October 1, 2017
As Facebook likes to show me, there are memories that I
remember like it was a moment ago and then there are those that I look at and
try to place them in my mind. I get that
your mind likes to only give you what you can handle and will protect you from
the rest…but then there are the memories that you cannot possibly forget as
they are etched in your memory like someone layered them in with a laser.
Yesterday we looked at a memory of Bradley that took us back
to his very first surgery, still in the PICU and fighting to keep an IV line
working. We were coming to the end of
the long ten days that we spent in the PICU and we were trying to mentally
prepare to make the transition to the regular Pediatric floor to learn how to
feed Bradley through his G-Tube. At the time,
my hand still shook like crazy every time I tried to insert the catheter end
into the port site, I can’t even remember now how many times I fumbled on my
way to learning how to do the things for Bradley that keep him here.
The last couple of days there have been other posts about
that time, and I felt myself drawn into those memories, the good and the
bad. The moment when the hospital staff stopped
looking at us as mere parents of a patient and starting calling us by
name. When the head of the PICU turned
and look at me when I voiced my concerns and he not only listened but agreed,
implementing a plan that would work out best for Bradley. The Nurse that shared Eric’s name and walked
around his shift with Morphine dialed in and ready to go at a moment’s notice
because Bradley would go from sound asleep to wide awake and fighting within
ten seconds and we had to keep that last IV line in place for as long as
possible.
At the time, we didn’t have a blog to talk about Bradley,
and it was so cumbersome to try to let everyone know what was happening with Bradley
so we would publish notes on Facebook.
Sometimes I would read Eric’s notes that he posted, and sometimes I
would see them years later, even though I was tagged in them. I read some this week that I am not sure I
ever read the first time. And they made
me laugh, and cry… and I was brought back in a flood of memories to moments
where we actually questioned whether our son would be coming home with us from
the hospital. I remembered Eric and I
taking turns standing by Bradley’s bed throughout the night. I stood there and kept one hand holding his,
and one hand on his leg, just resting there because he kicked out in his
comalike sleep. Not a big deal, except
he had a tube stretched straight up from his belly to an opened syringe that
constantly vented his belly. To this
day, I can still see the episodes of M*A*S*H that played during my watch,
keeping my company and awake while Eric caught some sleep. The Nurses thought we were crazy until they
saw Bradley star to kick, then they brought us a chair high enough to sit by
his bed. Then they brought me a rocker
and a cup of tea the night he kicked so hard he sent his button flying and both
his parents into a panic. I sat in a
rocker and rocked my son for the first time in nine days, able to hold him like
that without tubes and wires and such while we awaited the surgeons to come and
see if he was headed into surgery or if the button could be placed at bedside…we
got lucky, it was bedside. I gave
Bradley to Eric and let him rock our son for a few minutes they hooked him back
up and decided that the gravity feed they had set up was too dangerous and
instead chose a side venting that left him no chance to fling his button
through the air again with a quick little kick.
Good Grief. Some things you can’t
forget even when you try.
And so, by the Grace of God, here we are, more experienced
but not really braver. Emergencies are
things I just have to breathe through. On the same day; but a year ago, I had Eric
in the hospital with chest pain, seven years after Bradley was trying to get
strong enough to come home. And I was
busy sharing Eric’s medical history, his medicines, asking questions and
waiting for answers. Definitely more
vocal now. At the same time, I was
texting my girls, were they all right, was their brother still sleeping. When I sent them to bed, I told Madison to
keep her phone on her pillow. I had the
app turned on to see Bradley, monitoring him the whole time. I watched him sleep and turned up the phone
to hear him breathe when I couldn’t see it.
At 1:30 am, I called Madison and told her to meet her brother on his way
into the hall and I was on the way to get him and put him back to bed, Dad was
in a room to stay overnight. I got home,
rocked Bradley back to sleep then showered and slept for a few hours before I
got everybody up and off to school and back to the hospital to be with
Eric. Never once did I panic, in my head
I understood that he was doing well, that we were out of the woods this
time. And I had it all together until I
walked into his room and saw him eating his bland breakfast and smiling at me,
telling me he could go home soon and I just smiled at him, and felt myself
actually take a real breath for the first time in hours. My head knew, but my heart didn’t believe until
I saw him again and knew he was all right. Later I would wonder about not being more
upset through it all. I was almost too
calm, to some maybe uncaring? But then I
realized that when you educate yourself you know some things, which helps. But when you live through the flip out of the
frying pan into the fire you get a whole new view of the world happening before
you. The worst news comes with the most
questions and clarifications and then you process as quickly as you can until
you have some grasp on the situation…then you can let the panic in, but
sometimes it just takes so much more energy than you have to spare, so calm
waiting settles in and sits with constant prayers as you wait. And
that’s how I get through. I see this in
my girls too. I took Eric by each girl’s
school, just to call them to the office to hug their dad and know he’s ok. These mighty little warriors that pulled
themselves up, took care of their brother and each other throughout all of it;
crumbled into tears as they buried their heads in his chest. Then I felt my own tears of relief, of
gratitude that Eric was okay, that we made it through a rough night, that these
little girls were mine to love, that these little girls have learned to hold
the line until it’s okay to let it go. I
think that Eric and I are teaching them that and that makes me think we might
be doing something right.
Welcome to October folks.
It’s time to invite you in to see this life we lead and the sweet
children that make it all work, the parents that love them all and the extra
chromosome that has found a way to bring us one incredible little soul to love
who teaches us something wonderful and new every day.
31 for 21! Down
syndrome Awareness! October absolutely
ROCKS!
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