Happy Mother's Day!

Cheek. Too. Big. Can't. See. Past..

This was my first Mother's Day. I was so happy to be out and about with the family, unable to believe our good fortune, and that in less than a month we will swap out the infant car seat for the forward-facing Britax. Aside from the obvious, sobering reality around Bo's condition, since he has been so stable for the last month or so, my brain is now able to stretch around other issues: finding a new home for Murray (she's not adjusting to the new balance of power), getting some tile in the kitchen, scheduling yoga classes and time at the gym, that huge mountain of laundry in the basement. I've never been happier to do laundry.

Happy Mother's Day!

Magic

It is so true and maybe this is why it feels so cliche to write, but it is from those hours which are our darkest that our hearts allow us to fathom the furthest reaches of our own compassion, into an infinity of empathy. Each stone we gather for shelter from the winter cold, and each story we share to keep our fire of compassion burning is another step towards our most evolved selves.

Maybe that is the explanation for my obsession with lurking on the blogs of other sick babies. Or maybe its because each of these websites is a testament to the miraculousness of life. The infinite strength and hope we parents find each day; surprising, I suppose to no one but ourselves.

To quote a recently penned letter to my chosen family,
"Life is miraculous. Full of miracles, great and subtle... We are too lucky sometimes to know it. Maybe that is the blessing of our riches, those moments of luxurious, unselfconscious living."

I'm not always clear, myself, what the driver is for this blog. I mean, besides Bo. Is it a place for me to vent? A place where my scattered given and chosen family can see Bo's progress? An unabashed parade of gratuitously cute snapshots? Is it a place for me to posture, putting forward our Strongest and Most Presentable Selves? Maybe to convince myself of Bo's ability to kick the statistics? It is a testament to my Faithfulness in the Universe and its goodness. God is good. All the time. All the time. God is good.

The one gift from one of the few hopeful hearts among our doctors at UMich said, "There is always room for magical thinking." Amen.

Teething, for real!

Bo has been waking up in the middle of the night from a dead sleep to full-scream crying. He didn't even do this with kidney stones. But it's nice to know it's just his teeth (the 2 bottom ones). And he goes right back to sleep after I pick him up. What a good boy!

He's been saying "Good," and "Dada" for a couple months. He is finally saying Mamma, with great clarity. And clapping! Jumping in his Johnny Jumper! Waving his hands up and down. He even tipped the scale just past 18lbs. So much has happened in the last few days.

Oh, look at those angry red eyebrows! Poor little mouth. Dr. Puder was trying to convince me that Bo would really get his teeth, and that he'd never heard of the genetic condition that resulted in a toothless baby. I guess he was right again. I was doubtful, I admit.

Reality Check in the Face of Cuteness, Literally

I know I'm biased, but I just cannot get over how cute this guy is. It's simply unbelievable. But I guess it's the same incredulity at Bo's cuteness that keeps me full of gratitude, and angst. While he is truly a delight, intelligent and literary, he remains medically fragile. This is the reality of Bo's condition. I try to keep all the "typically developing" aspects of Bo's progress highlighted in my mind and Bo's. I don't want him to put his condition in front of him, as if it were bigger or more important than he is. I certainly don't want him to have to define himself by his condition.

But, I have to emphasize to the authorities that his progress is truly the unexpected for a medically complicated child.

And I try to convince myself that while I emphasize it to those officials, it is only a minor thing in Bo's life. But, it's not. And he has lost all interest in eating. And I am beside myself with grief and worry. It's probably because they increased the fluid volume of his TPN, which is good, because all the kidney issues have seemed to resolve themselves with this change. But now he doesn't want to eat. And I know it's more important that his kidneys function than have him love eggplant. But I just can't get over the notion that eating is the only road open to us for another miracle. That second miracle that I feel guilty praying for, but that I can't help but lift my heart up to.

More Face, Less Talk

Bush was right about the stimulus package, like Clausius was right about Entropy

Restrained optimism and the 2007 tax rebate/stimulus package have conspired against my natural state of frugality. I went online and bought a bunch of side-snap/kimono-style onesies for Bo.

I spend a lot of my time these days lurking on the blogs of other short gut kids. It gives me a sense of community and takes the edge off the isolation I feel in my real life. I follow their ups and downs; their line infections and high jinx. Sometimes they are blessed with miracles of their own: Omegaven, naturally decreasing bilirubin, no longer necessary TPN. With each tragedy, my heart breaks a little more, and with each miracle I learn to embrace the unknown within.

I spent my entire pregnancy reading the saddest books I could find. Every night, Jose would rub my swollen legs and I would cry until my eyes were swollen. Then Jose would read another segment from "Journey to the West" to Bo, and we would fall asleep, so happy, to the kicks and somersaults of Bo-in-utero.

After we were given his diagnosis, I would cry, wishing he was still in there, safe and warm, free from his disease. Just another baby. And all those months before Omegaven, just waiting and watching and wondering how many days or months we had left together, I would wonder if maybe it was intuition that had drawn me to books like, "The Year of Magical Thinking," where I had to ask myself what it would take to endure such grief. I thought a lot about entropy.

The second law of thermodynamics is: entropy is ever increasing. And the myth around its author's clarity is that his mother and wife died in the year before he wrote it. And I would think about the dark place you would have to be to conclude that this was more than a theory, but in fact something that could be proven mathematically, and eternally. That forever and ever, things fall apart, more and more. Amen.

So now I read about some child's miracle tempered with another's demise, and I am humbled. And I am awed. And I receive both the blessings of hope and compassion, wondering if Bo's Omegaven is the only miracle we get, or if we can hope for more. Knowing that my greedy optimism is something that is both shaming in its greed, but relentless in its need. Knowing that entropy is ever increasing, but that its march forward is also marked by the unmappable lulls and edies of each moment of this life.

Bo's first 2 teeth came through, Monday!

Bath is a four-letter word

He doesn't always cry when he takes a bath. And he doesn't always spew his milk after he nurses. In fact, after that last stone/episode at the end of March, he did really well keeping stuff down and building back his appetite from nothing. But, he's not back up to his highest volume tolerance, and he's started up with the spewing again. Though, thankfully we haven't had to revisit the repeated episodes of gagging, retching and vomiting.

I was supposed to go to bed early tonight, but between a recently discovered timesuck (Facebook), and wanting to post a relatively new picture, it's time for my real bedtime and long past my "early" bedtime.

Bo is gaining weight nicely and is very close to the 17lb mark (16.93lbs as of this morning)!