Loving the Gemini

They are both Gemini's. They both love life. Everyone they meet is a friend. They find the person looking back at themselves in the mirror delightful. They are Gemini's, I realized with a startle, because they each have a duality. The living, breathing child that is warm to the touch, and a delight to see. And then there is their other. The child who almost was not. And so, when I see them, hold them, feed them, scold them, pick up and put down for bed/time outs/car seat adjustments/high chairs, I remember this. I often wonder if I'm simply morbid, or a grief monger. But preparing them (me?) for the future, the unknown, the likely disappointments, grief, loss and pain to come requires arming them with joy, compassion and love today. That means giving them structure, assuring they have enough sleep, trying to acclimate their palates to good/whole foods. Because one day, when their twin looms, or mine, or that of someone they love, I want them to be prepared. I want to be prepared. On the one hand, US culture and society wants us/me to pretend and strive for eternal youth. But my child is young, and has a much higher probability of death than most of us. On the other hand, Bo is fairly stable, and I certainly don't want to point out the shadow of his twin, looming over my head. And that is my reality. It is real. Death. His. Very real. More real than mine. And then, there's Life. Very much alive. Tantrum-ing. Reading. Hamming it up for the baby's giggles. While every day may be one day closer to the twin. I also know that every day is a victory. Every day is a gift.

Merry Christmas and Happy Hannukah! Since the last update, Bo's line has required several applications of alteplace (TpA), and finally an ethanol lock (0.5cc 70% ethanol instilled for 4 hours, and subsequently drawn out) to clear what appeared to be an occlusion caused by his lipid. My theory is that the fibrin (gunky protein that is part of the clotting factors in your blood) formed a hairy network in and around the end of his line, and that the lipids stuck to them causing a 2-ingredient clot, requiring two anti-clotting procedures. Somewhere in there, his line broke (due to the occlusion and repeatedly built up pressure) and the surgeon was able to splice a new end neatly, and without much ado. Baby Ahn is toddling and pointing. She continues to appear typical, including her language (resistant, as she prefers sign language, pointing, and general brattiness). She has started to use her words with prompting, started potty training, and reading. I still don't understand why Omegaven hasn't been approved by the FDA. The company that makes it actually has taken some leadership of this, but apparently, not significantly more than before. There have been days when I wondered what I would be doing if Bo was not here. I wonder when and what I should say to Bo when he asks about his line. He asked me when Ahn was getting hers. I explained that she was not going to get one. I had to choke back tears during this exchange. It made me wonder what I should say to Ahn, when things do not go as planned for Bo. I speculate about all the ways they will become broken, and all the ways I can prevent that from happening. In some ways, it is a relief to think that we will bear the suffering of the world long after he has gone, and he won't ever have to face pain and death without me. But obviously, there is little comfort in any of those scenarios. So for today, I'll pursue all those things imagined in the "after" meditation, so Bo can see, in THIS life, how much his endurance has inspired me. PS I don't know why, but none of my paragraph breaks are showing up and I'm too lazy to troubleshoot this right now.

Thanksgiving every day!

Bo used to be such a light sleeper that we were prisoners in our own home. I did not put laundry away for literally years. A squeak of the floor, the rattle of a dresser drawer handle, the light in the hallway; all of could lead to a blood-curling scream that might take an hour to quell. He was not only a light sleeper, but an ANGRY waker. It strikes me as funny tonight, as I am banging around, the baby sleeping peacefully several feet away with nothing between us but a wooden door, Bo getting ready for bed, humming the Star Wars theme song, loudly; how easy it is to give up the niceties you imagine as non-negotiable. And how nice it is to have the luxury of those niceties back. Speaking of which, there has been some drama in the transition to new job, and specifically with Bo's line. Yes, his line broke this morning. No, he's not in the hospital. Yes it was scary and sad. No, Bo did not cry (although Ahn did, because in their haste to get it fixed, they forgot to bring babyfood- so she was MAD). Yes, my new insurance covers all the medical stuff as my old. BUT no, the nursing coverage is a mere fraction of that. Yes, we are all nervous for the transition. No we have no idea how this is really gonna work. Yes, I still giggle at work, because I still like it that well. No, my cubicle is not any less dreary (although the live plants are a treat that I have not seen in YEARS, so I guess that makes up for the threadbare carpet). Yes, for most people the amount and quality of care Bo has had is unimaginably amazing. So no, I'm not looking a gift horse in the mouth, just sayin that we got used to the gift. But also, yes, I'm finding the gift of enjoying my job has increased my energy level by a billion, so I'm a lot more helpful with the littles. So, he's not dead, yet. YAY us. BUT, these things still send waves of terrifying panic over all of us. And the fallout can weirdly last a way longer time than I expect, because in the immediacy of the situation, we all just do what has to be done in as calm a manner as possible. And when every thing has calmed down, when you feel like your life is out of immediate danger? That's when you fall apart. So, just so you know. You know?

Shana Tov!

Orientation at the new job. First exam of the semester. Nerves. My cubicle is smaller and drab. It's somewhat depressing to see in its bare state. That is not why I am there. And as long as I can keep that thought at the top of my head, I can enjoy the blessing that it is. My sister posted a gauntlet she laid down, to scare yourself, pushing past your comfort zone, once a month. She is doing it! I am doing it! It is scary!!!

ch-ch-ch-ch-cherry BOMB

So I dropped the Bomb on Tuesday and packed it all in today, Friday. I get a week off (paid), that's good. I spent my whole industrial career there, so now I feel very confused, that's bad. We are covered by my old employers' insurance until my new one kicks in, that's good. It's through COBRA, that's not all bad, but I have no idea how much that will cost, so that's a little bad. I don't have to move or make big changes that will traumatize the kids or Bo's medical state, that's good. It requires a commute, that's bad. I have no gaps in employment, that's really really really good. I'm feeling very insecure from all this change, that's bad. Leaving was gonna happen, and I would be facing a change no matter what, so on the balance, this is all good. This kind of seismic change is terrifying considering the responsibilities I have towards Bo's health and wellness, and being this freaked-out can only be bad. But hopefully it's short-lived, and that's good. On the balance: it's all good. God is good.

New Job, New Maze of Coverage Q'a

I tendered my resignation today with mixed emotions. My whole industrial career has been at one company. I've worked and learned about different aspects of the business, they sponsored my VERY expensive MBA, and supported Bo through an extremely comprehensive insurance plan. I am jumping into a new company and a new position. I know they have medical insurance, but I haven't seen the fine print. Not knowing makes me a bit nauseated, but there was really no other option. So jumping with a net of unknown quantity. So, now that the cat's out of the bag, the blog can be re-opened. While I considered a nationwide search, and even a change of career, as second and third options, staying put and changing as little as possible was what seemed the best option for us, while Bo is still small and fragile. Being close to family, and the known quantities of hospitals, doctors and pharmacies was the conservative call.

Thah z ah han drid dahllahs of scah ch

We spent our vacation in Boston on Beacon Hill, the native environment of the reclusive Boston Brahmins aka WASP. The "quaint" cobblestone and brick sidewalks proved no match for my crazy highend stroller. HA! Take that, Boston. Plus, we spent quality time at my BFF from grad school's play palace (condo in Cambridge), where there was an abundant supply of trains, cars and garbage trucks.

Above, Bo with the guy who saved his life, Dr. Puder.

Sorry, the title comes from our neighbor who had a broken bottle of scotch in his trunk, presumably potables and comestibles for watching the Bruins. "that's a hundred dollars of scotch!" he lamented, as he held up a dripping box and carried over to the garbage can.