This is Eli

A blog about Eli. A blog about survival – and by that, I mean life!

I conducted an interview with Laila last night about her likes and dislikes and thought I’d share it here — 18 seconds of my little lady rattling off likes and dislikes. The world is so simple when you’re 3. And who wouldn’t like unicorns, cactuses and princesses, really?

Puppies and cactuses: what's not to like?

Puppies and cactuses: what’s not to like?

Laila and I fit in quality time as much as we can. I sometimes worry about the division or our time and attention between Laila and Eli. CF care demands a lot of families. It’s time-consuming — an hour, maybe two a day. Maybe more. We don’t know what’s coming with an illness that develops in childhood. What does so much focus on the child with an illness do to the psyche of a well child? How about the sick child? I hate putting it like that, because I don’t like labels and don’t want to label Laila and Eli. Labeling — there’s something that’ll mess with your kids’ heads. But the fact is, Laila doesn’t have a chronic disease and Eli has cystic fibrosis. Are we doing enough for her or do we risk cultivating a big, ugly crop of resentment set to blossom at, oh, 13 or so? I don’t really know. I will say Laila is doing just fine so far. She likes taking care of buddy, ordering everybody to wash hands and policing shoe removal in the house — the stuff we do to try and do around here to keep germs at bay. Sure, sometimes she *pats* him on the head a *little too hard,* tries to swipe his favorite stuff and steals his snacks….but that’s just called ‘bein 3 and having a little brother…I think.

Laila and I have carved out Saturday mornings as ours. I take her to ballet and then we hang with her ‘lil bestie Holland and Holland’s momma Khina. So far we’ve tried out a new coffee shop and a pie place together. These mornings are lovely. I like them more because I spent about 10 years (or so it seems) taking my little sister to ballet with my mom. It’s a ritual that invokes a lot of meaningful memories for me. And maybe it impressed upon me things I only understood now. It wasn’t a sick-well dynamic. Emily was well, I was well. She still had something I didn’t — the little girlfriend could dance. Could I? No, no, not so much. I tagged along, but I never felt ignored, like a third wheel. I just felt happiness. I wasn’t so happy being dragged to Swan Lake year after year, but that’s another story.

This quality time at ballet with lailai time feels important because we spend a lot of time fussing around Eli. He’s caught another cough in the last week. That means he’s on his machine for 1.5 hours per day. I try to make it a time they both get to do something special together, like watch a favorite cartoon. Or, we all play on the floor together. Overall, I think we just try to make his time hooked up to a machine ‘normal,’ and not any kind of production or negative event.

Along those lines, I don’t like the sound of Eli’s cough. We’ve been trying to knock the crud out for a few days now. I just heard him hack in his bed, and unfortunately, it sounds worse than last night’s coughing. Maybe there will come a time when he’s always coughing, but we’re not there, so I want this to go away. We bumped up the vest machine settings to the highest it’s been – 10 megahertz. The higher the megahertz, the harder his little wrap-around vest pounds on his chest. He’s taking it like a man. I added a vid below. I also pound on his chest right before bed when he’s sleepy and not too feisty. He started tap-tapping on his own chest, which is endearing and sweet.

Back to my lailai – Below, she shares her thoughts. I couldn’t help but notice she gets rather intense while delivering her opinions…oddly familiar… Check out her eyes on the dislikes vid — laser-like! More Laila thoughts can be found @hithisiseli on Twitter.

For CF families or families with a child with health issues and others without, do you struggle with the well-child/ sick-child dynamic, or are there few issues? For those who have CF or other chronic disease, or those who have a sibling with health problems, what has helped your family cope and try to divide attention and love evenly? Or, want to share pitfalls? Just something I’ve been thinking about lately. Feel free to leave a comment, or send a note.


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