25 October 2010

Breck's Thoughts: Asleep

One of my favorite moments of Bennett these days is bedtime.  When he's asleep.  In his dark room.  His feeding pump light glowing over his crib.  Sleeping with his knees under his tummy.  Douglas, his favorite stuffed dog, buried deep in his arms. 

There is nothing like hearing Bennett's laughter or watching his eyes light up when he sees me walk into the room.  But there is something particularly peaceful about watching Bennett asleep.

I think deep within me, the reason Bennett asleep in his crib is one of my favorite moments is because I believe, if even falsely, it is when Bennett is most safe.

When Bennett is tucked into bed.  There are no germs to catch.  No treatment/medication to be administered.  No therapy to experience.  No doctor to visit.  No weight to check.

I don't worry when Bennett sleeps.  This is when my own heart can rest.

Almost every third night, Bennett wakes up in the middle of the night crying.  There are a number of reasons for this.  But lately, Bennett has woken up because his feeding pump tubing has detached and caused his formula to run out on his bed.

We have tried numerous ways to prevent this from happening (most recently ordering a special type of tape that we hope will work better) but we've continued to, at times, find Bennett curled in a ball wearing formula-soaked pajamas.

It's heartbreaking to find our little peanut in soaked pajamas, knowing he had to have been doing so for hours.  He always seems to cry when they are soaked, not when he first starts to feel the trickle of the formula from the detached tubing.

But each time I wake up in the middle of the night to find this situation, I feel Bennett's moments of safety are violated.

I feel horrible as a mother, that my child has been "swimming" in formula for a few hours while I was fast asleep.  I feel horrible that my son who desperately needs every calorie ends up missing out on a much needed feeding.  I feel horrible that Bennett has to be "hooked" up to the pump each night, unable to fully relax or move about his bed as I'm used to doing myself.

Those moments at 6am, my heart breaks.  I am reminded that even his little bed isn't really a safe-haven from Cystic Fibrosis.
But we have hope it won't always be this way.  Things have already greatly improved in the last 6 months and we expect that to continue.

We use the words "CF" and "Cystic Fibrosis" less in our vocabulary than we did even a few months ago.  My google searches on the topic have slowed down considerably.  No longer do we feel our lives are hung between doctors appointments.  Just the other day, I met a new friend and did not feel compelled to share anything about my son's illness. 

Cystic Fibrosis is a progressive disease.  Things may get better but things always get worse...which is why any reprieve from CF - even a few hours a night...or a few months of a year...or few years - is a gift.

We hope a cure will come before we see "worse" for Bennett.  But for now, I don't focus on that.

I focus on the stillness of a nursery.  I focus on the soft glow of Bennett's Winnie-the-Pooh nightlight.  I focus on my baby, fast asleep.


  1. I have a friend who says to to a AMT clamp. to keep the tube connected.

  2. What a beautiful post, Breck. You have such a gift with words. I will always remember to keep Bennett and your family in my prayers.


We love to hear from you! Please leave your comment below!

Note: Only a member of this blog may post a comment.