When Lueza had recovered from her first long illness (aspiration pneumonia) at Lucile Packard Children's Hospital I took her for a visit to her regular Pediatrician who had followed the medical story through computer records and knew what she was going through.
I was feeling triumphant for my daughter. She had gotten a feeding tube which would help protect her lungs from unwanted food and liquids. Micro aspirations were occurring and we had feared that but the information hadn't been clear until that long hospital stay. There was nothing grotesque about a feeding tube. It was like a little beach ball closure and we quickly learned how to attach the tiny tube and feed her and give her medications. No more clenched jaws and screaming during medication time. She had also been started on a neurological medication that helped to relax her back and her extreme dystonia. I called it twisting and it had something to do with her brain damage. Basal Ganglia. In utero strokes at birth.
So here we were. Just checking in. A quick visit.
"You really need to think about end of life issues".
I looked at him calmly and said that I do. I've been thinking and worrying about them for seven years.
He said that she's "on borrowed time". We need to think about the end so that we can avoid a horrendous and invasive medical nightmare.
I didn't blame him for his bluntness. I didn't shun him. He had been such a great doctor with her and I know that bedside manner doesn't always come with that.
We finished and I needed to get my sweetie home.
I loaded her into her wheelchair van with a crumpling mouth and crushed heart.
I held her knee, which I could reach while driving.
She seemed fine.
Even with me doing the quiet weep she seemed herself.
The stories of her friends' deaths never made her cry or even seem upset. She just needed to hear the stories over and over.
My way was to always think about "end of life" issues.
I had discovered a website called lifeexpectancy.org and I would spend hours trying to decipher the material about kids like Lueza and how their lives were affected in terms of longevity.
I even wrote the statistician who had started the website and was one of the leading experts in life expectancy and brain damage and he would write me back and suggest articles for me to read.
I didn't want any surprises.
Maybe I could prolong her life with constant worrying.
At the least, I wouldn't be surprised.
Because of her inability to hold up her head or move or use her hands or speak or sit or roll she was in the worst category in terms of longevity.
Some kids in wheelchairs have normal lifespans because they can sit and it all goes on and on. They can chew. They can swallow and it goes into their esophagus and nothing slips into the lungs.
They can be fine.
Lueza was fine.
She was joyful.
She loved life.
We knew that every day with her was perfection.
A state of grace.
End of post.