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.
