APRIL 26, 2000

It is with an absolutely devastated heart that I write to my internet friends.  Things happened so terribly fast, and we don’t have answers as to why, but our dearest Benjamin John Cusick died this morning, at 5:30am in Minneapolis, MN at Children’s Hospital.  The ironic part is they do not think it was due to his heart.  When everything else quit, his heart was the last to stop working.  I’m not sure that our family can survive the loss of a child again.  Two days from now, on April 28^th, will be six years since we lost our son, Matthew, to SIDS.

 For the past 9 days, Ben has been vomiting on and off, with a cough.  I have had him into the doctor three times, and was just told it’s a virus.  Yesterday afternoon at 4pm, he visited his pediatrician, who said he had an ear infection.  We got home around 5pm, and I went into the bathroom.  When I was in the bathroom, Ben pushed a chair up to the counter to get a cupcake, and must have fallen.  No one saw him fall, but he immediately started crying.  Due to the crying, he started having trouble breathing, and he spiraled down from there.   We called 911, and they took him to the closest hospital and then flew him by helicopter to Children’s Minneapolis.

 While at the first hospital before being flown to Children’s, they did a chest xray and a CT scan of his head.  The CT scan showed no injury to the head, but the chest xray showed pneumonia, severe sinusitis (infection of the sinuses) and an ear infection. 

 After we got to Children’s, they stabilized him and were treating his pneumonia.  Ben’s dad, John, went home with the other two kids, Nicole, 9, and Connor, 5, because we were told Ben was going to be fine.  I stayed at the hospital.  At 4am, I woke up wanting to go see Ben.  I went to the bathroom first, and when I came out, I saw a nurse knocking on my sleeping room door down the hall.  I knew right then it was bad.  Not through all of Ben’s heart surgeries (Norwood, Glenn and Coarc. repair) or during his heart failure at 3 months of age or through his 10 hospitalizations his first year, did they once come and get us in the middle of the night. 

I called my husband to come immediately.  Ben had deteriorated within minutes, he was intubated and they were going to take him to CT.  Ben suddenly lost his blood pressure, and for the next hour or so, they did compressions.  He still had a sinus rhythm, but no blood was being pumped.  Finally, with John and me by his side, holding every inch of his body, they called it.  Ben’s heart kept beating a little bit, but then he died.

 I know we are all in shock as I write this letter, but I wanted to thank all of you who have been there for us over the past two years.  It has meant the world to us.

As sunshine brings warmth, Ben's death will bring sight to another child.  We had wanted to donate all organs possible, but because they think he may have died from a massive infection in his blood, we were only able to donate his corneas.  May the new sight Ben's death is giving to another child help them to see the miraculous beauty in every second of life that our dearest Benjamin did.

A rose once grew where all could see,
sheltered beside a garden wall,
And, as the days passed swiftly by,
it spread its branches, straight and tall.
One day, a beam of light shone through
a crevice that had opened wide –
The rose bent gently toward its warmth
then passed beyond to the other side.
Now, you who deeply feel its loss,
be comforted – the rose blooms there,
Its beauty even greater now,
nurtured by God’s own loving care.