Not so Great Expectations

Haley is doing well so I must be too right?

I am made.
I am made. Take me as I am. 

“You must be getting so much more sleep!” “You must be so happy!” “You must be so much more productive!” – These from outside and even worse, the ones from myself, are the not so great expectations that keep me up at night.

Haley continues to do well, and I am grateful; God so incredibly grateful, but with that news comes all of these expectations. I know I am my own worst critic, I know many of them are self imposed, but those innocent “You must be” comments feel like criticism because I’m not anything that everyone thinks I “must be”.

I am so far from well rested that it actually feels like a foreign country that I’ll never visit. And happy? Well. I’m just as confused about that as you are.

Haley and I making the best of a tough morning. A tough morning now is still nothing like the tough mornings of a few months ago.
Haley and I making the best of a tough morning. A tough morning now is still nothing like the tough mornings of a few months ago.

For years my emotions have been tied to Haley’s seizures. One seizure (well ok, it was never just one seizure) could siphon happiness out of a day like a punctured balloon. But I have been so desperately attached to this idea that if we could just have a break from constant crisis mode I could actually have the luxury of happiness. Happy and grateful are not the same thing. I am gratefully unhappy.

That’s not to say that I have no joy either! I have Tuesday coffee dates with amazing friends, and hours in a dance studio passing on knowledge about something I love. I have moments every day (well, ok, most days)  of sheer bliss. I DO appreciate the small things like finding shapes in the clouds, and tasting that undeniable crisp freshness that seems to define fall in New England. So I am gratefully, joyfully unhappy. See why I’m so dang confused.

I used to be able to rant and cry and vent and people understood. I mean watching your child contort and gasp and stop breathing thousands of times in a few months will push you to the precipice of your own inner strength. It will weed out anything that isn’t necessary to life. Happy? Well, no one expects that from you. But watch your child emerge from her drugged and seizing shell of herself. Be amazed daily by her wit and humor and stubbornness (NO idea where she got that. None. At all.) Watch her discover new hobbies, new joys, discover HERSELF! And everyone expects you to suddenly just be happy. (Or at least you think they do so it’s pretty much the same thing) Like I can instantly forget where we were a few short months ago, where we could be any day. Haley might not have as many seizures but she still has epilepsy. She still has seizures every day. And I am happy for her relief. I AM. I am sincerely, gratefully, joyfully, happily unhappy. (What can I say? It’s complicated.)

Now, I still get overwhelmed with every day things. I pull up in the morning drop off lane late most days, I forget to send the permission form, and to RSVP, and my house is still a mess, and dinner is still thrown together. And for crying out loud I still am not getting enough sleep. Stop! with the sleep. But now it feels worse. No longer excusable or acceptable. Because she’s doing better so I should be too right? And that, THAT, is what it boils down to. Why aren’t I doing better?

And so I am living in this weird state of limbo. With all of these (not so) great expectations of myself, and all of these (real or just perceived!) expectations from others. So the next time I am bragging about Haley’s progress please, PLEASE, try not to tell me how I must be, and let me try to tell you how I am. I promise I don’t think there’s anything that you must be either, except perfectly imperfect, authentically, YOU.

Footnote- I’m not sure why this post felt exceptionally hard to share but it did. It felt particularly vulnerable. Like I just gave a speech and realized that I was in my underwear. But better too. Purged. Cathartic. Not pretty words wrapped in a tidy package with a neat little bow, because life isn’t a tidy, neat, pretty package.

5 thoughts on “Not so Great Expectations”

  1. Thanks Jill, your writings are lititure to me. Saying thanks because my house is a mess,sent my son off to a party with the gift still on the coffee table,and my daughter project due tomorrow wasn’t finished till way past her bedtime. Oh did I mentioned there are still dishes in the sink and the belt left on my husbands jeans is keeping me awake. Bang clack you clack bang in the dryer. So,with two physically healthy kids I just want to say thanks for making me realize that I like my priorities and if if the dishes are in the sink so what. My kids will feel good their projects are done. Besides how do you know happy if you haven’t walked in the path of unhappy?

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  2. I just discovered your blog. I have a daughter who is 11 and has seizures. I have not read all of your posts yet, only some so far. I am always searching for people to connect with , who understand. I get this post. I’m glad you were brave and posted. It. I have a blog. I have about ten posts I have not put up. I get chicken and I struggle with ..a lot about posting things I guess. It’s hard to put yourself out there. Thank you for putting yourself out there. I should be happy too. Lately I have been thinking, “No one really cares.” Do they? No one really truly knows what it’s like to live this life with a child that has seizures. I know it’s not true that no one cares but it’s such a lonely life sometimes. I think random thoughts like, “I used to be a different person” and wonder what life is like for other parents. I just don’t know. This is my life. Most days I can find happiness in small things. Always there is underlying ….what do I call it? Depression? Doom? Waiting for the next seizure? I am interested in your journey on so many levels and cannot wait to read more. We are on our 5th medication and considering VNS but not there yet. Vimpat is our current trial and it seems to be going well so far. I hope for the best for you and your daughter and I look forward to reading more. It makes a difference in the world. This is what people tell me. Keep writing. It makes a difference. Last weekend I heard this: “You were born to influence someone.” That helped me. Even if it’s just my own children. Or a handful of people who read my blog. I am influencing someone in this world. And so are you.

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