All tagged Grief
Words and I have been tight for decades now. First, it was talking about my feelings (thanks Mom), and more recently I turned to writing. But these last couple of weeks I’ve been struggling to find the right words to explain my feelings, or more specifically, my emotional responses to events.
Before Adelaide died, I wrote about the garden she had planted for us, a garden full of people that would lift us up and take care of us after her passing. What I didn’t realize at the time was that as long as I continued to cultivate this garden, by maintaining relationships or doing work in her memory, her garden would continue to grow and thrive.
During high school, I developed a slight obsession with Gilda Radner following a National Forensics League tournament (not dead people, more like competitive speech and acting – obviously only the coolest kids did it). Last week I decided to go back and reread Gilda’s memoir, “It’s Always Something”. I hadn’t read it since high school when it took a stranglehold on me, and I was curious what effect it would have on me now.
Next week, on Tuesday, March 26th, the epilepsy community comes together for Purple Day, one of several epilepsy awareness days throughout the year. While my commitment to this community certainly hasn’t waned, I recently had to acknowledge that my sense of urgency has. Perhaps this is to be expected. I’m no longer administering medications five times a day, fighting with insurance, or holding my daughter as she seizes.
Logically, I know that our bodies hold on to grief. I’ve read about it in various books, researched it for my own, as well as had personal experiences. However, my knowledge revolved around episodic symptoms. What I didn’t understand were the long-term effects.
Today is Anessa’s 5th birthday! There is not a day that goes by that I am not enterally grateful to call her my daughter. Her addition to our family has been nothing short of transformative. There are also days where I wonder how she has managed to transform every ounce of my patience into bone-tingling frustration.
Through the marketing of Normal Broken, I’ve had the opportunity to listen, relate, and connect with person after person who is facing their unique grief while craving a sense of community and understanding. One of these people, is Tasha Firoza Faruqui, a pediatrician and mother of three, whose middle child, Soraya, has an unknown neurodegenerative condition with no cure. Today, I ask you to sit in the dark with Tasha, Soraya, and their family. To witness their journey and send them the love and strength they need, as they survive with tears on their faces and laughter in their hearts.
What do I even say about the magic that occurred on Sunday evening? I was so caught up in the logistics –family and friends coming in from out of town, making sure everyone’s tickets were squared away, that they knew how to get to the after-party – I hadn’t given much thought to the main event. That was admittedly on purpose though. One of my favorite coping mechanisms is to focus on what I can control so I don’t dwell on what I can’t.
I asked Miguel if he wanted to write this week’s blog post in honor of his final performance as Alexander Hamilton this Sunday. He kindly obliged. I don’t believe that either of us has been brave enough to sit down and process what this show has meant to our family and how complicated this goodbye is.
Countless times I have been told with the utmost sincerity and respect, “I lost my parent/spouse/sibling, but that’s nothing like losing a child.” Child loss is generally considered, to quote from Hamilton, “the unimaginable”. The thing is labeling grief from child loss this way doesn’t benefit the griever as many people seem to think it should.
It’s only been two weeks since my last post, but it might as well have been two months. That my family is currently functional at all is a testament to my mother and aunt who stepped in to help while I’ve been away. This is a season of life. I keep reminding myself that while simultaneously trying to enjoy my newfound freedom and purpose. Seriously, this tour has been incredible and I am beyond grateful that I could travel and share my words in the way I have. But I would feel false if I didn’t admit that even still my grief catches up to me.
With Normal Broken out in the world and my book tour underway, I figured everyone would forgive me if there was no blog this week. Then I got on the plane to fly from New Jersey to Chicago and was hit with the reality of what I was embarking on and what a big deal all of this is for me professionally and personally.
