Picking out a wheelchair with your daughter is a lot like picking out a prom dress — there are loads of choices, it doesn’t happen often, you imagine the time she’ll have in it and hope it’ll be magical. And then it has to fit well, of course, and… (read more of the essay here).
My mom sent me an article about a girl in Charlotte who has a rare implication from jaundice. She was getting ready to have a surgery that would create deep brain stimulation to hopefully help control her chaotic movements and…
You can walk into any of the parks at Walt Disney World and despise the masquerade of it all. Easily. If you happen to suspend your disbelief and allow the magic to sweep you away, though, something better can happen….
I don’t always know what I’m going to write. I’ve said that before. Today, I suppose I need to write a follow up to my prior post. So many reached out to make sure I’m OK. Yes, I’m OK. Someone…
Nurses came in to tell us they were going to need the room, so they were going to move us to another one where we could spend as much time with Catherine as we’d like. I remember thinking how nice…
Years ago, I was giving a talk about Catherine’s life and how we manage to have hope through it all. At the end of the presentation, someone in the audience asked me, “What makes you angry?” “I don’t really feel…
The most common question I get from people who know Catherine right now is, “How’s she doing? Is she over the pain?” I wish I knew. Most times, she seems comfortable, but frankly, she seemed comfortable even just after surgery….
I read about you and your family on Jezebel today and just wanted to stop by and say that as a young woman, i look up to the way you’ve been able to strike a balance between career and family. Your strength is inspiring and both your daughters are beautiful. God bless.
Thanks Ali! Some days are better than others. I’ve been off the blog for awhile working super-long days. Worked nearly 22 hours yesterday. Ugh. Can’t be a very good mom doing that! God bless you, too.
Whenever I have been involved with a wheelchair order/fitting – the parent knows what to expect. Brian probably knew what to expect – looks like it anyway. I hope your daughter’s therapists are there to help fit the chair when it arrives. I think the prom dress analogy works.
We’re still waiting on the chair. I’m hoping I can make it to the next fitting 🙂
Compartmentalizing has been my sanity saver. But even that has to be balanced, or one runs the risk of disconnecting to protect one’s self from pain. It’s a tricky, but it sounds like you’ve got a handle on it. And that is wonderful, and inspiring to read.
Hope you found shoes to match! Loved your essay, Ellen. Wishing you a belated Merry Christmas.
Oooh! That’s a great idea 🙂