97) The perils of special needs parenting

This is a post about me.  And if you are also a special needs parent, this is about you, too.

I started this experiment out of pure desperation to find relief from our suffering.  I knew that others in our position were also suffering and I wanted nothing more than to try to end the suffering for my son, myself and others who have been tortured by the beast we call HO Monster.  Due to my desperation and drive to find treatment for my son's hypothalamic obesity and hyperphagia, I started this Oxytocin experiment and have found some relief with our experiment so far.

We've made progress and I can celebrate our successes... but it has come at a large cost.  Some parents and blog readers have called me "tireless" in my efforts.  To the contrary, it is extremely tiring (understatement of the year) but I feel that I am a machine and I CANNOT stop trying to "change the things I cannot accept."  I work full time as a clinical psychologist and I have a marriage and another child (Sasha's younger sister).  I used to say that I "go to work to relax" when the kids were very young but the statement has never been more true than after my son was diagnosed with the brain tumor and I truly had a much easier job when I went to work to treat patients with acute and chronic mental illnesses, personality disorders, suicidal crises, etc. It strikes me as ironic that I find myself in the role of counseling others when I am certain that my stress is often as severe or worse than that of my patients.

I was recently hit with the stark realization that my best efforts may not result in my desired outcome.  Although we have found freedom from many of the horrors of HO (constant hunger and food obsession, health problems related to obesity), we have not yet been able to free him from having to live within the confines of the extremely limited and restrictive lifestyle (with a low carb regimen in a high carb world) where HO Monster still looms. This realization has hit me hard, so hard, it has stopped me in my tracks.  In the space of this stillness, I have sunk into a deep sadness and grief for the loss of his pre-brain tumor past, and great anguish and worry for his post-brain tumor future. Although my feelings are totally legitimate, I cannot afford to wallow in the grief and worry. I have too many f-ing things to do to keep my son alive and optimally well. So I put on my hat of strength, competence, and stoicism and I carry on. And while I often feel that I cannot keep up with this frantic pace of life, I also cannot afford not to keep up this frantic pace of life.  Sometimes I marvel at the fact that I have not (yet) become debilitated by a severe anxiety disorder or clinical depression given the amount of stress we have endured in the last 6 years- I honestly believe it is simply because I don't have time to become depressed. If I had to diagnose myself with a psychological condition, I'd have to say that Post Traumatic Stress Disorder may be most fitting ( and it happens to be my professional specialty).  However, I feel that the trauma that I experience is not merely from the past; it is an enduring daily experience of dealing with anticipated "disasters" (health and behavioral)  that are intimately related with his brain tumor.  The DSM-V needs to come up with a more fitting diagnosis for those of us who are special-needs parents and I propose that it be called ETSD or "Enduring Traumatic  Stress Disorder."

Sometimes exhaustion, bedtime, and sleep are my only friends.  It is the only time I can escape my sorrow, gnawing uneasiness, and responsibilities of special needs parenting.  Too tired to stay up late reading PubMed endocrine papers I can barely understand, I collapse into my temporary escape of slumber, only to wake up to start the tiresome process all over again the next day.

If you relate to what I've written, feel free to share your comments.  It will surely help us all feel less isolated in this lonely and weary world we call special needs parenting.