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SimonLevsMama

Our son, Simon Lev , became suddenly ill when he was 4 months old and was diagnosed with Heart Failure due to a disease called Cardiomyopathy. We spent 4 months in the ICU with him and endured MANY ups and downs since that fateful day. Since August 1, 2008, we have faced a decision about a heart... Full Bio
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Sun and Moon....and Bow. by SimonLevsMama Posted in: Blog Posts in Children's Health This morning we learned of another baby that passed from Cardiomyopathy. It felt like a punch to the chest joined with a weight pulling you down deep into the worst parts ... Read on »
Do You See What I See? by SimonLevsMama Posted in: Blog Posts in Children's Health Most nights when I am putting Simon to bed, there comes this moment. We begin with him lying on his back and me to his right lying on my side. After the books have been re ... Read on »
Mind The Gap by SimonLevsMama Posted in: Blog Posts in Children's Health I cannot begin to tell you why this image that comes to mind, but what happened last night felt like getting slapped across the face with a big, smelly, slimy fish.  Not v ... Read on »
A Year by SimonLevsMama Posted in: Blog Posts in Children's Health A year. Today marks a full year of Simon getting 100% of his nutrients by mouth. It's an incredible accomplishment and Laura and I feel...awful. We've both bee ... Read on »
Fuming by SimonLevsMama Posted in: Blog Posts in Children's Health I am so angry. I'm furious. I'm fucking tired of the world not being ready for my kid (our kids, kids who don't fit the mold, young humans in general). I'm yelling and r ... Read on »
The Most Amazing Sound... Maria Maria Maaaareeeeeaaaahh....Or, In This Case, Tony by SimonLevsMama Posted in: Blog Posts in Children's Health This one actually starts months ago, last spring, when we went down to Santa Cruz to hang with Simon's Dunkle (donor Uncle) Mike and family.  Emily, Simon's half-sister wa ... Read on »
Perspective All Over Me by SimonLevsMama Posted in: Blog Posts in Children's Health Laura Here; I've wanted to write for a while. I've wanted to write about our amazing summer and sweet sweet times over here. I wanted to tell you that Simon has b ... Read on »
Keshet! by SimonLevsMama Posted in: Blog Posts in Children's Health This weekend we went to Camp Keshet, a family camp for Jewish LGBT families that's part of Camp Tawonga.  It. Was. Amazing. We were supposed to go last year, but t ... Read on »
Maspeek! by SimonLevsMama Posted in: Blog Posts in Children's Health Sometimes being a parent of a kid with extra stuff and having PTSD feels like a constant cycle of some part of my heart getting ripped open and slowly healing and then get ... Read on »
These Moments by SimonLevsMama Posted in: Blog Posts in Children's Health There are these moments The one where Simon and I are lying in bed and he's about to fall asleep. He turns over and lays his head on my chest. "Will you pet this cat?" ... Read on »
Healing by SimonLevsMama Posted in: Blog Posts in Children's Health I think some of the parts of me that were so wounded by our experience when Simon first got sick were fundamentally healed during this last visit in the hospital.  I can't ... Read on »
Mayor of...Pretty Much Everywhere He Goes by SimonLevsMama Posted in: Blog Posts in Children's Health Summer is magic for this kid.  Every summer, particularly the last 3, Simon's development goes into hyperdrive, especially his social development. I think it's something a ... Read on »
Matriculation by SimonLevsMama Posted in: Blog Posts in Children's Health Some photos of Simon's graduation from Kindergarten! Getting ready for the journey Welcome to my classroom Like my mortarboard? Where's Simon? ... Read on »
They're Here! by SimonLevsMama Posted in: Blog Posts in Children's Health The therapists haven't really been actively involved yet, just mostly observing, but just having one extra adult body around with attention for Simon has made a differ ... Read on »
Family Weekend Pics by SimonLevsMama Posted in: Blog Posts in Children's Health Passover Weekend A Pop Pop Puppy Pile A fella and his daughters A girl and her Fitches   Cousins chillin' ... Read on »
Serenity by SimonLevsMama Posted in: Blog Posts in Children's Health In my typical loudmouth/external processing fashion, I've been talking a lot about the new information we got last week (the way spectrum stuff is impacting eating and the ... Read on »
Reality Stick by SimonLevsMama Posted in: Blog Posts in Children's Health This is the rest of our lives... Laura and I feel like we just got whacked upside the head with the reality stick. Hard. We had our follow up appointment ... Read on »
Addendum to SIX! by SimonLevsMama Posted in: Blog Posts in Children's Health Every time I think about Simon turning 6, I feel a pang of sadness deep in my heart.  It surprises me each time. It's a very strange experience to feel sad about a living ... Read on »
Six!! by SimonLevsMama Posted in: Blog Posts in Children's Health I'm thinking..."How Cool Is This?!!" Magic! Thank you for the Balloon Sword. Do you want to marry me?! This is just unreal! Simon's Mexic ... Read on »
A Little Broken by SimonLevsMama Posted in: Blog Posts in Children's Health I'm alone in the house. Simon is with his Aunties. Jaime is at a workshop all weekend. And the computer has been calling to me. It's been calling for weeks but I've bee ... Read on »