Update, Thoughts, Thanks & Love

*Riley is fine…home and fine…just a little up front disclaimer for those freaking out because I actually sat down to update. 😉

I did something tonight that I never do…I sat down and forced myself to go back…to read my words. To read what you’ve all read. Writing for me has always been so therapeutic and aided my ability to wager the storms. Reading has been too…but not my words. Others…non-stop, I am typically reading and/or listening to 3-5 books at a time. But my words? I avoid each and every letter like the damn plague. It hit me tonight that that’s likely not a very healthy approach. Ok, ok almost 5 years later I’m just seeing that…but at least I am…thanks self-reflection, yoga and therapy…y’all are paying off. Maybe that’s why I stopped writing…maybe I knew I needed to read my words as opposed to constantly typing out new ones but wasn’t ready. Why I felt ready now I have no clue but here I am…perched on my couch composing myself to type after enduring the painful inhale of my past entries.

Holy shit…we’ve been through the ringer. Like for real. I mean…I knew that…turns out it is my life and all but it really does get to a point where it feels like a story I tell and not a reality I live. I can’t believe it has been almost a year since I have updated…all in all Riley has remained on a path that while rocky has been less of a constant uphill and more riddled with switchbacks that help manage the climb. If memory serves correctly we’ve had a couple more ER visits, ambulance rides and 1 (maybe 2) re-admissions since I’ve posted but she is sleeping soundly here at home tonight and that is something I will never tire of being grateful for. She continues to gulp down an impressive cocktail of medications multiple times a day that both protect her from this germy world and attempt to keep the havoc her own little body tries to wreak on her at bay. She also continues to be the most badass patient in the world…she LOVES and I mean LOVES going to the hospital. Like excitedly shouts “SECOND HOME” the minute we pull off the freeway and she sees that colorful little logo of kiddos plastered across her 6th floor savior. There is zero fussing…she handles all the pokes and prodding like she was born for it and thank goodness because apparently she was. She is happy as ever, more grateful than most and continues to blow our minds with her resilience. And yes…I still want to be her when I grow up.

When I sat down tonight I just randomly clicked on a few posts…I wasn’t sure how I was going to feel or what exactly I was looking for in my own words. Some brought up nothing, others sheer joy and gratitude. Some knocked the damn wind out of me, most I don’t even remember writing. I laughed at how blunt I am…good god I really don’t have a filter…potty mouth, YES…filter, NO. I knew that but actually reading the shit I’ve put out into this world was humorous…which was useful because I also cried…a lot. Way to break yourself McDonald.

The last one I read though…it got me here. It got me to write again. And that was the goal. To feel something, to remember, to find my voice and let go of the fear of using it. It was this one…one I had published back in March…I think it was exactly what I needed to read. So much of it still rings true. My biggest struggles remain. The constant feeling of not being enough. The worry of how to manage it all. The fear that I am going to fuck them up. Reading it though reminded me how far I’ve come…how far we’ve come. I didn’t just say those things and then not do anything. I’ve done a lot that I didn’t really even realize to grow since then. Lately I’ve been beating myself to a pulp with “how much further along I should be” and ruminating on the qualities I lack and the areas I feel I’ll never improve. Being able to look back on my feelings in March I can see that I am ok, I am going to be ok…we are going to be ok.

I was searching for so many things then…answers to so many questions and confirmation to so much doubt. The reflection provided by reading that post gave me a few serious gifts tonight:

  1. I am no longer the mother waiting for my child to get sick again and I didn’t know that to be true until I re-read my words. I haven’t been that person for a while now. Am I still in touch with the reality of her condition, yes…but am I anxiously “waiting for it”, NO, I really, truly am not.
  2. The pressure I put on myself is still immense but I have sought out and applied a pile of coping mechanisms since that anxiety infused entry. I’m still an anxious mess…like a lot of the time…but thanks to an admission that I needed therapy, the actual going to of said therapy, meditation and every Brene Brown book ever freakin written I’m certainly shaking my way through days smoother than before.
  3.  I figured out the “work”bit. I stopped trying to pour my liquid life into a 9-5 mold meant for solids. I poured my heart and soul into figuring out how to create something that could serve both my creative/entrepreneurial spirit as well as the scheduling/needs of my medically complicated little super hero. The Mark Makers now exists…from absolutely nothing other than an idea it exists. It is officially a 501(c)(3) non-profit organization and I’ve photographed likely close to 100 children since that March post. My girls know that work is apart of me…I’ve stopped questioning myself on that front…I am confident that they will not grow to resent my choices but go out on a limb and make big ones of their own.

Biggest take away…I’ve overcome some serious fears, fears that were debilitating and in overcoming them they became motivating. I don’t want that to stop, I don’t want to forget that. I never again want to be afraid to revisit the past or terrified of the future. I want the present and it’s a damn good thing since that’s all we’ve got. Why tonight? I have no idea…but there it is…your obnoxiously overdue update on the life of Riley Jane and her rambling mother. I will try to be better about writing, not just for myself but for those who’ve loved and supported us for so many years. Thank you again for everything.

I’ll leave you with something mind-blowing…

Riley is going to be 5 next week.

FIVE. Riley. FIVE. I know, I can’t believe it either. Go. Riley. Go.

3 thoughts on “Update, Thoughts, Thanks & Love

  1. As always I feel like your words are my words in So Many Ways….I could have written so many of them…going back, rereading the myriad of emotions (posts) that have emerged from me over the years. And now, how i have finally come to a place of understanding with all of it in a way I haven’t before…self reflection, therapy, yoga and meditation have done so much to save my life that it almost feels silly to credit something so big to simple enough acts, almost.
    Often times I have though about you and RJ, I’ve wondered where you were at in your journey but I’ve silently understood your silence as I to needed that same space to just be…so many parallels
    Writing is everything, I recently started a blog that is really just a place to help me self reflect on whatever needs to be reflected on in any given moment that if people want to read then great. A mix of my journal and soul laid out for well, for whoever needs it…
    I’m so glad to read your post 💜 and that Riley is forever Riley

  2. thanks so much for the update. we have you guys in our hearts and prayers all the time. be well little one. happy birthday beautiful. mom and sis keep up the good work. you must be doing something right. love janie

  3. Wow! You’ve been busy! Good for you! For taking time for you. For recharging. For pursuing your passion. For being a good role model to your girls.

    WIshing Riley and amazing 5th birthday! I hope to see you all next week!
    -Shannon’s mom

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