“Hello? Are you still there?” My phone has been dropping calls lately. The line remained flat until she came up for air with a shallow, pressured breath. She sobbed. My heart fell into the hard stone that was now my solar plexus. With a slow breath, I answered my own question, “I know, mama. I’m still here too.”
Still holding that line with you. The one that feels . . . so . . . thin . . . The line that feels certain to snap from the sharp edges of our ugly cries, but we test it anyway because sometimes throwing a wild tantrum is all that can be done, and somehow it never breaks. Nobody loves a good cry more than me. I was honored that she called.
I’m still here too. Still in it with you. We got another call from the school this week and I don’t know what to believe. The dark places in me are beginning to think that seizure freedom is some twisted holy grail. It doesn’t matter how long he goes without a seizure, I tuck my child in every night very aware of SUDEP and that he, you know, might not wake up in the morning.
By the graces of the Goddess, he does. We both do, every day. I’m still here too. Somehow this mother and sister of mine is also. This same thin line that keeps us strung up, strings us together. Our vulnerable stories of fear, hope and surrender weave our spirits around each others, creating the only comfort I can find on dark days.
Other mothers are still here too. I dropped a line to a few I know when I was especially at the end of my rope a month ago. I had gotten to spend a little bit of time individually with Cindy Mitchell, Elizabeth Aquino and MaryLou Connolley at the recent Epilepsy Summit and left disappointed that it wasn’t possible to get us all in the same room. Each of them has an adult child with epilepsy. They’ve been doing this a long time. And that’s exactly what impresses me most about all of them - that they’ve been doing this a long time. Way too long. Instead of throwing another tantrum, I decided to dry my eyes and see if I could get them all* to meet me tomorrow for breakfast.
If you were on the Realm of Caring’s wait list in California, then you already know Cindy Mitchell. You also may know her through her work increasing SUPED awareness with the Danny Did Foundation. She’s not afraid of the dark and stays up working all night.
Speaking of dark, Elizabeth Aquino, my current crush will also be there. She’s always up to something interesting. From writing a book to home schooling, Elizabeth does all the cool things I imagine myself doing if only I had the stamina to do more than the bare minimum.
And MaryLou Connolly is our local longtime San Diego advocate. She has this great smile that always seems to say “I’m on to you.” She’s sharp and I get the sense she’s paying attention on every level. I also bet she says “cut the crap” a lot.
I would have been lost without the lifelines they have each unknowingly thrown my direction at different times over the past two years. By just being themselves. Who else would have known how to lead me to hope?
* And if I could have invited Jill Hitchman-Osborn, I would have. Sadly, she’s on the opposite coast.