Shock Baby

Shock isn’t momentary. It can last a long time. I’ve been managing shock, often with grace and sometimes with ugliness, this past year – holding it, caressing it, disdaining it, wallowing in it, but never coming to peace with it. A year is a blip some say. But when every day, every moment, every bite my daughter eats, makes me painfully aware of the precariousness of life, it’s a damn long time.

I haven’t written for eons; I’ve been immersed keeping Charlotte alive and thriving, and Max engaged and knowing how great he is when the energy of a family is spent unfairly on one child whose life is in peril. And I don’t say that lightly. My girl can’t live without costly insulin and the devices that administer it to her 24/7. People tell me I’m lucky, that we can manage T1D. That it will get easier. Sigh. A chronic autoimmune disease for which there is no cure, which makes my girl dependent on a regiment of taxing self-monitoring, insulin administration, and constant vigilance is not easy and it never will be.

My girl’s every new experience demands I educate and advocate, making sure people with whom I entrust her have minimal knowledge of how to help her if she’s low or high – or heaven help them, comatose. I loathe this process. Instead of feeling empowered that I’m passing along pivotal information, I worry that people will be overwhelmed with the responsibility of Charlo’s life. And I know that despite best efforts, they don’t really get ‘it.’ The relentlessness, the long term health risks of highs which are numerous and heady, the fact that a lick of a brownie-batter-covered spatula, a banana, or a small handful of potato chips will send her blood sugars crazy high unless she compensates with insulin. Something she needs to do BEFORE said delicious morsels pass her lips. Not easy for a 10 year old.

A couple weeks ago, Charlotte slept with her two dearest friends on the trampoline under the stars. Awesome! I’m thankful that she was confident enough to do it. But, I worry that she won’t wake up. That her sugars will drop to perilous levels. That she will die in her sleep. Not a bad way to go, especially if you’ve lived a long life. But she is ten. My baby, whose resilience and fortitude are unparalleled. And shocking.

She is at ‘normal’ camp this week. For kids like the rest of us whose bodies work as they should, yippee! And for my girl, whose body is her enemy, whoohoo! You rock. And likely my shock and heartbreak won’t end. My admiration for Charlo and Max, who quietly deals with so much, is boundless.

Advertisements

One comment on “Shock Baby

  1. Emory Oeding says:

    Wow, dear Liza. The longer I parent, the more I realize that we had no freaking idea what we signed up for. I don’t know why I ever thought that, gazing at my newborn babes, it would all “go well”. Sometimes it does, but sometimes it is so far from that, it is simply bewildering. I think whoever said that having a child is to decide forever to have your heart go walking around outside your body said it best. Sending well wishes to you and your family. 🙂 Emory

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s