Archive for May, 2014

Is too long, let me sum up.

May 2, 2014

Eight years.

On February 21, 2014, Ben would have been eight years old.  It will have been six years since he died.  I struggle with these numbers.  Ben’s life was always about numbers.


At 15 weeks pregnant I had a blood test that showed there was an elevated risk of Down syndrome in my baby.  18 Weeks brought a detailed ultrasound that showed a heart defect.  19 Weeks was an Amniocentesis to confirm the diagnosis of Down syndrome.

34 Weeks: met with a cardiologist for the first time.  A second heart defect was found.  35 Weeks: Switched to high risk maternal-fetal care and made plans for a delivery at Hutzel Women’s hospital. Met with a transport team from Children’s Hospital of Michigan to discuss what would happen after birth.

39 Weeks: Ben is born. 5.5 lbs, 21 inches long. Apgars of 7 and 9. Second day of life we meet him in the NICU, meet the Cardiologist on call, learn of a third heart defect.

We get three options for surgery.  One is for a heart transplant.  So many complications….so little chance of making it through surgery.  So many lifelong complications.

1 week old: Ben comes home.  Hospice team called in.

2 Weeks: The amount of time we are told Ben might live.

1 Month: When we return to the cardiologist

7 Months: Ben starts Early On intervention for Physical and Occupational Therapy.

9 Months: Ben’s life expectancy is lengthened due to changing situations in his heart, we begin weaning him from Hospice care.


It’s a blur from here.  There is travel. Celebration. Life. Laughter. A baby brother.

Ultimately, the battle is lost.  Ben died on Valentine’s day 2008.  Seven days from his second birthday.


At this point, the numbers run together for me.  It is not the numbers that matter to me, but there are times where the grief rears up, unexpected.  I’m standing at the sink and A passing thought of Ben catches me so strongly that I can’t stop the waves of grief and love and raw feeling that comes over me.  It’s not about the numbers now, it’s about managing those waves.

I forget who I’ve told. I forget who knows about Ben, who met him, who has heard the story.  I forget if I’ve referred to him as a miracle, or my son, or in passing.  I forget if I have told the story or changed the subject.  I’ve started to protect myself from the telling, protect the story and Ben’s memory from sharing, in case sharing it will somehow make me forget him and what he was.