13 May 2010

We're finally starting to see Bennett...

A few days ago, Breck's childhood friend Scarlett posted an article on the blog that she said made her think of us when she read it.

The article is written by a father whose newborn son was unexpectedly diagnosed with Down Syndrome.  At one point he wrote, "Parents in such situations often engage in a period of mourning. Before you can bond with the child you do have, you must mourn the loss of the child you don’t."

This is so true for us.  We have had to take a few months of mourning.  Even now, though the grief is more subtle, it still will rear its head in the strangest of places.

But everyday that passes where Bennett has a good day - a day with no pain, no throwing up, no spitting out enzymes, no struggling to breathe, no medical appointments, no constipation, no phone calls about blood test results - is a chance for Cystic Fibrosis to fade to the background.

Sometimes there are moments when we forget about Cystic Fibrosis completely!...only to be reminded when a new friend notices the feeding pump in his nursery or a stranger at a restaurant wonders why we're feeding our baby through a syringe and tube right into his tummy (always a strange sight). 

But we have finally stopped trying to digest as much information about Cystic Fibrosis as we can get our hands on.  Now, feeling a sense of fullness in our tummies, we are happy to more about the disease as we need.  But, for now, we know everything we want to know.

The visits to the doctor, while still frequent, are becoming filled less with anxiety and more with the feeling of visiting family.  Ever so slowly, we are becoming less concerned by what he can't do (such as meeting his milestones), and now are pleasantly surprised at what we can do! 

We now see a thriving chubby blonde-haired baby who *loves* to be cuddled, loves to be tickled and loves to sleep...yet, before, we saw a sick fragile baby surrounded by tubes and intense needs always on the verge of not making it.  

Like our very favorite line of newspaper article says, "A few weeks after Sam’s birth, Mary, speaking for both of us, said, “I’m finally starting to see Sam, and not his diagnosis,” we are starting to see less of Cystic Fibrosis and more of Bennett.

Each day we fall in love with him more.  Our hearts will never be the same.


  1. I'm so glad you've hit this point! It took me about the same amount of time.

    As often as someone can tell you that "it will be ok," "your new normal will be normal," "your life will go on and you will be happy," etc. you truly have to live through it and make it through those cloudy days to reach the point that you have

    We have to grieve, and then make peace with it.

  2. i love this, b. as always thanks for your honesty and humility.


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