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.

imaginarium

he plays hospital with construction vehicles as patients.
he wants to be a crab for halloween so he can pinch people.
he wants ahn to be a sea creature. shark comes most naturally to her.

I imagined Bo grown up for the first time in my life. I could almost feel my cheek against his tux on his wedding day. I never even allowed myself to dream of that until today.

pics

ok, so the sd card with all the Easter pics was corrupted and they were pressed onto a CD (nice save, Jose!), but now I'm having issues with that! Anyway, these are more recent, and you can see how much Baby Ahn adores her Bababababaabab-Bo!

Beaster

In a fit of domestic creativity (which is as rare as the ivory billed woodpecker), I fashioned an Easter Egg dying activity for Bo and his toddler buddies on Saturday using stuff we already had at home (tumeric for yellow, rotting blueberries for purple and some ancient jello packets for red, orange and green). And after they went to bed, the Easter Bunny crafted up their baskets using an old pair of green sweatpants cut-up into "grass" and tied around their Spring pj's rolled up like rosebuds. Bo had a blast being the Easter Bunny all day Sunday, delivering his and Ahn's baskets to me and Jose. He was soooo awesome at mass (no children's church, doh!) and behaved through the worlds' longest service (okay, it was Easter, so like I should be surprised?)
pics will be uploaded tonight!

Easter Bunny, Santa or ??

It's the week of Easter and Bo is really excited for the Easter Bunny's arrival. Instead, we got snow. And a surprise visit. Jose asked who he thought was coming.
b: Gramma?
j: no
b: The Easter Bunny?
j: no
b: Santa?
j: nope; your tio Ren.

So Easter Bunny this week, expecting a couple new cousins' due dates the weeks after, Bo's 4th birthday (yes, the one we were told to never expect), visit to doctors in Boston, Ahn's 1st birthday, Baby Wen's 1st birthday, and suddenly it will be Fall.

The baby had gooier diapers over the last week, and I had a really hard time containing my rising panic. The white noise in my head was truly blinding. And I suddenly experienced losing my car (hi, it's not like a small thing to misplace) again and again all week. I had to ask someone, how freaked out should I be getting? Because I'm crying and shaking and unable to put together a coherent thought. And after feeding her an entire banana for dinner two nights in a row (God bless our pediatrician's nurse, Fran), her dipes got normal again. PTL.

My parents are enjoying their winter in China and thinking about permanently retiring there. I'm delighted that they are so happy, but it's sad for me and Bo, especially since they cannot manage to keep our skype appointments. But I guess this is where I release my angst to the Universe, God and the angels and just say that Jose's family and all Bo's adoptive aunties, uncles and grandparents take a very active role in his life and stand guard around him, make snowmen and snow angels with him, read books to him, and have never, ever been stingy with their love. Bo and Ahn could not have a more adoring family, and I can only explain their extraordinary presence as some kind of wonderful...

Praise God that you have not been left to the darkness and ignorance which continued prosperity might have involved...

I was wistfully contemplating the easy, shallow life I had been leading. So full of promise, and abundance. Unacknowledged blessings and privilege.

Now I walk around with this gaping cleft in my heart. My damn bleeding heart. And I can see the lovingkindness in the world through my new eyes.

Buy oh Lordy, the other me? I would have been a skinny enviable bee-yotch; double income, no kids. Elbowing my way into a corner office.

I wouldn't trade Bo for any of that. Just in my fantasy on the way to a meeting with the parent 2 parent coordinator, as we scheme ways to provide support to families with kids on tubies in the area. I think about my alternate life. The other me. Sigh.

Ha!

My Own Private Snow White

My brain, the fragile beauty that fell into a deep dreamless sleep, awakens to motherhood, corporate intrigue and nuclear meltdown.

I'm sure there could have been better circumstances to regain my cognition, but better late than never, right?

Also, the Adventure Project exceeded their $10k/24hour goal and get the matching funds.

Water, water everywhere...

www.TheAdventureProject.causevox.com

The above is a picture of Bo, only a few days old. We did not know what was wrong, only that something was terribly wrong. He looked like all the babies who die of bad water, only we knew he didn't have a waterborne illness.

It turns out that water is a subject very specifically close to my heart. Not only am I a microbiologist by training, but I did work in infectious diseases.

Water is an issue for our troops. It is an issue for our babies. It is something that Bo can only have limited amounts of, but that he craves. It is something that kills 4000 children daily: more than malaria, measles and AIDS combined. In my very sick child's eyes, I saw what those mothers are seeing every day. An unknowable and unrelenting grief.

I'm coming out of my pain for the second time. Having another baby reminded me of all we went through the first time. So for all those mothers who need a child that lives, to heal their hearts, to limit this suffering, I'm dedicating today's blog to world water day. Go to their link and fund the training of local people who will fix the broken wells in India, so their children can have clean water, so they can earn a living and fix more wells and send those children to school.

If 100 bloggers can raise $10,000 in 24 hours, The Prem Rawat Foundation will match it. Every $20 fixes enough handpumps to keep 3 people in clean water. So, here's the link...

www.TheAdventureProject.causevox.com

Kiss Them, They're Irish

No really. They're maternal grandmother is a Gilfoyle. Doesn't get more Irish than that.

I love the crying pix. They just crack me up. I'm not being mean, really. It's just so funny how dramatic they are.

I'm feeling the PTSD finally wearing off, and am wondering if my cognitive function will ever fully recover. My docs claim they will, but after being crippled for so long, I am skeptical. But, if my brain is working well enough for skepticism to register, I guess that is a good sign. It's humbling to lose control over the one thing you so prided yourself, and yet remain loved, unwaveringly. I am so grateful.

More Todays

When Bo was a baby, we watched and weighed every ounce he gained. I agonized over every milestone, dreading each month and each milestone that slipped or squeaked by. Looking back, I remember spending way more time soothing him to sleep than I should have. Aching feet, peaceful baby, lullabies and the sun fading in the window. I savored those moments, knowing there would not necessarily be many more. But still wishing away those baby days, wishing him to grow up. Just grow up. Don't leave us with just your baby words. I need to know you better before you go. And now he is a big boy.

And then there was Ahn. She has grown so fast that I can't believe how heavy and tall she already is. I barely remember her being a baby. She is as big at 8 months as Bo was at 16 months. Baby Ahn stood up for the first time yesterday.

The day before that, I walked into her room in the morning to feed her and she said, "EAT!" No mistaking the word. First, dadada, then momomomomom, next EAT and finally, yesterday, she said, "Bo!"

Best February Weekend Ever

We spent Saturday morning at Binnslandia and Bo built his first snowman, had his first snowball fight, went sledding and even shoveled the driveway like a snowplow! Lunch wasn't bad either (thanks, Maggie!). So many things I never did expect to see. The seed of my heart has been cracked open again and a sprout of green is growing through, like Baby Ahn's two bottom teeth.

I got to cruise through downtown K'zoo with both kids strapped into my double decker stroller.

I built a snowman in the front yard for kicks and my driving gloves are still cold and clammy (so much for sponteneity).

Words for Toddlers

How do you describe the difference between darkness and shadow? How do you explain the nuance of animated discussion of an annoying topic versus an actual argument?

"Stop talking grumpy, Mommy!"
"It's dark now" as we walk into the shade.

I'm no longer driving to work in what feels like the middle of the night. Soupy grey mornings seem so bright and cheery compared to the drive to work shrouded in secrecy and darkness. I'm trying to live wholeheartedly, embracing the vulnerability, finding my superpowers.

Happy Year of the Golden Rabbit!

The New Year blew in with silent fury. A blizzard of icy angora rabbits littering the sides of the road in their ridiculously giant, stories high quiet. How can something so impermanent cause so much real damage? It will all be melted in a few short months. A surreal memory in our green and luscious summer days.

I think I saw Ahn's first teeth (tooth?). They are barely in, reflecting the light, but just. She is drooly and only as fussy as she ever gets, not much.

I saw the top of my foot and got a little weepy. Firstly, my foot is almost always covered in this weather. But more importantly, I saw again, the scar where my "lunar" had been. The one that matches one on Bo's foot. It was a reminder of how permanently he is tied to my heart, and how these bodies that are so precious are so fragile. And it may be considered a bit of vanity to prize them so highly, but it's the only existence I know. And my faith is imperfect. And I know that when we are parted in this world, my heart will ache with the combustion of a million suns.

I look up to pull Bo's hat and mittens off to, "Just BoBo do it!" Unless we're talking about putting his boots on, then it's, "Just Mommy do it!"

I go to the links on my sidebar a lot, maybe obsessively. I witness their suffering. It reminds me that my own troubles are both behind and before me. It is like licking a healing lip. Ouch. Yup. It still hurts. Don't forget. Don't forget what that feels like. Don't forget what it felt like to rock him to sleep, shifting from foot to foot, singing about spiders and suns and rain. Don't forget how funny she is slowly collapsing from sitting up- crying out with indignity. Don't forget how delighted she is with his too-pretty lashes, how she is in wonder at her sweet babbling. Don't forget his fervent bridge building- across generations, cultures, this life and the next.

As another part of my heart belonging to my dear friends is wrung with grief for their mother who passed last week, I am reminded that this brokenness I feel is the place where the weld will be stronger than the untested fibers of my being.

And the life that swept the breath out of me for months, continues to take my breath away. She eats with gusto, lunging at the spoon, incapable of waiting the nanosecond it would take to travel from between us to her mouth. She is the Spoonabomber. Joyful, jolly, gentle. Peace.

The Other Experience

Bo was our first child, so a typical child like Ahn is like having a first baby experience all over again. So many things we never dealt with: food in the hair, putting things in the mouth constantly, trying new foods by the bowl, using the stick blender.

Today, Ahn started smacking her lips. Her made-up sign language for "Solid Food!" So I popped her into the Bumbo and started shoveling blended green peas into her mouth. She had peas all over her cheeks, chin, hands (from sucking thumbs while eating- we have to roll her sleeves up!), and a runny nose (thank you Winter). Between bites she made the sign for Eat. Yes, I know. Then when the peas got too thick, she signed for milk! Then more Eat. Smart girl. Then, she signed, All Done. And with eye and nose rub, the natural sign for "sleepy," we went upstairs. And she went right to sleep.

And now, it's my turn. Good night.

Couer is the heart of Courage

"Vulnerability is absolutely at the core of fear, and anxiety, and shame, and very difficult emotions that we all experience. But vulnerability is also the birthplace of joy, of love, of belonging, of creativity of faith." Dr. Brene Brown

It's taken over 20 years, two children, a career change and a life-threatening medical anomaly for my heart to catch up with my head, which is sad, as that head was precocious in high school, but simply on par at middle age. But, it's a blessing that it happened at all. I've seen the dark side that is left unbalanced *it's not pretty. Finally, I can embrace vulnerability and let the fear and anxiety and shame and difficult emotions turn to face me with their joy and love and belonging and creativity and faith.

Because, who is more vulnerable than a child? A medically fragile child? And who is more joyful than that little baby girl? Her brother in the rain (the week before the foot of snow we just got).