November 19th 2001. Ten years ago.
The morning began very early. Tim and I were coming from a “clean-up” from home. Crazy how you can smile & take the steps in correct order (right THEN left…. now right again,), even though you are numb to the bones. “Will I remember to breathe?” I asked God for the 400th time that year. Followed by, “breathe for me Lord. Breathe for Ben. Lead him well into Your will.”
We were met by Ben’s Dr. “It is time to have a team meeting to make those crucial decisions.” He left to get the team around. It seemed that everything was different, and suddenly, there began a slow parade of nurses from second floor who were now coming up to visit Ben, to hug us? They were so teary-eyed and their hugs were so tight. Silly gals. They were just so precious to us, and it was great to see them. I’d say, “Thanks so much for coming up! We’ll be seeing you soon.” I was always telling each one of them what a treasure they were, and I just thought it was so kind of them to visit.
(I wasnt stupid. I was surviving.)
We went into the big office meeting. There sat the head PICU Dr, Ben’s amazing Hem/Onc Dr Victoria Casteneda, the Social Worker, the head PICU nurse, another Dr, and our friend Wendy (a nurse, and wife to our own friend/primary care Doc). Dr started off from behind his big desk, “I promised that I would let you know when we got to the point where we would be interfering with what God could do… when there was nothing more to do for Ben. We are there. We were going to do a brain scan, but there is no reason to.” There were many more medical explanations and talk of full organ system failure, and much more. Hard decisions had to be made.
Tim and I held hands and discussed what would be happening, asking very few questions. We were told that they would allow as many visitors in the room as we were comfortable with. They would open another room just for extra visitors. They would have food & beverages for our visitors. You have a lot of say so in how this will go. You can make your phone calls. Here is how it will work. Here are the possible outcomes. He could continue on, even for days. The entire medical staff all agreed that no organ functions remain, no brain function.
First call… I called Ron’s friend Michael & spoke to him or his father to “please go get Ron at work and tell him he needs to come up to the hospital now. It is time for him to be here, and I dont want him to hear it over the phone. Please offer to drive him here if he needs to.” They lovingly went & did as I requested. Ron had worked at The Guitar Center for all of 3 weeks.
I went straight to Ben. He lay there with new wires…. thousands of them, or so it seemed. They were attached to his skull for the brain scan, but they just lie there on his pillow, not attached to anything else. (He would hate what they were doing to his hair)!
Maybe the IVs were off. Maybe some were gone. There was activity everywhere. Lots of staff. Much scurrying.
Friends began showing up. My mom was on a plane from Michigan. Tim’s parents had been readied, and they began their trip up from Florida. I stayed in my chair, stroking my son’s bare arm. Talking to him. I stood for a while then, whispering the things into his ear that I had been repeating over the past several days. (Many details we will always hold to ourselves and keep private. Some of those things may come out at other times.)
I told him repeatedly that he was so courageous! He was the hero he always wanted to be. He was the overcomer that only his story can reveal. I knew how much he loved us, and I knew that he could feel how much we loved & cherished him. I knew his prayers were being answered and I knew he was going to a place where we would all be. I knew how much he knew Jesus. They were the closest of brothers, friends & they were together. I told him everything that needed to be said. Every. last. thing.
The room got full of people, but Ron wasnt there in the room. He was 19; A man to choose how he would experience this, and with whom. (But he was ONLY 19.) I wanted to walk him through this, and yet knew I couldn’t. I couldn’t send his dad out to him. We were all experiencing this freaking reality.
Some Celtic Christian cd was playing. Some prayed from scripture and some sang hymns. Kyle Stafford, all of 15yrs old, stood opposite Tim & I, holding Ben’s other hand. Tim & I were so close to Ben’s face talking to him, and I had a firm, mama grip on him.
The other Dr who was there with us, pronounced Ben dead. I said out loud, ”Death where is your sting? THERE IS VICTORY IN JESUS!” Jesus won for us. Eternity began for Ben that day.
My old life ended that day.
We were all asked to leave the room. I don’t remember much. Sitting in a room, smiling at others. Few words from me. But I made arrangements for a couple of ladies to go pick my mom up from the airport later.
After Ben and the room were all cleaned up, Ron, Tim and I were back sitting in Ben’s room. It seemed so spacious now. No IV poles, no machines, no staff. Just our family. Four of us. Back to three of us. I sat on the bed next to Ben & stroked his face. His beautiful eyelashes on his sweet Asian eyes. I wiped his lips with tissue. I straightened his hair… he was always pretty particular about how his hair looked! Back to three of us. Four for so long. Plans for four. Back to three. Just. Three.
Someone came in and said we could have an autopsy at the hospital’s expense, and that we should discuss it. What mama has to ever think about that? How does someone weigh all of that? What could it possibly prove? He was diagnosed 1 yr and 5 days earlier. We all agreed not to.
The Social Worker came and gave her condolences, and handed me a lovely box with a shiny green satin ribbon. She said there were some things of Ben’s in there, and some special keepsakes.
After our goodbyes to Ben’s shell, Tim and Ron went to the house and I left with the ladies to go pick up my mom. The ride was about 25 minutes. What a stunningly sunny day. So bright out there, and people are just going about their everyday. When we were at the airport, I just sat watching the passengers coming down a huge, bright corridor. So sunny for today. Nobody knows what this day has been for me.
“Do you want me to hold that box for you Diana?” NO. Leave me to sit here. I will sit and I will hold this box. Thank you.
One friend said, “Just tell us what your mom looks like, and we can get her to you hon.” I said she looked just like me, plus 20 years. I then pointed at a little Asian lady and called to them “That’s HER!!!!” We all laughed. When my actual mom did come down the corridor, she saw me and gave her big smile, but with tears on her cheeks she said “I knew if I saw you here, that he was gone.” I love my mom’s hugs.
In the car, she asked, “Let’s see whats in the box… what is it?” I said, “I don’t know. Not yet.”
At our house, we walked in and the kitchen was PACKED with foods! Every counter had food, breads, baskets, plates, paper products for the house, phone cards, …. over. whelmed. numb.
Two friends stood in the kitchen and kindly asked each person who came in, “Can I get you something to drink?? and had them sign a guest book. Ron had already talked to our Pastor, and then he asked if we cared if he called the funeral home. He arranged everything with the mortuary. He stepped right up and right in. I wanted to cope FOR him….. but he was living this too.
I sat there. Holding the box. so much going on now. Someone kept trying to get me to eat. Try to lay down. Try to rest. I sat. Just let me sit.
At one point, someone gave me two bites of applesauce. It may have been all I ate that day. Where was Tim? Is he doing ok? Good, he is talking with friends in the other room. I’ll just sit here.
That was the day. I don’t remember people leaving. I don’t know who arrived, who spent the night. Did we shower? Did we cry? Did we pray?
Today, as I write this, I miss my son so deeply and so profoundly, that I just cannot imagine that there are words that could communicate this loss. I miss hearing his name, I miss the things that could have been. I wonder about so many things, if i allow myself to. I miss my little Asian grandchildren that would be precious cousins to my grandsons. I miss that my grandsons will not know their Uncle Ben, except the photos of a 15yr old boy.
Did I do enough? Did I love enough? Did I ask the right questions, or fight the right fights? Could I have or should I have? I don’t live there anymore.
Much stronger than any of the feelings of loss, always comes the truth of our hope in Jesus Christ. We have our faith in an eternity where we will worship the One who defeated death and entrusted US with the young hero we named Ben. We were given a lonely, scared, wet, wounded orphan. We spent 13 years with him & returned him to His Father God as a courageous, amazing, brilliant, comical, loving, and beloved young man.
If this was to be my only purpose ever, then I can say that we are ultra-successful. We love our darling Benjie, and today I weep for fading memories, long for eternal promises and sing praises to the One who brings the sweetest of joy and new mercies daily.
But Jesus answered them, saying, “The hour has come that the Son of Man should be glorified.
“Most assuredly, I say to you, unless a grain of wheat falls into the ground and dies, it remains alone; but if it dies, it produces much grain. Jn 12:23 & 24
