activism / fucksudc / gratitude / grief / patpatforever / personal crap / progress / SUDC

Soapboxery for the New Year

It’s been 98 Fridays with a broken heart, 37 days until it’s been two years. I said that on Facebook this morning, and watched my (overall Facebook) likes fall by a handful- the kind comments have followed, but the former always strikes me. It seems like every time I post about losing Patrick I lose people, so let me just get this out of the way:

If you can’t deal with the fact that I occasionally post about being sad because I suddenly lost my 14 month old for no reason, GO THE FUCK AWAY RIGHT NOW.

…but don’t go without recognizing the fact that you have that privilege, and what a huge one it is. Don’t go without remembering that SUDC = Sudden Unexplained Death in Childhood = no cause, no cure = there’s nothing you can do to protect or prepare yourself for it.

Trust me, you are learning about this the easy way.

Grief is far from my only life or subject matter, but unfortunately for me, it’s become a part of who I am because Patrick is a part of who I am, and nothing will ever change either of those things. If there’s a singular thing I wish to impart on the world for Patrick’s and my stay here, it’s to encourage people to be grateful for every. damn. day, and to be kind to your children and each other.

One of the only things that provides any balm for me about Patrick’s life is that I spent every day loving and appreciating him (and continue to do so with my other children) because I learned that lesson in a lighter way after losing my father to Melanoma in 2010. I’m grateful I left him intact, grateful he was still breastfeeding, cosleeping and being worn every day, grateful that he was close to my heart in every way, every day of his entire life.

Because of my PTSD & SUDC, I evaluate every decision with “If I (or ____) died tonight, would I regret this?“, which is both a blessing and a curse; I get incredibly soaring heights of anxiety, but I also am pushed to find the courage to show up for my life and share my heart with others, even when it’s terrifying… it doesn’t make the latter any easier, but I go to sleep at night knowing I’ve said my piece and done my part. I always think about how need to write more. This is me trying.

Anyhow- if you can’t handle witnessing not made-for-TV grief, the fact that I occasionally say fuck, (and have an album just for swearing, actually- and one on cannabis, too) that I’m a feminist, humanist, science-loving hippie-nerd that writes sporadic, random poetry and posts, and embraces a coffee addiction open-heartedly: peace out. *If those things happen to appeal to you, consider following my blog (via the link on the top right side of the page on desktop and after the comment form on mobile)  if you haven’t already.

I’m here for authenticity, not approval. I’m here to learn and improve myself and the world around me. I’m here to hopefully lend some perspective and to share what helps me with my own, to keep my son’s memory alive, and to promote awareness for the SUDC Foundation– and that means I will never stop talking about them- and the other things that matter to me- ever.

Okay, enough soapbox for awhile. Now, go hug your kids and remind the people that you love in your life how much they mean to you. Dammit.

SUDCLOGO*If you feel like helping SUDC families, please consider participating in the Sing for SUDC Challenge, or donating to the SUDC Program here.

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8 thoughts on “Soapboxery for the New Year

  1. Horrifically sorry about the loss of your son. Unfortunately, I relate to this post. I lost my first child to a fatal genetic condition, and was very public about it. Well, lo and behold, I ‘lost’ “friends” on the facebook. If the fact that my son being dead makes you uncomfortable, then by all means, fuck all the way off.

    Thank you for sharing, and love to Patpat forever.

    Like

  2. I just found your blog. I’m so sorry to hear about your son’s death; I cannot even begin to imagine how awful that would be. Thank you for writing about your grief, despite the people who unfold you as a result. As a society we don’t talk about death enough, especially the deaths of children and infants. As a result, when a child dies, parents are often left feeling very much alone with their grief.
    Wishing you solace and courage in the face of grief.

    Like

  3. I love your posts on Facebook and your blog. My son Clayton died from SUDC in July 2014 at 13 months old. The most horrific and traumatizing thing in my life is that. I love that you say fuck sudc because that’s how I feel. Fuck this life where healthy happy beautiful babies die for no reason from nothing. Fuck that. I miss my sweet boy more then words can express and I spend everyday wishing all day that he was here again. It’s exhausting wishing he was here.

    Thank you for spreading the word about sudc most people (including doctors) tell me they’ve never heard of it. Doctors have said “he’s too old to have died like that, that’s for newborns.” Okay…except he did die from that. You think I would make this shit up? I couldn’t make this nightmare up…it’s too horrible to imagine on your own.

    #fucksudc #patpatforever

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  4. I lost my father to melanoma as well…people told me that I would eventually “get over it.” But I don’t want to get over it. And I don’t want you to have to “get over it” either. I fear for our children every day. Grief is real- and you write what you want. God bless you. (And you too Lily’s dad)

    Like

  5. Only thing you say that I can’t handle is the coffee addiction. I’m more of a tea person myself. Love your writing and find you very inspirational. I also appreciate your honesty and if others don’t, fuck them.

    Like

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