25 March 2011

Holding A Secret

Each week Brian and I try to get away for a few hours for a date.  Last week consisted of going on a walk on the Baylor campus with a cup of hot chocolate.

It was delightful to be with him.  The weather was beautiful. We knew our children were safely snuggled in their beds.  Bennett continues to be improve by the day.  And, because of this, I'm starting to feel like I'm more balanced and overall more at peace with life.  Brian is feeling relief as the end of his semester is near.  So he is also feeling more balanced.  It was a night when all the world just seemed right.

But as we were walking, I had to share my heart with Brian...something that had been weighing on me.

"Brian, have you ever realized that we know a terrible secret about someone that we can't even tell them if we wanted to?" I asked.

Brian wasn't sure what I was talking about.

I went on.  "It's like we know something horrible about Bennett and his future.  And we have to live with knowing that...and we can't even tell him.  Since he's too small to understand, it's like we have to keep it from him but it completely affects him."

Brian, now understanding what I was trying to communicate, validated my feelings.

"Yeah," he said. "He's a baby.  You can't really tell him anything about anything.  He's blissfully unaware about everything...but that does mean that we carry the burden of what we know about his life...until we share that burden with him one day."

"But, won't it just be awful to have to share with him this secret - this bad news that we've carried all of his life?  One day he's going to learn it himself."

"Sure, but he will go through emerging stages of understanding his disease.  He will slowly learn this information over time..."

I started to change the subject and apologize for seeming to always be so consistantly shocked over where we are with Bennett - where we are with a child with special needs - where we are with a child who faces a lifetime of medical intervention.  We've now known for 18 months.  Why does it feel so fresh and so not-real to me sometimes?

There is never any need to apologize with Brian.  That's why husbands are so wonderful...they need no apology.  They understand.

"Breck, don't forget that, in the same way Bennett's awareness of his situation will be emergent, we are also in our own emerging stages of accepting his diagnosis and what his future holds."

He is so right.  And it was validating to hear.  It's hard to believe I can read a story about another young child's illness and feel completely broken over it...all the while forgetting that my child is in the same or a similar situation.

The video below caught my eye tonight after I followed a local news story about the new Scott and White Children's Hospital in Temple opening this fall.  As much as we consider Cook Children's Hospital our home hospital, we have spent equal amount of time at Scott and White Children's in Temple.

This song, entitled "Help Us Live," was written in order to encourage the community to give financially to the new hospital - a hospital from which my son will likely benefit.  It brought tears to my eyes.

It's hard to watch a video like this and acknowledge my child could have very well been featured in it...and yet, as I teared up, I remembered Brian words about us being in our own emerging stages of accepting Bennett's situation.

Emerging is the slow coming forth and noticing of something.  It seems so strange that I can know something for a fact but still have a part that is still in a sort of emerging awareness.


  1. Breck - I'm soo excited to read about Bennett's progress with feeding! I know he's going to do great with the feeding clinic. I can't believe how much he has changed and grown since I saw him last July! They don't stay little very long do they?
    Thank you for posting this video - the 3 little ballerinas in the first segment (after the recording studio shots) are from a sweet family we know there in Waco!!! I was able to share it with their mom - she hadn't seen it yet.
    Have a great week!
    Mary Erickson

  2. Hello! I just read your post about keeping "The Secret" and I can soo relate! My daughter is 9 now and at the CF walk on Saturday, she met a young father who is 27 yrs old. He was there with his wife and 3 year old. My daughter noticed his shortness of breath and how he sounded wheezy. After we walked away from them, she asked me about why he was all wheezy and I told her THAT's what we are doing all of your meds, treatments and hospital tune-ups for; to keep your lungs from becoming like that. It was an eye-opening experience for her. I think she is starting to understand slowly that CF wants to ruin her lungs, but we will fight hard to keep that from happening...


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