The Stopwatch is beeping – and stopping my heart

Mar 31, 2011 | All About Denver, All About Kennedy, Cystic Fibrosis

The stopwatch was never ending.

Just a few weeks ago I lamented the never ending ticking of time.

Over four years of non-answers for two children, going on months for the latest.

I just wanted answers. One answer.

Today the stopwatch started beeping, signalling time up.

It sounded strangely like a ringing phone.

**

Yesterday we took Brandon for his “repeat sweat” test.  It was to rule out error in the initial (low) abnormal score.  Accounting for the test having an error and his numbers actually being in the normal range.

It was a formality.

Except, it stopped being a formality when the doctor’s office called us to give the results…instead of waiting for our call.

This time the numbers were different – but they were in the positive range.

Add in the ugly appearance of his lungs on the x-ray for December.

And the appearance of staph on his sputum culture.

And the odd result of his genetic test.

They’re calling it.

Brandon…

He has Cystic Fibrosis.

Which gives Angel’s odd course to diagnosis even more credence.

I asked for answers.

Now we have to figure out how to give answers to my 13 year old son.

Angel is growing up with it from the age of 1…to her it will be ‘normal’.

Brandon is a fully functioning, exceptionally brilliant young man…with a bad case of the worries.

His life today will not change…he’ll have more meds, and will get a chest compression vest/machine of his own.

But getting him to understand that.

To understand its not a death sentence.

That his life will be full…and probably very long.

Somehow we’ll make him understand.

Once we get our heads around it.

Sarah

2 Comments

  1. carol anne

    I don’t know the right words to say here. Just know that you and your family are in my prayers.

    Reply
  2. Tara R.

    My thoughts are with your son and your whole family. It’s tough trying to example to a kid, even one as old as your son, how he is dealing with a life changing diagnosis. Together you all will find the strength.

    Reply

Trackbacks/Pingbacks

  1. #Resound11 – Day 1 | Redefining Perfect - [...] started with CF testing for Brandon and the lingering effects of Angels Christmas-time hospital stay. PICC lines and genetic…

Submit a Comment

Your email address will not be published. Required fields are marked *