“You’re in a Cult. Call Your Dad!”
Look. Listen. Look and listen…if you’re a murderino surviving solely on podcasts like “My Favorite Murder” then you already know where this comes from. If not, I apologize if my true crime comedy references or morbid sense of humor offends you. Actually, I don’t. As Karen says at every live show, “if you’re offended by this then we welcome you to go ahead and get the fuck out.” I’m going to take this moment to second that because I’m done trying to please everyone. From failed plans to extreme disappointment to bad bloodwork to seizures to illness to the Disney trip from hell…every time I thought I had things under control, something else struck! I have been so checked out from everything because I have been barely able to keep my head above water, but now I’m dipping my toes in again after a while on the shore. I want to genuinely thank EVERY SINGLE PERSON who has reached out to me – there’s no way to show how much this meant to me, even though you likely did not hear back from me. Sincerely, thank you for reaching out and you all know who you are! ❤
I’ve been confused, grieving, and learning to live in an upside-down world for the past 3.5 years. But mostly, I have wanted to help other families after the horror we lived through trying to get an accurate diagnosis for Jack. So I tried blocking out all the trauma by keeping busy. I know how lucky I am in the world of the medically complex because Jack has a treatment that works well and allows him a good quality of life. I try to show the positive sides of Jack’s life while also being transparent about our struggles. However, I don’t think I’ve done a good enough job illustrating the struggles, especially the emotional and physical toll that Jack’s care takes on me (and his dad) daily. I know everyone means so well, but I can’t tell you the amount of times that I have received a message from a mom on social who tells me, “we were hoping for a PDE diagnosis after we found your page instead of ___”. I get that sentiment, believe me. However, my life has been indelibly changed since epilepsy and rare disorders entered and it is far from simple and quite often even far from enjoyable. I’m grateful for every minute, though.
My drive to help other families seemed to be leading me to advocacy work, and even a move to DC. Since Jack’s birth, everything seems so dire and I’m often jumping into things with both feet and not much forethought if I think it will help other kiddos and their families. Unfortunately, I was doing this at the detriment of own complex kiddo…and he really struggled during my travel in the fall. I am so ashamed that I didn’t see it sooner, but my poor buddy really needed more from me than I was giving. This led to tough decisions, but I’m so thrilled that since I haven’t been traveling and have been home for Jack, he is doing so much better! He really struggles when he doesn’t have a routine and does not like change of any kind (or Disney World, but that’s a whole different post).
Anyway, in my need for a distraction from metabolic disorders & rare disease bullshit, I found Karen Kilgariff & Georgia Hardstark…and their podcast, My Favorite Murder (and of course their book, Stay Sexy & Don’t Get Murdered). I’m obsessed with this true crime duo and everything they do. I’m not in the least surprised that when I listened to episode 176 about the book that I burst into tears as Karen read this passage about living with her mother’s devastating diagnosis of Alzheimer’s. I immediately felt that Karen had released this indescribable feeling inside me that I had been holding in and unable to pin down – a feeling of living in a slowly moving desperate situation and never knowing how hard you should fight this time. Maybe I’m being lazy by not using my own words but haven’t had any of my own lately and this is so powerful that I want to share it with you all!
It’s hard to follow that passage so I’m just going to say thanks again for all the support and I’m sorry I haven’t been able to find the words I needed to communicate in the past few months. I got in too deep by wanting to drive change for children (and their families) living with devastating and complex diagnoses and it was almost detrimental to my own family. I was so naive in thinking that everyone had the same drive to help people as I did. Unfortunately, I only found My Favorite Murder about 6 months ago so I didn’t yet know the signs that indicate you might be in a cult (joking – this is all light hearted). But, now I think that maybe too much of anything, even a good thing, is basically cult-like activity. I’m so happy to be “out” and trying to find peace focusing on my family and moving forward. Thanks for being the best always, friends!! If you don’t know Jack’s story or if you want to hear details straight from the horse’s mouth (ME) then check out the latest episode of the Mimosas with Moms Podcast (released today, Jan 20th, 2020)! It’s Birth Defects Prevention Month and I’m so honored that Abbey asked me to be on her awesome pod!
Metabolic Mama 