to share or not to share
This past week I woke up in the guest room of my parents new house 5 hours away from mine. I’ve always lived within a few blocks of my parents, even when I attended college. Their new house in the city is located in a perfect location where it gets the rising sun, and as I drank my morning cup of coffee the lightbeams cast shadows on my mug. If you asked me what I remember most about being a little girl it would be mornings with my mom while she was drinking her coffee.
My husband and I spent a few days this past week at my transplant center. I’ve shared rather bluntly that the last few months have been HARD. This last week was hard. I feel like we keep getting handed piles of hard. And as much as I say we can do hard things, I’m also at the point where I want to throw my hands up, have a toddler style meltdown and scream “but I don’t want to do hard things!”
We got home, and I began thinking about what exactly I wanted to share. I’ve been incredibly open about this entire transplantation journey, from even before I was listed to now 2 years post transplant. And for the most part being so transparent about my journey has been a positive thing.
In the past few years as I’ve moved out of survival mode and into “normal life” I’ve been able to being processing a lot of the trauma that existed within my years of being so sick. And holding that trauma, I’ve realized it’s something I am only beginning to understand for myself, and am not yet able to translate that into language that can be consumed by someone other than my therapist let alone the criticism of social media. And throughout my time documenting my medical adventures, I’ve grown up. There are people who have watched my life via social media through puberty into being a teenager and into college, as I became an adult and got married, had and lost a child. It’s been a trip (and given me a whole new perspective on children of influencers or ‘vlog families’)
One thing the last few years has taught me is how much I really love being normal. Nothing about my life is or ever will be normal, and being a disability and trauma advocate is something I feel will always remain a really important part of my life, and I also just genuinely enjoy sharing about my hobbies and childhood memories and coffee. I’m in my mid to late twenties now (isn’t that weird to say) and it’s not a secret there’s been talk about growing our family and what that will look like and my career and what thats going to look like, and I have this whole life now outside of being sick that wasn’t available to me prior to transplant.
I follow a fellow transplant mom on social media, and she says that she started her brand as an outlet for her hobbies, for her passion, for her to be able to be something other than a transplant mom when her daughter’s medical condition felt so overwhelming. And of course she shares about her daughter, but she also posts about fashion and home decor. I’m still trying to find that parallel in my own life, and where the line is between sharing about my health while also just sharing about me. Because I’m realizing those aren’t the same.
And while I am so grateful to the community who has held me this far, and I feel like sharing updates on my health will always be a thing because it’s part of who I am, so is being a loss mom and an embodiment coach and a social media manager and a wife and a poet and…
my life is changing and my priorities are shifting, and I think that’s a really beautiful unfolding. It’s a future I never would have thought possible from where I once stood.
