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.
Last weekend I attended a retreat for grieving mothers. Yes, it was just as excruciating as it sounds but it was also beautiful and dare I say it - healing. At any given point any one of us could start crying and no one asked what was wrong or if they were ok. Instead we were met with an ample supply of compassion, hugs and tissues. For those few days it felt normal to be this broken. We were normal broken.
What a week. It is incredibly difficult to see our country this divided over issues that mean life or death to so many. I was tuning in and out of one of the many political pundits filling air time this week when I overheard one of them say that “democracy requires empathy”. I was so struck by this sentiment, its truth and simplicity, and lack thereof in our current political landscape.
Driving home the other day I noticed a mural that had been painted on the side of a building. It read “SURVIVE”.
Not survived. Not survivor. Just, survive.
That one word resonated in every cell of my body.
In a month where I survived the anniversaries of my daughter’s passing and her birthday, in no way do I feel like a survivor. Instead, I am continuously working on surviving.
Ok, so I know I wrote an entire blog post about how I refused to write about puppies just because it would make people feel better. Buuuuuuut that was before we brought one home. Since adding this beauty to our family there has been a noticeable shift in Jackson’s total body energy. This little pup is filling a hole in Jackson that I hadn’t noticed was there until she arrived.
This is the last photo I ever took of Miss A. Monday marks one year without the bravest, fiercest, strongest human I will ever know. It’s gone by in the blink of an eye and feels like an eternity all at the same time. I hate that the anniversary of my daughter’s passing is a date I now acknowledge. But it is, and you know what? It really fucking sucks.
This week I asked Adelaide’s Nurse A to write a post for me about her unique perspective of Adelaide and, specifically, how they communicated despite Adelaide being nonverbal. Because when you truly know someone, when you take the time to watch and listen, words cease to be necessary. But I’ll let Nurse A explain…
For the last couple years I’ve included my speech from this event as a blog post and even though more people were able to view it live this year than in the past, I believe there is still value in recording it here. Every word of this appeal is true and written from my heart. Thank you for reading and thank you for your support.
