This week I have spent a lot of time thinking about life after death, spirits and consciousness. You know, super light, meandering musings…(insert eyeroll). For those individuals that have a strong sense of their beliefs, I am frankly a little jealous. These are topics I’ve avoided because I find all options overwhelming and since no one knows for sure, I figured there was no point spending too much time thinking about it. That was before my child died.
I have a lit agent now! EEEEK! I am simultaneously excited and terrified because now that someone is investing in me I better live up to expectations - both theirs and my own. Cue me panicking and imposter syndrome setting in. Some people feel like they have an angel and a devil whispering moral sweet nothings in their ears. My moral compass is solidly built on a concrete foundation of guilt, so my angel and devil have resorted to building up and tearing down my confidence. They are non-discriminatory in source material and equally relentless in their individual messages.
This week I was faced with my first life altering decision in months. It’s not life or death, but has the possibility to shape the next few years of my life. While weighing the pros and cons, I felt so rusty and out of practice. I couldn’t help but think that Kelly of two years ago would have seen the answer much more clearly. My special needs mother superpowers are dulling.
I first connected with Cindy Angulo online a couple years ago when she was a new epilepsy mama. Since then I have enjoyed watching her beautiful, strong and resilient daughter, Vera, grow into a spunky little girl. I could not have been more thrilled for the Angulo’s when they announced Vera was going to be a big sister but knew that behind the joy lay an anxiety I could only imagine. So, naturally, I asked Cindy to discuss that anxiety now that baby #2 is only days away.
While we are surviving grief it can be easier to sit in some of our heavier memories: those filled with fear, regret and mourning more closely match the pain we are internalizing. So, this week, I tried to shift my mindset and spend time with the good memories, the ones that brought laughter to my lips, energy to my eyes and harmony to my heart. After all, isn’t that how we would like to be remembered?
In the last few years there have been few among us that haven’t shouldered grief we had previously thought unimaginable, unbearable. To heal from such pain feels insurmountable. To heal we must remember . While sitting with President Joe Biden’s words this week it dawned on me that I’m not actually sure what a healed version of myself looks like. But maybe I'm ready to find out.
Raise your hand if you’re hurting! Yeah, I’m feeling it too. This week hit hard and has left our house in a super funk. Miguel is questioning what we’re doing with our lives, Jackson misses his friends and I took not one but two naps on Wednesday. Seriously. So, when does it get better exactly?
We are a nation divided by many forms of inequality. These problems feel large and oppressive, difficult to define and impossible to fix. You know what else feels that way? Having a child with an incurable condition, yet these parents and caregivers never give up and neither can we. Maybe it’s time we start asking ourselves in moments of crisis: what would a special needs parent do?
Well, friends, I finished the first draft of my book last week: 63,000 words that ensure Adelaide will live forever. At first I thought the book was going to be about Adelaide: her life, loss and lessons. But what ended up coming out was my own journey and how her lessons and her losses forever changed the course of my life. Now, I just need to find someone willing to take a chance on me and my inchstones.
Is anyone else’s anxiety peaked by this vaccine? Not about getting it, I will be first in line to get shot up with this prodigious potion. No, my anxiety is stemming from having to hit ‘play’ on life and leave the cozy cuddles of my quarantine crew. Are people going to expect me to attend their child's birthday parties again? Casual dinner parties and fancy benefits? What about school events?
Here we are, in the midst of another holiday season. This will be our second without Adelaide. We survived Thanksgiving with only a few minor emotional scratches but Christmas is looming large as we will be heading to my parents house which we haven’t been able to visit since Adelaide’s last Christmas (Thanks ‘Rona). We’re planning some new traditions, allowing for personal grace and turning up a middle finger to forced gratitude when necessary.
#Sponsored #EpilepsyAwarenessMonth fact: 70% of people with epilepsy don’t know the cause. This statistic is bananas to me, what is even crazier is that for some reason the neurological community seems to have just shrugged and accepted this as a fact. We cannot cure epilepsies (yes, plural) until we can determine their causes and current studies show that at least 50% of epilepsies are the result of genetics. So, when I connected with BioMarin and learned about https://www.canepilepsybegenetic.com, I was intrigued.
