Disclaimer - I swear when I’m angry.
Yesterday was the shittiest of days.
I received a message in the afternoon from someone who stated to be a long time follower of our journey. She said she was messaging before she pressed un-follow, to let me know how she felt about my post yesterday.
She explained that she was extremely upset that I posted a photo of my deceased son and used him to support “my brand”. She said that she generally is wary of “influencers who fall into the real life category”, and that I crossed an ethical line. She said in the past she related to me “because she is a mom”, but that she was incredibly upset with how (posting a photo of Lochlan next to a candle) I supported a local company.
I. Was. Floored.
Beyond just fucking disbelief that she had the balls to make this statement, I am sad that it’s even possible someone came to this conclusion.
My family is backbone to why I advocate the way I do. They are NOT the expense at which I do it.
I don’t need to defend myself because I don’t believe I did anything wrong. But. I do want to explain the ethos behind what I’m doing here in the space, so that if ANYONE who feels like my ethics behind my advocacy are wrong - can just move the F along.
I am creating awareness for the most horrible thing that can happen to a person. I am talking about, encouraging conversation and creating a safe place for others to express grief, deal with tragic loss or the unknowing path that follows a special needs diagnosis. In a few years, the friends who follow along here have grown tremendously - which is not seen as a popularity pat on the back - but as affirmation that a space like this one needs to exist. As my reach grows, so does the awareness I create , and so do the companies who want to collaborate with a person that talks about hard things. I am massively aware that people come here for support or to open a flood gate of tears on a tremendously bad day - so I try AS BEST I CAN to offer a multitude of ways to deal with grief and sadness. Does lighting a really nice smelling candle feel good on a day where you just want curl up and hide? You fucking bet it does. So here’s a code to get yourself one, and hey, support a local mom owned company while you’re at it. I try to offer humor among hard times, I try to be as open as possible so other can see that breaking wide open is ok and even necessary,
to begin the path to healing.
Some of the things I write about here take all my strength and courage to post. It’s not bravery that fuels me, but the first hand experience of being in the darkest place possible and seeing no sign of light. The only rules any of us need to go by in this space is to be kind with each other, to offer help and to lift each other up if we are able. This women told me she was “letting me know there comes a responsibility with how my posts will be revived”. Are you kidding me? Is she actually assuming I’m not aware of the responsibility of words? A person who was delivered a fatal diagnosis, a special needs diagnosis and the news her dad would die in a week, all within 4 years... you don’t think I know about responsibility of information? If I wasn’t so angry I’d be crying, but all my tears were spent yesterday.
I am so hurt that this person - who claims to have followed me for a long time - boiled me down to an ethical-line-crossing-brand-influencer in one post. Don’t get me wrong, I fully recognize that being here and sharing in my full capacity I am opening myself up to criticism and speculation, that’s the cost of being passionate and vocal. But, I will not stay silent when my whole heart and soul are questioned, when I’ve literally put years of my time and energy into creating a place as real and truthful as I possibly can.
I won’t dwell on this after today, I won’t post about it again. But I had to be true to myself and say all of this out loud, so I know where to point anyone else who might share this person’s view.
Change and awareness doesn’t come from sitting back and hoping someone else will do it. Advocacy is hard. Writing a note from behind your phone is week, and I can say with perfect clarity that anyone who does that, doesn’t deserve my story anyways.