Saturday, November 8, 2014

PTSD and The Special Needs Parent

It has been 13 years but I often find myself still on that hospital bed. I have dreams and flashbacks.  I suddenly feel claustrophobic; I find it hard to breathe. I'm frightened for my son and myself. I want to speak; I want to SHOUT but I lose consciousness.  I awaken to discover myself in the hallway being transported into the operating room.  I've lost a great deal of blood. My thoughts are of Cody, the son that I have yet to see ... our baby that his dad and I named months ago. I awaken as the the doctor is beginning the caesarean. The scalpel make its initial slice into my abdomen; I can see the reflection of this in the doctor's glasses. In and out of consciousness, I begin to pray. I pray loudly for Cody.

He is rushed to the right hand corner of the room. There is no crying. I can only hear the hurried actions of hospital personnel. Minutes tick by and still nothing. Finally, I hear a faint cry. I don't know how much time transpired but he is then held next me to my on my right hand side. He's all bundled in a pink, blue and white generic hospital blanket. I don't remember the person holding my son; I can only envision the hands and arms. I look into his beautiful face. He looks so much likes his older sister. His eyes are open. I again lose consciousness.

It's PTSD - post traumatic stress disorder. It's often spoken of in relation to veterans and the battles they have been a part. For more info on PTSD:  http://www.mayoclinic.org/diseases-conditions/post-traumatic-stress-disorder/basics/symptoms/con-20022540    There has been a great deal of research that has found parents of children with special needs have stress levels comparable to those in combat. I may not have believed that if I had not experienced it for myself.

The symptoms have never gone away completely but the severity of living with that day comes and goes. This is the second period of time that it has been most difficult. I believe the reason stems from some challenges we are currently facing and as Cody is transitioning into his adolescence.

I'm not sharing this for sympathy but to share the story to hopefully be a help to others. I encourage any parent dealing with depression, anxiety, PTSD symptoms that you are not alone. If you are struggling, seek help. Help can come from a myriad of resources. Personally, therapy has been a great help for me. Also, for me it's a personal relationship with God.

As our children with profound disabilities age, there are great joys but also grief mixed in as well. It's a different kind of grief. It's heart wrenching  at times to see Cody struggle with his body. It's also a great source of encouragement that he never gives up.
My two children in a candid pic. I'm a grateful mom. 




2 comments:

  1. Beautifully raw and honest.

    I had nothing near like what you had with Cody, but our second child was an emergency C-section as well.

    The cord prolapsed and it also made a double loop around Jon's neck and under one arm, literally choking him with every contraction. The epidural for the surgery (which felt like it was paralyzing me as it was going in) didn't work and I felt most of the c-section because I was too scared about the baby to say anything about me. I literally sobbed and held hands with my midwife who graciously stayed with me during the C-section.

    I just wanted them to get him out as fast as humanly possible. Then he was in the special nursery for a while as in addition to everything else, he'd inhaled meconium.

    To top it off, somehow, I ended up on a completely different floor for recovery than normal and couldn't go see him. Afterwards, I remember wishing everyone would just go away. It was such a shocking experience, I just wanted to retreat into a cave with my baby. It was a slow process to move past it and, of course, 18 years ago, who would have thunk of PTSD? Even now, when I reflect on that birth, my heartbeat can get to racing.

    I can imagine what is equally difficult is that with a child with physical special needs, everything is different from what friends and neighbors are experiencing. All the normal “heart-attack” moments (like when he or she climbs a tree or rides without training wheels) are replaced with sniffles that turn into raging chest colds because of low muscle tone. Or bed sores. Or fevers with no known origin. Or worries about “what’s it going to be like in 10 years.” So, there's rarely a time to just relax and not be "on guard" as it were.

    God bless you, Annie. May God give you complete rest in all the small moments you are able to relax and not be on “duty.” And increase your sleep and keep you healthy and give you many moments of joy. And the same for your sweet Cody and your whole family! Thank you for sharing your heart with all of us.

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    1. Clellie,
      Thanks so much for sharing your story. What is supposed to be one of the most joyous experiences as a mother can turn into one of the most traumatic. It's a reminder of the fragility of life.

      I believe that as most parents that experienced a traumatic birth resulting in a child with disabilities, it's difficult to not be reminded of the trauma regularly.

      I think we all have a story to tell. In sharing, it helps for us to own our story instead of it owning us!

      Annie

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