Wednesday, August 9, 2017

Nine Years Ago

Dear Simon (aka Bane, Voldemort, Princess Celestia, Megatron, Darth Vader, Trender Hoof, etc etc)

Today is August 1st. Nine years ago today I thought I knew who I was, what I was doing, and where I was going. You changed all that with a simple wheeze. Several hours later you were fighting for your life with this incredible will, amazing team at Children’s Hospital, a ventilator, and two broken and shell shocked mommies. I will never forget that feeling of handing your sweet exhausted little body over to the nurses and Dr Williams knowing what they had to do, and that it would hopefully save your life. I will never forget that feeling of complete surrender. It was the same feeling I had 6 weeks later when Jaime and I made the decision to not list you for a transplant, believing that whatever needed to happen would happen and that Jaime and I would be whoever we were meant to be, as moms, as partners, as individuals.

 For those 113 days with you in the ICU, I practiced being present. I practiced slowing down. I practiced breathing and trusting and feeling all the feels because if I didn’t I might miss a moment with you and we didn’t know how many more of those we might have.
I remember knowing that I had to take care of myself first because 15 hour days in the ICU was what was being asked of me and I didn’t want to/ couldn’t imagine doing anything else. But when I got to take 15 min breaks or someone came to hold you for an hour while I went home to take Roxie out for a walk in the sun and non-recycled air, I knew I had to do it. I learned to accept and even ask for help. I recommitted to touch and song and finding the Light even in the midst of beeps and needles and medications administered and even in what felt like the darkest of dark.

And we laughed. Jaime and I laughed and welcomed new people and ate RedVines. We did it like there was no tomorrow. We held each other. We held each other physically, emotionally and spiritually.

We did it for months in the hospital. We did it for the years out of the hospital when things were still so dicey with compromised immune systems and feeding tubes and so so many medications. Your Mama and I stayed present to each other during some really hard shit, more hospitalizations, more diagnoses, bigger risks and amazing surprises from you as you worked your magic, on your own timeline, to becoming the weird and wonderful 9 year old you are today.

We will never be out of the woods with Cardiomyopathy. Autism keeps us re-framing and relearning about the world and the way you see it, and ADHD makes sure that we stay in the moment, breathing deeply to be closer to you as you pace yourself in this growing up process, ever drawing those around you into your imaginative and complex world.

This August I will be finishing up my yearlong Residency program in Chaplaincy and I want to thank you. It was you and your ‘big heart’ that took me off my School Social worker path and brought me to this moment. A few days ago I got offered my dream job. It works for me, it works for our family, and it means getting to follow a calling; a calling that you brought me to with what I can only describe as your divine connection.  You have shown me over and over again, through parenting, through partnering with Jaime, through your own bright and unmistakable Light, more of what I meant to do with this life. I love being a chaplain. I love the process, I love the practice, I love the learning. 

You are like my very own living, breathing Shehechianu blessing and I just want to take this moment to thank you. Thank you for bringing me to this time and this place. Thank you for all the ways that you have made our family what it is. Thank you for the opportunities to learn and connect with the world around me in new and wonder-full ways. Thank you for showing me that beautiful and brutal are loving cousins and most of all, thank you for the chance to play, imagine, see, breathe, cry, laugh, love and live during this time with you. I am humbled and honored to be your mom, a chaplain, a wife, and simply me.

Sunday, July 9, 2017

(Almost) Annual Update

We were at Camp Taylor (a cardiac family camp) this weekend and being around so many other "heart" families brought the cardiac stuff to the forefront of my mind in a way it hasn't been in a while.  While we were at camp, I decided to re-read our last blog post and realized it's been almost a year since our last post!  It made me smile, actually,  because it's a marker of how medically stable Simon has been. Around here no news is good news.

That said, there's a lot to catch up on...

My (Jaime) depression finally got to a point where I decided, after much kicking, screaming and trying every other possible avenue, to try an SSRI.  The first drug I tried was Zoloft and I am not kidding when I say that literally the next day I felt like I was seeing the sun and hearing the birds for the first time in close to a decade.  I assumed that must have been a placebo effect because I've always heard that SSRIs take weeks to get up to dose, but have since learned that it was a real, true response of my brain to finally getting what it needed.  I joked that my brain was like Pac Man gobbling up the SSRI hungrily.  Nom nom nom.  My therapist told me that Zoloft is now prescribed for women who have very severe PMS for 5 days a month and that it works that quickly and effectively.   Who knew?

I developed a weird rash after less than 2 weeks, so they made me taper off and wait for the rash to go away until I could try something new.  That tapering process was mindblowingly informative.  After a few days off Zoloft, every day that passed brought a deeper layer of fog that left me feeling tired in a profound way that left me unenthused about everything. Like, everything just seemed like it was going to take more effort than it was worth, even things I usually like. I realized that that was how I had felt for YEARS but had just gotten used to it. Holy crap, wake up call.  

Since finding a new med that works (and bonus, no side effects for me!) I've realized that the last 5-8 years have been like walking around with a raw abrasion.  You know that feeling when you have a big new scrape and anything hits it (water, air, clothing, a table) sends shockwaves through your whole system that make you catch your breath and your head spin?  Life was kinda like that for me.  I'd just catch my breath from the latest bump, no matter how small, and the next thing would hit and my whole system would just start up on red alert.  

My therapist had the best analogy- when you break an arm and you put a cast on it, the cast isn't healing your arm.  It's creating an environment for your arm to heal, but your body is doing the actual healing.  That was the most helpful thing for me because I have such a stubborn "I'm fine, I can suck it up, I can do it myself" attitude.  What I heard her say was that trying meds might give my brain an opportunity to rest enough so that all the other hard work I'm doing to keep myself healthy (therapy, exercise, eating well, meditation, etc) has a better shot of actually getting in and helping. Going on meds has been like putting a bandage over it so the raw places can scab over.  Almost every day I say to Laura cheerily "I'm so glad I'm on an SSRI" and she just smiles at me knowingly as she'd been trying to convince me to face my fears about this for the last few years.  

I think one of the other things that tipped me towards deciding to try an SSRI was seeing statistics about the PTSD/anxiety/depression rates of parents of kids who have severe medical trauma and very similar data for parents of kids who have developmental/behavioral challenges.  I did the math on us and realized that what we face on a day to day level is so absurd that it's almost inhuman to expect someone to manage it with the "self-care" most people use with success.  I also checked around and realized that almost every single parent I know of a kid with severe special needs is getting some sort of medical support for depression/anxiety.  I like to think of myself as SO special, but...apparently not so much.  

Life feels so much more manageable. The fears of judgement (from myself and others) seem so silly knowing what I know on the other side.  A good friend who has a very similar personality went on an SSRI about a decade ago and when I was picking her brain, one thing she said most that stuck with me was "when I finally tried meds, I  realized how much energy I had spent just trying to keep my head above water.  It wasn't until I could rest that I realized how hard I'd been working and how little energy it left me for all the other great things in life".  Exactly. 

In other news, in January we completed a neuropsych assessment for Simon to investigate ADHD (with an AMAZING provider!) and Simon received his third diagnosis- Inattentive ADHD.  After much discussion and thought and great conversations with our pediatrician, we decided to try meds.  Holy smokes.  His behavior and grades went up a whole level almost immediately.  For the first time ever, after Spring Break, he didn't wake up every morning asking "no school today"?  He was actually almost in tears that school was ENDING.  After trying them on weekends and for events a few times we decided they're a great tool for school but not for other stuff.  Again, sometimes meds can be awesome.  Not such a popular stance in lefty lesbo circles, but it's true. 

One other thing I learned this weekend at heart camp, related to autism, oddly, kinda blew me away.  David, one of Simon's nurses from his PICU stay 8+ years ago was working at camp.  We were strolling down memory lane about lots of sad and funny stuff and at one point I said, "do you remember how when he was intubated he just chewed up Versed like it was candy?".  (His dose of the sedative would wear off WAY faster than normal, leading to some creative thinking about ways to keep him sedated).  David casually said, "Oh yeah, kids with autism metabolize those kinds of drugs really differently.  We always have a really hard time trying to figure out how to keep them sedated". 

I just sort of stood there and stared at him. He was telling me Simon was autistic even as a baby. That news sort of rocked my foundation.  Simon is so quirky and doesn't fit neatly into a lot of the diagnostic stuff around autism so I've always sort of thought (for no real reason I can come up with) that he's not actually autistic but has autistic-like behaviors that largely stem from the trauma and interruption in development.  Big whoop.  Makes no difference on the ground and I don't think I have stigma stuff about autism, so why my brain has held onto this illogical origin story of his quirks and delays, I don't know.  There is new genetic data showing it's a genetically coded trait  (like schizophrenia or other brain function differences) that can be there but inactive unless a trigger turns those pathways on.  Maybe heart disease-related trauma was the trigger.  Maybe he would have developed autism anyway.  Who knows.  Mostly the whole thing really made me look at the thoughts I have about the origin story of his autism and why my brain even thinks it matters. 

I also had the clever thought of, "Oh goody! If hospitals see infants who metabolize Versed and similar drugs differently they can let the parents know that's a marker of autism so they can be vigilant about screening".  I quickly realized that if a kid is needing Versed, the last thing the parents need is one more thing to worry about and that that was probably a horrible idea. Duh.  

Onto Laura:
Last September Laura started a Hospital Chaplaincy program and has found her calling.  She absolutely adores it and is now seriously thinking about doing a distance rabbinical school program.  She's been doing such an amazing job at her work that she received an award from the training hospital for her excellence.  I'm so proud I could just cry.  She graduates this August and will be on her way to becoming a Board Certified Chaplain!  Then we figure out the job thing.  Whatever.  She found her life's work for this next decade at least.  How many people do you know that can say that? 

The last update is that a week ago, Laura had somewhat emergent rotator cuff surgery for a mysterious and pretty severe tear of her right shoulder.  The surgery went well but the whole thing sucks.  She's looking at a long road of pain and PT as she gets it back in shape.  It was an interesting test of the SSRI as she's had 2 other surgeries since Simon was born and both times the whole thing sent me over the edge.  This time I just rolled with it and was appropriately stressed/anxious.  Better for everyone!

The short version is: Simon is medically stable, getting the developmental supports he need and is as quirky and hilarious as ever.  Laura is finding her bliss professionally and dealing with some hard body stuff.  I'm finally able to enjoy life thanks to a much overdue and needed pharmaceutical assist and figuring out how to slow down, be gentle and enjoy some of the simpler things in life.  

Life, for now, is pretty good. 

Simon made Safety Patrol this year!

Preparing to meet Voldemort, on our way to Orlando

Protecting the bus stop. 

Hanging out with Max, our new buddy at the Oakland Zoo

Goofiest school photo!

Getting to cook with real chefs, through a great org called Coach Art

Keeping Oakland's street safe

Suiting up for the Farmer's Market.  As you do. 

Powering up for our flight. 

Makin' friends in Orlando.