Tuesday, April 5, 2016

Surgery/procedure day- It doesnt get easier...

Today was the
 39th time
I have handed one of my precious babies over to
a team of specialists, doctors, nurses, techs, students and anesthesiologists
for a procedure under general anesthesia.

and let me let you in on a little secret:

It doesn't get any easier.

Now I'm not saying that I still fall to pieces
crying and blubbering like the first few times
that I handed my oldest child Lily over to the surgeons.
No it's not obvious to others not close to me that it's still this hard.
Like all parents of chronically ill children we develop a thick skin
and a really really good poker face.
I have gotten so used to the routine at our local children's hospital that it feels like a second home
( an odd uncomfortable home that's teetering somewhere between feeling like you are under house arrest and living in some strange super clean toy store)

I am so familiar with it that I can see, hear, taste, smell and feel it all anytime I close my eyes...

the cacophony of children's laughter and agonized cries of children in pain with
the equally agonized cries of worried and distraught parents,
the laughs of "frequent flyer" parents who have learned to laugh instead of cry,
the beeps, and chimes, and alarms
of all the pumps and machines and devices that keep our precious ones alive.
The happy banter of doctors and nurses who work so hard,
and have become outwardly immune to the suffering that surrounds them daily.
(And if you think that most of those doctors and nurses don't take their work home with them and worry about their patients, you are wrong)
The occasional soul stopping sound of a doctor's low urgent voice explaining to another physician what just went horrifically, nightmarishly wrong in the surgery that directly precedes your own childs.
The bright colors that try so hard to make a sterile, terrifying environment, child friendly.
The cold chill that runs down my spine when I hear a code called over the intercom 
and the immediate flashbacks of when codes have been called for my own child.
The smell of the chemical cleaners, and the antibacterial soap that makes me sick to my stomach every time I wash my hands. 
The way the air immediately dries out my throat and nose and lips
(and how I always forget my chapstick.)
The familiar ache that immediately rushes back to my hips and lower back
from those chairs that they expect parents to sit, and sometimes sleep, in for hours at a time.
The equally familiar tightness in my neck and shoulders from cradling a crying baby or child as they struggle with pain, fear, exhaustion, nausea, and confusion for seemingly endless hours.
The paperwork,
ohhhh all the tedious redundant paperwork,
to me all it looks like now is 
"if  your kid dies its not our fault
now sign here,
and here...
and here...

and here...."

I am familiar with it all,
with 39 procedures and/or surgeries under anesthesia
and an additional 
42 hospital admissions of usually a week or more each
plus countless appointments and Er visits
(between all 3 kids combined)
you would think that I got this,
that its not a big deal anymore.
And I play it off that way.
In fact I play it off so well that I have been accused of not caring,
 I've been accused
of being so jaded that it doesn't even phase me when my kid is having a procedure done...
But it destroys me



And yes I have become jaded to certain things,
Shots for example, 
I don't cry when my kids get their shots, 
not after what they've been through.
The thing that people 
understand unless they have experienced it with their own child/children is
we cannot dissolve into tears over every medical issue, all the time.
Not when this kinda thing goes on for weeks, months, or years.

Most of us,parents of chronically ill children, have already cried so many tears alone in the shower or into their pillow at night that there aren't many more tears to cry.
there is such a thing as all cried out.
Also, its really really difficult to make logical well thought out decisions
when you are crying so hard that you can't even see.
And the doctors only have so long,
 you have to be super aware, super present for those precious 5-10 minutes that you might get with that doctor/specialist/surgeon.
And then of course when mommy cries the baby or child cries, 
they are already scared and one sure fire way to send a child into panic mode is if mommy falls apart.

So for those reasons I developed a thick skin
and then at some point 
I also realised that this was my kids childhood and she wasnt gonna stop growing just because she was in the hospital all the time.
So I made the most of it
and I made a conscious effort to
Choose Joy
every single day
because I am a better mom when I choose Joy.

But the night before surgery day I barely sleep,
and alone in my room I fall to my knees and pour out my soul in a more desperate prayer
than my usual prayers.

and then when my kids are awake the day of surgery we are in happy mode
I am determined to make the most of every moment
underneath the smile is a  raging tempest of hurt and worry for my sweet child.
We bring favorite toys, I sing them their favorite songs
they get to wear their Pjs as clothes for the day!
(a very exciting thing in our house that's always met with cheers and applause).
I do my best to be as present in the moment as possible with my children.
I nod and "uh-huh" through the novel of paperwork.
I try not to think about what can go wrong.
and then when they come get us to take my baby back to put him or her under,
my wall starts to dissolve.
usually right about now a few traitor tears start escaping.

Its harder when its a bigger surgery like the trach, or something
and the nurse takes my baby out of my arms
and I have to let her go
and they walk away
the whole time my baby screaming 
"mommy mommy"
and I am
they won't let me go with.
they expect me to walk away and go sit in a waiting room with all the other parents.
but my feet wont move.
this nurse just took my child and is walking away with them
and I don't want to let them go and they don't want to go
and my baby is crying and screaming and reaching for me...

and all logic that tells me that its ok , that this surgury/procedure is necessary flees out of my head and all I can think in that moment is that that nurse, stranger,
 is gonna take my baby into a room full of
 doctors, nurses, techs, surgeons,anesthesiologists,
and they are gonna hurt my child,
they are gonna cut her 
 and make her bleed. 
when she wakes up she will be hurting

and I want to run after my baby and make her safe.
I want to grab my sobbing child out of that strangers arms 
and rip up the surgery consents that I signed
and run away and keep my child safe.
And in that moment I Hate that I am ALLOWING this to happen
how can i just stand here and let some random person take my baby down that long hall
that haunts my dreams
into a room where they will hurt her??

but I am glued to the spot.

And my whole world stops spinning.

Eventually after I've stood there staring up the hall where my child disappeared
,tears now flowing freely,
and once my babies cries cant be heard anymore
a seasoned hospital staff member will touch my arm and bring me racing back to reality.
I start walking to the waiting room
I repeat the same things in my head each time
"this too shall pass"
" I can do all things through Christ who strengtheneth me"
"She/he's gonna be ok"
 "this surgery/procedure is gonna help him/her,
sometimes literally save his/her life"

its different when its not a "real surgery"
like today.
Today our youngest son Aiden
had to have a bunch of scopes and biopsies and tests of
 his mouth and throat( by his ENT,)
his lungs( by his pulmonologist,)
and of his esophagus, stomach, and intestines by his GI.
all under general anesthesia.

When its "not real surgery"
(meaning they don't do any cuts that need stitches),
they sometimes let me go into the procedure room with my baby.
They let me hold his hand and sing to him and talk him through it as he goes to sleep.
Those time are a little easier than real surgery.
 But the moment he's asleep
I am still expected to leave my baby on a hard metal table in a room full of strangers with unnatural blindingly bright lights and the chemically sterile smells that make my skin crawl
 and walk away.
and I die inside.
The same feelings of all the strangers surrounding my baby,
the thoughts of everything that could go wrong, fall upon me all at once
and again my world stops spinning.

In both situations,
The moments/hours that pass until I see my baby again are spent in a haze.
I'm thinking so much and not thinking at all.
I usually bring a book and end up reading the same paragraph over and over and over and over.
For really scary surgeries
We tend to have close friends and family that will sit with us 
and I can focus on the chocolate they bring or on whatever it is they are talking about.
But for the whole time one of my children is under,
I feel like I have stopped breathing.
I feel like I'm drowning and I'm praying 
I'm praying that someone will reach down and grab me by the hand and pull me out of this moment of a waking nightmare.
I'm praying for the specialists and doctors and surgeons,
I'm praying for the other families all sitting around us in the exact same boat.
I can look into the eyes of any other mother sitting there waiting while their whole world is back in the O.R. and it's like I am looking at myself in the mirror.
No matter the race or religion or cultural differences,
 in that waiting room when another mother meets my eyes, 
we have an immediate understanding.
And nothing in that moment matters except the children.

Years ago
,very early on in Lily's journey,
 when an unsuspecting nurse walked in on me praying and crying over a sleeping lily just hours before her second real surgery,

she told me it would get easier.

This nurse knew us really well, 
We had spent hours talking and days and day and months in her care while Lily was inpatient.
She was very familiar with Lily's diagnosis'
She knew that lily's journey was gonna be a treacherous one 
and she had also seen other parents go through similar journeys 
and to her it looked like it got easier for us "seasoned mamas of chronically ill kids" 
but what she didn't know is,
it really doesn't get easier at all,
 we just stop showing how hard it is,
 and so do our kids,
they get better at smiling through the pain, they get better at choosing joy each day.

so yes, I still die a little each and every single time my kid goes under anesthesia,
My world comes to a screeching halt every single time.
It doesn't matter if its a simple procedure or not,
 anesthesia is terrifying and it has almost taken the life of one of my babies a few times.
Then when all is over and my baby is awake and safe in my arms,
 the doctors have all met with me,
 and often new diagnosis are still raw in my ears. 
We get to either go home or back to the privacy of a private hospital room. 
and then oddly enough I really struggle to keep it together.
I spend the rest of the day struggling with tears and emotions of joy and relief and sadness and pain for my childs pain.
But the next morning I will wake up and it will be a new day. 
Most likely the child that had surgery or a procedure will wake up with a smile on their face
and I will choose joy too, 
and if they aren't feeling like smiling that's ok
cause I will choose Joy for them.
And everything will be ok.