Well, folks, its epilepsy awareness month so you know that means: you get to listen to me talk about epilepsy even more than I already do (is that possible?) AND our family is busy AF. In years past we have done a large fundraising campaign called #MyShotAtEpilepsy but I’m gonna be honest, this year we were tired and Adelaide has not been very stable… so we decided to be a part of at least one event a week because THAT would be less exhausting (sarcasm)… I digress.
I never wanted to be a stay-at-home mom. Not as a little girl playing with dolls and certainly not as a 20-something finding my way. Up until Adelaide was diagnosed with epilepsy and Miguel booked Hamilton, I was our family’s primary bread winner and I loved it. In fact, I was out with co-workers, celebrating my last day at one job and about to take a new step in my career, when Miguel called to tell me that he had booked Hamilton and we were moving to Chicago. Exciting? Yes! Moment of panic as I realize my entire life is changing? Hell yes!
It’s been a week, folks. One, crazy, exciting, heart-warming, bittersweet and frustrating week. Sunday, we celebrated Adelaide’s birthday among friends, family and caregivers. Sunday evening we were inspired by artists who happen to have epilepsy at The Kant Institute’s “1:26 Art in Epilepsy” art show where Miguel and I were honored for our work in the epilepsy community. Monday night was CURE’s 20th anniversary benefit and it was a night to remember where over 2.3 million dollars was raised for epilepsy research. Wednesday was Miss A’s actual birthday and by noon we were in the ER after she had four back-to-back seizures that morning.
Next Wednesday, October 17th, Miss Adelaide Grace will turn 3. Her birthdays have always been bittersweet: While we are thrilled that she has spent another year with us, (and goodness knows I LOVE planning a party), we are reminded that another year has gone by and she is still struggling and seizing. I mean, I’m pretty aware of this on a day to day basis, but birthdays are a forced reckoning.
Very early on in our journey with Miss A, Lori, the mother of one of my closest friends, reached out to me. She was battling a rare chronic disease and knew the medical system inside and out. Her advice shared in an email still resonates with me today:
Miguel is driving our family down the interstate as we return home from visiting with friends. Adelaide’s pulse oximeter starts alarming behind us. A quick glance at the machine’s display tells me that Adelaide’s oxygen rate has dipped below the healthy 90% mark and is not coming back up.
Oof, my anxiety is KICKIN' this week! I can’t identify the exact cause this time, but ‘D: all of the above’ seems to be an appropriate answer. Most often, my anxiety ramps up when I start to feel that I’m losing a handle on certain situations.
This week marks our two year anniversary in Chicago. I wrote a whole post about the three months leading up to that move and couldn’t come up with a point, other than I believe it would make an excellent Oscar-nominated vehicle for the likes of the next Julia Roberts/Sandra Bullock. Screenwriters, feel free to hit me up once I’ve written the book.
My father said it best, “Adelaide travels like a small rock band”. Which I suppose makes the rest of us her roadies. Whenever possible we load up the minivan and drive to our destination but sometimes you have to fly and, lemme tell ya, there better be a margarita waiting for me on the other side.
Last Friday, I was driving around by myself, attending meetings for CURE, running errands, enjoying seeing the messages of encouragement come through from the latest blog post, and I felt content. No, more than content, I was happy, genuinely happy. My children were stable and I felt productive and fulfilled. Three things I have not experienced at the same time in, well, years. However, almost as soon as I acknowledged my happiness I was racked with guilt and anxiety.
Once upon a time there was a little girl who, every three weeks, for three days in a row, went to the infusion clinic at the hospital for IV immunoglobulin treatments, IVIG for short.
It's taken me a looooong time to get this blog started so I'm going with what's motivating me right now, and that's the perception of life with a special needs kiddo.
