I just wrote about "B"'s early entrance
into the world and his serious complications since that time. I live with
reminders daily. Something as simple as his toothless grin, is a reminder of
his difficult beginnings. So when his medical team we are now using was so
interested in this past surgeries and asked for his complete medical history, I
happily said yes. I followed through with the request and just received the
information.
I opened the simple brown envelope and began
reading the thick history of our medical journey. This is the same medically
history that I wrote about just recently on this blog and need to retell so
very often. I began reading the unattached medical recount of our baby's life
and I started to cry. Then, I sobbed uncontrollably. I was overwhelmed.
Somehow, reading someone else's account of our lives brought me back to that
moment while I held my baby close and prayed for his safety, every moment of
everyday. I remembered things I had actually forgotten or at least blocked out
for a while. I almost relived the whole event.
I could see nurses and doctors more clearly-
people that I had thought I had forgotten what they looked like. I could smell
the antiseptics. I could hear the beeps from the life saving machines. I
remembered the way he felt so tiny in my arms and sleeping with him papoosed
against my chest for the entire duration of our stay. I remembered being held
close by a friend as they drew blood from my crying sick baby, once again. I
remembered the feeling of helplessness. I remembered the doctor telling me we
needed to have surgery in the morning. I would only allow this one doctor that
I had bonded with so closely to get my little one. My little one and our family
seemed to touch a heartstring in this doctor. He visited us every morning
before his rounds, during his rounds, and just before he went home. He called
during the day to make sure I had eaten twice as I refused to leave our baby
alone- I never left his side except when my sweet Honey could come and I would
shower. Our baby boy was laid upon my chest for most of his hospital stay and
due to limited child care with our oldest anaphylatic child at home- could not
always come. I remembered this amazing doctor coming in full scrubs and he
refused to put our 7-week-old preemie, in a bed. Instead, he tenderly held my
baby close to his chest and walked him in his arms to surgery. I swear at that
moment that man grew angel wings and briefly showed me his angel halo. How many
doctors will do that? How could I have emotionally blocked so many of these
memories?!?
There are still more memories that came rushing
back over me that even to this day, I cannot bear to type for you to read… they
are just too scary and to type them here, makes it too read.
Such is normal for the parent of children that
are medically fragile or parents with children that suffer from anaphylaxis.
Posttraumatic stress disorder was once thought to be for soldiers only. But,
the medical community is now beginning to diagnose parents of preemie babies
and medically fragile children as having posttraumatic stress disorder as well.
Everywhere we look as parents, the world is a battlefield filled with potential
"mines" that appear seemingly innocent and can change everything in
the matter of a moment.
Thankfully, we did not live the life of the NICU.
I feel blessed beyond words. I have read their stories in some of my most
favorite blogs. I have cried for their children and their experiences. I have
mourned the loss of a "normal" pregnancy myself. But when I read their words of sorrow when
they needed to leave their teeny tiny babies in the care of others at the NICU,
I thankfully cannot identify with that. I cannot imagine their heartaches,
fear, remembrances etc.
I know my experience is short lived in comparison
to many other parents that have had prolonged or reoccurring hospitalizations.
For that (and so much more) I am so grateful.
I have lived with my tiny one having a tumor
(thankfully benign) and a potentially life threatening staff infection. I do
live with two beautiful children with life threatening allergies. I have seen
my youngest struggle with what so many take for granted. I have seen my
children struggle to breath from severe asthma and severe allergic reactions.
Daily, we parents of the medically fragile child,
walk on the "battlefield filled with land mines". These "land
mines" come in the form of pretty cupcakes with tempting sprinkles,
playdough, toothpaste, or playground equipment that was played on with sticky
peanut butter and jelly hands. All of these seemingly innocent moments, can
change our world in a second, and as a parent we must be in tuned and prepared
at all times. As a parent of children with life threatening food allergies, you
can never let your guard down. And as a parent that has watched
their child fight to survive, you also can never forget and you live with that
fear buried deep in your minds- but always present.
It is bizarre that the simplest things can bring back
these powerful memories and they come in as an almost paralyzing flashback.
Taste, sounds, smells, visions all become so clear. Have you had a similar
experience?
Here are a few other sites that mention PTSD & anaphylaxis and/or medically fragile children:
