GOOD people bring out the GOOD in other people

Being a Mom is challenging, but rewarding.

Working full-time is necessary, and carries some definite benefits, but huge time demands.

Being the Mom, and managing the bills, the groceries, and the lions share of the housework (and I have a helpful husband! :-)) is well, some days like standing at the bottom of a really tall mountain…

Having a chronically ill child is trying on the nerves.  Worry and doctors appointments compete against waiting and absorb the bulk of any free minute.

Having a chronic illness, a rare genetic disorder like Cowden’s Syndrome yourself – well, it creates some challenges.  And that is putting it nicely. 

But, to combine all of the above… well I can tell you I wouldn’t trade any of them – but I am exhausted.

I spoke this week with a friend from work.  Her son is chronically ill, but was suffering an acute episode one afternoon.  This week Meghan felt fine.  So, I had the opportunity to spend a short amount of time empathizing.  While I was unhappy that he child was ill, I was in awe of her  poise as she anxiously awaited news of her son’s condition in NJ.  I think  my heart was in my throat – yet my admiration for her composure under pressure could not be stated. 

good people

I am sure I am not the only one exhausted.  I know I am not the only one contending with these issues.  And, even if they were different – dare I say I almost felt normal – listening to others for a change?

My perspective is usually pretty good.  I work hard to put myself in other people’s shoes.  I talk a LOT with Meghan, about various social situations, and try to help her see that her point of view is never the only one.  We have most of our best conversations in the car.

Tonight as we headed home from my in-laws I could no longer escape the conversation about the horrors of the Boston Marathon.  I had shielded her for a few days because I truly just couldn’t gather my words.

So, tonight as I explained what the bad people had done, and I answered her questions, she was, as the rest of the nation was, absolutely appalled.  And I spared her MOST of the details. 

She wanted to know why people have to suffer.  And she wasn’t talking about herself.  She was talking about these victims, as well as other people – children and adults, with cancer, or other major struggles.

There was no right answer.  So I gave her the best one I could.  We have things in our lives to deal with – all of us.  I don’t believe God picks us out to suffer.  There is evil in this world.  But I do believe, that we are given the strength to handle our struggles if only we ask.   And, we are given the tools to use our struggles to make a difference in the world.

So she asked why people do evil things.  Again – no right answer.  So, I gave it my best.  I explained that there are evil, awful people in this world, and she will encounter them at certain points in her life.  But the beauty of it is, that for every evil person, there are probably hundreds, or thousands of good people.  Those are the people we seek out in our lives.  Those are the people we center our worlds around. 

People are not inherently bad.  Most people are downright good.  And I reminded her of the stories I have told of the heroes of 9/11.  And then I told her about he heroes in Boston.


I told her of the resolve of the police and all emergency personnel that REFUSED to give up until their people were safe.  I explained how they put their lives on the line every time they rang a bell or even took a few steps.  Yet, they would NOT stop.  They shut down a city and they made it happen.  They worked together, and they arrested their suspect.  These are the good people.

And then there were the ones, who helped the injured at the marathon.  Civilians and emergency workers alike.  They ran in to give a hand because people were in need.

There are some rotten things in this world.  There are diseases and illnesses and suffering.  There are awful, evil people too.  But we, we will live our lives focusing on the good guys.  The ordinary folks that “wear the capes.”

This world is not full of evil people.  It is full of good people who so often stand together intolerant of evil and focused on human decency.

God Bless the Boston PD, and all the emergency workers, and all the brave citizens.


We stand with you.  We thank you. for reminding us that there are so many good people in the world.

All kinds of tests

So my fourth grader told me today that her State Exam was “tricky,” but she thought she got only 2 wrong.

I have absolutely no idea if her assessment is accurate.  I am only grateful that for one afternoon, her anxiety was lower.


Last night before she went to bed, we spoke a lot about testing, and my expectations for her.

As I have said before stress, and chronic illness just don’t mix, so I am careful with my words.

So, I explained to her that her best – regardless of the attached number – will ALWAYS be good enough for her father and I.

Wise beyond her years, she quoted a former teacher who apparently told them, “Your best is good enough for your parents. Your best is good enough for me. Now make sure your best is good enough for you.”  This followed by a cheery, “Chill out – You got this!”

As she lay her head down, last night, and tonight, she repeated those words to me.

There really are so many teachers who “get it.”  The kids are so much more than any number on a piece of paper.

It is such a challenge being on the parent end of things.

test prep

But, at the end of the day, these aren’t the tests that matter to me.   Not really.

On Monday the 1st of April there were 13 vials of blood.  On Saturday the 6th there were 15 more.

This weekend there was a 24 hour urine test, and 7 more vials of blood before school Monday.

These are the tests that keep me up at night.

These are the tests she has no control over.

These are the tests whose scores really do matter.

Hormones, Thyroid, neurotransmitters, immune function…etc… etc…

The results for the school tests won’t be in until August.

Some time in the next week I will have to deal with this latest lab panel, and determine if we have any new answers, or just more questions.

Perspective is a definite reality check sometimes.

She will go to school and do her best, and I know regardless – she is already successful.

I only wish I could hold onto that same confidence, as I await these lab tests.


SHE Who Never Gives Up!

There is a card on my desk from a dear old friend.

It says, “She Who Never Gives Up”

I was quite flattered to receive it, as I did, and still do – perceive it as quite the compliment.

However there are some definite dangers to being, “She Who Never Gives Up.”

SHE feels the STRESS of life very deeply, and STRESS doesn’t go well with chronic illness.


SHE fights for what is right – in a world that doesn’t always give a crap.

SHE persists until people pay attention, even when they don’t want to.

SHE advocates without ceasing for the needs of her child.

SHE finds it unacceptable when her child is placed in stressful situations unnecessarily.


SHE plays a doctor, a lawyer, a researcher, and a teacher – all in real life.

When people don’t do the right thing, SHE reminds them.

SHE doesn’t quit- ever.

Some people find that SHE is annoying – a real pest.

Some people wish SHE would just go away.

Some people would like it if SHE expected a little less from them.

Most people wish SHE didn’t expect them to do their job, and do it well.

SHE is not perfect, and never claimed to be.

SHE makes the best decisions she can- with what SHE has, where SHE is.

SHE tries to eliminate the stressors in her life, and simplify – although they keep cropping up.

stress 3 stop

SHE will continue to battle with all of her might – despite bone crushing fatigue  and sometimes against all odds – until her little girl can lose some of her unnecessary stressors.

Cowden’s Syndrome, and all its battles bring enough – the rest of the STRESSFUL situations are officially uninvited into our lives.

stress4 smile

SHE will rest when her little girl finds both her inner AND outer smile.

“She Who Never Gives Up.”

Thanks my friend, for the vote of confidence.  You will never know how much it has meant.