3 hours later we had word that her kidneys are “beautiful” and untouched by Cowden’s. We left NYU exhausted, and relieved, but still waiting.  Always waiting, and wondering, and worrying.  What next?  Can we fix it?  Wait… nothing new please!  We haven’t fixed the last thing yet… and so on and so on. 

 Tomorrow we will go back to the pediatrician to recheck for the recurrent strep.  Then, a much anticipated play date for Meghan.

Then Friday, its to the plastic surgeon for my recheck, with another playdate for Meghan. 

All the while my cell phone will be close at hand. Last year at Disney they finally got me on Big Thunder Mountain Railroad.  Good thing.  I think it’s a case of life imitating amusement park here. 

Cowden’s Syndrome is a great big roller coaster, so I better get a stronger stomach!