Burning Bright

I didn’t realize until this evening that it was Friday the 13th, which should be a sign of just how out of it I really am. Today I discussed arrangements for Jasmine’s body when she dies. I talked about how I wanted her to die and whether or not I wanted them to wake her up so I could say good-bye. Jeff and I talked about memorial services. I called my dad and let him know he needed to decide whether or not to come see her and understood when he said he wanted to remember her the way she was at Christmas. I held her doctor’s hand as he told me he was sorry, that he’d really wanted to see her grow up more. “Me too,” I said. He said to keep praying because miracles happen, but really, at this stage, that is what we need.

Jasmine’s lungs are failing. Every damned piece of paper in her chart has “RESPIRATORY FAILURE” written across the top in the diagnosis box. She is truly on life support and when the doctors have determined that there is really no chance of her making it, she will have to remain on that life support while she dies in a way that is humane and pain-free. I expect that determination to come on Monday, if not sooner. From this point forward, we are only leaving Jasmine alone at the hospital in short bursts. We don’t want her to feel at all alone.

Today they let us bring Nina and Gabrielle in to see Jasmine and are really relaxing the ICU visitation rules for us. We are not allowed to let anyone here know because usually children are only allowed in to visit on Sundays. Jasmine kept coming really close to waking today. It is agony. I want to see her one more time, just to know she really hears me say “I love you,” but I can’t stand the thought that she would have to suffer for that. So I keep after the nurses to make sure she stays sedated. It’s just one more fucked up choice Jeff and I have to make.

I feel like a crumpled up piece of paper, wrinkled and limp, soggy from crying. I eat and then I feel like I’m going to vomit for hours. Memories of Jasmine continue to bombard me and it is harder and harder to hold it together. It’s so unfair that her life ends like this. She deserves her trip to the Caribbean. Her first kiss. Learning to drive. Prom. And selfishly, I just want to see her continue to develop that wicked sense of humor and wackiness that she really started to share this year. I just want to see how much of a awesome person she’d become, despite her parentage. (That was a lame attempt at humor and the best I’m capable of at the moment.)

Jeff is handling this as well as can be expected. He and I seem to be in a rhythm where I am okay when he needs to break down and vice versa. We have a synchronous mind about what we want for Jasmine, which is fortunate. I can easily see how this kind of experience can crush a relationship. I’ve been hugged a lot lately, but his is the one that comforts me the most.

Gabrielle is doing okay. She hung in there like the trooper she is today and spent several hours in the room with Jasmine. I watch her closely to make sure she gets lots of opportunities to talk to us about how she’s feeling and to make sure we’re not asking too much of her. Today we let her play for several hours with a friend she made here in St. Louis when we were waiting for Jasmine’s transplant and I think that rejuvenated her a bit. I worry about how this will all affect her in the end. Jasmine is her best friend. Our whole family dynamic will change.

Nina is cranky and teething. I’m sure all the excess hormonal stimulation from me isn’t helping. I cry when I think that she will most likely never know Jasmine. Jasmine was there when she was born and really surprised me by enthusiastically taking on the role of big sister. I am so glad I got to share that birth experience with her. I had no idea at the time how important it would be now.

We did a lot of living in this past year. I know Jasmine had it pent up, waiting for the chance to breathe. Maybe the candle burned too brightly. I don’t know. I wouldn’t change it for anything. I just wish … I just wish it wasn’t ending now. Not like this.

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