Monday, July 30, 2012

We Love a Happy Ending

Bo had his DEXA bone scan and GI clinic today. I didn't go. I know! I was paralyzed with anxiety, even with all my meds, but I refrained from going. And guess what, guys? No one is dead (well, in my family)!

I thought I might be dying of breast cancer, but then I realized that since I only weaned my daughter 6 months ago (don't judge, ok? she was eating solids, and quite a bit, I might add, but was still hanging on; then, suddenly, she was over it!), that milk action was still hanging around.

So Bo is doing great, Ahn is completely boob-independent, I get to sleep through the night (bonus!), and Jose's started playing music again. Yay! I'm not dead. Probably can't do that cash-out refi to finance the anxiety-inducing plumbing thing, but, meh. That's small potatoes. Since I'm not dead, I can continue to work, get paid, and pay all the contractors to keep my house from crumbling into a pile of dust. AND... the weather won't climb above 90 degrees this week!

No drama, friends. That is a glorious thing.

Is it inhumane and colonialist to want to ride the elephant at the company picnic? Don't answer that.

Wednesday, July 25, 2012

Normal and neighborly

We have made it through these white-hot days. I pray this is the worst of it. The reality of another hospitalization is sobering, to say the least. But we celebrate today, literally, and turn a blind eye to the misfortune evaded, again.

Neighbors comment how fast you and your sister have grown, admonish us to enjoy. Both true. But I cringe, because both infancies were years that I do not cherish, and try not to remember. Days full of mind-crushing fear, exhaustion, anxiety, sleep deprivation, bearing witness to and not having the authority to stop any of the pain or fear you lived through. And waiting, in terror, for your sister, to maybe develop symptoms of the same. For two years. The pain of those excruciating days may be some kind of foreshadowing, the culmination of which I do not look forward to, nor do I cherish. Those days are behind us now, like the sweet springs that feed our lakes.

I only have an appetite to enjoy each moment now. Each hot, sweaty moment. Each long-winded story. Each non-sensical pun. Each punchline-less joke.

How about this? I cherish each beautiful moment of your infancies for the wonderyears we are now enjoying. But I do not long for any of those days. Luckily we can't, and I wouldn't, wish them back.

Our secret: 200 cc of half normal saline to be administered at the hot and sleepy siesta, or earlier, if needed. Lots of air conditioning. A fan at night. And baths.

Thursday, July 12, 2012

a four letter word

This was imprinted on the mellon colored band. Aside from these interest-group rubber bands, I haven't been able to wear necklaces or bracelets for the better part of 5 years. So I put it on and glanced at it, remembering the sweet family whose child, not much older than Bo, graciously gave it to him.

We were flying back from our first and only Oley conference, a conference for consumers and medical professionals of TPN. The airport was a nightmare with Bo and his diapers, and lines, and vomiting and sensory overload. He was screaming or uncomfortable, and I was sweating and trying to manage his discomfort. We were trying to get dressed and put back together after being frisked within an inch of nudity and fully unpacking. This activity seriously took the better part of 20 minutes.

As I kept an eye on Bo while trying to compose ourselves, another family came through the scanner to retrieve their things from the conveyer belt. Their child came close enough to Bo for him to see her bracelet. She immediately took it off and offered it to him. There was no hesitation. I don't think he was sure about giving it back, and she was uncertain about giving it away, but when she reached to retrieve it, Bo protested and her parents asked him to keep it. Only after they had disappeared down the concourse, when I remarked how kind they were, and what an unexpected reprieve from our TSA experience that was, as I was sending up thanks for the small kindness, did I see it was embossed with "HOPE."

Tuesday, July 10, 2012

Can I Tell You a Secret?

I really don't want more children. Really. When we were fighting so hard for Bo's life, when every night was a series of beeping pumps and sounds of agony, when each morning seemed the beginning of a sea of pain, I went to bed each night thinking about the Duggars, Jon & Kate and Octomom. Full of envy.

Finally, we had Ahn. And she is truly her brother's opposite. Exuberant, extroverted, unafraid.

But I know enough science to know that a genetic test that was only used in a research setting for a disease whose gene was only just mapped can only tell us so much. While Ahn's results in utero told us she did not have the same tragic genes as her brother, I was not convinced she would be spared the same fate. So her entire first year of life was spent. Waiting. For the other shoe.

It did not drop, and I finally have begun to regain bits and pieces of my sanity. But a year ago this month was certainly a dark time.

And now, while we continue to generate mountains of recycling and amass yardage of cool-packs, I'm more worried about Ahn jumping off the couch when I'm not looking, or running to the playground before bedtime. I work hard, and I play hard in my work clothes. When they say day-to-evening wear, that is what I'm thinking about. And as long as you don't mind, I don't mind going down the slide with the toddler, in my work skirt, especially if Bo says he "will be there to catch [me]."

Hot days, cool nights and late sunsets. There really is a Kalamazoo. Happy Summer!