The luxury of turning away

I started to say something about this on Facebook, because I haven’t been able to bring myself to talk about it out loud, but I need to say something somewhere.  I deleted it because it seemed pointless and weird, and I’d basically be asking for “thoughts and prayers.”

My niece is in the hospital again.  She ends up in the ICU almost any time she gets sick.

She has very complicated health problems.  She was a Twin to Twin Transfusion Syndrome  baby.  Her identical twin was stillborn at 26 weeks;  she had to come out along with her because they were in the same sac, and there was an infection in the amniotic fluid.  She was 1 lb 14 oz.

Her fraternal twin brother had a rough start, and he required therapy in early life, but he managed to escape long-term health problems.  It’s possible that the baby that died passed a blood clot to her surviving, “recipient” twin.

I consider her a SWAN child.  Officially, she has severe cerebral palsy, adrenal gland insufficiency, lungs that look like those of someone with cystic fibrosis (although she does not have cystic fibrosis), and she is missing most of her occipital lobe (although she does not have cortical blindness–apparently vision is one of the few things that can be re-routed and processed in another part of the brain).  She has also had some terrible bouts of pancreatitis.

It may be because she lacks the trunk strength to couch properly, or because of the overall stress on her body, but she ends up hospitalized pretty much any time she gets sick.  And I don’t mean a trip to the ER–I mean, in the ICU, sometimes on a vent.

I know that one of these times, she won’t come home from the hospital, and I’m having more trouble than usual putting it aside.

I know that, medically, she isn’t “supposed” to be here, but she is special and valuable.

She had a simple infection, but she’s septic now.  Her blood pressure was low (it’s better today than yesterday) and her temperature is up (it was 91 when she went to the hospital), and they finally gave her pain meds, but the last thing I heard was that she appeared to my sister to be getting worse.

I’m finding myself being afraid to ask for more details.  I keep starting to respond to my mom’s last email, or call, and then I freeze.

I don’t think there is a bigger luxury than having the option to distance oneself or take a break from dealing with death.

She’s 15.  She can be a real stinker, but she can also be very sweet and snuggly. She has the most beautiful, thick, blonde hair.  She appreciates bathroom humor and funky music.  She is very, very loved.

I feel like I’m eulogizing her, but I’m not superstitious.  I want to say it now and have these thoughts go safely back to the backburner for weeks or months or years.  Nothing would be better than for this to be an overreaction.

Why am I sharing this?  I share everything, but even I am having trouble talking about this one on one, even through text. I know that sharing it doesn’t change anything, but avoiding it feels very wrong.  I don’t want to just sit here and say how upsetting it is but reach out to my sister, but I don’t want her to have anything added to the list of things to do.  The only thing she has to do is watch her daughter survive this bout.

I’ll text her.  Just to let her know I care, but so she doesn’t have to respond or actually deal with me.

My sister and her husband have already buried one child.  It’s not fair.  What can I say to expand on that?  Nothing.  There’s nothing I can add to that.  It’s just not fair.


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