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.
This is the face I made when someone would tell me that God only gives special children to special parents. Deep breaths cuz this tight rope is slick. I’m well aware that religion and faith are delicate topics but after years of receiving similarly distraught messages from hurt and confused caregivers I know that there are others out there that need to read this. Welcome to my intention convention.
“Maybe your next post should be about puppies.”
Look, I get it. The last couple blogs have come from a dark place, but here’s the thing, grief can be really f***ing dark. I could write about puppies or something else cute, fluffy and heart-warming, but that would be a false representation of where I am and unfair to all of those walking a similar grief journey. Grief is like playing pin the tail on the donkey but you’re spun around and blindfolded while underwater. You don’t know which way is up, let alone which direction the donkey’s ass is.
Ingredients
Grief resulting from a significant loss
Worldwide pandemic
2 days of basic socialization where grief and pandemic are discussed
At least an hours worth of tears
Pour ingredients into a container that is slightly too small to contain them all
Shake well
Let sit overnight in an overactive brain
Optional garnish: prior night’s used tissues
Best served with anti-depressants in bed
