Jump! How High?

Bo is jumping and bearing weight on his dumpling feet. I am having a hard time picturing him running by the end of the summer (or is it that I am having a hard time picturing our house child-proof by the end of the summer?). But then, this time last year, he was still in utero.

We just went to see our friends' new baby, born Wednesday and weighing in at 7lbs, 13oz. She seemed so tiny and only barely human. I remember Bo fighting to get to that weight after a month and a half, but barely remember the feeling of holding someone so small for so long. Now it is eighteen pounds of wiggle-toes and laughter (like, ha! you think I'm taking a nap?! Crazy mommie).

Send Good Wishes for Murray

While we are actively looking for a new home for Murray, she got in a terrible accident last night and is in hospital for the next 5 days for observation. The best case scenario will leave her with a bobbed tail. The worst case scenario, is the worst case scenario. I am so crushed and devastated that Murray may have to lose her beautiful tail, or more. I love that fat, furry little girl. And Bo may never rembember her, but she loves dominating/sitting on (and under) his stuff.

Sleeping Beauty

After Bo is asleep for the night, one thing I often find myself doing is scrolling through the most recent pictures we have of him in our camera.

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.