Reflections of and on a probably Asperger's parent parenting an Asperger's kid (or 2)!

dragon pups

dragon pups

Saturday, May 19, 2012

Changing by Choice

I was thinking about all my private drama today... about the power struggles at work, and the tension with family in watching the kids, and the gnawing fear about finances.. I was thinking about how yesterday I felt like I was sinking into my own private hell and I wanted to remind myself that the world is bigger than just my drama...

MAYBE I was just trying to convince myself that things really aren't THAT bad by comparison...

And I remembered...

A year ago this month my son was suffering from The Horrible Rash.  About this time we were 5 weeks into his bout with HSP (Heinoch Scholein Purpua - a rare autoimmune disorder).  This would have been the point at which he was not only covered with red and purple blotches as his capillaries exploded, but we had been to the ER twice because he vomited every evening.  He was unable to walk any evening after 4:30 pm because the joint swelling was too painful. His scrotum had turned a solid dark burgundy. He was missing lots of school. He would have less rash every morning and more every night.  We were having his urine tested weekly to be sure that he wasn't going to lose a kidney.  This is about the time we went to the pediatric immunologist at UVA and were told that 50% of patients have "kidney involvement", and that it had to go on for another 6 to 7 weeks before any kind of treatment would even be considered.  We were told what 3 doctors and WebMD had already told us: there is NO treatment, it simply goes until it doesn't.  The developmental pediatrician at UVA told us it was clearly stress related, which no other doctor would deny or support.

At this time last year I watched my 6 year old screaming in pain to be picked up and carried when he walked off the bus every afternoon.  At this time last year I watched my 6 year old's body attack itself every day.  At this time last year my son hurt, and didn't get better, and there was NOTHING we could do about it...

You know... things are NOT that bad right now.  My children are SAFE and they are HEALTHY and they are LAUGHING.  

I remember a conversation I had with another special needs dad last summer who's family was encountering some profound changes.  I remember telling him that I was ready for meteors, or unicorns, or the trees to get up and walk away...

A teacher told me today that she works with many parents of special needs kids that are not as accepting of their child's "specialness" as I am.   When you think you will loose even what you get, there is nothing left to fear.  It's not about clinging to the hope of a cure, or about mourning the loss of dreams, or about doing the therapy "right" so there's a chance of independent living.

Damn it, CHERISH e-v-e-r-y s-i-n-g-l-e h-a-p-p-y m-o-m-e-n-t!!!!!!!!!!!!!!!  

I have often been haunted by a clip that we saw in middle school about the Holocaust. They were interviewing survivors and trying to impress on us as students the horrendous scope of it. It was gross and riveting.  But I didn't feel FEAR until one very elderly woman in an overly bright colored dress said, "Hold on to the happy memories.  Work to keep them - because you will NEVER be able to forget the bad ones."

THIS day I am going to CHOSE to dwell in happy memories, to ponder the gift of my loving family and friends, to fill myself with the love of playing and giggling.  I will take my medicine, and I will deny the tears, and a small room in the back of my head will still be looking for ways to get out of this scrape, but I will NOT let them absorb me.  

'Cuz dude, it is NOT THAT BAD...


  1. Thanks, I needed to hear this today. You have inspired me to dwell on the happy times and enjoy the moments more. Going through a hard time right now but maybe its not so bad.

  2. "Hold on to the happy memories. Work to keep them - because you will NEVER be able to forget the bad ones."

    So true. Thank you for sharing this!


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