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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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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 »
Cha-cha-cha-cha-CHANGES by SimonLevsMama Posted in: Blog Posts in Children's Health We sent it back.  We sent the pump back to the insurance company.  We were terrified and excited and sort of stunned that it was already time, but we sent it back. ... Read on »
Finish line in sight but still out of reach by SimonLevsMama Posted in: Blog Posts in Children's Health It hasn't happened that often but every once in a while someone will tell me "Welcome Back! Congratulations! I'm so excited that he's eating now!" I don't know what to sa ... Read on »
Running on Fumes by SimonLevsMama Posted in: Blog Posts in Children's Health The Mommies are officially at their breaking point. Whatever we thought was hard in the hospital was child's play compared to what we are doing right now.  In the hospital ... Read on »
Day One of Freedom by SimonLevsMama Posted in: Blog Posts in Children's Health As expected today was a little...bumpy.  Breakfast was just the three of us in our little rental place and ended up being somewhat of an epic battle.  I was unsure of whet ... Read on »