Sunday, December 23, 2012

PTSD parents of medically fragile children

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:

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